What’s the matter, can’t decide? Maybe because Junior still can’t properly pronounce his R’s (he’ll grow out of that by the time he turns 7, I swear) and picks his nose and eats it and doesn’t care who’s looking, and you can’t imagine him with an MBA? Yeah, well, welcome to my world.
Last week I met again with the teachers, specialists and educators who will be taking my Down syndrome son Eric under their collective wings for the next 16 years in order to determine the direction his education will be taking during that time, as well as shaping the person he’ll be when he’s 21 and no longer eligible for public schooling and gets transferred to some other program. That’s right, the Individualized Education Plan meeting. IEP. The phrase that strikes terror into the hearts of special needs parents everywhere.
Eric is 5. Here are his strengths, as the therapist saw them:
- Comprehends familiar and routine one-step directions. Which means that “Go in the kitchen and throw away your napkin” is a stretch.
- Able to sort by size (big/small) and length (long/short). Definitely a life skill. I see blocks and sticks in his future for sure.
- Has a strong throw. Need a retarded kid who can throw a ball with remarkable accuracy? I have just the kid.
- Cuts a 3” strip. Another important life skill, although 4” strips are completely safe from Eric’s scissors.
And here are his “needs”:
- Needs to say words in a way we can understand.
- Needs to string more than one word together. Two would be a start.
- Needs to recognize his name from the confusing jumble of letters and words that is our daily reality.
I cried, in a good way, when I saw what they want Eric to work on this year. His main goal? Writing his name. This is a kid who can barely speak his name, knows no letters of the alphabet, frankly doesn’t care about the alphabet, and yet they propose to get him to be able to write his name this year. Good luck. Also, for good measure, they plan on teaching him the entire alphabet and a bunch of numbers.
My baby’s going to learn to write his name.
While this is a worthwhile and useful goal, and is certainly far beyond Eric’s present ability, I couldn’t get past the impression that somehow we are being ripped off here, that the IEP team of specialists were keeping the pony they give to other kids behind a curtain while they talked to us. I want a pony for Eric, too. Where’s his pony?
There’s a magic word when it comes to special needs education in Pennsylvania where Eric lives. The word is “inclusion.” A few years ago there was a major lawsuit that has since impacted special needs education there, causing IEP team members throughout the state to sweat in their little kindergarten-height chairs and make graphs showing to the hundredth of an hour the exact amount of time they expect each special needs child to spend alongside the regular kids. Eric will be spending 21.43% of his day in the regular classroom, but this includes lunch and recess and daily announcements, so it really doesn’t mean much. No pony.
There are other options. The “Life Skills” class they’re pressuring us toward choosing, designed to teach kids what they need to know in order to function with relative independence in the wider world once they are too old for the public school system, is one choice. In it, Eric would learn how to dress himself and use a toilet, how to count money and find things like cookies and oranges and milk in a grocery store, and how to read important signs like “Exit” and “Men.” But by choosing this we remove other options, ones that it’s impossible to know now if they make any sense at all for a five-year old small boy who loves to rock out to Metallica and eat pancakes.
We could hire an attorney and push for that other option, which would include sitting in a classroom with non-special needs kids alongside a full-time personal aide whose sole function would be to keep Eric from wandering off and help him understand whatever the teacher just said. Going down that road, Eric could maybe learn history and geography and how to diagram a sentence and do quadratic equations.
Choice A: Learning how to buy an orange in the grocery store = an eventual job bagging groceries or sorting big blocks from small ones (BONUS: this is one of his strengths! Eric can do this already! Score!)
Choice B: Learning where Paraguay is = an uncertain future, which could well include bagging groceries or sorting big blocks from small ones. Despite the uncertainty, something tells me this is where the pony is.
But does Eric even want a pony?
If you asked him he’d say yes he wants a pony, but he says yes to every question he doesn’t understand. He’s an agreeable kid. Which means I think he’d be just as happy bagging groceries while rocking out to Metallica and sorting big blocks from small ones while eating pancakes.
I wrote a book!
Magical Goddess: A 28-Day Journey to Invoke Your Wild Goddess and Reclaim a Juicy Life
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Hugs and gratitude, Talyaa
In July 2012 I was told I had a few months to live. With the help of my soulmate, I am successfully fighting Stage 4 cancer with comprehensive holistic healing, but we need help and money to continue our Life Genesis Program
Please donate using the Paypal button below or read other ways you can help here: Help Continue The Grand Love Story of Kahuna & Akua. Every amount makes a difference. Thank you!