Samuel and autism

Our Samuel. Autistic?

Or just smart, always on the move, a spark of sunshine?

In his parents’ eyes, maybe a bit slow in speech and in social development.

To his grandparents: “He’s still making up time for being premature.” “Leave him alone. Just love him; he’ll be all right.”

All true.

But he’s still Samuel. And his father and grandma and older siblings are learning what he needs and how they can help best.

His mom, of course, is anxious and sometimes sad, but, typically, she’s thrown herself into research and intends to give her son whatever it takes for a richly fulfilled life.

Let me say, please, that I’m new to “autism.” Until now I tossed it into a seldom-opened file that might be labeled “psychobabble” or “My kid has more issues than your kid.”

But even I can admit to long-held misconceptions, such as giving a kid an excuse for poor behavior. Now I would say it’s an inability to get everything going at once: muscle control, speech, reading, relating to other people.

Add to that the fact that autism manifests itself in a full spectrum of degrees, from severe to “just barely,” at the farthest end of the spectrum plus every degree between. Samuel, my first grandchild, apparently falls in “just barely,” (a.k.a. high-functioning autistic spectrum child) and was diagnosed by his mother’s diligence and support from professionals.

Be assured I am not offering a clinical study here. Just thought you might want to read some of the adventures Samuel and Jean are sharing as they start his kindergarten year of home schooling. The anecdotes are mostly from her blog called “Teaching the Spectrum Kid” (http://learningyesican.blogspot.com/) More to come…

Aug. 27, 2009 – Meet Samuel

Samuel is a bright kid who believes he can fly if he holds up two feathers. I'm his Mom, and it is my job to help him reach all that God has for him. This school year will be his first “formal” home schooling year – “formal” because education started for both of us the moment the doctor handed him to me six years ago.

As we got to know each other, I noticed it took him a long time to learn how to communicate. Like so many mothers before me, I started asking doctors, educators, other parents, anyone who could help me know what was going on. In the last few years, “autism spectrum” began to come into focus.

My little boy, at 6, already knows how to read and is mad for spelling and numbers. So where will this year take us? Come along for the ride.

Aug.28, 2009 About Schedules and Hissy Fits

From our previous almost 10 years of home schooling, I know schedules usually end up as an amusing memento by October. My dilemma with Samuel is that he loves to understand how things “work.” Once that's in place, he can be golden.

Take our much-missed trip to the community pool today. It's taken most of the summer, but we've finally worked out a routine that enables Samuel to leave the pool without a spectacular, hissy-fit meltdown. Putting certain transitions into place (“In a few minutes when the lifeguard blows his whistle for adult swim, we'll go home”) he now goes home cheerfully.

I think one of the keys for this school year will be to develop those transitions so he finds his school day “workable” and predictable.

So, on one hand, Samuel communicates like a 3-year-old, sometimes acts like a child stuck in the “terrible 2s,” but is already reading and spelling. He has trouble gripping a pencil correctly, but is fascinated by serifs, those tiny extra lines used in some typeset letters. Imagine very bad handwriting with lots of extra flourishes.

He loves music and can spend hours trying to figure out how something mechanical works.

I am most grateful that Samuel is extremely engaging and seeks to express his love, especially to me. We don't have to deal with the so-common “zoned out” aspects of a spectrum kid. And my heart truly breaks for the moms who say they wished with all their hearts that they could be sure their child understood love. We've been spared that heartbreak, and I am so grateful.

Sept. 10, 2009 What’s a “Spectrum Kid”?

The easiest way to summarize that is to say Samuel is having difficulties that fall on the high-functioning end of the autism spectrum, or as some professionals endearingly put it, he’s a “spectrum kid.”

He has plenty of mental capability, but his behavior can be extremely challenging. What may not seem like a big deal to you or me can be a very big deal to Samuel – a change in schedule, choices that seem arbitrary, having a lot of people around, especially children, can greatly overstimulate him.

I’m beginning to see that he needs to understand how things “work.” Inconsistencies throw him. If you have any phobias (like an unusual fear of heights, spiders, etc.), you might understand something of the stress Samuel faces. But imagine if you experience that level of anxiety every time you see a traffic light (which can appear highly arbitrary to him), or if you have alternative routes to reach the same destination.

“Spectrum kids” will often find ways to stimulate themselves as a means of comfort that they can predict or control. Thankfully, we don’t have to deal with the head-banging or other injurious behaviors that are surprisingly common. Spelling was his “stim” of choice earlier this summer followed by repeating nonsense words now.

How many times can you say “squamwich” or “spiz”?