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.