To the Parents Who Dread 'Those' Meetings About Their Child With Special Needs

Every day we marvel at the things our son with Down syndrome can do – from climbing the stairs unassisted, to figuring out how to work a smartphone faster than we did! Recently, he’s learned that lions roar, and it’s pretty cute to watch him answer the question “What do lions say?” We proudly share all his new accomplishments with our families and friends, taking to Facebook or Instagram to post video clips or pictures whenever possible and relishing in the fact that our son can do anything he puts his mind to! This doesn’t sound much different from the experiences other new parents have, does it?

But imagine that every six months (or more) you have to sit down with someone, or a team of people, and focus on the skills he hasn’t yet mastered. You have to look at your 2 and a half year old and list the things he cannot do without peppering your answer with “But he tries!” or “He’s almost there” or “He can’t speak more than 40 words, but he can help me load the dishwasher after every meal.” During these meetings, you aren’t supposed to focus on the things he can do, or the skills he’s nearly achieved, or the manners he’s learned.

No. Those meetings are all about focusing on the negatives, on the “deficits” your child has.

You are provided with checklist after checklist of “age appropriate” skills to review and complete. Can your child string three or more words together? Kick the ball forward? Try to run?

Every day you marvel at what he can do. Every day you enjoy hearing him play, and watching him try so hard to jump off a small step. You love hearing his laugh, and it’s fun watching him light up when a big truck or a bus goes by, and wave excitedly at the person behind the wheel. You hold him close, thanking a higher power for choosing you to be this sweet boy’s mom.

But the feelings of pride and joy don’t mean anything on those days. His accomplishments aren’t what those meetings are about.

And it’s heartbreaking.

During those meetings, it’s your job to list the things he can’t do.

He can’t say more than 50 words, spoken or signed.

He can’t jump with two feet.

He can’t use pronouns.

He doesn’t know his colors, or animal sounds, or the difference between big and little.

He doesn’t point out his mom, dad or himself in photographs.

And I just want to scream after each statement “Yet – he can’t do them yet!

But those meetings aren’t about his potential. They aren’t about the fact that he can load the dishwasher, or how he puts his shoes away as soon as he takes them off his feet, or
that he understands English, French and some ASL.

Those meetings are to gain support services or to apply for financial support.  The only way to get that extra help we need is to focus on the deficits. Focus on what he can’t do. Stop seeing the ability.

We are asked to define our child by the things they cannot do in order to get speech therapy, to have PT or OT services come in, or to get funding to help pay for respite care.  We know he needs the extra help; we want him to have speech therapy to help him unlock the vocabulary he’s building quietly when we think he isn’t listening. We need help to teach him feeding, dressing and toileting skills.

Knowing that focusing on the deficits will help us help him doesn’t make those meetings any easier.

So to all the parents who dread those meetings, know we are right there with you. We find those meetings as emotionally and physically draining as you do. We cringe every time we have to say, “he can’t,” or “he doesn’t know how.”

But please know that those meetings don’t define your child, your parenting, or you. And admitting what our children cannot do isn’t admitting defeat. Keep marveling at all your child can do.

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