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)!
Thursday, April 17, 2014
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 |
 |
| 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!
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