My child has Down syndrome, which means we entered our county’s Early Intervention Program within days of his birth. Wahoo! Lucky us!
Not so fast.
That meant squat when it came to obtaining services — e.g., physical, speech or occupational therapy. At 4 months, he was approved for play therapy days after being rejected for physical and speech therapies. The reason he was rejected? He wasn’t yet showing a delay.
Um, whoa. A child born with Down syndrome is going to have delays. Period. Why is a program called “Early Intervention” when its slogan is, “Only Once We See a Delay”?
At 4.2 months, he was approved for occupational therapy. The reason? Mostly because I had promised myself not to be outdone again, and possibly I may have mentioned that no one was leaving the house until we got approved for something.
Now, this was our experience with county services through Early Intervention. By Charlie's first birthday, I had finally realized we didn't need the county's approval to give our son the best possible opportunities — we could "go private," and get services wherever we pleased.
Why did this realization take so long? We were newbies, like most parents of a child born with a disability. We were naive and never asked the right questions, so it took a while to realize this, and our service coordinator was less than forthcoming. I learned about the option to access private therapies through other parents — another reason I highly recommend all parents connect with their local community. Experience is invaluable, and veteran parents are always willing to share.
Nonetheless, going private still brings with it the dreaded evaluation. After three and a half years of enduring evaluations by strangers who have the power to approve services or determine the level of service Charlie should receive, I finally stopped silently pleading for him to do well. Why? Because his “off” day might mean we would get the best services possible. Sad but true.
Does that sound like cheating? Hardly. Each performance is up to Charlie, ultimately. It’s like helping your child learn to drive and then watching helplessly as he turns a three-point-turn into a 28-point misdemeanor during his road test.
At 3 years old, Charlie qualified to attend preschool through our public school system. Because children with virtually any disability can have a range of abilities, each child goes through an hour-long evaluation process. We sat at a table on one side of the room, behind a panel of therapists who watched his every step (or non-step). Charlie maneuvered his way through a play room of dreams, self-directed and demonstrating his gross motor, fine motor and speech abilities. I was a wreck.
My husband, who was new to the process, piped in only once on what Charlie could do. I silenced him with a death glare. I knew my son needed a lot of help, and I knew we needed him to demonstrate that himself. When it came time for our first Individualized Education Plan (IEP) meeting, we were relieved to listen to therapists' observations of both his abilities and his challenges. And we are forever thankful for the county service coordinator (a relatively new one for us) who advocated for the maximum three-day school schedule.
The truth is, a parent’s natural instinct is to root for her child and defend him or her to the death. The physical effect is akin to being a passenger in a speeding car. Your right foot finds itself boring a hole through the floor as your fists clench and your teeth leave your tongue bloody.
But you must learn to let go and let nature take its course. You must learn not to argue with an evaluator who notes your child cannot yet hold a spoon properly. You will want to scream, “Well that’s because it’s Tuesday and we don’t hold spoons on Tuesday!” at which time you will appear crazy and inevitably be reminded that it’s Thursday.
Coming to grips with the realization that there’s nothing I can do to improve my child’s performance during an evaluation took a long time. When Charlie was 9 months old, I foolishly agreed to speech and physical therapy evaluations the day after I returned from my first business trip away from my child. I was already flush with emotion, and for two hours I listened to strangers tell me what he couldn’t do.
I was livid. I was emotional. I wanted to kick them out of the house, literally, with pointed-toe boots. Coincidentally, we didn’t get approved for speech or physical therapy that day, and I learned an important lesson. Sometimes, nice mommies finish last in the disability services world. Picture Sally Fields in Terms of Endearment. By God, her daughter was going to get the pain medicine she needed. By God, my child was going to get the services he needed. See the reference to getting approved for occupational therapy, above.
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