I have been obsessing... So, either I need to go to the doctor and get a medication adjustment, or I need to speak out and do something about my obsession. Today the only good choice is the later: Speak out!
My obsession is simple: My kiddos! The mass shooting yesterday in San Bernardino, CA has opened a flood gate of emotions! Fear. Anger. Disgust. Confusion. These are the emotions I expect to have. Yet, I am also feeling love and gratitude...
Being a mother of two sons with Down syndrome has brought out the inner "momma bear" to an almost extreme level. As much as I would like to have my boys talk to me about there day at school. They simply cannot... yet. As much as I would like to be able to let my boys play outside without me hoovering over them. I simply cannot... they like to wonder off and have zero "stranger danger" skills. As mush as I would like to read a book at the side of a pool while they play. I simply cannot... they can be "over friendly" with people, especially cute girls... yikes! On the same hand I worry about them defending themselves in a dangerous situation. Caleb (the 12 year old) does not even recognize that when a dog growls that means danger (that is more autism than down syndrome). This is why the events of yesterday are so profoundly scary to me... It is not hard to simply say, "What if... my boys would have been at that facility?"
I am not complaining. Truly. I am not. I love my boys! I would do anything for them. And this is where the seemingly opposite set of emotions come in play. I am so grateful that we (our little family) are where we are. Not the physical location, but as a family. I am thankful that I am in a place in life that I can advocate for my boys and that my husband supports this role. When Joshua (our 8 year old) was born we knew some of the immediate challenges we would face with him. We also understood the long term implications as well, that both our children have a life long cognitive disability! They could go on to great things in their own right but cognition would ALWAYS be an issue. For the rest of their lives there would be a need for help. At this very moment we (Mom and Dad) are able to be this help. I am blessed beyond words that Frank went back to school so I could be that primary advocate and care giver to my boys!
Yet... again my heart breaks once more... So many families with special needs kids must have both parents working, or have a single parent situation. Facilities like the one in San Bernardino are vital to so many individuals and families. And at some point in time may be needed for my boys as well. The investigation is so fresh we have no idea of motive or if the individuals with special needs were even in that room. But the thought still runs through my mind, "My kiddos would have hugged the shooters!" My boys would be the run right into danger only because they wanted a hug or to say hi... That kind of blind love makes me cry...
Thursday, December 3, 2015
Thursday, April 17, 2014
Margaritaville ... what?!
One hot late summer/early fall day we were enjoying some family time in St. Louis (30-40 minutes from home). All of us were sweaty and gross by the end of the outing when Frank remembered that an acquaintance was having a family birthday party only a few miles away. He got this "great" idea that we would just find some clearance rack clothes and go enjoy some more family fun.
The plan was working... I found some great sale items. The boys were changed, hair was brushed and a little of Dad's cologne on ... we were ready. We had a great time! It wasn't until we got home and the boys were in bed that I started thinking about a comment made by one of the other guests... Caleb was being ... well... Caleb... and he was greeting everyone with a smile and hug. After Caleb invaded this complete stranger's personal space the man simply stated, "Well... he's obviously going to have a good time..."
People have said some pretty strange things to me... but, most are the sort of thing that I laugh at and think, Oh, when you think about what you just said you are going to be really embarrised! But I always knew the motive behind these comments (most meant to be encouragement but just came out wrong). But this one threw me for a loop... what was I missing? ... the guy was kind to Caleb... so what was so "obvious" about Caleb (just Caleb) having a good time... it was not said in a "poor boy with special needs" sort of tone... I was missing something... something obvious... but what?
A day or two later I was getting Caleb ready for school. I pulled out his new shirt, because it is a beautiful blue and makes his eyes pop! As I admired my handsome young man, looking so stylish and preteen'ish it hit me! As I read the screen print on this t-shirt I realized what it said: MARGARITAVILLE!
Oh my goodness... I bought and dressed my 10 year old son with Down syndrome in a shirt that said Margaritaville on it! WOW... talk about a bad mommy moment! I instantly became embarrassed! So, yes... Caleb was going to have "a good time" according to his t-shirt... Praise God, I never sent him to school in that shirt, or I might have been even more humiliated by the school. I could hear the phone call, "Mrs. Caines, could you PLEASE bring Caleb a different shirt, because advertising alcoholic beverages is strictly prohibited at the elementary school - or any public school for that matter!"
The fact that I am not the "party" type or the "get wasted" sort makes this shirt even more funny. To say the least I have turned "Margaritaville" into my painting/work shirt. Evey time I put on "Margaritaville" I just laugh at myself. Life can be so funny... can't it?! Because... when life gives me limes I make Margaritas (even if they are virgin)!
The plan was working... I found some great sale items. The boys were changed, hair was brushed and a little of Dad's cologne on ... we were ready. We had a great time! It wasn't until we got home and the boys were in bed that I started thinking about a comment made by one of the other guests... Caleb was being ... well... Caleb... and he was greeting everyone with a smile and hug. After Caleb invaded this complete stranger's personal space the man simply stated, "Well... he's obviously going to have a good time..."
People have said some pretty strange things to me... but, most are the sort of thing that I laugh at and think, Oh, when you think about what you just said you are going to be really embarrised! But I always knew the motive behind these comments (most meant to be encouragement but just came out wrong). But this one threw me for a loop... what was I missing? ... the guy was kind to Caleb... so what was so "obvious" about Caleb (just Caleb) having a good time... it was not said in a "poor boy with special needs" sort of tone... I was missing something... something obvious... but what?
A day or two later I was getting Caleb ready for school. I pulled out his new shirt, because it is a beautiful blue and makes his eyes pop! As I admired my handsome young man, looking so stylish and preteen'ish it hit me! As I read the screen print on this t-shirt I realized what it said: MARGARITAVILLE!
Oh my goodness... I bought and dressed my 10 year old son with Down syndrome in a shirt that said Margaritaville on it! WOW... talk about a bad mommy moment! I instantly became embarrassed! So, yes... Caleb was going to have "a good time" according to his t-shirt... Praise God, I never sent him to school in that shirt, or I might have been even more humiliated by the school. I could hear the phone call, "Mrs. Caines, could you PLEASE bring Caleb a different shirt, because advertising alcoholic beverages is strictly prohibited at the elementary school - or any public school for that matter!"
The fact that I am not the "party" type or the "get wasted" sort makes this shirt even more funny. To say the least I have turned "Margaritaville" into my painting/work shirt. Evey time I put on "Margaritaville" I just laugh at myself. Life can be so funny... can't it?! Because... when life gives me limes I make Margaritas (even if they are virgin)!
Friday, March 28, 2014
If These Walls Could Talk
Sorry for the delay... Life is moving faster than I am right now... Shortly after the last post we got horrible news that my mother-in's lung cancer has returned... deep breathes... (pausing to pray)...
As a result of this devastating news Frank and I began praying about moving closer to our families in Kentucky. We also asked God to make it abundantly clear because we don't do good with subtle ... well... He did! With in a two week time frame Frank had 2 interviews in Lexington, Kentucky, he signed a contract with one of them, he went with his mom to an oncology appointment, and we put an offer on a house... another deep breath... In the last couple months we have put our house on the market and have made several trips to Kentucky with loads of stuff. Every spare moments the boys are in school is being spent cleaning, painting or packing. And also remain insanely busy gathering information for the mortgage lender, talking with the boys' new school district, working with realtors in Illinois and Kentucky.
Just this week I was painting yet another room in our Mascoutah house. I was trying with all of my limited ability to get it completely done before Caleb and Joshua got home from school. But, standing at the top of the latter with a paint brush in hand I began feeling a bit nostalgic. I thought with mixed emotions, What if these walls could talk?!
Well... the walls could tell some horrible things! Like the fact that Frank and I disagree. There have been some down right ugly and shameful verbal fights. I wish I could say that we did not argue in front of the the boys but that would be a lie. I am pleased to report we have learned to fight a bit more "fair"... by setting some boundaries and owning our emotions rather than taking them out on each other. Or, the walls might tell you that I am not always patient with the boys. I have raised my voice more than I should. I have scolded out of anger/emotion rather than control. And I have said things I wish I could take back. Or, maybe the walls would share that I have struggled with accepting Down syndrome in my life. There have been many of tears shed over medical issues, therapy schedules, educational shortcomings, behavior problems, social embarrassments, sleepless nights... so on... and so forth... I have (and still do) wrestled with sever feelings of inadequacy - not believing that I am the "right" mom for these precious special needs boys... very deep sigh...
Despite all of the dark secrets these walls could tell, there are far more beautiful memories to be told! The walls echo daily with the laughter and chatter of two bothers who love life! The wall vibrate with the sound of boys' feet running laps in our home. There are sounds of great cheer as the boys accomplish new tasks that have taken years to develop. There are hours upon hours of stories being read. There are dance moves that create family supper starts. There are songs sung a bit off key. There are creative modern art (now painted over) on the walls. There are car races, ball games, smiles, hugs, kisses, jokes, adventures, discoveries, performances, songs, family work-outs, laughter...These walls are flooded with LOVE!
Just because God has blessed us with two boys with Down syndrome DOES NOT mean we have a perfect, story book life! I would argue that quite the opposite is true; that through God's divine wisdom He gave a very broken Frank and Betsy two amazing (but far from perfect) boys to teach us how to become whole, forgiving, grateful and loving ... Thank you, Lord, for my family and this home!
As a result of this devastating news Frank and I began praying about moving closer to our families in Kentucky. We also asked God to make it abundantly clear because we don't do good with subtle ... well... He did! With in a two week time frame Frank had 2 interviews in Lexington, Kentucky, he signed a contract with one of them, he went with his mom to an oncology appointment, and we put an offer on a house... another deep breath... In the last couple months we have put our house on the market and have made several trips to Kentucky with loads of stuff. Every spare moments the boys are in school is being spent cleaning, painting or packing. And also remain insanely busy gathering information for the mortgage lender, talking with the boys' new school district, working with realtors in Illinois and Kentucky.
Just this week I was painting yet another room in our Mascoutah house. I was trying with all of my limited ability to get it completely done before Caleb and Joshua got home from school. But, standing at the top of the latter with a paint brush in hand I began feeling a bit nostalgic. I thought with mixed emotions, What if these walls could talk?!
Well... the walls could tell some horrible things! Like the fact that Frank and I disagree. There have been some down right ugly and shameful verbal fights. I wish I could say that we did not argue in front of the the boys but that would be a lie. I am pleased to report we have learned to fight a bit more "fair"... by setting some boundaries and owning our emotions rather than taking them out on each other. Or, the walls might tell you that I am not always patient with the boys. I have raised my voice more than I should. I have scolded out of anger/emotion rather than control. And I have said things I wish I could take back. Or, maybe the walls would share that I have struggled with accepting Down syndrome in my life. There have been many of tears shed over medical issues, therapy schedules, educational shortcomings, behavior problems, social embarrassments, sleepless nights... so on... and so forth... I have (and still do) wrestled with sever feelings of inadequacy - not believing that I am the "right" mom for these precious special needs boys... very deep sigh...
Despite all of the dark secrets these walls could tell, there are far more beautiful memories to be told! The walls echo daily with the laughter and chatter of two bothers who love life! The wall vibrate with the sound of boys' feet running laps in our home. There are sounds of great cheer as the boys accomplish new tasks that have taken years to develop. There are hours upon hours of stories being read. There are dance moves that create family supper starts. There are songs sung a bit off key. There are creative modern art (now painted over) on the walls. There are car races, ball games, smiles, hugs, kisses, jokes, adventures, discoveries, performances, songs, family work-outs, laughter...These walls are flooded with LOVE!
Just because God has blessed us with two boys with Down syndrome DOES NOT mean we have a perfect, story book life! I would argue that quite the opposite is true; that through God's divine wisdom He gave a very broken Frank and Betsy two amazing (but far from perfect) boys to teach us how to become whole, forgiving, grateful and loving ... Thank you, Lord, for my family and this home!
Wednesday, January 29, 2014
Amazing Community... Here's to Mascoutah!
We live in an absolutely AMAZING community! The true community is not the physical location of our fun town, it is the people who live here! As a mother of two boys with special needs (Down syndrome to be exact), the community can be a "scary" place... Will other kids accept my boys? Yes and at times no. Will my boys get picked on? Yep, and do some "picking" of their own. Will they fit in? Yes at times and no at times. Will they get a good education? In Mascoutah, they will for sure! Will they get the services they need to succeed? Yep, but I have to be willing to be a team player. Kids will be kids... but kids do not have to be "mean"! The example is set by the adults!
Mascoutah School district # 19 (in Illinois) is made up some very talented and truly loving people - from our bus drivers, to teachers, to personal aids, to principals, to therapists, to food servers, to custodians ... I know I have missed a few, sorry! I wish I could write about the specific ways each have touched our lives, but that would take up an entire book... Today I want give a shout out to " Suz" (Ms. Freedrick) the adaptive p.e. teacher!
So what is Adaptive P.E.? Glad you asked! Adaptive P.E. is a physical education class offered to children who may other wise have a difficult time participating in a typical p.e. class. The class allows children with physical and/or cognitive delays an opportunity to not just have "free play" but have actual physical education! Fist, the fact that our school district even offers this class is very forward thinking! Second, the reason it is successful is because of Ms. Friederich! Great concepts are only as good as those who make them happen...
Ms. Friederich implements a peer buddy system for adaptive p.e. Essentially, some of the older students are "chosen" to be helpers in this class... SCORE! These kiddos get to have extra p.e. once a week - super fun for them! And my kids (and other special kiddos) get to have a one-on-one friend for p.e. and other school events - bonus! As Mom I see my kids being accepted by their peers and sensitivity of special needs being taught to children at a young age! At times it makes me want to cry (happy tears of course)... It has become "cool" to hang out with the adaptive p.e. class and this goes far beyond the four walls of the school gym.
Thanks to the Ms. Friederich we can be at the city pool and I will hear a student yell with enthusiasm, "Hey there's Caleb/Joshua!... Want to play?!" Or, we have friends (like Ally) offering to go sled riding with us on snow days... Or we have friends (like Jaden) joining us at our local World Down Syndrome Day Celebration because he was a "buddy" to one of my kids! Adaptive P.E. is reaching far beyond school and making an impact on the community (and my family directly).
Mascoutah Elementary has also established a What's U.P. (Understanding People) training for their older students. This is a way of talking about special needs or unique issues with the students in a fun way... taking the scary out and replacing it with understanding!
We live in an AMAZING community because of the people! Thank you Mascoutah! But, I know Mascoutah is not the only amazing community... to be honest we would just be another small town/ suburban community if it were not for people like Ms. Friederich and all of her "buddies"! I challenge you to go and make your community amazing! Pass on love and understanding... And above all set an example worth following!
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| Joshua & Ms. Friederich |
So what is Adaptive P.E.? Glad you asked! Adaptive P.E. is a physical education class offered to children who may other wise have a difficult time participating in a typical p.e. class. The class allows children with physical and/or cognitive delays an opportunity to not just have "free play" but have actual physical education! Fist, the fact that our school district even offers this class is very forward thinking! Second, the reason it is successful is because of Ms. Friederich! Great concepts are only as good as those who make them happen...
 | |
| Jaden & Caleb |
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| Ally, Caleb & Joshua |
Mascoutah Elementary has also established a What's U.P. (Understanding People) training for their older students. This is a way of talking about special needs or unique issues with the students in a fun way... taking the scary out and replacing it with understanding!
We live in an AMAZING community because of the people! Thank you Mascoutah! But, I know Mascoutah is not the only amazing community... to be honest we would just be another small town/ suburban community if it were not for people like Ms. Friederich and all of her "buddies"! I challenge you to go and make your community amazing! Pass on love and understanding... And above all set an example worth following!
Wednesday, January 22, 2014
Super Powers
Hello everyone! My name is Betsy Caines. I have been blessed with two natural sons (Caleb 10 & Joshua 6) who have Down syndrome!
The "nerd" name (scientific term) for Down syndrome is trisomy-21. Explanation: we all get 23 chromosomes from mom & 23 chromosomes from dad. So, with trisomy-21 there is an extra #21 chromosome. For more information visit http://dsagsl.org/about-down-syndrome/ . Medically Down syndrome is considered a mutation. When Caleb (now 10) was just a baby Frank and I were joking around saying that when Caleb became a teenager he would be a "teenage mutant"... laughing, so we would not cry, the conversation went from bad to worse.. we decided that he must have some "super powers"... because isn't that what mutants do? Have Super Powers?! Now I have two "mutants"... So what are Caleb and Joshua's "super powers"?!
One challenge that I face is recognizing and nurturing Caleb and Joshua's strengths... We all have likes and dislikes, abilities and inabilities, or strengths and weaknesses. Though it should not be a big surprise... my boys have very different personalities, thus their talents are also very different.
Joshua (my 6 year old) is... shall we say... a "leader" (bossy might be a better fit). He likes to be in charge! He enjoys being the center of attention. If I am not giving him enough of my attention when HE thinks I should he will blurt out, "Mommy, look at you!" Translation: Mommy look at what I am doing! I want your full attention, not just your head nod. I want all EYES on me! I think I am doing something great and I want you to think it is great as well! What cracks me up is that Joshua can get people to do just about anything! He has a plan and Joshua knows how to work it. He often gets Caleb to follow him in his game of "Joshua says"... He will tell you what to do and how to do it (and he is so cute, funny and demanding that lots of people will do what he says!). So my challenge is how do I help develop the positive characteristics and discourage the negative? Joshua's bossiness can turn quickly into bullying. Ironically, I use to worry that Joshua would get bullied, never dreaming he might be the bully... We work at taking turns... We help him learn to share the spot light... We encourage Joshua to praise the accomplishments of others... I believe Joshua has the super power of being IN CHARGE!
Caleb (my 10 year old) on the other hand is much different. He loves people but does not insist on being the leader or the center of attention. He likes to be the encourager! Caleb is the ultimate greeter. He also likes showing physical affection. This can be quite an issue... with puberty knocking at the door his peers are going to be less understanding when he wants to pass out endless hugs. Once the hugging begins it is like the plague - Caleb spreads them to everyone in his path! Caleb's hugs can also have a very magical effect on people. There have been times when he has hugged perfect strangers (despite my efforts to prevent it) and they would just bust into tears! Several just simply stated, "I really needed that..." As you can imagine, I want Caleb to have a loving spirit, but there are some people that I don't necessarily want him hugging... and those who don't want to be hugged! So, then what? How do we encourage him to show love and kindness? How do we teach personal space? We are teaching him to give high-fives and to ask before hugging... We are trying to set boundaries... We are teaching him to use words instead of touching... it is a work in progress... Still yet, Caleb can put a smile on some faces that look like they have not smiled in decades! So, Caleb's supper power is LOVE!
We all been created with unique talents and gifts... So, what's your supper power?
The "nerd" name (scientific term) for Down syndrome is trisomy-21. Explanation: we all get 23 chromosomes from mom & 23 chromosomes from dad. So, with trisomy-21 there is an extra #21 chromosome. For more information visit http://dsagsl.org/about-down-syndrome/ . Medically Down syndrome is considered a mutation. When Caleb (now 10) was just a baby Frank and I were joking around saying that when Caleb became a teenager he would be a "teenage mutant"... laughing, so we would not cry, the conversation went from bad to worse.. we decided that he must have some "super powers"... because isn't that what mutants do? Have Super Powers?! Now I have two "mutants"... So what are Caleb and Joshua's "super powers"?!
One challenge that I face is recognizing and nurturing Caleb and Joshua's strengths... We all have likes and dislikes, abilities and inabilities, or strengths and weaknesses. Though it should not be a big surprise... my boys have very different personalities, thus their talents are also very different.
Joshua (my 6 year old) is... shall we say... a "leader" (bossy might be a better fit). He likes to be in charge! He enjoys being the center of attention. If I am not giving him enough of my attention when HE thinks I should he will blurt out, "Mommy, look at you!" Translation: Mommy look at what I am doing! I want your full attention, not just your head nod. I want all EYES on me! I think I am doing something great and I want you to think it is great as well! What cracks me up is that Joshua can get people to do just about anything! He has a plan and Joshua knows how to work it. He often gets Caleb to follow him in his game of "Joshua says"... He will tell you what to do and how to do it (and he is so cute, funny and demanding that lots of people will do what he says!). So my challenge is how do I help develop the positive characteristics and discourage the negative? Joshua's bossiness can turn quickly into bullying. Ironically, I use to worry that Joshua would get bullied, never dreaming he might be the bully... We work at taking turns... We help him learn to share the spot light... We encourage Joshua to praise the accomplishments of others... I believe Joshua has the super power of being IN CHARGE!
Caleb (my 10 year old) on the other hand is much different. He loves people but does not insist on being the leader or the center of attention. He likes to be the encourager! Caleb is the ultimate greeter. He also likes showing physical affection. This can be quite an issue... with puberty knocking at the door his peers are going to be less understanding when he wants to pass out endless hugs. Once the hugging begins it is like the plague - Caleb spreads them to everyone in his path! Caleb's hugs can also have a very magical effect on people. There have been times when he has hugged perfect strangers (despite my efforts to prevent it) and they would just bust into tears! Several just simply stated, "I really needed that..." As you can imagine, I want Caleb to have a loving spirit, but there are some people that I don't necessarily want him hugging... and those who don't want to be hugged! So, then what? How do we encourage him to show love and kindness? How do we teach personal space? We are teaching him to give high-fives and to ask before hugging... We are trying to set boundaries... We are teaching him to use words instead of touching... it is a work in progress... Still yet, Caleb can put a smile on some faces that look like they have not smiled in decades! So, Caleb's supper power is LOVE!
We all been created with unique talents and gifts... So, what's your supper power?
Wednesday, January 15, 2014
Back... Down But Not Out!
Hello all! Much has happened in the last several years... Frank attended (and completed) graduate school, I was working outside of the home during that time, and I was the "main" parent for several years while our family went on this schooling journey.... We are all glad that time is behind us! We are ecstatic to be a whole family once more. The boys love having Daddy home and to have a remotely sane Mommy again... With the freshness of a new year and a new chapter in our life, I am committing posting weekly blogs.
We are a family blessed with two sons (Caleb 10 and Joshua 6)! In all of God's wisdom - maybe hummer is a better word - He created both my boys with Down syndrome. So this is a glimpse into our life the good, the bad and the goofy!
I will do a little catch up this first post... Caleb is now a 4th grader... sigh... He is nearly 5 feet tall! He is thriving at Franklin School in Belleville, Illinois participating in their autism program. So... My Caleb is a "special" sort of boy... I knew very soon after his younger brother, Joshua, was born that something else was going on with Caleb. He has always had sensory issues (loud noises and too much stimulation drive him crazy ... literally.) But it took several years, a butt load of doctors, and some REALLY bad behavior issues at school before I was able to find a psychologist who got it! The doc nailed it the moment we walked into his door... I think I even started crying... I was so exhausted from the constant phone calls and no one wanting to believe he had autism! Caleb has to be in a self-contained classroom (limited interaction with kiddos outside of his classroom) and a VERY structured environment!
Joshua has a serious issue as well it is called "youngest child syndrome" (wink, wink) this is far worse than Down syndrome! I say this tongue in cheek, but it is true. He can be so charming and yet a stinker at the same time... He is so darn cute and VERY theatrical! This deadly combination is his secret weapon! Joshua is now a fist grader and the transition from preschool to "real" school was a bit of a shock to his system. But he is doing well and has an amazing teacher (thank you Mrs. Fanous) and personal aid (Tamara you're the best)! Joshua likes to be in charge... so he is learning to cope with this...
The boys are truly best buddies! But they are very much brothers - loving each other one moment and arguing the next... They keep us entertained!
We are very blessed! I look forward to many of fun blogs with all of you!
We are a family blessed with two sons (Caleb 10 and Joshua 6)! In all of God's wisdom - maybe hummer is a better word - He created both my boys with Down syndrome. So this is a glimpse into our life the good, the bad and the goofy!
I will do a little catch up this first post... Caleb is now a 4th grader... sigh... He is nearly 5 feet tall! He is thriving at Franklin School in Belleville, Illinois participating in their autism program. So... My Caleb is a "special" sort of boy... I knew very soon after his younger brother, Joshua, was born that something else was going on with Caleb. He has always had sensory issues (loud noises and too much stimulation drive him crazy ... literally.) But it took several years, a butt load of doctors, and some REALLY bad behavior issues at school before I was able to find a psychologist who got it! The doc nailed it the moment we walked into his door... I think I even started crying... I was so exhausted from the constant phone calls and no one wanting to believe he had autism! Caleb has to be in a self-contained classroom (limited interaction with kiddos outside of his classroom) and a VERY structured environment!
Joshua has a serious issue as well it is called "youngest child syndrome" (wink, wink) this is far worse than Down syndrome! I say this tongue in cheek, but it is true. He can be so charming and yet a stinker at the same time... He is so darn cute and VERY theatrical! This deadly combination is his secret weapon! Joshua is now a fist grader and the transition from preschool to "real" school was a bit of a shock to his system. But he is doing well and has an amazing teacher (thank you Mrs. Fanous) and personal aid (Tamara you're the best)! Joshua likes to be in charge... so he is learning to cope with this...
The boys are truly best buddies! But they are very much brothers - loving each other one moment and arguing the next... They keep us entertained!
We are very blessed! I look forward to many of fun blogs with all of you!
Tuesday, September 20, 2011
Camp 2011
Welcome back! For those who are new to this blog, welcome! Please feel free to read though past posts... we are a family blessed with two natural children (Caleb - 8 & Joshua - 4) who happen to have Down syndrome. This is my attempt to encourage other families facing the challenges of DS and educate those who are "on the outside looking in"!
Back in January I started looking into summer fun... call it tiered of cold, call it "planning", call it crazy... all apply....
Years before Caleb was even born a St. Louis pro-football player (Kurt Warner) was invited to be a "celebrity" on a game show (I am so bad at trivia I don't even remember what game show it was... oops). Well, he won! The charity that Warner was playing for was a Christian camp for children with "special" issues - Camp Barnabas! I thought, "Wow, that is so neat that he's helping THOSE kids..." Not knowing we would be blessed with some of THOSE kids! (all I can do is smile and laugh now!)
So in January I started looking into this Camp Barnabas... only to find that there was just one session with any availability left! A bit shocked, I emailed the contact person... her response... "if you at all think you want to send Caleb to camp you need to register today! If you wait any longer there won't be a slot..." Despite some questions I went ahead and filled out the application... the VERY detailed application.... "Ok... they have thought of everything.... that is comforting..." Still a little unsure I called the office a few days later... that is when I learned that every camper (with issues) has a one-on-one volunteer who will be within an arm's length from their camper at all times... "Ok... ok... that sounds good too... I can let Caleb stay 5 nights at camp... Can't I?... I think I can..."
August 1st finally rolled around and we (my Mom, Joshua & I) were taking Caleb to camp! All of Caleb's belongings (shoes to underwear, toothbrush to swimming trunks, camera to sleeping bag) were labeled and packed... paper work filled out... medications in a large zip lock bag... gas in the van... cell phone charged... "official" directions in hand... we where on our way to Camp Barnabas! Five hours later we were pulling off the interstate...
We arrived almost 45 minuets early. So, we decided to just see where the gate was and then "drive around a bit" to kill some time... Well... the line was already 15-20 cars long! So, we joined the line... excitement was in the air... a few girls reunited and were hugging, laughing, and singing. They quickly got Caleb and Joshua to join the fun... parents were smiling and talking... the line of cars was never ending... The time had come... the gates opened!
The organization of the first day was beyond amazing! Not to mention the facilities were top notch! We were greeted by Mr. Teas (co-founder). He put a name tag on Caleb's back and a star in our window (witch indicated Caleb was a first-year camper)... as we drove in a lady saw the star and hopped in the van with us... she told us how the process would work and that she would help walk us though it... At the drop-off spot a swarm of young people unloaded the van and helped Caleb get out... soon we were walking down the hill into the "welcome zone"... some where in there Caleb's "buddy" found us... This massive crowd yelled and cheered as each camper was announced! Caleb does NOT like loud noises, so he covered his ears... someone in the crowd yelled, "Happy hands!" Just like that the crowd went dead quiet but their enthusiasm did not miss a beat... It was like someone hit the mute button on this massive group of people!
Caleb was ushered to his cabin while I checked in his medication... the organization of this process was astounding. For every three cabins there were at least 3 medical personnel. They went though all of Caleb's meds and made notes of how and when each should be given... then I was off to say good-by to Caleb... He was waiting in cabin B2 with his "buddy" Jonny. I was greeted with a, "Hi, Mrs. Caines. I am Jonny." (Wow!... a young person using Mrs. ... come on that is impressive in it's self!) We talked for some time... Jonny even pulled out a paper with a list of questions! I soon learned that Jonny is a runner (SCORE!), because Caleb is a "runner" too (just normally not in the right directions)! I finally said, "Caleb, I love you!" And I left...
Yes, of course I cried... no, no, no... not sad tears. In fact, it was quite the opposite! I cried tears of "praise"... tears that only come when you are SO blessed there's simply nothing else to do... All of these people (hundreds of people) were volunteering their time to make camp possible for my child... for my Caleb! I left knowing Caleb would be just fine... I left knowing that there are many, many years of memories to be made here by my boys... I left knowing that God had placed this dream in the hearts of so many people... I left knowing that His hand was upon this place... I left knowing the only fear I had was that Caleb would not want to leave! (a very true prediction!)
As we drove away, I turned to my Mom and said, "I feel like I just dropped Caleb off at the rich kid camp!" We laughed and drove off in total & complete amazement of the this place called Camp Barnabas!
Now, over a month later... Caleb is registered for Camp Barnabas 2012! Every time we mention camp Caleb says "YES!" or "That's right!" or "Swimming!" (his favorite activity at camp)
Please check this camp out (for your kid... to help send a kid... to volunteer... or just to be snoop...) http://www.campbarnabas.org/
Lord, thank you for Paul and Cyndi Teas who followed Your calling... the calling to have a camp where "being different is normal.." Thank you for people like Jonny who gave up a week of their summer to make Camp Barnabas possible! Lord, I am so blessed to see Caleb excited about Camp Barnabas. I am simply amazed at Your camp and Your people there!
Back in January I started looking into summer fun... call it tiered of cold, call it "planning", call it crazy... all apply....
Years before Caleb was even born a St. Louis pro-football player (Kurt Warner) was invited to be a "celebrity" on a game show (I am so bad at trivia I don't even remember what game show it was... oops). Well, he won! The charity that Warner was playing for was a Christian camp for children with "special" issues - Camp Barnabas! I thought, "Wow, that is so neat that he's helping THOSE kids..." Not knowing we would be blessed with some of THOSE kids! (all I can do is smile and laugh now!)
So in January I started looking into this Camp Barnabas... only to find that there was just one session with any availability left! A bit shocked, I emailed the contact person... her response... "if you at all think you want to send Caleb to camp you need to register today! If you wait any longer there won't be a slot..." Despite some questions I went ahead and filled out the application... the VERY detailed application.... "Ok... they have thought of everything.... that is comforting..." Still a little unsure I called the office a few days later... that is when I learned that every camper (with issues) has a one-on-one volunteer who will be within an arm's length from their camper at all times... "Ok... ok... that sounds good too... I can let Caleb stay 5 nights at camp... Can't I?... I think I can..."
August 1st finally rolled around and we (my Mom, Joshua & I) were taking Caleb to camp! All of Caleb's belongings (shoes to underwear, toothbrush to swimming trunks, camera to sleeping bag) were labeled and packed... paper work filled out... medications in a large zip lock bag... gas in the van... cell phone charged... "official" directions in hand... we where on our way to Camp Barnabas! Five hours later we were pulling off the interstate...
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| Waiting for gates to open! |
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| New Medical Building |
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| Caleb & Jonny |
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| Caleb & Jonny swimming! |
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| Caleb on a trail ride! |
Now, over a month later... Caleb is registered for Camp Barnabas 2012! Every time we mention camp Caleb says "YES!" or "That's right!" or "Swimming!" (his favorite activity at camp)
Please check this camp out (for your kid... to help send a kid... to volunteer... or just to be snoop...) http://www.campbarnabas.org/
Wednesday, June 1, 2011
Healing Tears
Welcome back! If this is your first time reading this blog, Welcome! We are a family with two natural sons (Caleb 7 & Joshua 4) who have Down syndrome. Yes, the picture needs to be up dated... sigh... None the less, feel free to read through earlier posts.
We are blessed here in the St. Louis area to have a fabulous Christian radio station (Joy FM http://joyfmonline.org/). Personally, I am not one who is gifted with any musical talent, but music touches my soul in a way that nothing else can. No words are adequate enough to explain how a song can speak to me... So many times the artists played on Joy FM can sing what I am unable to express myself. At times I honestly sing their songs as a prayer or expression of love to God because my "unartistic" mind could never do so it's own...
One such song is "Blessings" by Laura Story (I post the link later on). The first time I heard this song I had to turn it off because I started to cry... and it was a day that I just DID NOT want to cry (grrrr)... Of course, I finally allowed myself to listen and to cry. Some times I have to be in the right mood for "those" types of tears... I call them my healing tears. The chorus goes, "Cause, what if your blessings come through rain drops. What if your healing comes through tears. What if a thousand sleepless nights are what it takes to know you're near."
So many moms (dads too) can relate to sleepless nights! There is a smaller population of parents who can relate to grief-stricken sleepless nights... you are out there I know, because some of you are my friends... some of you I have cried with... some of you have comforted me... some of you have begged for the same things that I have...some of you are walking a road that is far more difficult then my own... some of you are in that "fog" now! The truth is there may not be an answer to the endless why's or how's... if there is one thing I have come to understand it is this: there are still BLESSINGS!
Before we got the "official" diagnosis of Down syndrome for Caleb we asked the Elders of our church to pray for Caleb's healing. They did... but God choose not to answer that pray in the way we wanted. Rather, God choose to give us a greater gift - Caleb with Down syndrome! Little did we know that we would be receiving another blessing of Down syndrome when we had Joshua... I begged God to heal Caleb... rather He healed me... I spent many sleepless nights with a very sick baby Joshua... God gave me strength when there was just none left in my body... I have cried tears of pain for both of my boys... but I have cried just as many tears of joy - wondering why I was chosen to be blessed with two truly amazing children with Down syndrome!
All of my tears (anguish, joy, fear, amazement, shock, love...) have in some way produced healing in my life. The song "Blessings" - though not written by me nor for me - says everything! http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=related
Lord, I know my boys are a blessing! Thank you for giving us the gift of Down syndrome. Thank you for the tears that have healed my heart. Lord, thank you for the "rain" in my life that allows me to see how truly merciful you are! Thank you!
We are blessed here in the St. Louis area to have a fabulous Christian radio station (Joy FM http://joyfmonline.org/). Personally, I am not one who is gifted with any musical talent, but music touches my soul in a way that nothing else can. No words are adequate enough to explain how a song can speak to me... So many times the artists played on Joy FM can sing what I am unable to express myself. At times I honestly sing their songs as a prayer or expression of love to God because my "unartistic" mind could never do so it's own...
One such song is "Blessings" by Laura Story (I post the link later on). The first time I heard this song I had to turn it off because I started to cry... and it was a day that I just DID NOT want to cry (grrrr)... Of course, I finally allowed myself to listen and to cry. Some times I have to be in the right mood for "those" types of tears... I call them my healing tears. The chorus goes, "Cause, what if your blessings come through rain drops. What if your healing comes through tears. What if a thousand sleepless nights are what it takes to know you're near."
So many moms (dads too) can relate to sleepless nights! There is a smaller population of parents who can relate to grief-stricken sleepless nights... you are out there I know, because some of you are my friends... some of you I have cried with... some of you have comforted me... some of you have begged for the same things that I have...some of you are walking a road that is far more difficult then my own... some of you are in that "fog" now! The truth is there may not be an answer to the endless why's or how's... if there is one thing I have come to understand it is this: there are still BLESSINGS!
Before we got the "official" diagnosis of Down syndrome for Caleb we asked the Elders of our church to pray for Caleb's healing. They did... but God choose not to answer that pray in the way we wanted. Rather, God choose to give us a greater gift - Caleb with Down syndrome! Little did we know that we would be receiving another blessing of Down syndrome when we had Joshua... I begged God to heal Caleb... rather He healed me... I spent many sleepless nights with a very sick baby Joshua... God gave me strength when there was just none left in my body... I have cried tears of pain for both of my boys... but I have cried just as many tears of joy - wondering why I was chosen to be blessed with two truly amazing children with Down syndrome!
All of my tears (anguish, joy, fear, amazement, shock, love...) have in some way produced healing in my life. The song "Blessings" - though not written by me nor for me - says everything! http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=related
Lord, I know my boys are a blessing! Thank you for giving us the gift of Down syndrome. Thank you for the tears that have healed my heart. Lord, thank you for the "rain" in my life that allows me to see how truly merciful you are! Thank you!
Monday, April 18, 2011
The Art of Simpilicty
Welcome back! If this is your first time joining us, Welcome! Please feel free to browse past posts. We are a family with two natural sons (Caleb 7 & Joshua 4) who both happen to have Down Syndrome! Our boys are a great blessing but with great blessings comes great responsibility (or something to that effect)!
I was raised in a "family on the move". We were ALWAYS busy (soccer, gymnastics, track, church groups, Girl Scouts, out door adventures, honors clubs, road trips, and the never ending remodeling of the home stead... you get the picture)! This to me was the picture of a healthy, well balanced family... And it really was just that. I had a very rich and blessed childhood! Naturally I dreamed of this sort of family life (minus the remodeling, of course) for my own children... but with Down syndrome came a few more challenges than what my family faced "back-in-the-day"...
We, Frank & I, have learned (or are learning) the art of simplicity. The way Down syndrome has affected our boys requires us to slow down the pace. In other words, there is no such thing as an "all-day" event. Both boys fatigue quite easily, producing very tired children after an hour or less of any given activity (walking, swimming, hiking, playing). One statement that has become a "staple" during family outing is: "Let's quit while it is still fun!" Our thought is to leave on a good note, before the point of total exhaustion... for a melt down is sure to come (if not several melt downs). It would be incredibly easy just to say, "Forget it! It is too much trouble to take the boys any where!"
But we ABSOLUTELY see value in allowing our children to experience new and age appropriate activities! In the past few months we went on a few new outings. We took the boys to the movies! Once a month a local movie theater offers a special needs showing of a family movie. This means the lights stay on and volume is turned down... Awesome! Frank can not wait to have a "guys night" at the movies with his boys! But this will not happen with out some very purposeful "training". So we will continue these special showings until the boys learn how to set in their seats the entire movie, and how to be quiet... Trust me this will take some time (a few years even), but it will be well worth the effort! The movie went better than expected... however, we did not go out to eat after wards... We ended on a positive note, no need rune that!
We also took our "maiden voyage" to Chuck E. Cheese. Yes, we have been invited to birthday parties held there. But we have always politely declined (Caleb is easily over stimulated by noise and crowds). So, for Joshua's 4th birthday we did a family "party" at Chuck E. Cheese (no friends... we did not want feel obligated to stay if things did not go well). We also choose to go at 4 o'clock in the evening (little, to no crowds on a week day)... They had a blast! Joshua ran ME to total exhaustion! Caleb enjoyed playing a few games, but he and Daddy enjoyed eating pizza and watching the "show". After an hour or so the crowds started to come and the boys become a little moody... so again we left on a good note!
We are not the family that gets-our-moneys-worth when going places... so rarely do we spend much when we do try new adventures. No Six Flags or Disney for us at this point in life... but as the boys grow and get stronger we will add bigger and bigger events. For now we will continue to use the art of simplicity when we are out and about.
Lord, help me to have patience with our beautiful boys. Help me to slow down and have fun! Give Frank & I strength as we help our boys grow to become men. When we have those difficult outings, help us to learn from them rather than give up all together. I know Caleb and Joshua are YOUR gifts to us! Thank for blessing me with such an amazing family!
I was raised in a "family on the move". We were ALWAYS busy (soccer, gymnastics, track, church groups, Girl Scouts, out door adventures, honors clubs, road trips, and the never ending remodeling of the home stead... you get the picture)! This to me was the picture of a healthy, well balanced family... And it really was just that. I had a very rich and blessed childhood! Naturally I dreamed of this sort of family life (minus the remodeling, of course) for my own children... but with Down syndrome came a few more challenges than what my family faced "back-in-the-day"...
We, Frank & I, have learned (or are learning) the art of simplicity. The way Down syndrome has affected our boys requires us to slow down the pace. In other words, there is no such thing as an "all-day" event. Both boys fatigue quite easily, producing very tired children after an hour or less of any given activity (walking, swimming, hiking, playing). One statement that has become a "staple" during family outing is: "Let's quit while it is still fun!" Our thought is to leave on a good note, before the point of total exhaustion... for a melt down is sure to come (if not several melt downs). It would be incredibly easy just to say, "Forget it! It is too much trouble to take the boys any where!"
But we ABSOLUTELY see value in allowing our children to experience new and age appropriate activities! In the past few months we went on a few new outings. We took the boys to the movies! Once a month a local movie theater offers a special needs showing of a family movie. This means the lights stay on and volume is turned down... Awesome! Frank can not wait to have a "guys night" at the movies with his boys! But this will not happen with out some very purposeful "training". So we will continue these special showings until the boys learn how to set in their seats the entire movie, and how to be quiet... Trust me this will take some time (a few years even), but it will be well worth the effort! The movie went better than expected... however, we did not go out to eat after wards... We ended on a positive note, no need rune that!
We also took our "maiden voyage" to Chuck E. Cheese. Yes, we have been invited to birthday parties held there. But we have always politely declined (Caleb is easily over stimulated by noise and crowds). So, for Joshua's 4th birthday we did a family "party" at Chuck E. Cheese (no friends... we did not want feel obligated to stay if things did not go well). We also choose to go at 4 o'clock in the evening (little, to no crowds on a week day)... They had a blast! Joshua ran ME to total exhaustion! Caleb enjoyed playing a few games, but he and Daddy enjoyed eating pizza and watching the "show". After an hour or so the crowds started to come and the boys become a little moody... so again we left on a good note!
We are not the family that gets-our-moneys-worth when going places... so rarely do we spend much when we do try new adventures. No Six Flags or Disney for us at this point in life... but as the boys grow and get stronger we will add bigger and bigger events. For now we will continue to use the art of simplicity when we are out and about.
Lord, help me to have patience with our beautiful boys. Help me to slow down and have fun! Give Frank & I strength as we help our boys grow to become men. When we have those difficult outings, help us to learn from them rather than give up all together. I know Caleb and Joshua are YOUR gifts to us! Thank for blessing me with such an amazing family!
Thursday, January 27, 2011
Catching up...
Welcome back! Sorry it has been a while... I will explain why... If this is your first time joining us, welcome. Please, feel free to read through past blogs. We are a family with two natural sons (Caleb 7 & Joshua 3) who have Down syndrome.
Life has been a bit crazy for the Caines house hold in the past year! We are going through several changes.
Frank was accepted into the Nurse Anesthetist program at Southern Illinois University of Edwardsville! It is an incredible honor and privilege for him to go back to school, but the program is VERY demanding. As a result, he had to quit his job and focus solely on school and clinical hours.
For the first time sense Joshua was born, I went back to work... very part time at a local day care... Just because I am working out side of the home does not mean that doctors appointment, school meetings, or home duties have slowed down! There are just a few more piles of dishes and a few more stacks of clothes...
This year Caleb has made some great strides! His vocabulary and "conversation" language is blossoming! Now when I say Caleb's name he will answer with a very concise, "What?" Until recently he would not respond or just say no. This is a huge improvement! He is also reading! Yes, I said READING! Caleb has 4 to 5 line "stories" that he can read without any prompting... Amazing! His behavior seems to be calming a bit as well; however, his "calmness" may be a direct result of my "calmness".
I finally humbled myself and talked to my doctor about anxiety! Come on, what do I have to be anxious about (spoken very sarcastically)?! For so long I have lived on pure adrenaline... About the time Caleb was growing out of being "sick" all the time, Joshua was born. Poor Joshua was a bit medically fragile (I hate to even use "medically fragile" because so many kids we know are VERY medically fragile)! But Joshua did keep me busy (feet surgery at 4 months old, followed by casting every week on his feet for three months, at 6 months he had his first set of ear tubes, then that winter he was hospitalized three separate weeks for lung/pneumonia issues, all the while juggling physical, occupational & speech therapies)! My ears turned into super sonic radars... resulting in NO sleep and one very anxious mommy! But rest is so important and I have not had good rest in years! I thank the Lord for anxiety medication that also helps me rest at night. This is the year for me to get healthy, an all around healthy. So, I have also re-joined the gym... I have missed being in healthy shape, plus the child care is included! Bonus!!! Mommy gets some "destress time" (without fear of a cold sending Joshua to the hospital) and the boys get some "social time"... this is going to be a beautiful thing!
Speaking of "good" things, Joshua's ASD (a hole in his heart) closed without repair! No more Cardiology for him! I almost feel bad mentioning this because sooooo many of our friends have children with very serious heart issues... An ASD is nothing compared to what so many little ones go through. But this is also one less fear and one less doctor!
So, more good news... Caleb will be going to summer camp this August. He will be attending Camp Barnabas http://www.campbarnabas.org/ in western Missouri. This camp is a Christian based, high adventure camp for children with physical impairments and/or developmental delays! Believe it or not Caleb will be among the "higher" functioning children. Every child is paired with a volunteer buddy and the activities are "modified" for each child's abilities! I am SUPPER excited for him!
Life is all about moving forward... so we just keep putting one foot in front of the other...
Lord, please help me to continue to "get healthy"! Help me set an example that I would be proud of my boys to follow!
Life has been a bit crazy for the Caines house hold in the past year! We are going through several changes.
Frank was accepted into the Nurse Anesthetist program at Southern Illinois University of Edwardsville! It is an incredible honor and privilege for him to go back to school, but the program is VERY demanding. As a result, he had to quit his job and focus solely on school and clinical hours.
For the first time sense Joshua was born, I went back to work... very part time at a local day care... Just because I am working out side of the home does not mean that doctors appointment, school meetings, or home duties have slowed down! There are just a few more piles of dishes and a few more stacks of clothes...
This year Caleb has made some great strides! His vocabulary and "conversation" language is blossoming! Now when I say Caleb's name he will answer with a very concise, "What?" Until recently he would not respond or just say no. This is a huge improvement! He is also reading! Yes, I said READING! Caleb has 4 to 5 line "stories" that he can read without any prompting... Amazing! His behavior seems to be calming a bit as well; however, his "calmness" may be a direct result of my "calmness".
I finally humbled myself and talked to my doctor about anxiety! Come on, what do I have to be anxious about (spoken very sarcastically)?! For so long I have lived on pure adrenaline... About the time Caleb was growing out of being "sick" all the time, Joshua was born. Poor Joshua was a bit medically fragile (I hate to even use "medically fragile" because so many kids we know are VERY medically fragile)! But Joshua did keep me busy (feet surgery at 4 months old, followed by casting every week on his feet for three months, at 6 months he had his first set of ear tubes, then that winter he was hospitalized three separate weeks for lung/pneumonia issues, all the while juggling physical, occupational & speech therapies)! My ears turned into super sonic radars... resulting in NO sleep and one very anxious mommy! But rest is so important and I have not had good rest in years! I thank the Lord for anxiety medication that also helps me rest at night. This is the year for me to get healthy, an all around healthy. So, I have also re-joined the gym... I have missed being in healthy shape, plus the child care is included! Bonus!!! Mommy gets some "destress time" (without fear of a cold sending Joshua to the hospital) and the boys get some "social time"... this is going to be a beautiful thing!
Speaking of "good" things, Joshua's ASD (a hole in his heart) closed without repair! No more Cardiology for him! I almost feel bad mentioning this because sooooo many of our friends have children with very serious heart issues... An ASD is nothing compared to what so many little ones go through. But this is also one less fear and one less doctor!
So, more good news... Caleb will be going to summer camp this August. He will be attending Camp Barnabas http://www.campbarnabas.org/ in western Missouri. This camp is a Christian based, high adventure camp for children with physical impairments and/or developmental delays! Believe it or not Caleb will be among the "higher" functioning children. Every child is paired with a volunteer buddy and the activities are "modified" for each child's abilities! I am SUPPER excited for him!
Life is all about moving forward... so we just keep putting one foot in front of the other...
Lord, please help me to continue to "get healthy"! Help me set an example that I would be proud of my boys to follow!
Saturday, July 17, 2010
Sack Race
Welcome back! I hope the summer is finding everyone in sunny spirits and good health! If this is your first time joining this blog let me welcome you to our family... we (Frank and Betsy Caines) have with two natural sons (Caleb 7 and Joshua 3) who have Down syndrome. This blog is meant to be an encouragement to those who have children with DS and to be an educational tool for those who are learning about DS. Feel free to read though earlier posts... Enjoy!
Summer is the time for swimming pools, picnics, family vacations, cook outs, and just good-old-fashion-fun! This summer we have dabbled in all of the above....
With the boys out of summer school and Frank knee deep studying (he is in a master's program to become a CRNA), things became... shall we say... stressful at our house. Despite my efforts to swim the boys into total exhaustion, if they knew Daddy was home all was a loss. So, I pack our bags and the boys and I headed to my home town of Grayson, Kentucky (very beautiful place to visit by the way... wonderful state parks... rolling heals... trees... great hiking...). Daddy could use the quite house and the boys LOVE seeing the grandparents!
Despite swearing last summer, "I will NEVER do that trip with the boys by myself again!" Here I was by myself with the boys, DVD players running, van pack, travelling east on Interstate 64 for the long 8-10 hour trip (depending on how many stops we need to make). The perks for Frank seemed to out way the stress. We arrived at 1a.m. on Sunday morning. Because it was the 4th of July weekend, the boys and I went to the church picnic with Grand mommy (my mom). To be quite honest I was dreading it a bit... I was still wiped out form travelling and Caleb can have real issues in strange, loud, crowded places... and this would be all of that and more (100+ heat index)! But my fears were ill-directed.... The boys did rather well...
Grand mommy and I tag teamed it! She hung out with the boys as I got some good all-American hot dogs. Then I fed the boys while she got the sides. We both shoveled food down just in time for the boys to want something to drink. We gave a few hugs , exchanged a few. "How are you doing?"'s But all the while keep an eagle's eye on the boys...
As Mom I always have this nagging fear that my boys won't make friends, or that they will be picked on by other kids; yet, I want them to be independent individuals. This combined with other physical and social quarks we have not tried any organized sports. We go to the swimming pool, but that is not a team sport nor dose it require the boys to wait turns... But, what is a big picnic without some fun games?! They called for all sack race runners to come to the starting line... we watched as a small group of kids hopped down the grassy stretch. Once the kids were done they returned to their parents, but Caleb's gaze never left the burlap sacks. He casually but very purposefully started walking toward the vacant starting line. My first reaction was to yell at him to come back over to his seat... but I didn't, instead Grand mommy walked with him. Without any prompting Caleb pick up a sack, and in his own time and in his own awkward way, got that sack on & started jumping! I stood in total amazement...
"My Caleb just figured that out! MY Caleb! All by himself!" For kids with Down syndrome nothing comes easy... He has had therapies to teach him to do EVERYTHING! He still receives Physical, Occupational, Speech, Behavioral, & Music Therapies during the school year. We have had to literally teach him everything! Caleb watched what the other kids did... wanted to do it... and figured out how to do it himself! Totally amazing problem-solving-skills! And to beat all, this is a very age appropriate activity! Another struggles I have as a parent is seeing other kids mastering activities that Caleb (and Joshua) are unable to do... But Caleb was standing before me jumping his heart out in a potato sack! "My Caleb is growing up!"
I had one of those moments of peace... Caleb is growing up...he will get there... he will be potty trained... he will dress himself... he will carry on a conversation... he will... he can... he is able! Like this sack race, growing up is done in Caleb's own way... it takes a bit longer, it's done a bit differently, often it's a bit awkward, and is finished when he finally gets there! I just have to be patient...
Lord, thank you for creating Caleb and Joshua just they way they are! Thank you for have patients with me even when I seem to run this race at my own pace and a bit awkwardly... Help me to hear your cheering voice in the crowd!
Summer is the time for swimming pools, picnics, family vacations, cook outs, and just good-old-fashion-fun! This summer we have dabbled in all of the above....
With the boys out of summer school and Frank knee deep studying (he is in a master's program to become a CRNA), things became... shall we say... stressful at our house. Despite my efforts to swim the boys into total exhaustion, if they knew Daddy was home all was a loss. So, I pack our bags and the boys and I headed to my home town of Grayson, Kentucky (very beautiful place to visit by the way... wonderful state parks... rolling heals... trees... great hiking...). Daddy could use the quite house and the boys LOVE seeing the grandparents!
Despite swearing last summer, "I will NEVER do that trip with the boys by myself again!" Here I was by myself with the boys, DVD players running, van pack, travelling east on Interstate 64 for the long 8-10 hour trip (depending on how many stops we need to make). The perks for Frank seemed to out way the stress. We arrived at 1a.m. on Sunday morning. Because it was the 4th of July weekend, the boys and I went to the church picnic with Grand mommy (my mom). To be quite honest I was dreading it a bit... I was still wiped out form travelling and Caleb can have real issues in strange, loud, crowded places... and this would be all of that and more (100+ heat index)! But my fears were ill-directed.... The boys did rather well...
Grand mommy and I tag teamed it! She hung out with the boys as I got some good all-American hot dogs. Then I fed the boys while she got the sides. We both shoveled food down just in time for the boys to want something to drink. We gave a few hugs , exchanged a few. "How are you doing?"'s But all the while keep an eagle's eye on the boys...
As Mom I always have this nagging fear that my boys won't make friends, or that they will be picked on by other kids; yet, I want them to be independent individuals. This combined with other physical and social quarks we have not tried any organized sports. We go to the swimming pool, but that is not a team sport nor dose it require the boys to wait turns... But, what is a big picnic without some fun games?! They called for all sack race runners to come to the starting line... we watched as a small group of kids hopped down the grassy stretch. Once the kids were done they returned to their parents, but Caleb's gaze never left the burlap sacks. He casually but very purposefully started walking toward the vacant starting line. My first reaction was to yell at him to come back over to his seat... but I didn't, instead Grand mommy walked with him. Without any prompting Caleb pick up a sack, and in his own time and in his own awkward way, got that sack on & started jumping! I stood in total amazement...
"My Caleb just figured that out! MY Caleb! All by himself!" For kids with Down syndrome nothing comes easy... He has had therapies to teach him to do EVERYTHING! He still receives Physical, Occupational, Speech, Behavioral, & Music Therapies during the school year. We have had to literally teach him everything! Caleb watched what the other kids did... wanted to do it... and figured out how to do it himself! Totally amazing problem-solving-skills! And to beat all, this is a very age appropriate activity! Another struggles I have as a parent is seeing other kids mastering activities that Caleb (and Joshua) are unable to do... But Caleb was standing before me jumping his heart out in a potato sack! "My Caleb is growing up!"After some time to practice, Caleb got Grand mommy in a burlap sack as well. By this time the announcement had been made that another sack race was about to start. Adults and children alike were lining up with sacks on. Side by side, Caleb and Grand mommy waited for the, "On your mark... Get set.... GO!" With great effort and extreme concentration Caleb crossed the finish line of his first Sack Race! Several of the other "racers" cheered him on as he proudly finished the race. My heart was so full of joy that nearly cried!
I had one of those moments of peace... Caleb is growing up...he will get there... he will be potty trained... he will dress himself... he will carry on a conversation... he will... he can... he is able! Like this sack race, growing up is done in Caleb's own way... it takes a bit longer, it's done a bit differently, often it's a bit awkward, and is finished when he finally gets there! I just have to be patient...
Lord, thank you for creating Caleb and Joshua just they way they are! Thank you for have patients with me even when I seem to run this race at my own pace and a bit awkwardly... Help me to hear your cheering voice in the crowd!
Sunday, June 27, 2010
The Red Eye Trip
Welcome back! If this is your first time joining this blog, welcome (feel free to read through past posts)! We are a family with two natural sons who have Down syndrome (Caleb 7 and Joshua 3). In this blog I share some of our challenges and joys during our journey.
There are many times that I wonder where I fit... Most of my friends do not have children with Down syndrome... for those that do, they have ONE child with DS! I feel I don't really relate with "regular" moms, and to be quite honest we are the "worst nightmare" for those who do have a child with DS! Do not misunderstand what I am saying... I LOVE my family! I LOVE my boys! But we are just not like other families... to be honest, we are quite difficult to miss! We rarely just blend into the crowd... there are rare occasions that we can...
Every year the Down Syndrome Association of Greater St. Louis (DSAGSL) has a DS awareness walk in Forest Park - Stepping Up for Down Syndrome (formally The Buddy Walk). In years past we have gathered friends & family and put on our walking shoes to join the thousands of walkers. But, this past year has been full of extra challenges (Mamaw Canines and Aunt Mary Lee going through lung cancer treatment, Frank finishing BSN program & starting CRNA program, and a VERY difficult school year for Caleb), so we were just going to skip the event. A couple friends expressed interest in going so we thought, "Why not? Let's go!" Even after our friends needed to back out we loaded the boys up and headed across the river to St. Louis, Mo. Because this is one of those cherished times that we can just be one of the crowd!
Nearly every year we have gone to the DS walk, or any event that the DSAGSL puts on, I cry... sometimes it is the shear number of people supporting DS, sometimes it is being apart of a larger group or purpose than myself, and sometimes is is just the raw love I have for my unique family!
The day was very hot and humid so the sunscreen was applied and the stroller was unloaded so we could join this thrilling crowd! As we were walking through the parking lot Caleb began to "melt down". Crowds and loud noises can set him into a utter tizzy, but this time he was trying to communicate a great need of his... he was hurting! As Frank looked closer he realized Caleb must have gotten sunscreen in his eyes! Caleb's eyes became blood shot and he was rubbing them with extreme purpose... but to no avail because the more Caleb rubbed the more sunscreen got into his eyes. The pain was more than he could handle and he only way Caleb could express his discomfort was to TOTALLY melt down. By this time Caleb's eyes were so red it hurt to even look at him! Only yards away form the van, we just loaded back up and headed to a pharmacy to get some eye drops.
Frank got some extra treats for our hurting boy, but Caleb was in so much pain none of the usual "bribes" worked... not McDonald's... not swimming... not ice cream... not beads... not candy... not Veggie Tales... not Signing Times... not a movie... not the park. He was REALLY in pain! When the eye drops did not offer instant relief we knew it was time to just go home! No need to push it... when we push our luck we always seem to get knocked down!
Poor Caleb screamed all the way home in unbearable pain... once home we held him down again to re administer eye drops. This time Frank kept Caleb in a "bear hug" hold for a few minuets to make sure the drops had a chance to work their magic, and they did!
Our "Red Eye Trip" was just a reminder that sometimes we must accept our limits (or the limits of our children)! This may seem like a duh kind of statement, but it has taken me a while to accept it. I am the type of person who wants to get the most out of everything I do... stay as long as I can... push myself to the limits... but my kids have taught me that I need to know the limits. That more is not always best!
This time it was a physical pain that made us leave. But, Frank and I are learning the art of calling it quits. We have made it our goal to leave "on a good note" to avoid figurative "red eye" trips (complete hysterics). The kids may be having a great time at the park, zoo, pool, friend's house... when we decide to leave. We want to leave before they are so exhausted that they can not see strait and thus lead to an emotional melt down. Kiddos with Down syndrome can fatigue easier then their peers, thus leading to crankiness and emotional fits for my kids.
So, now I have eye drops in the first aid kit. Hoping that because they are in the car I will not need to use them... but nonetheless they are there if we do! I have also invested in some "tear free" sun screen. Even with all of my efforts there is a chance for another "Red Eye Trip" and when it comes I will wrap my arms around my child and tell him that I love him and that I will try to make it all better! But life sometimes hurts and makes our eyes red...
Lord, help me to show unconditional love to my boys! Help me be a source of comfort when they are hurting. Please, Lord, grant me wisdom in all situations!
There are many times that I wonder where I fit... Most of my friends do not have children with Down syndrome... for those that do, they have ONE child with DS! I feel I don't really relate with "regular" moms, and to be quite honest we are the "worst nightmare" for those who do have a child with DS! Do not misunderstand what I am saying... I LOVE my family! I LOVE my boys! But we are just not like other families... to be honest, we are quite difficult to miss! We rarely just blend into the crowd... there are rare occasions that we can...
Every year the Down Syndrome Association of Greater St. Louis (DSAGSL) has a DS awareness walk in Forest Park - Stepping Up for Down Syndrome (formally The Buddy Walk). In years past we have gathered friends & family and put on our walking shoes to join the thousands of walkers. But, this past year has been full of extra challenges (Mamaw Canines and Aunt Mary Lee going through lung cancer treatment, Frank finishing BSN program & starting CRNA program, and a VERY difficult school year for Caleb), so we were just going to skip the event. A couple friends expressed interest in going so we thought, "Why not? Let's go!" Even after our friends needed to back out we loaded the boys up and headed across the river to St. Louis, Mo. Because this is one of those cherished times that we can just be one of the crowd!
Nearly every year we have gone to the DS walk, or any event that the DSAGSL puts on, I cry... sometimes it is the shear number of people supporting DS, sometimes it is being apart of a larger group or purpose than myself, and sometimes is is just the raw love I have for my unique family!
The day was very hot and humid so the sunscreen was applied and the stroller was unloaded so we could join this thrilling crowd! As we were walking through the parking lot Caleb began to "melt down". Crowds and loud noises can set him into a utter tizzy, but this time he was trying to communicate a great need of his... he was hurting! As Frank looked closer he realized Caleb must have gotten sunscreen in his eyes! Caleb's eyes became blood shot and he was rubbing them with extreme purpose... but to no avail because the more Caleb rubbed the more sunscreen got into his eyes. The pain was more than he could handle and he only way Caleb could express his discomfort was to TOTALLY melt down. By this time Caleb's eyes were so red it hurt to even look at him! Only yards away form the van, we just loaded back up and headed to a pharmacy to get some eye drops.
Frank got some extra treats for our hurting boy, but Caleb was in so much pain none of the usual "bribes" worked... not McDonald's... not swimming... not ice cream... not beads... not candy... not Veggie Tales... not Signing Times... not a movie... not the park. He was REALLY in pain! When the eye drops did not offer instant relief we knew it was time to just go home! No need to push it... when we push our luck we always seem to get knocked down!
Poor Caleb screamed all the way home in unbearable pain... once home we held him down again to re administer eye drops. This time Frank kept Caleb in a "bear hug" hold for a few minuets to make sure the drops had a chance to work their magic, and they did!
Our "Red Eye Trip" was just a reminder that sometimes we must accept our limits (or the limits of our children)! This may seem like a duh kind of statement, but it has taken me a while to accept it. I am the type of person who wants to get the most out of everything I do... stay as long as I can... push myself to the limits... but my kids have taught me that I need to know the limits. That more is not always best!
This time it was a physical pain that made us leave. But, Frank and I are learning the art of calling it quits. We have made it our goal to leave "on a good note" to avoid figurative "red eye" trips (complete hysterics). The kids may be having a great time at the park, zoo, pool, friend's house... when we decide to leave. We want to leave before they are so exhausted that they can not see strait and thus lead to an emotional melt down. Kiddos with Down syndrome can fatigue easier then their peers, thus leading to crankiness and emotional fits for my kids.
So, now I have eye drops in the first aid kit. Hoping that because they are in the car I will not need to use them... but nonetheless they are there if we do! I have also invested in some "tear free" sun screen. Even with all of my efforts there is a chance for another "Red Eye Trip" and when it comes I will wrap my arms around my child and tell him that I love him and that I will try to make it all better! But life sometimes hurts and makes our eyes red...
Lord, help me to show unconditional love to my boys! Help me be a source of comfort when they are hurting. Please, Lord, grant me wisdom in all situations!
Wednesday, June 9, 2010
Totally Amazing...
Welcome back! If this is your first time joining this blog, welcome! Feel free to browse through past posts. We are a family with two natural sons (Caleb almost 7 & Joshua 3) with Down syndrome (DS) and this blog shares some of our adventures.
I saw something totally amazing the other day! I will not be talking specifically about DS in this post, but because I have children with special needs I want share this amazing event. Let me set the stage for you. First, we live on a VERY busy street. Second, just down the road a block (if even that) there is a workshop for adults with special needs, Silver Creek Mill.
I was sitting in the back yard enjoying the beautiful spring weather when a young man came around the corner (off the busy road onto the side street). He had a back pack on and he had a huge umbrella open because it looked like it could rain. I knew this young man did live on our street, but I thought he might be visiting a friend. At a closer look I knew he probably should not be walking around by himself... I could not tell what his special needs were but I knew there were some... just then a 20-something man came around the corner... I thought, "Oh, good this must be his 'helper'! They must be from Silver Creek and are out enjoying a nice walk!" So I did not move from my chair.
But then a moment later, the umbrella boy came back toward the main drag with no helper... "Oh, no! I need to call someone... who? The cops? Silver Creek?" I went inside and grab the phone and then ran to the window with the lap top... I was still not sure who I should call but I wanted to keep an eye on this young man. I was starting to have some anxiety for him... who is he? Do they know he is wandering the streets by himself? What if that were my child? How should I approach him? What do I say? Would he run into the street if I talk to him? As I was gazing out the window, still with a fuzzy brain about who needed to be called or what to do, I saw it... it only lasted 15 seconds 30 at the most...
The umbrella boy was standing at my neighbor's chain linked fence petting a wild bird! Just standing there... backpack on, umbrella in hand... gently stoking this birds head! Not caring what was going on around him... he lovingly caressed this bird with his bare hands. I thought my eyes were tricking me until the 20-something man came back followed by a van to pick up the umbrella boy... the bird flew off at the on coming commotion.
I stood at the window phone in hand with my mouth gaping open... "Wow that was AMAZING!" I just kept repeating to myself, "That kid was petting a bird, a WILD bird! AMAZING!" I could not believe it! Let's be real, my mom feeds Blue Jays on her back deck, by the end of the summer they will SOMETIMES eat out her hand, sometimes... This kid just walked up to a bird and started petting it! It could have been sick I guess, but it did not flop or struggle to fly off it just flew away, far away, without effort....
Later that day I was still totally amazed! I kept obsessing over what I saw, "What an amazing gift God has given that young man... I don't know what he can't do... but I know I will never be able to do what he just did! Amazing!" I will never know who that boy was, what his "special" issues are, or if he was even suppose to be with those people. What I do know is that God gave me a gift! I was at the right place, at the right time, with my eyes open! Watching umbrella boy did make me think about my boys... what are the amazing things they are doing right in front of me? Am I watching? Do I really see their amazing gifts? There are lists of things that they will never do, but what can they do?
So, please keep your eyes open and look for the AMAZING things around you!
God, thank you for that gift! Please help me to keep my eyes open! I want to see the amazing things you are doing in my life and in the life of my boys!
I saw something totally amazing the other day! I will not be talking specifically about DS in this post, but because I have children with special needs I want share this amazing event. Let me set the stage for you. First, we live on a VERY busy street. Second, just down the road a block (if even that) there is a workshop for adults with special needs, Silver Creek Mill.
I was sitting in the back yard enjoying the beautiful spring weather when a young man came around the corner (off the busy road onto the side street). He had a back pack on and he had a huge umbrella open because it looked like it could rain. I knew this young man did live on our street, but I thought he might be visiting a friend. At a closer look I knew he probably should not be walking around by himself... I could not tell what his special needs were but I knew there were some... just then a 20-something man came around the corner... I thought, "Oh, good this must be his 'helper'! They must be from Silver Creek and are out enjoying a nice walk!" So I did not move from my chair.
But then a moment later, the umbrella boy came back toward the main drag with no helper... "Oh, no! I need to call someone... who? The cops? Silver Creek?" I went inside and grab the phone and then ran to the window with the lap top... I was still not sure who I should call but I wanted to keep an eye on this young man. I was starting to have some anxiety for him... who is he? Do they know he is wandering the streets by himself? What if that were my child? How should I approach him? What do I say? Would he run into the street if I talk to him? As I was gazing out the window, still with a fuzzy brain about who needed to be called or what to do, I saw it... it only lasted 15 seconds 30 at the most...
The umbrella boy was standing at my neighbor's chain linked fence petting a wild bird! Just standing there... backpack on, umbrella in hand... gently stoking this birds head! Not caring what was going on around him... he lovingly caressed this bird with his bare hands. I thought my eyes were tricking me until the 20-something man came back followed by a van to pick up the umbrella boy... the bird flew off at the on coming commotion.
I stood at the window phone in hand with my mouth gaping open... "Wow that was AMAZING!" I just kept repeating to myself, "That kid was petting a bird, a WILD bird! AMAZING!" I could not believe it! Let's be real, my mom feeds Blue Jays on her back deck, by the end of the summer they will SOMETIMES eat out her hand, sometimes... This kid just walked up to a bird and started petting it! It could have been sick I guess, but it did not flop or struggle to fly off it just flew away, far away, without effort....
Later that day I was still totally amazed! I kept obsessing over what I saw, "What an amazing gift God has given that young man... I don't know what he can't do... but I know I will never be able to do what he just did! Amazing!" I will never know who that boy was, what his "special" issues are, or if he was even suppose to be with those people. What I do know is that God gave me a gift! I was at the right place, at the right time, with my eyes open! Watching umbrella boy did make me think about my boys... what are the amazing things they are doing right in front of me? Am I watching? Do I really see their amazing gifts? There are lists of things that they will never do, but what can they do?
So, please keep your eyes open and look for the AMAZING things around you!
God, thank you for that gift! Please help me to keep my eyes open! I want to see the amazing things you are doing in my life and in the life of my boys!
Monday, May 17, 2010
Angles Among Us
Welcome back! If this is your first time joining this blog, welcome. Please feel free to read through past blogs. We are a family with two biological sons who have Down syndrome (Caleb - almost 7 & Joshua - 3). The purpose of this blog is to encourage those who have loved ones with DS and to educate those who do not. I pray you enjoy!
Too often I go through life without taking time to see the blessings all around me. More times than not my "blessings" are people, not things or money... "angels" if you will! I want to dedicate this blog to just a few of the "angles" in my life.
The first angel I would like to mention is Tina Whitby. She is one of my most cherished friends! Tina and I have been friends for ten years now. She is one of those friends that I want to become! I can talk to her about anything and know that she will love me, yet she will give me her honest opinion. She has been at my side during some of my happiest and darkest moments. It was Tina (9 months pregnant herself) who decorated my house for the homecoming of Caleb. It was Tina who saw fatigue setting in, so she took Caleb when he was a baby for the night. It was Tina who ALWAYS saw Caleb as just a boy, looking past his Down syndrome, even when I could not! Than it was Tina's house that became Caleb's second home when Joshua arrived. The first 18 months of Joshua's life was spent at doctor's appointments, surgeries, and week long hospital stays. Where was Caleb? At Aunt Tina's, of course! Aunt Tina is Caleb's favorite! In fact one time I forgot to send a show-and-tell object to school with Caleb. The teacher said he stood proudly before his classmates and announced, "Aunt Tina!" Followed with some Caleb jargon and then a few more, "Aunt Tina!"'s.
It was Tine who quite literally took the fall for Caleb once. We were at a Christmas bowling party and Caleb took off running down the very slick, greased isle. With out hesitation Tina took off after him, breaking his fall. Caleb was just fine, Aunt Tina on the other hand fell HARD! Tina came up saying, "All I could think about was Caleb's neck! I just could not let him hit his head!" Caleb's neck has some laxity that makes him more susceptible to serious spinal injuries. With out regret, Tina spent almost 6 months recovering from protecting Caleb! (Frank and I felt horrible for her!) Tina and her family are not just great friends, they are family! To call Tina a "friend" is not a strong enough term, a sister is a bit closer, but I prefer ANGEL. Tina is truly a God send in my life! (I love you Tina and am blessed because of you!)
Because Caleb and Joshua require a bit more attention than other kids their ages (both still in diapers, speech delays, no two way conversation... just to name a few things), we can't leave them with just any one. We need to know that whoever watches them is physically and mentally able to accept the challenge. Date nights are few and far between, to say the least... God has sent a "family of angels" into our life to offer a little reprieve.
Barb and Jeff Hannah have become the boys' "Illinois Grandparents"! The first time Barb suggested bring the boys to their house so Frank and I could go on a date we smiled and said, "Awe, that is so nice. Thanks, we may have to do that!" But not really sure how serious they were, we just let it drop. Barb called me a few times before we put it on the calendar. To be quite honest, she had to almost pursue me to watch the boys. We did not want to burden them. We saw our boys as a challenge, so we expected everyone to see them that way (shame on us). The Hannah's truly saw our boys as a blessing! That touched my soul to the deepest part of my being! Having the boys over became a family ordeal, their daughters (Jody & Jackie) would come home from college for the night just to spend time with Caleb and Joshua! Jody even bought Caleb a touch and feel book and Joshua a Build-A-Bear just because she thought they would like them. She was right! We know that the boys are having a great time and are in a safe place when they are with the Hannah's! We now feel like we can call and ask if the boys can come over, rather than make them hunt us down. By loving our boys they have loved us! (Thank you Hannah's! We all love you!)
Finally, I can not mention "angels" with out talking about my own Mom! After having children of my own my relationship with my Mom has gone from Mother-Daughter to Mother-Mother relationship. She has dropped everything to be with after the birth of both boys. A few times she has spent a week at time with Caleb while Joshua was in the hospital. My step-dad (Steve), though being newly weds and not having children of his own, did not hesitate to let her leave. She has accommodated for their needs when we visit and allowed them to just be boys! Mom is an incredible Grandma!
To be honest I never truly understood the love of a mother until I became one! This journey of being a mother of special needs kids has been an emotional challenge for me, but I did not understand that it could be an emotional challenge for my Mom as well... I called her one afternoon when Caleb was still a toddler, I was so burdened by the path before me I could not see straight. I was just venting, crying, & morning to my Mom when she began to cry as well, "Betsy, I just wish I could take this pain away for you! I wish I could make it all better!" I froze... My mom was saying the exact words that I had uttered to Caleb so many times, only she was saying them to ME! It was a revelation: my Mom loves me as much as I love Caleb! She wants to take away MY pain! She wants ME to have the best life possible! She feels for ME the way I feel for MY boys! Now when my Mom tells me that she loves me or that she is proud of me, I hear it differently... Because I know what it like to see my children face challenges and over come them! Mom is a God-send, an Angel! (I love you, mom!)
Take some time to look at your own life... because there truly are ANGELS AMONG US!
Too often I go through life without taking time to see the blessings all around me. More times than not my "blessings" are people, not things or money... "angels" if you will! I want to dedicate this blog to just a few of the "angles" in my life.
The first angel I would like to mention is Tina Whitby. She is one of my most cherished friends! Tina and I have been friends for ten years now. She is one of those friends that I want to become! I can talk to her about anything and know that she will love me, yet she will give me her honest opinion. She has been at my side during some of my happiest and darkest moments. It was Tina (9 months pregnant herself) who decorated my house for the homecoming of Caleb. It was Tina who saw fatigue setting in, so she took Caleb when he was a baby for the night. It was Tina who ALWAYS saw Caleb as just a boy, looking past his Down syndrome, even when I could not! Than it was Tina's house that became Caleb's second home when Joshua arrived. The first 18 months of Joshua's life was spent at doctor's appointments, surgeries, and week long hospital stays. Where was Caleb? At Aunt Tina's, of course! Aunt Tina is Caleb's favorite! In fact one time I forgot to send a show-and-tell object to school with Caleb. The teacher said he stood proudly before his classmates and announced, "Aunt Tina!" Followed with some Caleb jargon and then a few more, "Aunt Tina!"'s.
It was Tine who quite literally took the fall for Caleb once. We were at a Christmas bowling party and Caleb took off running down the very slick, greased isle. With out hesitation Tina took off after him, breaking his fall. Caleb was just fine, Aunt Tina on the other hand fell HARD! Tina came up saying, "All I could think about was Caleb's neck! I just could not let him hit his head!" Caleb's neck has some laxity that makes him more susceptible to serious spinal injuries. With out regret, Tina spent almost 6 months recovering from protecting Caleb! (Frank and I felt horrible for her!) Tina and her family are not just great friends, they are family! To call Tina a "friend" is not a strong enough term, a sister is a bit closer, but I prefer ANGEL. Tina is truly a God send in my life! (I love you Tina and am blessed because of you!)
Because Caleb and Joshua require a bit more attention than other kids their ages (both still in diapers, speech delays, no two way conversation... just to name a few things), we can't leave them with just any one. We need to know that whoever watches them is physically and mentally able to accept the challenge. Date nights are few and far between, to say the least... God has sent a "family of angels" into our life to offer a little reprieve.
Barb and Jeff Hannah have become the boys' "Illinois Grandparents"! The first time Barb suggested bring the boys to their house so Frank and I could go on a date we smiled and said, "Awe, that is so nice. Thanks, we may have to do that!" But not really sure how serious they were, we just let it drop. Barb called me a few times before we put it on the calendar. To be quite honest, she had to almost pursue me to watch the boys. We did not want to burden them. We saw our boys as a challenge, so we expected everyone to see them that way (shame on us). The Hannah's truly saw our boys as a blessing! That touched my soul to the deepest part of my being! Having the boys over became a family ordeal, their daughters (Jody & Jackie) would come home from college for the night just to spend time with Caleb and Joshua! Jody even bought Caleb a touch and feel book and Joshua a Build-A-Bear just because she thought they would like them. She was right! We know that the boys are having a great time and are in a safe place when they are with the Hannah's! We now feel like we can call and ask if the boys can come over, rather than make them hunt us down. By loving our boys they have loved us! (Thank you Hannah's! We all love you!)
Finally, I can not mention "angels" with out talking about my own Mom! After having children of my own my relationship with my Mom has gone from Mother-Daughter to Mother-Mother relationship. She has dropped everything to be with after the birth of both boys. A few times she has spent a week at time with Caleb while Joshua was in the hospital. My step-dad (Steve), though being newly weds and not having children of his own, did not hesitate to let her leave. She has accommodated for their needs when we visit and allowed them to just be boys! Mom is an incredible Grandma!
To be honest I never truly understood the love of a mother until I became one! This journey of being a mother of special needs kids has been an emotional challenge for me, but I did not understand that it could be an emotional challenge for my Mom as well... I called her one afternoon when Caleb was still a toddler, I was so burdened by the path before me I could not see straight. I was just venting, crying, & morning to my Mom when she began to cry as well, "Betsy, I just wish I could take this pain away for you! I wish I could make it all better!" I froze... My mom was saying the exact words that I had uttered to Caleb so many times, only she was saying them to ME! It was a revelation: my Mom loves me as much as I love Caleb! She wants to take away MY pain! She wants ME to have the best life possible! She feels for ME the way I feel for MY boys! Now when my Mom tells me that she loves me or that she is proud of me, I hear it differently... Because I know what it like to see my children face challenges and over come them! Mom is a God-send, an Angel! (I love you, mom!)
Take some time to look at your own life... because there truly are ANGELS AMONG US!
Sunday, May 16, 2010
Good Grief!
We are a family with two biological sons (Caleb-almost 7 & Joshua-3)who have Down syndrome! If this is your first time joining us, welcome! Please feel free to read through past blogs. This blog shares some of the unique challenges that our family faces! Feel free to send an email if you would like to contact me: mom2tri21boys@gmail.com
One unique challenge that I faced is grief! Many people grieve for many different reasons... the fact is I have grieved for many different reasons (death of a parent, disappointment, friends moving, miscarriage, change in life plans). But the birth of a child is not normally associated with grief! Yet that is exactly where I found myself almost seven years ago...
Frank (my wonderful husband)and I were finally ready to make the two-some a family of three. When we received the news that Caleb had Down syndrome our world shattered! I felt like my-dream-Caleb had died! He was not at all what I expect... or what I wanted for that matter... I wanted a boy that would grow up to be an athlete, a doctor, a teacher, an actor, a fireman, a police man, a businessman, a husband, a dad... I did not expect... well... I did not want... let me be really honest, I did not want Down syndrome!
The grieving began... Like with the death of my Dad I found myself extremely "weepy". Just thinking about Down syndrome would make me cry. I would cuddle Caleb and just start sobbing, not just a few tears but gut wrenching sobs! I even tried making deals with God, "If you will just fix Caleb I will..." or "Some how God make me the one with a disability not Caleb!" But God's answer was, "This, my child, is the path I have chosen for you. Let me lead you!"
Grief does not stay at home it goes wherever you go, like to Target. Caleb was only a few weeks old and we were in the baby section at Target... I saw two other moms talking and laughing as they picked through the cute clothes. Their toddlers were sitting so nicely while the moms enjoyed shopping. My mind was so clouded with grief that I became angry with these two strangers! I was silently yelling at them, "How dare you be so happy when I am so unhappy?! How can anyone be happy?! I hate you for being so happy!!!!" No words escaped my mouth, I just stood frozen on the verge of tears, so I grabbed Caleb and we left...
Or there was the time at church. Caleb was a bet older, a year or so. During the service a video was played: a mother had to bring her special needs adult daughter on an airplane. Across the isle a man complained to the stewardess that he wanted this young lady moved because she was bothering him and his family. The stewardess was faced with the challenge of telling this mom that her and her daughter needed to be relocated. Finally while mom was being shown alternative seating options, a man sat next to the daughter. He listened to her and comforted her while she cried about her grandfather's death. Finally the young lady fell asleep... As the video continued with the uncomfortable plot I became anxious... I felt like I would explode! So I darted to the bathroom before my emotion became uncontrollable. I hardly reached the door of the lady's room when a fountain of burning tears gushed forth. But without warning the door opened and an older woman took me in her arms and just hugged me. "Will people really treat him that way? Are people really going to look at him like? Are people really that cruel?" Through her tears this stranger gently said, "Yes they will..." We stood in the bathroom crying for what seemed like hours... I finally learned that Sandy has a grown daughter with special needs. Years latter she told me that she saw a reflection of herself (25 years ago) in my eyes that day... she saw the same fear, anger, and confusion that she knew all too well! Sandy has become on of God's angel's in my life!
Honestly I spent almost a solid two years grieving the loss of my "dream child". Slowly I began accepting my new life, and I started to see joy and happiness again! My eyes were opened and I saw Caleb as a blessing, not a mistake. I started to dream "special dreams" for my "special Caleb"! Believe me when I say that grief hurts more than any physically pain on earth... the pain reaches into the depths of the soul! But after grabbing a hold of God's hand and just allowing Him to drag me through the trenches of sorrow and anger... grief was freeing! Grief was good!
Caleb was almost four when Joshua was born. Shock of all shocks Joshua was born with Down syndrome as well! But this time it was just really, really weird... odd... strange... unusual... quite simply unheard of! But not all that life shattering. Oh, other people were kind of funny to listen to when we told them that Joshua also had DS. They did not know what to say, so they said some really crazy stuff! But, my most cherished response came from my good friend Abby. Just months before I met Abby, they lost their two year old son Austin. With many health complications added to Down syndrome his little body just gave out. Upon meeting, Abby and I quickly became friends and shortly after that Joshua was born. When Abby heard the "shocking news" that Joshua had Down syndrome, she yelled out, "I am so jealous! I am so jealous! I am so excited for you!"
Oh, there are still times I am moved to tears... but let's be real, that is just being a Mom! There will always be times that I will wish (grieve if you will) that Caleb & Joshua are more like their "typically developing" peers! But I can also assure you that there will be many times I am glad they are not!
"Thank you, God for my boys...just they way they are!"
One unique challenge that I faced is grief! Many people grieve for many different reasons... the fact is I have grieved for many different reasons (death of a parent, disappointment, friends moving, miscarriage, change in life plans). But the birth of a child is not normally associated with grief! Yet that is exactly where I found myself almost seven years ago...
Frank (my wonderful husband)and I were finally ready to make the two-some a family of three. When we received the news that Caleb had Down syndrome our world shattered! I felt like my-dream-Caleb had died! He was not at all what I expect... or what I wanted for that matter... I wanted a boy that would grow up to be an athlete, a doctor, a teacher, an actor, a fireman, a police man, a businessman, a husband, a dad... I did not expect... well... I did not want... let me be really honest, I did not want Down syndrome!
The grieving began... Like with the death of my Dad I found myself extremely "weepy". Just thinking about Down syndrome would make me cry. I would cuddle Caleb and just start sobbing, not just a few tears but gut wrenching sobs! I even tried making deals with God, "If you will just fix Caleb I will..." or "Some how God make me the one with a disability not Caleb!" But God's answer was, "This, my child, is the path I have chosen for you. Let me lead you!"
Grief does not stay at home it goes wherever you go, like to Target. Caleb was only a few weeks old and we were in the baby section at Target... I saw two other moms talking and laughing as they picked through the cute clothes. Their toddlers were sitting so nicely while the moms enjoyed shopping. My mind was so clouded with grief that I became angry with these two strangers! I was silently yelling at them, "How dare you be so happy when I am so unhappy?! How can anyone be happy?! I hate you for being so happy!!!!" No words escaped my mouth, I just stood frozen on the verge of tears, so I grabbed Caleb and we left...
Or there was the time at church. Caleb was a bet older, a year or so. During the service a video was played: a mother had to bring her special needs adult daughter on an airplane. Across the isle a man complained to the stewardess that he wanted this young lady moved because she was bothering him and his family. The stewardess was faced with the challenge of telling this mom that her and her daughter needed to be relocated. Finally while mom was being shown alternative seating options, a man sat next to the daughter. He listened to her and comforted her while she cried about her grandfather's death. Finally the young lady fell asleep... As the video continued with the uncomfortable plot I became anxious... I felt like I would explode! So I darted to the bathroom before my emotion became uncontrollable. I hardly reached the door of the lady's room when a fountain of burning tears gushed forth. But without warning the door opened and an older woman took me in her arms and just hugged me. "Will people really treat him that way? Are people really going to look at him like? Are people really that cruel?" Through her tears this stranger gently said, "Yes they will..." We stood in the bathroom crying for what seemed like hours... I finally learned that Sandy has a grown daughter with special needs. Years latter she told me that she saw a reflection of herself (25 years ago) in my eyes that day... she saw the same fear, anger, and confusion that she knew all too well! Sandy has become on of God's angel's in my life!
Honestly I spent almost a solid two years grieving the loss of my "dream child". Slowly I began accepting my new life, and I started to see joy and happiness again! My eyes were opened and I saw Caleb as a blessing, not a mistake. I started to dream "special dreams" for my "special Caleb"! Believe me when I say that grief hurts more than any physically pain on earth... the pain reaches into the depths of the soul! But after grabbing a hold of God's hand and just allowing Him to drag me through the trenches of sorrow and anger... grief was freeing! Grief was good!
Caleb was almost four when Joshua was born. Shock of all shocks Joshua was born with Down syndrome as well! But this time it was just really, really weird... odd... strange... unusual... quite simply unheard of! But not all that life shattering. Oh, other people were kind of funny to listen to when we told them that Joshua also had DS. They did not know what to say, so they said some really crazy stuff! But, my most cherished response came from my good friend Abby. Just months before I met Abby, they lost their two year old son Austin. With many health complications added to Down syndrome his little body just gave out. Upon meeting, Abby and I quickly became friends and shortly after that Joshua was born. When Abby heard the "shocking news" that Joshua had Down syndrome, she yelled out, "I am so jealous! I am so jealous! I am so excited for you!"
Oh, there are still times I am moved to tears... but let's be real, that is just being a Mom! There will always be times that I will wish (grieve if you will) that Caleb & Joshua are more like their "typically developing" peers! But I can also assure you that there will be many times I am glad they are not!
"Thank you, God for my boys...just they way they are!"
Tuesday, April 6, 2010
Kids Say Some Funny Things!
If this is your first time visiting my blog, welcome! Feel free to read through past blogs. I am sharing the adventures of raising our two biological sons with Down syndrome. Caleb is 6 ½ and Joshua is 3. I hope you enjoy!
It has been quite a while since I have had the chance to blog, sorry… I want to share some really funny things that other kids have said. I hope you get a good hardy, belly laugh at some of these great words!
A good friend Kyle (age 8 or 9 at the time) told his mom and dad that he meet a new “friend” at school. He said that this friend reminded him of Caleb. Kyle’s parents ask “How so?” After pondering this question for a while he carefully answered, “Well… he’s a man of few words!” They laughed and asked a few more questions than realized this new friend had Down syndrome! Kyle continued to play with and “look out for” his friend even when it was not popular with his other friends! We are blessed to have friends like Kyle!
Jared (age 6 at the time) and his family came to Joshua’s first birthday party. He watched as Frank changed Joshua’s diaper. Jared stood in complete and utter amazement then simply stated yet almost questioned, “Joshua has his privates?!” Not quite sure where Jared was going with this statement Frank remained silent as Jared continued, “Jordane (his sister) is FIVE YEARS OLD and she STILL doesn’t have her privates yet!!!” It was as if Jared had been waiting silently all of his life for Jordane to “get her privates.” Frank controlled his laughter until Jared left the room….To say the least Jared’s parents had a little talk with him a few days later!
Another friend, Trevor (age 11 at the time), got off the school bus one day very upset. There was kid on the school bus who was not being very nice and was taking other people’s stuff. This upset Trevor to no end! Trevor’s mom started coaching him about how to deal with bullies. But after thinking about the situation his mom realized that the boy may have some special needs… she was correct in her assessment of this young man. So her coaching changed to how to be sensitive, nice and understanding of those with special issues. After a great talk with his mom Trevor sighed, “I just wish all people with special needs looked like Caleb (and Joshua) so I would KNOW that they have special needs!”
We are truly blessed to have friends at embrace our kids! These parents don’t just want their children to be the “nice kids”, they want their children to grow up to be awesome adults… and they will be! My plea to all parents, grandparents, aunts, uncles, friends don’t be afraid to talk about Down syndrome or other special needs with your kids. Let them have friends that are different than them. Ask questions… and answer their questions. And yes, your kids will say some funny things too... and that's okay!
It has been quite a while since I have had the chance to blog, sorry… I want to share some really funny things that other kids have said. I hope you get a good hardy, belly laugh at some of these great words!
A good friend Kyle (age 8 or 9 at the time) told his mom and dad that he meet a new “friend” at school. He said that this friend reminded him of Caleb. Kyle’s parents ask “How so?” After pondering this question for a while he carefully answered, “Well… he’s a man of few words!” They laughed and asked a few more questions than realized this new friend had Down syndrome! Kyle continued to play with and “look out for” his friend even when it was not popular with his other friends! We are blessed to have friends like Kyle!
Jared (age 6 at the time) and his family came to Joshua’s first birthday party. He watched as Frank changed Joshua’s diaper. Jared stood in complete and utter amazement then simply stated yet almost questioned, “Joshua has his privates?!” Not quite sure where Jared was going with this statement Frank remained silent as Jared continued, “Jordane (his sister) is FIVE YEARS OLD and she STILL doesn’t have her privates yet!!!” It was as if Jared had been waiting silently all of his life for Jordane to “get her privates.” Frank controlled his laughter until Jared left the room….To say the least Jared’s parents had a little talk with him a few days later!
Another friend, Trevor (age 11 at the time), got off the school bus one day very upset. There was kid on the school bus who was not being very nice and was taking other people’s stuff. This upset Trevor to no end! Trevor’s mom started coaching him about how to deal with bullies. But after thinking about the situation his mom realized that the boy may have some special needs… she was correct in her assessment of this young man. So her coaching changed to how to be sensitive, nice and understanding of those with special issues. After a great talk with his mom Trevor sighed, “I just wish all people with special needs looked like Caleb (and Joshua) so I would KNOW that they have special needs!”
We are truly blessed to have friends at embrace our kids! These parents don’t just want their children to be the “nice kids”, they want their children to grow up to be awesome adults… and they will be! My plea to all parents, grandparents, aunts, uncles, friends don’t be afraid to talk about Down syndrome or other special needs with your kids. Let them have friends that are different than them. Ask questions… and answer their questions. And yes, your kids will say some funny things too... and that's okay!
Thursday, January 14, 2010
Highs & Lows
If you are joining this blog for the first time, welcome! Please feel free to read through past blogs. I have two natural children with Down syndrome and this blog offers a reflection of our life.
Today was a day of emotional "highs" and "lows".
This morning I went over to St. Louis University and spoke to first year medical students about being a mother with two children who have Down syndrome. What an honor! This was my third year being a "guest" speaker. I was able to just update my talk and add a few pictures to the slide show. Sounds so simple, but I still get "butterflies" every time I talk. Joshua (the 2 1/2 year old) was my stage buddy and he did fabulous!
The students were very attentive and asked some really great questions! In many ways I feel like this is one way I can advocate for all people with Down syndrome. I am always humbled and blessed by this kind of opportunity! As I drove home I was mumbling a silent little prayer, "Lord, this is what I was created to do! Thank you for opening this door! My boys are such a gift and I know you, Lord, are the one who gave them to me! Thank you! Send me, Lord, wherever you want me to go!"
With every "high" there is a low... Shortly after getting home from St. Louis University I received a phone call from school. Caleb's teacher called to inform me that he had punched his aid in the face. That Caleb is having "increasingly aggressive" behavior and that it has become a "real problem"... I just wanted to cry (oh, wait I did as soon as I got off the phone). I know Caleb is a VERY strong willed child, but I had no suggestions...
The teacher and I brainstormed some things. So, the next step will be to do a Functional Behavior Assessment so that a Behavior Plan can be implemented into his IEP (Individual Education Plan). For some time I have been thinking Caleb needs to see a Neurologist for sensory issues and "autistic" traits. We already have an appointment, but it is not until March. So, I called the Pediatrician's office it see if they could expedite the proses for us. The nurse (our favorite nurse) said she would call a few offices for us to see what she can do. I love our Pediatrician and her staff!
So today I have felt the "high" of being an advocate. By speaking up and sharing our story, I really felt like I was making a difference! Yet that "high" was short lived... the reality of life met me at the back door... There is always an issue... there will always be something that needs to be dealt with... Now my prayer is sounding something like this, "Lord, please just give me strength. Help me balance life in a way that I am serving you and my family. Help me, Lord, to be faithful no matter the issue... I just want to effectively help Caleb so that he can function appropriately... Lord, no matter the challenge I know you are in charge and you love us! Thank you! One more thing, Lord... I know I said to send me any where, but I really did not want to go to the Principal's office.. but if that is where you are sending me than I will go..."
It seems life is just one issue followed by another with very brief moments of sanity and peace!
Today was a day of emotional "highs" and "lows".
This morning I went over to St. Louis University and spoke to first year medical students about being a mother with two children who have Down syndrome. What an honor! This was my third year being a "guest" speaker. I was able to just update my talk and add a few pictures to the slide show. Sounds so simple, but I still get "butterflies" every time I talk. Joshua (the 2 1/2 year old) was my stage buddy and he did fabulous!
The students were very attentive and asked some really great questions! In many ways I feel like this is one way I can advocate for all people with Down syndrome. I am always humbled and blessed by this kind of opportunity! As I drove home I was mumbling a silent little prayer, "Lord, this is what I was created to do! Thank you for opening this door! My boys are such a gift and I know you, Lord, are the one who gave them to me! Thank you! Send me, Lord, wherever you want me to go!"
With every "high" there is a low... Shortly after getting home from St. Louis University I received a phone call from school. Caleb's teacher called to inform me that he had punched his aid in the face. That Caleb is having "increasingly aggressive" behavior and that it has become a "real problem"... I just wanted to cry (oh, wait I did as soon as I got off the phone). I know Caleb is a VERY strong willed child, but I had no suggestions...
The teacher and I brainstormed some things. So, the next step will be to do a Functional Behavior Assessment so that a Behavior Plan can be implemented into his IEP (Individual Education Plan). For some time I have been thinking Caleb needs to see a Neurologist for sensory issues and "autistic" traits. We already have an appointment, but it is not until March. So, I called the Pediatrician's office it see if they could expedite the proses for us. The nurse (our favorite nurse) said she would call a few offices for us to see what she can do. I love our Pediatrician and her staff!
So today I have felt the "high" of being an advocate. By speaking up and sharing our story, I really felt like I was making a difference! Yet that "high" was short lived... the reality of life met me at the back door... There is always an issue... there will always be something that needs to be dealt with... Now my prayer is sounding something like this, "Lord, please just give me strength. Help me balance life in a way that I am serving you and my family. Help me, Lord, to be faithful no matter the issue... I just want to effectively help Caleb so that he can function appropriately... Lord, no matter the challenge I know you are in charge and you love us! Thank you! One more thing, Lord... I know I said to send me any where, but I really did not want to go to the Principal's office.. but if that is where you are sending me than I will go..."
It seems life is just one issue followed by another with very brief moments of sanity and peace!
Sunday, December 20, 2009
Help?
If you are visiting this blog for the first time, welcome! Please feel free to visit past blogs... We are a family with two "natural" children with Down syndrome...
Have you ever needed help? Some times it is really difficult to admit that help is needed... It becomes even more difficult when that help is some what abstract (when the answer is not clear cut or the answer is emotionally hard to accept). Yet... when those emotional hurdles are jumped the and help is accepted there is a bit of freshness to life... Why is help so hard to accept?
Accepting help is admitting that whatever we are doing or how we are doing is not working. Or, that our circumstance is beyond what we can handle on our own. Accepting help requires humility and honesty... it is saying, "I don't have it all figured out... I need help..."
In the past few months some very exciting things have been happening with the boys: Caleb is becoming more potty friendly, he is learning to read, and he is becoming very independent. Joshua has learned to walk, he can feed himself, and he wants to do everything Caleb is doing. The boys are making great stride and we are so proud of them! Yet they frequently need help (dressing, tying shoes, wiping, bathing, walking, staying focused, cutting food...). I give them help gladly and willingly...
A long with these very exciting accomplishments I have had to stop and admit that I could use some help. (Okay you can laugh...) We were not sure that Joshua would be walking for pre- school. He not only has low muscle tone (from the DS) but he was born with clubbed feet. We have done surgery, casting, braces... nothing seemed to help. His left foot trips him up all the time (literally). With the help of his Physical therapist we started looking into a "push chair" (wheel chair) that would be transport safe for on the bus. She was bold enough to mention that Caleb may benefit form a chair as well. (He likes flop on the ground when he does not want to do something - like in the middle of Walmart, the parking lot, church, school, zoo, park, restaurant...) Not only does he "flop and drop," he has serious sensory issues so with the wrong type of noise or touch he has a complete melt down. Please... I did not want one wheel chair let alone two! "Come on, people already stare at us! I don't want two wheel chairs for people stair at as well!" I did not say that out loud of course... but can you hear the little tantrum I am throwing?! I agreed to meet with the representative but made it very clear that I did not want "push chairs" that looked like a wheel chairs!
By the grace of God someone gave us a "transport" chair for Joshua!!! Amazing... these things are thousands of dollars. And yes, it looks like a wheel chair... I am not selfish (or wealthy) enough to say, "Sorry, I don't want this free chair because it looks like a wheel chair." We (the PT, the boys and I) meet with the "wheel chair" guy to look at options for Caleb and take measurements. Caleb was beyond crazy that day and Joshua likes to be just like his big brother. It was a fun day (do you hear the sarcasm?). We also talked about funding (we can't afford these chairs)... Insurance first than if that does not work Variety Club St. Louis' Children's Charity http://varietystl.org/ said they would help pay for it.
We could move forward.... so what was my problem? Me! I was my own problem... Emotionally I was not ready to admit that I needed help... That my boys needed a chair... "I don't want to be stared at..." "I don't want to explain..." "I don't need..." I... I... I... But it is not about me! Let's be real honest, we will always be stared at... I will always get to explain and educate about DS... and I need to be willing to accept any help I can get! Once I could see past myself the chairs became a blessing! A HUGE blessing... a back saving blessing! We are still waiting on Caleb's to arrive, but Joshua's is wonderful! No frills, but it can carry up to 100 lbs. and moves like no stroller out there (that would be because it is a "chair" not a stroller)! Even though it is way too small, there are many times Caleb has been stuck in the "chair" because he would not get up off the ground (back saving, I tell you).
Help?... yes, please, I will take all the help I can get!
Have you ever needed help? Some times it is really difficult to admit that help is needed... It becomes even more difficult when that help is some what abstract (when the answer is not clear cut or the answer is emotionally hard to accept). Yet... when those emotional hurdles are jumped the and help is accepted there is a bit of freshness to life... Why is help so hard to accept?
Accepting help is admitting that whatever we are doing or how we are doing is not working. Or, that our circumstance is beyond what we can handle on our own. Accepting help requires humility and honesty... it is saying, "I don't have it all figured out... I need help..."
In the past few months some very exciting things have been happening with the boys: Caleb is becoming more potty friendly, he is learning to read, and he is becoming very independent. Joshua has learned to walk, he can feed himself, and he wants to do everything Caleb is doing. The boys are making great stride and we are so proud of them! Yet they frequently need help (dressing, tying shoes, wiping, bathing, walking, staying focused, cutting food...). I give them help gladly and willingly...
A long with these very exciting accomplishments I have had to stop and admit that I could use some help. (Okay you can laugh...) We were not sure that Joshua would be walking for pre- school. He not only has low muscle tone (from the DS) but he was born with clubbed feet. We have done surgery, casting, braces... nothing seemed to help. His left foot trips him up all the time (literally). With the help of his Physical therapist we started looking into a "push chair" (wheel chair) that would be transport safe for on the bus. She was bold enough to mention that Caleb may benefit form a chair as well. (He likes flop on the ground when he does not want to do something - like in the middle of Walmart, the parking lot, church, school, zoo, park, restaurant...) Not only does he "flop and drop," he has serious sensory issues so with the wrong type of noise or touch he has a complete melt down. Please... I did not want one wheel chair let alone two! "Come on, people already stare at us! I don't want two wheel chairs for people stair at as well!" I did not say that out loud of course... but can you hear the little tantrum I am throwing?! I agreed to meet with the representative but made it very clear that I did not want "push chairs" that looked like a wheel chairs!
By the grace of God someone gave us a "transport" chair for Joshua!!! Amazing... these things are thousands of dollars. And yes, it looks like a wheel chair... I am not selfish (or wealthy) enough to say, "Sorry, I don't want this free chair because it looks like a wheel chair." We (the PT, the boys and I) meet with the "wheel chair" guy to look at options for Caleb and take measurements. Caleb was beyond crazy that day and Joshua likes to be just like his big brother. It was a fun day (do you hear the sarcasm?). We also talked about funding (we can't afford these chairs)... Insurance first than if that does not work Variety Club St. Louis' Children's Charity http://varietystl.org/ said they would help pay for it.
We could move forward.... so what was my problem? Me! I was my own problem... Emotionally I was not ready to admit that I needed help... That my boys needed a chair... "I don't want to be stared at..." "I don't want to explain..." "I don't need..." I... I... I... But it is not about me! Let's be real honest, we will always be stared at... I will always get to explain and educate about DS... and I need to be willing to accept any help I can get! Once I could see past myself the chairs became a blessing! A HUGE blessing... a back saving blessing! We are still waiting on Caleb's to arrive, but Joshua's is wonderful! No frills, but it can carry up to 100 lbs. and moves like no stroller out there (that would be because it is a "chair" not a stroller)! Even though it is way too small, there are many times Caleb has been stuck in the "chair" because he would not get up off the ground (back saving, I tell you).
Help?... yes, please, I will take all the help I can get!
Tuesday, December 8, 2009
Pee Party!
If you are joining this blog for the first time, welcome! Feel free to read past posts...
This past weekend my mom and step-dad came to visit us from the great state of Kentucky (Grayson, Kentucky to be exact). We had a wonderful time visiting, and both boys loved the attention they received from Grandma and Grandpa! But the highlight of the entire weekend was on Sunday as the grandparents were packing up to leave...
I was talking with my mom as she was packing. Frank was out side taking things to the car and the boys were watching Veggie Tales! Being a mom of young children my ears are always on "hyper mode". One ear is always listening out for the boys, ALWAYS! Mid conversation with my mom I hear the bathroom door... "Oh, no!" I announce and run to the bathroom before it is decorated with toilet paper, or before Joshua (the 2 1/2 year old) can finger paint with commode water. Much to my surprise Joshua is still in the living room enjoying Veggie Tales... "Where is Caleb?" I ask myself. "Caleb is 6. He is too old to be playing in the bathroom... Please, Lord, not Caleb... I thought he was past this..." I quietly say in my head.
I open the door to the bathroom... it is Caleb! But he is not destroying the room is standing like a big boy, lights on, pants down, seat up, ready to pee!!! I quickly close the door and give the boy some much deserved privacy. I nearly cried with pride! Caleb was going pee pee by himself! I (along with Grandma and Grandpa) stood just outside of the bathroom listening to the ever so beautiful sound of Caleb urinating... As he opened the door we all cheered and clapped and sang his praise. We had a Pee Party for Caleb!
Now to parents out there with "typically" developing children this may seem a bit late in life... Caleb is six years old for goodness sakes... You are right! But with the Down syndrome many things happen on a slightly different schedule. Caleb has several factors that are working against him, once you understand these factors you will be celebrating with him! Kids with DS can have low muscle tone/control, therefore they have a hard time "holding it". There can be low sensory as well, meaning they do not feel that they need to go potty. Finally there is the issue of communication. Caleb has many words but pronunciation is a real factor. Caleb pees and poops on the toilet, however we have to physically take him there. Sunday he was able to listen to his body, control his urges and than take care of his need by himself!!!
I know we are not there yet... he has not repeated this great feat again... But he will and when he does we will have anther Pee Party!
This past weekend my mom and step-dad came to visit us from the great state of Kentucky (Grayson, Kentucky to be exact). We had a wonderful time visiting, and both boys loved the attention they received from Grandma and Grandpa! But the highlight of the entire weekend was on Sunday as the grandparents were packing up to leave...
I was talking with my mom as she was packing. Frank was out side taking things to the car and the boys were watching Veggie Tales! Being a mom of young children my ears are always on "hyper mode". One ear is always listening out for the boys, ALWAYS! Mid conversation with my mom I hear the bathroom door... "Oh, no!" I announce and run to the bathroom before it is decorated with toilet paper, or before Joshua (the 2 1/2 year old) can finger paint with commode water. Much to my surprise Joshua is still in the living room enjoying Veggie Tales... "Where is Caleb?" I ask myself. "Caleb is 6. He is too old to be playing in the bathroom... Please, Lord, not Caleb... I thought he was past this..." I quietly say in my head.
I open the door to the bathroom... it is Caleb! But he is not destroying the room is standing like a big boy, lights on, pants down, seat up, ready to pee!!! I quickly close the door and give the boy some much deserved privacy. I nearly cried with pride! Caleb was going pee pee by himself! I (along with Grandma and Grandpa) stood just outside of the bathroom listening to the ever so beautiful sound of Caleb urinating... As he opened the door we all cheered and clapped and sang his praise. We had a Pee Party for Caleb!
Now to parents out there with "typically" developing children this may seem a bit late in life... Caleb is six years old for goodness sakes... You are right! But with the Down syndrome many things happen on a slightly different schedule. Caleb has several factors that are working against him, once you understand these factors you will be celebrating with him! Kids with DS can have low muscle tone/control, therefore they have a hard time "holding it". There can be low sensory as well, meaning they do not feel that they need to go potty. Finally there is the issue of communication. Caleb has many words but pronunciation is a real factor. Caleb pees and poops on the toilet, however we have to physically take him there. Sunday he was able to listen to his body, control his urges and than take care of his need by himself!!!
I know we are not there yet... he has not repeated this great feat again... But he will and when he does we will have anther Pee Party!
Wednesday, October 7, 2009
Just another crazy day!
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Today was just another day... busy, non eventful, crazy day! So here's how today went:
6:30 a.m.: I open my eyes but do not hear the boys so I try to close them again for a few more minuets. No need for the alarm, because I just get up. I do not sleep that soundly any way... so I hear the boys when ever they wake
6:45 a.m.: I hear the boys laughing and "talking"... that always puts a smile on my face! I say a quick "Thank you Lord for my boys!" and I hit the ground running.
6:45 - 7:45 a.m.: It is all about getting my slow-poke Caleb ready for school. Coaxing him to pee in the toilet, which takes forever... Trying to convince him to eat... Putting on one sock, then the other, now time for shoes... Chasing him to put on his Lift Vest (his special vest that he wears at school)...Combing a few hairs against his will... Now time for the jacket... Do I hear the bus? Yep, grab the back pack... herd him out the door (more like carry)... Redirect his attention to the bus not the yard toys... Clap as he walks up the stairs on the bus... Stand and wave "I love you!" good buys...
Sigh, take a deep breath...
8:00 - 8:30 a.m.: Change Joshua's very soggy diaper... Sit at the table and eat some very yummy Raisin Bran while Joshua pigs-out on his yogurt and the rest of Caleb's yogurt and some crackers and some milk. I get Joshua cleaned up from his "fun" breakfast that he is wearing. I let him watch some Super Why while I run up stairs to get his sheets to throw in the wash before Joshua's Physical Therapist comes... oops, the door bell... grab the sheet and run to open the door.
8:30- 9:30 a.m.: I say hi to PT and excuse myself for a moment to put on some "real" clothes... Joshua walks and tries to kick the ball... Oh, poor guy he tripped on the ball and hurt his pride... He needs his mommy for a moment... I quickly throw the laundry in the wash while waiting for Joshua to fallow my voice... We are playing a little "walking" hide-and-seek game... Because of the Down syndrome (low muscle tone) and clubbed feet Joshua (2 1/2 years old) is just now wanting to walk most of the time... his knees still give out quite a bit and his feet trip him, but he has drive... He wants to walk!
9:30 - 10:00 a.m.: Say buy to PT... switch laundry to drier... make a few peanut butter and honey sandwiches and pack a few gold fish for latter... Finally I get to go pee (oh, to the little things in life!)... Load Joshua in the van and head to school to get Caleb.
10:00 - 11:25 a.m.: Sign Caleb out of school for a hematology appointment... I could have let him stay home but to be honest I LOVE seeing his wide, excited, loving eyes when he sees me... Call it vain if you wish... I call it pay day! Load the boys in the van an drive to St. Louis... Talk on the phone in the van (on the blue tooth)... The boys eat their sandwiches... Get to Cardinal Glennon Children's Hospital... Unload stroller for Joshua and get the boys out... Sign in at the desk.
11:25 a.m. -1:30p.m.: Waiting room full of really cool toys... A kid named Huey is volunteering in the waiting room so plays with the boys... Huey has some sort of medical condition that makes he head really small, but his heart is larger than life! He said he loves what he does and enjoys playing with the kids... Huey does a great job keeping the toys and his hands very clean! "Caleb Caines!" I have a quick discussion with the nurse about having two children with Down syndrome... "Yes, it is VERY unusual to have two children with Down syndrome... No, we don't know what the chances are because Caleb has trans location and Joshua does not... Yep, we are the lucky pick (more like the blessed)!" Time to see the doctor... he is not concerned with Caleb's blood work (slightly low white counts)... he orders one last set of lab... We are off to the lab down the hall... Now back to the car we go...
1:30 - 3:20 p.m.: Get the boys settled into the van and we head home... but now I am feeling a little guilty that Joshua has been sitting for so long... We stop at a McDonald's that has an outdoor play land on the way home... I love the dollar menu! They play and eat for a while and I laugh and watch... They are so cute playing together and trying to "play" with the other kids... Oh, no I smell a poopy... time to go! We load up and go home.
3:20 - 6:00 p.m.: Joshua fell asleep in the van so I carry him to bed for his nap... Caleb sees our high school neighbor girl and hugs her to pieces... She brought him a special treat and a book that she thought he would like... Caleb is a ladies man! I cut the power to the house and switch out four outlet in our 100 year old home, while Caleb enjoys his new book... Turn on the electric and test my little project... they work! Time to start dinner, get Joshua up, and help Caleb with sight words...
6:00-8:00 p.m.: "Thank you God for our day and our food and our family... Yea, God!" We eat... I try to get Caleb to say his sight words and after pain staking efforts he starts saying them... Lots of praise and high-fives and Caleb is ready for some Elmo as he reward... I fold and put away clothes as the boys watch Elmo Potty Time... Now it is time for bathes and bed...
Sigh... sit and relax for a moment...
Time for me to lay in bed and read my Bible and fall asleep... resting for the day to come...
Today was just another day... busy, non eventful, crazy day! So here's how today went:
6:30 a.m.: I open my eyes but do not hear the boys so I try to close them again for a few more minuets. No need for the alarm, because I just get up. I do not sleep that soundly any way... so I hear the boys when ever they wake
6:45 a.m.: I hear the boys laughing and "talking"... that always puts a smile on my face! I say a quick "Thank you Lord for my boys!" and I hit the ground running.
6:45 - 7:45 a.m.: It is all about getting my slow-poke Caleb ready for school. Coaxing him to pee in the toilet, which takes forever... Trying to convince him to eat... Putting on one sock, then the other, now time for shoes... Chasing him to put on his Lift Vest (his special vest that he wears at school)...Combing a few hairs against his will... Now time for the jacket... Do I hear the bus? Yep, grab the back pack... herd him out the door (more like carry)... Redirect his attention to the bus not the yard toys... Clap as he walks up the stairs on the bus... Stand and wave "I love you!" good buys...
Sigh, take a deep breath...
8:00 - 8:30 a.m.: Change Joshua's very soggy diaper... Sit at the table and eat some very yummy Raisin Bran while Joshua pigs-out on his yogurt and the rest of Caleb's yogurt and some crackers and some milk. I get Joshua cleaned up from his "fun" breakfast that he is wearing. I let him watch some Super Why while I run up stairs to get his sheets to throw in the wash before Joshua's Physical Therapist comes... oops, the door bell... grab the sheet and run to open the door.
8:30- 9:30 a.m.: I say hi to PT and excuse myself for a moment to put on some "real" clothes... Joshua walks and tries to kick the ball... Oh, poor guy he tripped on the ball and hurt his pride... He needs his mommy for a moment... I quickly throw the laundry in the wash while waiting for Joshua to fallow my voice... We are playing a little "walking" hide-and-seek game... Because of the Down syndrome (low muscle tone) and clubbed feet Joshua (2 1/2 years old) is just now wanting to walk most of the time... his knees still give out quite a bit and his feet trip him, but he has drive... He wants to walk!
9:30 - 10:00 a.m.: Say buy to PT... switch laundry to drier... make a few peanut butter and honey sandwiches and pack a few gold fish for latter... Finally I get to go pee (oh, to the little things in life!)... Load Joshua in the van and head to school to get Caleb.
10:00 - 11:25 a.m.: Sign Caleb out of school for a hematology appointment... I could have let him stay home but to be honest I LOVE seeing his wide, excited, loving eyes when he sees me... Call it vain if you wish... I call it pay day! Load the boys in the van an drive to St. Louis... Talk on the phone in the van (on the blue tooth)... The boys eat their sandwiches... Get to Cardinal Glennon Children's Hospital... Unload stroller for Joshua and get the boys out... Sign in at the desk.
11:25 a.m. -1:30p.m.: Waiting room full of really cool toys... A kid named Huey is volunteering in the waiting room so plays with the boys... Huey has some sort of medical condition that makes he head really small, but his heart is larger than life! He said he loves what he does and enjoys playing with the kids... Huey does a great job keeping the toys and his hands very clean! "Caleb Caines!" I have a quick discussion with the nurse about having two children with Down syndrome... "Yes, it is VERY unusual to have two children with Down syndrome... No, we don't know what the chances are because Caleb has trans location and Joshua does not... Yep, we are the lucky pick (more like the blessed)!" Time to see the doctor... he is not concerned with Caleb's blood work (slightly low white counts)... he orders one last set of lab... We are off to the lab down the hall... Now back to the car we go...
1:30 - 3:20 p.m.: Get the boys settled into the van and we head home... but now I am feeling a little guilty that Joshua has been sitting for so long... We stop at a McDonald's that has an outdoor play land on the way home... I love the dollar menu! They play and eat for a while and I laugh and watch... They are so cute playing together and trying to "play" with the other kids... Oh, no I smell a poopy... time to go! We load up and go home.
3:20 - 6:00 p.m.: Joshua fell asleep in the van so I carry him to bed for his nap... Caleb sees our high school neighbor girl and hugs her to pieces... She brought him a special treat and a book that she thought he would like... Caleb is a ladies man! I cut the power to the house and switch out four outlet in our 100 year old home, while Caleb enjoys his new book... Turn on the electric and test my little project... they work! Time to start dinner, get Joshua up, and help Caleb with sight words...
6:00-8:00 p.m.: "Thank you God for our day and our food and our family... Yea, God!" We eat... I try to get Caleb to say his sight words and after pain staking efforts he starts saying them... Lots of praise and high-fives and Caleb is ready for some Elmo as he reward... I fold and put away clothes as the boys watch Elmo Potty Time... Now it is time for bathes and bed...
Sigh... sit and relax for a moment...
Time for me to lay in bed and read my Bible and fall asleep... resting for the day to come...
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