Susan's Blog

Saturday, February 13, 2010

Hope Is Not a Four-Letter Word

For years I have been certain that when parenting an autistic child — or any for that matter — one should not give up hope. It’s too bad that the word “hope” can sometimes conjure up images of sugary, mawkish sentiment, bright-eyed kittens or teddy bears holding balloons. Because the truth is, hope works. Hope is a really good thing and should not become sentimentalized, turned into a four-letter-word.

Today I read a friend’s blogpost about her little boy, and his IEP meeting. The nadir of the meeting was when she was told of her son’s IQ testing and what it led to. You can probably guess. Without going further into that, and how I could relate to the sense of injustice elicited by our children’s low IQ scores, I want to write about where this wonderful mom “K” went with this. The jumping-off point was the IQ/MR thing, but the important thing to me was what K forgot when she jumped.

The whole testing thing made her think about abilities, “normal,” and otherwise. K thought back to some commercial, where a young boy comes home to an empty house and because he’s hungry, he goes and makes himself some mac and cheese. He reads the directions on the box, executes them correctly, serves and then successfully feeds himself. K writes — correctly — about how this mundane set of tasks is actually a miracle. She says

“Do you know how amazing a feat all of that is, for a child to take the initiative to seek out something to eat, read the instructions and follow them, seek out and find the proper utensils for preparation of said food, use the microwave safely and correctly, and then eat the food without burning themselves or dropping the food? To just be able to use a fork? That commercial is a goddamned miracle. M just barely learned how to use a fork about 2 months ago. Just the motion of stabbing the food with the tines and ensuring you don’t overload the fork is actually a very complex task that most people take for granted. M being able to carry out all the steps depicted in that commercial seems like something straight out of a science fiction novel to me.”

K is absolutely correct here. Both the boy in the commercial and her own son have done miraculous things. K knows this.

I remember feeling this way, too. Sometimes I still do. I, too, have watched commercials, birthday parties, sporting events, loving interactions between mother and child, and I, too have come away thinking about how Nat is so different and so unable, and yet I could also understand how amazing Nat’s accomplishments were.

The thing is, there were also times like this, six years ago, where I had no hope that Nat would ever be able to master the next level or the next. It seemed like so many levels to rise to. It seemed like childhood — that precious time in life where many inabilities are forgiven — was too short a time for what he needed to learn.

Yesterday Nat came home and simply — and miraculously — asked me, unprompted, for a snack. Today Nat came into the kitchen and simply — and miraculously — made his own bagel. Yes, they were pre-sliced. Yes, I had briefly gone over his choices. But, at 20, he now can — pretty much — take care of his own physical needs. He did learn how to cook simple meals for himself. Just as, years ago, at last, he did learn how to use a toilet. He learned, over time. He developed, over time. No magic, just good ole education and perseverance. You decide how to pronounce the latter.

Nat’s body and brain grew and developed. There has been no capping-off point, no closing-of-the-window. 0-3 means nothing when you are atypically wired. Just as we don’t have to take to heart what the DSM 1-5 says about us or our kids, we don’t have to take to heart the whole snapping of the elastic mind warnings. They are just guidelines. But the results have infinite variations.

I always thought I had so little time. Now I realize that Nat had time to develop, but that now I have so little time to appreciate my boys as children, for who they are. I squandered so much time worrying about what they were not.


Susan, thanks for this beautiful reminder to celebrate the here and now while still planning and working toward "one day when…"

Such a difficult and tenuous balance. I know my state of equilibrium can be so quickly thrown off by something like an illness-mediated "regression" in skills or worsening of my son's SIB's or emotional lability.

So hard to remember hope in those moments. Until I come here or to other blogs and receive the gifts of perspective wrought by time and experience. Thanks.

— added by Niksmom on Saturday, February 13, 2010 at 10:01 am

Well said, Susan.

I feel the same kind of amazement at developmental achievements when I look at my autistic son and my NT daughter.

Because we have a set of "normal" expectations for "normal" kids, we don't despair when a 2-year old can't use the toilet, for example. We know that, in a year or two, it's likely she'll develop that skill. It's pretty miraculous, even though it's "normal."

When you have an autistic child, the "normal" frame of reference flies out the window. You no longer have the expectation of meeting a set of milestones within a set timeframe. You replace expectation with hope, "normal" milestones with new milestones, and your timeframe expands.

Oh, and the IQ thing–as our developmental ped said, the IQ measurement tools were built around typically-developing kids, so they are a very poor tool for measuring the intellectual abilities of atypical ones.

— added by Squillo on Saturday, February 13, 2010 at 10:52 am

My son's psychometry testing which I got earlier this week says:

IQ testing – mid 60's… very low.
Reading level – 3.2 – Gr 3, 2nd month… the child turned 8 at the end of the year… nothing to sneeze at.
Comprehension 1.6 – mid gr 1… not shocking there either.

He was alone with the psychometrist for over an hour. No prompting, no changing of phrases by parent or EA to make comprehension easier. I think he did amazing.

They mentioned labelling him "developmental" – we're passing at this time. We don't need the label for the services we have/require. They offered a developmental class – but he can get his own clothes, dress himself, is better at most self-help skills than most NT at his age. So we passed there as well as long his IEP remains modified. The work is coming home… the work and testing is IMO appropriate.

I see nothing to be ashamed of. I want him in the academic (developmental) stream in h/s not the developmental one… I was told, there is no reason he shouldn't qualify.

The "official" mtg is next Fri. For a child with such a severe communication delay… we've very proud of him.

— added by farmwifetwo on Saturday, February 13, 2010 at 11:07 am

People learn; your son's a person; therefore, your son learns. This isn't news, but you wouldn't know that to hear the way some people talk about autism! You are very happy watching him learn; and isn't that what a mother does, anyhow? You give a child a good place to learn, and a friendly environment, and then you watch while he goes about his business.

The idea that when you pass a certain age you're no longer learning is an old myth that needs to disappear ASAP. Autistic, developmentally delayed, or whatever–learning doesn't stop at some arbitrary age. I look forward to reading your reports of your son's learning in the future. 🙂

— added by chaoticidealism on Saturday, February 13, 2010 at 1:30 pm

Well said.

— added by VAB on Saturday, February 13, 2010 at 7:58 pm

I've had this thought for a while, that maybe because some kids with autism have such a tough time starting out in the the "learning how to learn" process (for many reasons), that school should last through the college years, then adult living could start. Sometimes, these independently living, job skills, language skills, just plain skills, start emerging quicker and quicker in the teenage and early twenties years. If we could keep these young adults in school (and key here is the school funding piece), they could gain so much and be (as ready as any of us are) ready to jump off into the adult world. We can dream, right?

— added by Michele on Sunday, February 14, 2010 at 1:41 pm

And this is why I simply adore you, Susan. You have been such a guide and inspiration to me. What would I do without experienced autism moms like you? It is such a true comfort to me to read about your struggles with Nat, to see the progress (despite the setbacks), and to remind myself to suck it up and get a grip and put my big girl panties on. 🙂 Thank you. From the bottom of my heart.

— added by ASDmomNC on Monday, February 15, 2010 at 12:15 pm

For your next book, I think you should compile all the posts in this blog! Seriously! I can't tell you how many gems of wisdom I have taken from you – so many times you have lifed my spirits along this journey. Today's gem, not putting an expiration date on your child's ability to learn, is something I hope I remember for many years to come.

— added by S on Monday, February 15, 2010 at 2:43 pm

Oh, my goodness. This is beautiful! Exactly, exactly. Thank you for the reminder not to fear that it all has to be done from 0-3, or before they reach school, or before they're teens, or before they're adults.

— added by Brenda on Tuesday, February 16, 2010 at 4:16 pm

Well, I am all teary eyed and weepy as I am in the 2.5 year old stage. Putting so much ridiculous pressure on us, him, to catch up and do all we can do so we have no regrets on these decisions. We don't know how to calm down. We know it intellectually, but we don't how to let our hearts accept what time will or will not do.
Just when I think I have accepted him for who he is and am letting him show me who he is and will be – well, I am back where I started. Still grieving a little, very confused, feeling like I am doing all I can for him, but totally unsure of what that thing is. Thank you for reminding me that he is a human and learning never ends. It's really, really hard to be on this journey. But, your words will sink in as time lets me hear them.

— added by Mom on Thursday, February 18, 2010 at 10:02 pm

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