Wednesday, September 16, 2009

The Marathon...Slow and Steady

On Monday, we had our meeting to plan Lucas' transition out of the Debbie School and into the Miami-Dade County school system.  This can happen when Lucas turns 3 (next month) or at the end of the school year, we're opting for the latter.  In the middle of this meeting, I took the opportunity to explain that I envision Lucas' education/development like a marathon and not a sprint.  If we wait to push him, say when he enters high school in the hopes he can sprint to the finish line, it likely will be too little, too late.  Instead, Lucas is running a marathon -- slow and steady -- and we are his able, willing, and supportive team who will pace him every step of the way.  It's in envisioning this marathon that I can keep pushing, pushing, pushing, knowing that every single step will add up when he crosses that finish line...victorious!  That's the way I see it.

Back to Monday's meeting...the Debbie School has been very good to and for Lucas as evidenced by his most recent testing.  As of now, Lucas has about a 25% delay in speech compared to his typically developing peers...which is pretty stellar when compared to other kids with Down syndrome, especially because speech tends to be their greatest area of concern/delay.  But wait, that doesn't matter.  What does matter is that according to his most recent cognitive evaluation (which was done in May and we can assume has changed since), his cognitive level is BELOW his speech level which is a bad, bad thing in the world of qualifying for therapies.  You see, even though Lucas has both 1) a qualifying medical condition, and 2) a developmental delay (caused by his medical condition), in order for him to receive speech therapy, he needs to have a 25% or greater speech delay when compared to his cognitive age -- REGARDLESS of his chronological age.  That means that even though he is 34 months old, they don't care if he's cognitively testing like a 26 month old or 18 month old or 9 month old, I guess.  If that's not the most absurd thing I've heard in a while, I don't freakin' know what is!

So...we were told at the meeting that although Lucas will be retested to check his cognitive age, he basically will not qualify for speech therapy.  Hence, the county will stop covering speech therapy.  Lucky for Lucas, the Debbie School will not discharge him from the program and he will keep his twice a week, 30-minute speech therapy sessions with his fabulous therapist, Angelique, who was just as horrified as we were about these developments.  The scary part is that this will continue to be an issue...unless we can show Lucas has a significant delay, the state will not cover services -- speech, occupational, physical therapies. We were already forewarned that he will likely lose his physical therapy service once he graduates from the Debbie School since he can walk, kick, run, and jump, regardless of the quality of movement

It's a double-edged sword, I tell you.  As the parent of a child with a disability, you want nothing more than to tell them to take their services and shove 'em, but you can't cut off your nose to spite your face.  Lucas needs the therapies, he will need assistance, and we need to keep our pride and our egos in check at every meeting where his services come into question.  As a parent, it's so difficult to remind yourself NOT to show any pride in your child's accomplishments, but instead, want him to "under perform" just so he can keep his services.  It's counter-intuitive and frankly humiliating...the system sucks.

For now, we're proud of all the gains Lucas has made in all his developmental areas, and how he continues to be a favorite among teachers and will serve him well. As for us, we will figure out how to get his needs met, even if we have to beg, steal, or borrow in the process. All that matters to us is where Lucas is headed...and that's up, up, up in the right direction!


datri said...

Yeah, school districts don't have to provide services unless there is whatever percentage delay, blah, blah, blah. It's so frustrating, that whole thing. You want your kid to be the superstar, but test badly. Horrible system. And isn't it supposed to be an INDIVIDUALIZED Educational Plan? If that's how it's supposed to be, it's ridiculous that they have some arbitrary number that has to be met.

Lisa said...

Be the squeaky wheel, be consistent, refuse to go away. Keep fighting for what you know is right for Lucas. He is doing so great! You are too!