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Developmental Age: My Child is More than a Number

Alethea Mshar
Special needs mom and Blogger
08/08/18  12:18 PM PST
developmental age

With our leap back into therapies this summer, my boys, who both have Down syndrome, got comprehensive evaluations as the first step in the therapy process. We have been through this process too many times to count in the sixteen years since my older son was born, and one thing never changes. The numbers sting.

I think the first time I was taken aback was when Alex was one and Early Intervention services conducted our first annual review. I had been so proud of his development, until I saw how many months behind he was in all areas of development. It’s not like I didn’t know it or even expect it but seeing numbers there in black and white made me gasp for breath then, as it did again just this week.

This time it was the speech evaluation that did a number on me. Alex has Down syndrome and childhood apraxia of speech, and his severe speech delay is the reason we still seek out therapy at the ripe old age of sixteen, but regardless of all of that, I choked when I saw the numbers.

The Speech Language Pathologist even mentioned that the results showing the developmental age should be taken with a grain of salt; I suppose I’m not the only parent who has had to fight back tears during one of these meetings. Even with her caveat and my years of experience, when she pointed out that his speech was on par with a child of 2.9 years of age, it was a sucker punch to the gut.

It’s a bit ironic, because in our little community, both online and in person, I’m often a reassuring voice to other parents when they become alarmed after seeing a developmental age or IQ. I know all the comforting words to say, I know that my son is more than a number, I know that testing doesn’t define his character or anything else about him. Years ago, I came to terms with the fact that my child doesn’t have to be “high functioning” to have worth and make valuable contributions to the world. We love him as he is, and where he is, and our goal has long been to empower him to his best life and his own goals for independence. There’s a sizeable part of me that feels just plain silly for fussing over it.

developmental age

The measures are a necessary evil, I suppose. The need has to be demonstrated and documented in an objective manner in order to be addressed. I understand the reason for comparisons, norms and measures because we have to know where we stand in order to know where to go, but the flip side of the measure is a one-dimensional description. That measure cannot and never will show how Alex finds creative ways to clarify himself, how hard he works to make himself understood, how much he has to say and how genuine his conversations are. The use of a blunt instrument to determine the lowest common denominator of his verbal skills (or any other skill) is something I accept begrudgingly; a means to an end.

developmental age

I do hope that we eventually find a better way to decide who qualifies for which services, therapies and programs, and what’s more, I think it’s okay, even justified, to get a bit choked up over the score produced by the instruments that must be used, even while realizing that it’s just his current starting point.

 

developmental age

Alethea Mshar is a Special Needs Mom and Blogger.

Read her blog, Ben’s Writing, Running Mom

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