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!
Sunday, December 20, 2009
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!
If you are joining the blog for the first time, welcome! Please feel free to browse past entries...
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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