Monday, October 21, 2013

Stretching the Limits

This week my son turns three.  THREE!!!  How can that be?  It seems as if just months ago we were in the hospital fighting for his life, trying desperately to get him to gain the few precious pounds he needed for his heart surgery.

Now, we're beginning to transition from our early-intervention program, which consists of 2 hours twice a week to pre-school through the school district, which is 4 hours four times per week.

This move entails testing to see how far he has progressed in the three years of early-intervention.  It also allows the school district an opportunity to see where he's at developmentally, and how far he must progress in order to reach the capabilities of 'normal' children his age.

When I arrived at my 'meet the staff' meeting where we would establish his IEP (Individualized Education Programs) for the next couple years, I came prepared to be told that my son, Jacob, needed more therapy to keep up developmentally with the 'normal' kids.  And, although these well-meaning individuals come equipped with degrees and years of experience working with children with disabilities, none of them had met Jacob.  All they knew about him was based on predispositions and what was written on paper.

When I sat down at the table for our meeting I was faced with six staff members who would be caring for my child in one capacity or another for the next 2-3 years.  Each of the ladies were wonderful, personable, and truly had a desire to better Jacob's life.

The first person to speak was Jacob's new Physical Therapist.  She took out his test results based on the Peabody system and proceeded to tell me that there were many things they'd be working on with my son to get him 'up to speed'.  Then she asked me,

      "The test says he walks forward and backward.  Does he run?"

     "Yes,  he was running in the hallways on the way into class.  And he's really quite fast.  I need to work to keep up with him."

     "Oh."  She flashes a confused look on her face, and writes something on her paper.  "Does he walk up stairs?"

     "Yes.  Yesterday he was walking up the stairs one foot per stair unassisted.  He walks down the stairs with the help of the railing, putting two feet on each step, before proceeding to the next."

     "Really?"  the therapist comments, before scribbling on her paper again. "How about jumping?"

     "Take him out to the parking lot and he'll jump all over the parking blocks without effort.  He gets more air than his 4 year old sister does when she jumps."

     "It says here that he can throw a ball 3 feet."

     "Actually, he throws it across the room.  I'm trying to keep him from breaking windows right now."

What this therapist had forgotten is that although Jacob has Down syndrome, he is also a boy...a child.  And like every other child in this world, he has a personality and his capabilities differ in some degree from every other child whether that child has Down syndrome or not.

In this case, he just didn't like his previous Physical Therapist.  Not that she was a bad person; their personalities just clashed, so he refused to test for her for nearly a year.

I had to explain to the new Physical Therapist that Jacob is strong as an ox.  He can do pull-ups on our kitchen table, opens doors, runs, jumps, and does all the things a normal little boy does. In fact I'd hazzard a guess that he can do more.

I had a discussion with the Occupational Therapist about the fact that Jacob tested within the limits of 'normal' in his progression.  The previous OT suggested NO OT for him. At ALL.  This is absolutely unheard of for a child with Downs because they typically have low muscle tone and have a hard time with fine motor skills.  I ultimately agreed with their suggestion that he continue OT because I'd noticed that he cannot work his fingers independently for sign language, and it would ensure he doesn't fall behind in the future.  Besides, can you really have too much therapy?

Even speech therapy came with a few surprises for the ladies.  Up until 2 months ago (that would have made Jake 34 months old - nearly 3), Jacob could not/would not say a single word.  Part of it was due to hearing difficulties - he's had 3 sets of tubes, finally the T-Tubes they put in 2 months ago have stayed and we're seeing progress - and part of it was out of sheer stubbornness.  Now, in the past 2 months, we've seen a massive break-through in speech.  He now knows more than 30 signs, and has voiced 12 words.  This week alone he's said three new words.  That revelation elicited gasps and ooh!'s from the staff. This is in addition to the fact that he points to anything he can't sign or say, shakes his head yes and no, and is perfectly capable of making his wants and needs known in one way or another.  The progression is coming fast and furious!

'So what is the moral of this story?' you ask.

It's simple.  These ladies came into our meeting expecting, based off of predispositions and the statements of others, to see a child who was completely different from the one I presented them.

I, on the other hand, have never had a child with disabilities before.  And I refuse to assume that because of an extra chromosome, he is destined to be an un-thinking, barely-functioning part of society whose role will never be any more important than bagging groceries at the local grocery store, or being the 'happy boy'.  For that reason, I do not give him limits.  In fact, I try to defy them any chance I get.

When they told me that the earliest a child with Downs had ever learned to walk in their program was 16 months, I worked with Jacob until he could walk at 14 months.  When he failed to progress with his PT evaluations at age 2, I went out and bought all the toys needed to help him reach his missed goals.  It was that day, after 2 hours of play time and watching him achieve each of his 'missed' goals that I realized he was just fine.  He was merely stubborn.  Just like all the rest of my children.

That's not to say that I expect Jacob to be the next Einstein, or a neurosurgeon, or an 8th grade English teacher.  But when there are people with Down syndrome in the world who are world-renowned musicians, mayors of cities, music teachers, and a bevy of other roles in society, I have hope.  I remember that my child, though different, is still important, and has a purpose here on this earth.  The range of abilities for people with Downs syndrome is just as broad as the range of abilities of those without an extra 21st chromosome.  Our job as parents, caretakers, and service providers, is to take those abilities or preconceived notions and to give our children a chance to defy them.

If we give our children an opportunity to defy their 'limits' we enable them the chance to experience a better life for themselves.  Society once thought those with developmental disabilities should be institutionalized.  I still believe we are limiting our DD population by not expecting more of them.  It is my hope that we will treat each person as an individual, challenge them to stretch and progress to the best of their abilities, and only then, be satisfied with the end result.

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