Showing posts with label Therapy. Show all posts
Showing posts with label Therapy. Show all posts
flexibility
10/20/2008
Kids with Down syndrome are notoriously flexible. They are the envy of all of us tight muscled, inflexible adults.
Wil can literally fold in half - stomach on thighs, head resting on his feet - with ease and comfort. While sitting down he routinely pulls his straightened leg up beside his head. Show off!
This flexibility is not due to all the calisthenics he does. And I certainly did not genetically pass it to him. Simply put, kids with Down syndrome have loose ligaments around their joints. While this makes them super flexible and bendy it is not necessarily such a great thing. When Wil was a baby he had to wear tiny hip hugger type pants in order to hold his hips in, otherwise they would just fall out when lying on his back. Think frog legs. He still does this to a degree. Also, the ligaments around Wil's ankles are so weak that it took him quite a long time to bear weight on his legs without his ankles rolling over. This also prevented him from walking until he was around three. His ankles are still very weak but they are getting stronger. Additionally the weak ligaments leave most kids with Ds without an arch in their foot, which can make walking difficult.
Like many other areas of development the strength will come. It will come differently for each kid but it will come. We have seen huge improvement in Wil just in the last 12 months. His walking is much stronger, his balance is improving, and his ankles are tolerating more weight. He is working hard right now on bearing weight on one foot. It's tough work for him but he pushes through and keeps getting stronger.
And when he has had enough work and his body is tired out, he just folds up, hides his face, and refuses to untangle.
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Reading
10/07/2008
When Wil was one month, two weeks old he started receiving early intervention therapies. These therapies included physical, occupational, and speech. When we moved to SC an early interventionist was added to the list, each seeing him weekly. At first it was a little tough watching him in therapy. He had such a rough time. He resisted every step of it - particularly physical and occupational where he had to work so hard. Over time he came to love both of those therapies and has proven to be a really hard worker, pushing through gross motor exercises like he is in training for the olympics.
Speech therapy, however, has been a favorite from the beginning. Wil enjoys the various instruments the therapist uses to massage his facial muscles to "wake up" his mouth and he loves all the books. Next to playing with musical toys, "reading" keeps Wil's attention longer than anything else. He flips the pages, points, makes his corresponding sounds, and flips some more. 
Wil doesn't speak yet, we don't know when he will. He does communicate through sign, pointing, and other vocalizations. And boy can he vocalize! He may not be able to form words yet but he will not be outdone by his brother's loud mouths. But when Wil is quiet and I go looking for him I usually find something like this. 
Curious George is a favorite. In fact, he can do a killer monkey imitation!
Speech Camp Finale
7/03/2008
For the last month Wil has been attending Speech Camp for three hours every weekday morning. It functions a lot like pre-school with an emphasize on speech and language development. The University of South Carolina runs the camp and staffs it with students earning a Master's in Speech/Language Pathology. Apart from $25 for materials there's no charge for the camp. So the USC students get their intern hours and the kids get some extended speech therapy over the summer.And Wil? He loved it! Our guy is most definitely social and he loves to interact with others. His new in home Speech Therapist cannot get over how attentive and cooperative he is during her hour with him. We hear that from all of his therapists. That is Wil. When anyone sits down on the floor he will situate himself directly in front of them and wait for the play to begin.
And music? He loves that, too. He stomps his feet, swings his head, gestures wildly with his hands, and has a big ole grin on his face. So speech camp was right up his ally.
Input from teachers who seemed to adore him, lots of play, and lots of music. Today we got to see some of what they have been working on. They had an end of camp program. To be honest I expected it to be chaos. What, with 20 kids that are speech delayed, learning delayed, some cognitively and developmentally delayed like Wil. How could it not be? And for sure I thought Wil would have to be held by a teacher in order to keep him from his quick bear walk escape. Boy, I was wrong. Wil sat on his designated spot on stage, stomped his feet and signed along to some of the songs. And he grinned and clapped and grinned and clapped. 
In the picture below you may notice him tapping beneath his chin. This is his sign for "Nonnie," whom he had just spotted in the crowd.
And here he is signing "pop, pop, pop" (both hands palm out moving in a circular motion) as they sing a popcorn song. This was clearly his favorite of all the songs. 
He was so delighted with himself! And he was by far the most enthusiastic clapper!
After their performance the teachers began handing out completion certificates to each of the kids. But Wil, finding this part a bit too boring, decided he was done. So he got up and walked away. 
He made a beeline for his Papa. 
And then continued his applause. We were applauding too, grinning big for our boy, as this simple program reminded us of the important moments in life.
The Transition Begins
2/06/2008
Wil was born two months early. During his month in NICU we received his diagnosis and found out heart surgery was impending. We were also introduced to the concept of early intervention for special needs children. This service is offered by the state to children who are or will be "delayed." It includes physical therapy, occupational therapy, speech therapy and in some cases, as in our state, a weekly visit with an early interventionist. The first three years of therapy are received in home or clinic and then the child "transitions" to the school system where he is supposed to receive his services through the district. Wil began receiving therapy when he was six weeks old - two weeks after leaving NICU - after a little bit of pushing on our end. (they didn't want him to start until he was six weeks beyond his adjusted age, i.e. due date, but we insisted that because he was here and not actually negative 4 weeks old he should be seen asap.) He has been receiving therapy ever since with only two significant breaks; the first break was at five months old for his heart surgery and the second was one year ago when we moved from the Sunshine State to the Palmetto State. 
(This is M, Wil's OT. Wil loves working with him)
We have become very comfortable with Wil's therapy routine, his progress and abilities, and his obvious delays. When I look at Wil I see him in the context of our family which includes a little brother who is the same size and interested in many of the same things. Our context also includes our church family where Wil stays in the nursery since he is not yet walking. So in my eyes he just fits in. Now, I am aware that he is 12 to 18 months older than most of these kids but I just don't think about it often. He is who he is and I have always been okay with that.
However, today, reality kicked me in the knee's. Wil had his third of six transition meetings/evaluations. This morning we saw the psychiatrist. Wil was placed in the designated pre-school chair (after failing to follow instructions and climb in it himself) and sat attentively at the table before the evaluator. I sat in the corner behind him. The evaluation involved giving Wil one task after another to see how well he did. With each passing test the lump in my throat grew larger and the burning in my nostrils intensified. Anyone could see that he was not doing well but it was really emphasized by the phsychiatrists repeated comment of "oh he is just sooo cute," as if that was going to put a huge grin on my face and cause me to brush off what was becoming painfully clear. Wil is really delayed. After Wil's test I was asked many questions about his abilities at home. Most of my answers went something like this, "ummm, no he's not really doing much of that" or "well, occasionally he does x, y, or z but not consistently."
During this hour long session some of the grief that occasionally sneaks in was banging on my heart. I couldn't ignore it or busy myself with something else or pretend that Wil was exactly where he needs to be. I couldn't escape the 7 x 7 room where I was watching him do all the wrong things on every single test that was put before him. I also couldn't escape Wil's enthusiasm. Even though he put the circle in the square he clapped and yelled "aayyyyy" after he did it. Even though he couldn't pull the red block through the opening in the glass box he applauded himself for lifting the box up to retrieve the prize. Even though he couldn't put the peg in the hole he cheered when he got close. I couldn't escape the fact that Wil tries hard and he delights in the process. I couldn't escape the fact that as hard as our reality occasionally feels Wil continues to teach me simple yet profound lessons about what is most important and valuable in this short life we have been given. It is something I need to be reminded of often.
(This is M, Wil's OT. Wil loves working with him)We have become very comfortable with Wil's therapy routine, his progress and abilities, and his obvious delays. When I look at Wil I see him in the context of our family which includes a little brother who is the same size and interested in many of the same things. Our context also includes our church family where Wil stays in the nursery since he is not yet walking. So in my eyes he just fits in. Now, I am aware that he is 12 to 18 months older than most of these kids but I just don't think about it often. He is who he is and I have always been okay with that.
However, today, reality kicked me in the knee's. Wil had his third of six transition meetings/evaluations. This morning we saw the psychiatrist. Wil was placed in the designated pre-school chair (after failing to follow instructions and climb in it himself) and sat attentively at the table before the evaluator. I sat in the corner behind him. The evaluation involved giving Wil one task after another to see how well he did. With each passing test the lump in my throat grew larger and the burning in my nostrils intensified. Anyone could see that he was not doing well but it was really emphasized by the phsychiatrists repeated comment of "oh he is just sooo cute," as if that was going to put a huge grin on my face and cause me to brush off what was becoming painfully clear. Wil is really delayed. After Wil's test I was asked many questions about his abilities at home. Most of my answers went something like this, "ummm, no he's not really doing much of that" or "well, occasionally he does x, y, or z but not consistently."
During this hour long session some of the grief that occasionally sneaks in was banging on my heart. I couldn't ignore it or busy myself with something else or pretend that Wil was exactly where he needs to be. I couldn't escape the 7 x 7 room where I was watching him do all the wrong things on every single test that was put before him. I also couldn't escape Wil's enthusiasm. Even though he put the circle in the square he clapped and yelled "aayyyyy" after he did it. Even though he couldn't pull the red block through the opening in the glass box he applauded himself for lifting the box up to retrieve the prize. Even though he couldn't put the peg in the hole he cheered when he got close. I couldn't escape the fact that Wil tries hard and he delights in the process. I couldn't escape the fact that as hard as our reality occasionally feels Wil continues to teach me simple yet profound lessons about what is most important and valuable in this short life we have been given. It is something I need to be reminded of often.
Special Needs
12/12/2007
At one and the same time I seem to want to communicate to others that our lives, because of Wil's presence, are not any different than anyone elses and our lives are quite a bit different than everyone elses. We strive to advocate for Wil, to remind others that having Down syndrome simply gives him an extra 21st chromosome and that given time he will accomplish many of the things his peers will accomplish. And we do believe that he will. But our lives are different. When I look at how my friends that do not have kids with special needs spend their time or plan their outings I realize, yes our lives are different. I am not complaining. It is our reality and I wouldn't change it. I have been thinking about this reality the last few days though. While certainly not exhaustive, here are a few ways you know you have a child with special needs in your home:
8. You don't ever buy a toy without thinking about it's therapuetic value.
9. Insurance companies won't touch your child with a ten foot pole.
10. But that's okay because you find there are good programs out there to help out.
11. You know which ER's to avoid.
12. You have your doctor's private number.
13. Under no circumstances do you cancel an appointment with a specialist.
14. You live with a mild physical and emotional weariness.
15. You could take up part time work as a PT, OT, SLP (okay, not really, but it feels like it).
16. You can't believe your pride when the smallest of milestone's are met.
17. You can't believe your amazing good fortune that God brought this child into your family.
1. Medical files are housed in three ring binders, not folders.
2. You have had to ditch one pediatrician in search of another that knows at least as much as you do about your child's medical needs.
3. Painting the table with yogurt is Occupational Therapy.
4. Climbing from floor to chair to table and tossing dishes, while discouraged, is Physical Therapy and secretly applauded.
5. You have had to hand your child over for at least one major surgical procedure with fear and trepidation.
6. Spitting is Speech Therapy. As is blowing repeatedly into a harmonica, whistle, or any other instrument - Ouy Vey!
7. The staff at the doctors office's know you by name.
8. You don't ever buy a toy without thinking about it's therapuetic value.
9. Insurance companies won't touch your child with a ten foot pole.
10. But that's okay because you find there are good programs out there to help out.
11. You know which ER's to avoid.
12. You have your doctor's private number.
13. Under no circumstances do you cancel an appointment with a specialist.
14. You live with a mild physical and emotional weariness.
15. You could take up part time work as a PT, OT, SLP (okay, not really, but it feels like it).
16. You can't believe your pride when the smallest of milestone's are met.
17. You can't believe your amazing good fortune that God brought this child into your family.
In My Own Time
12/05/2007
With some frequency we are asked when Wil is going to walk. He will be three in March. Most kids with Down syndome are walking by 28 months or so; Wil is definitely considered a "late walker." Our answer, of course, is that we don't know. Admittedly I have days when I wish he were walking. Usually that desire springs from my own aching back than from hopes for him. It's not that I don't want him to walk - I do - it's just that I really do enjoy Wil exactly where he is and I enjoy watching him strive, explore, work, and play as he learns about the world around him.
And here they are testing out the kiddie seesaw.
There is news on this subject in the Down syndrome world. A study, here showing that babies that train on a treadmill walk 4-5 months before those that do not. I really like what Jennifer over at Pinwheels said about this. I can't really say it better myself.
And then there is Timothy. He is approaching 15 months and he is not walking. I know. Not that big of a deal. But am I ready for him to walk? Yep, yep I am. You see. He can walk, he just won't! He won't because Wil isn't and he does not do anything that Wil does not do. I know - sweet, right? Wil cruises furniture and walks behind a push toy and that is all T will do. T does it really well and is very stable - I have spotted him transferring and standing alone but he plops as soon as he knows he is seen. T, like his brother, will not walk while holding our hands. He does the noddle legs thing. Absolutely refuses to place weight on them. Although now that Wil is showing interest in standing alone and taking a random step we have our fingers crossed that T is taking notes.
Here they are on the playground. Wil went belly first down the slide, so T went belly first down the slide. 
And here they are testing out the kiddie seesaw.Timothy has also picked up all of Wil's sign language, which is great, though he is seemingly uninterested in trying out verbal communication. Unless it involves guttural squeals.
Timothy and Wil are great buddies. For now, Wil is being looked up to as big brother. He is being admired by Timothy. He is being mimicked throughout the day, it is really sweet. I know that one day that will stop. I know that one day Timothy will grow into his own skin, he will stop wanting to be like his big brother and Wil's place in the family may shift. One day it is going to be Wil trying to keep up with T, so for now I am going to enjoy the dynamic and the fact that I am getting some forced exercise with 28 lbs in each arm.
Serendipity
11/27/2007
James and I had hoped to make a day trip to Asheville today. It wasn't meant to be. Again.
Wil was sick yesterday so we saw the writing on the wall. I have been feeling crummy for over a week now and that peeked last night when during my 2 am coughing spasm I was certain the pressure behind my right eye and ear was going to create a nasty mess for James to clean up. So, since James had already arranged to be off today I called and begged to be seen by my doctor. After explaining my symptoms the good doctor looked in my right ear, laughed, asked how I could even hear, then proceeded to sandblast my ear in order to get a wax cork out (that's right!) and I was quickly diagnosed with a nasty sinus and ear infection and sent home with three prescriptions. Hopefully in a couple of days I will be feeling a little less thick in the head. Maybe.
So, on to our serendipitous moment. After feeding Wil and Timothy (Luke was at Nonnie and Papa's were he was no doubt having a hamburger) I was on the floor working with Wil. We were mainly working on coming from sitting to stand when on his own initiative he removed his hands from me, stood alone and took two steps toward me. The second step may be questionable as he was falling into me but I am counting it! Did you hear the screaming? James and I had him do it again and again and being the dutiful guy that he is he did so until his legs gave out.
Here he is coming to stand. Taking one step. Then another.
My body still feels crummy but my spirits are soaring. We are so proud of this little guy!
We're here, we're here
10/17/2007
We are busy passing some form of illness or another around and around and around. Poor Timothy cannot tolerate his stuffy nose and needs a little extra attention in the evenings. When James is not home this leaves Wil to get into all sorts of mischief. Tonight he escaped from my safe spot for him. I came downstairs to find him back on top of the dinner table. To be fair he was trying to be helpful. He was clearing the evenings dishes for me. I came downstairs to the sound of the plates shattering on the wood floor. Thanks Wil, you sure know how to keep me busy. Oh, and Luke, as usual, looks at me and said, "what mommy, I didn't see. I was drawing."
Tomorrow we have our first of many sessions with the school district as Wil's therapies will transition in March. Over the next several months they will put Wil through a battery of tests that will tell us exactly how delayed he is. On the one hand it is important because this is how he qualifies for services. On the other hand these things stink. We just don't look at Wil and think about all the things he is not doing. We are proud of what he is doing. I was beaming today when I watched him work so hard to swing (in slow motion) his leg over his little bike. He struggled with this seemingly simple task on his own with such concentration and no help. When he got on he just looked up at me and smiled, then honked the horn. :)
Get it Down: 31 for 21!
Tomorrow we have our first of many sessions with the school district as Wil's therapies will transition in March. Over the next several months they will put Wil through a battery of tests that will tell us exactly how delayed he is. On the one hand it is important because this is how he qualifies for services. On the other hand these things stink. We just don't look at Wil and think about all the things he is not doing. We are proud of what he is doing. I was beaming today when I watched him work so hard to swing (in slow motion) his leg over his little bike. He struggled with this seemingly simple task on his own with such concentration and no help. When he got on he just looked up at me and smiled, then honked the horn. :)
Get it Down: 31 for 21!
Milestones
10/14/2007
First, my apologies, to anyone keeping up with my Get it Down: 31 for 21 challenge to post every day for the month of October. The reality is that life - sick kids, migraine headaches, soccer games, you know - sometimes gets in the way. I'll try to get back on track this week.
Last week in physical therapy Wil, I believe, was cussing at his therapist the whole hour. It was demonstrated in the form of stiff bodied screams directed squarely at his sweet and patient therapist who somehow managed to get him to walk despite the protest. (this is testimony to her skill and Wil's perseverance) He was so unhappy with her for making him walk behind his toy walker that his Nonnie bought him and Timothy. When she left we were given strict instructions to get him behind his walker regularly as well as walking with us, using only one hand for support. Our little guy, who is such a hard worker has accomplished both. Here he is cruising the house. 
And now it's time to celebrate the accomplishment!
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