So What Does a High Functioning Child Look Like?

Before I get started here, can I tell you just how amazing it is that all of a sudden Noah can do all the Animal Baby activities?  I pulled out the Polar Bear issue today, and Noah was able to do most of it, including seeing an animal cracker camel and then being able to pick out the picture of an actual camel among photos of four different animals, just like it was old hat.  Something else he started is repeating  a word here and there as I read a story.  I’m also finding that if I read a word I know he is familiar with in a book, and then I pause, he jumps in and repeats the word.  Oh my gosh, this is AWESOME!!!!

True confession here – the last few months I’ve been dealing with the question, What if Noah’s not “high functioning” after all?  See, that’s what people (including me) say as an encouragement about children with special needs, I hear it a lot with Down syndrome, and I hear it a lot with autism.  I don’t know what I think about that term anymore.  What does it really mean if a child is high functioning versus low functioning?  With Down syndrome, the diagnosis comes along with the automatic assumption that the child will never be living completely independently, that parents will retain parenting responsibilities forever (although I’ve seen a wide spectrum of what that looks like).  Whether the child is high functioning or not will not change that.  I’ve surrendered to that reality.  Yet, I still have this obsessive drive to keep Noah in that  “high functioning” category, in my mind and in others.  I started hearing how high functioning Noah was when he was diagnosed at 6 months of age with Down syndrome.  I had a lot of teacher friends who had experience with children with Down syndrome in the classroom, and they all encouraged me with the knowledge that these special children are such gifts to their families, such blessings.  I was dealing with such mixed emotions at the time, and I wasn’t all too pleased when in one instance in response to my explanation that we though Noah was high functioning said, “It’s just too early to tell, we just don’t know until they get a little older.”

She was right.

And I don’t think he’s old enough yet to know just how high functioning he is.  Part of me is ready to jump on the internet and see just what “high functioning” means in the world of Down syndrome, because I want Noah to be in that club.  And I probably will at some point find a good definition for that term.  But I’m realizing more and more that it doesn’t really matter.  It is what it is, he is WHO he is.  And he will do the best he can with what God has given him.  No one can tell me what his potential is.  No one knows.

Noah will have to be educated by trial and error.  And I will have to learn from other moms and dads out there who have already figured out a thing or two about how special children learn to lead me along on this journey.

Another true confession.  I don’t have a group of girlfriends to chat with about this stuff.  You’re it.

I find socializing stressful because if my family is with me, which they usually are, the children really require constant attention in one form or another.  I’m one of those mamas who needs to know where her children (other than Trinity) are and what they are doing in any social situation.  And Noah, Bella and Seth are all too young and vulnerable to be left on their own to play.  Not to mention Noah’s wandering tendencies which require constant attention.  So I am constantly on alert and scanning the scene – not conducive to any meaningful girl talk.  I tried a mommys night time Bible study, but we live out in the country, and it just wasn’t worth the drive.  I guess I could find something closer, but I still don’t have anyone to talk over the special needs stuff with.

I’m not complaining.  Really in my heart it is just the opposite.  I am so thankful for the way you readers have supported me and encouraged me.  I am grateful for your experience and grateful for your understanding.  Have I mentioned how much I appreciate your encouragement?  I have felt more connected to the special needs community since I started blogging in January than ever before, and each time I read y’alls blog updates, you are equipping me for my tomorrows.  I am truly blessed.

I have a question for you parents of children with autism about this high-functioning issue.  What does high-functioning autism look like?  Are most children with autism on one end of the spectrum?  The statistics are staggering; 1 in 88 children are now being diagnosed with autism.  I know how we all need to take things one day at a time, but how do you see the future?  Are you grooming your children to be fully independent or does having autism interfere with that?  We think of autism as a crisis now as it is affecting so many families.  But when a family has a new baby, they know that baby is going to be dependent on them for the next 18 years.  Nobody expects to have a child who will continue to be dependent on them once they reach adulthood.  What is going on on that front government wise?  Is there support out there for transitional living?  Funding?  I tend to think that this nation is still viewing autism as a childhood illness, but children don’t really grow out of it, do they?  The first wave of the autism epidemic is reaching adulthood – now what?  I do not see our culture as one that is going to embrace the idea of hands-on parenting being a life-long committment.  But can our current socioeconomic structure support people with autism as they reach adulthood?  What gives?

If you address or have addressed this issue on your blog, please send me the link and I will read it and post it.  It’s one of these issues I just can’t quite put to rest until I have some answers.

May God bless each one of you where ever you are on this journey, and please, keep in touch.

Alyson

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6 thoughts on “So What Does a High Functioning Child Look Like?”

  1. Alyson, what a wonderful, honest, and lovely post. You are so “real” so “down to earth”, I bet many of your readers feel like listening to you, sitting at the kitchen table with you. 😉

    I loved your “y’all” 😆 I used to hear that a lot while living in AR.

    Sending you hugs and blessings across.

    Mirjam

    1. Ha! You caught the y’all. I thought about taking it out when I was proofing, but it’s how I really talk, so I left it in. I’ve spent too long trying to fit the mold of what I think I should be, it’s good for me to just let my hair down and let myself be.

      Blessings,
      And thanks for joining in the journey!
      Alyson

  2. I could’ve written this myself! Mostly, about the “girlfriends” part! Facebook is truly my social outlet, and that is enough for me! As far as high-functioning goes, forget about it!!! Those are my two cents anyhow! One person might say I’ve got kids on both ends of the spectrum. Another person might see it differently…..It’s all very subjective. And as you know, things change daily and who knows what changes may come. It simply doesn’t matter in my book. I wondered about it when they were first diagnosed but professionals simply said they were too young to know. Now that they are older, I’ve come to not worry about it. Sounds like your Noah is happy and doing fabulously! What more could a momma want?!

    1. You know, it is such a relief to know I’m not the only one out there who thinks these thoughts. I so desperately want to do what best for Noah and not cut any corners and support him to give him what he needs to live a full and happy life, but I know in my heart no amount of speech therapy, drilling, worksheets, etc. are going to do that for him. They are all secondary to what he really he needs, for me to look into his eyes, his heart, and treasure everything about him, to be available to wonder (and to wander) along side him, to be fully present in each moment with him. Worksheets are easier, I am afraid, but the alternative so much more rewarding!

      Blessings to you – and thanks for joining in the journey.
      Alyson

  3. This post really hit home for me. I could have wrote it myself. We had Cooper evaluated by a child psychologist a month ago who told us that Cooper’s social skills are too advanced to put him on the spectrum. In saying that, Cooper has A LOT Of autistic qualities. Mostly related to his lack of language. Before we were told this from the psychologist, I would always say the same thing. Maybe he is autistic (heart breaking) but he is definitely high functioning. And for some reason, that gave me hope. The term ‘high functioning’ makes it seem better to me. Safer maybe. More hopeful? It’s hard to explain. It’s like yes, you have this diagnosis but you are on the best side of it. The ‘fighting’ side. Good luck mama. That picture on the right side of your blog makes me smile every single time I see it!

    1. Oh, Cooper’s Mom. This sounds SOOOO familiar! I think that term “high functioning” did always make me feel like we were on the best side of it, like somehow we were on the winning side. Noah is very symptomatic for apraxia, but like Cooper and autism, he doesn’t fit all the textbook criteria, so he doesn’t have an official diagnosis. Having a diagnosis could really help therapists come up with a decisive treatment plan, but maybe not having a diagnosis means the therapists (if they are good) will look intently into Cooper and fashion something great and perfect just for him.

      Blessings,
      Alyson

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