Life on Our Spectrum

If you think of the autism spectrum as a seesaw, then I have two boys sitting at each end. By today’s definition, one is “high-functioning,” the other is “low-functioning”. Both are quirky. I love their quirks. But one is super social, talks and engages with those around him. And one is nonverbal, stims in the corner and can’t look at me. Even so, both are very loving. Both will creep up on my lap at different times of the day and the hugs each gives are precious. Did I say they are quirky? And that I love their quirks? But I wish that John could speak. I wish he didn’t have to stim, even as I recognize that it’s his way of self-regulating — it seems to require such energy from him. I wish that life were easier for him to process.

It should come as no surprise that in the beginning, I did not believe that Sam was on the spectrum. How could I? They are so different. John’s autism shows itself daily in unusual hand movements, his inability to look at me, his fascination with light and shadow. His brother, by all accounts, is a people person who almost obsessively needs my attention and physical proximity. Eye contact has never been a problem for him. How could this child also be autistic?

Here in my home, in my family, I have the clearest proof that no two children on the spectrum look alike — even identical twins. I have, of course, come to accept Sam’s diagnosis, though it’s been a long road. I recognize that he has difficulty with transitions and that he is hyperlexic and scripts: his language isn’t terribly functional (‘though certainly adorable), and he has worse sensory issues than his brother. All this, and I’m sad to say that I often hope for a day in which John’s autism looks like Sam’s. If only he’d script. If only he’d sing the abc’s over and over and spell everything in sight. If only he could look at me.

Does this mean I don’t love John for who he is right now? No. I am amazed by him daily and by what he’s absorbing from the world around him. I am in awe of his way of looking at the world. But this is a mother’s wish: I want my boys, my babies, to have happy full lives. I want them to have friends who like and accept them for who they are. I am scared of the cruelty of children. I am scared of the first time that someone teases them for being different.

When the weather turned balmy a few weeks ago, we resumed our neighborhood walks. One afternoon, a group of children playing in the cul-de-sac rushed up to say hi. John whined and flapped his hands when we stopped and the “What’s wrong with him? What’s he doing?” hit me like pellets. Whoa, what to say to a group of 4- and 5-year-olds? How to dissipate the uneasy silence among the other neighborhood moms?

Life on our spectrum continues to have highs and lows, and some days are certainly “higher” than others. John is now getting close to 20 hours a week of therapies and has made strides in his programs. He is such an even-keeled boy, very happy most days (except when I need to go the grocery store or Target or any other place with people and noise and bright lights). Sam continues to thrive in his ASD classroom and has a great new friendship with a little girl named Lila. I love that for him.

We will turn three in four short months. I imagine that our spectrum will continue to morph and redefine itself. And thank goodness for that.

11 Comments

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  • You amaze me with your positive outlook and your perseverance. I admire you for all that you have to cope with each day, kudos to you. You have two wonderful children who are as lucky to have you as you are to have them. I just love reading your blog, it is so inspiring!

  • Though I don’t have twins or have both of my boys on the spectrum, I can relate to wanting Roo to be more like Brother-roo. I think it is a normal wish for us to want our boys to have an easier time at things. And this does not mean that we don’t love our boys for who they are and accept them, it is just that it is hard to see them struggle the way they do when we know how much easier life could be for them if they had more words to be able to communicate with.

    Things will continue to change for you and your boys. My experience has been many ups and downs, but lately a lot more ups than downs, which is nice.

    I love reading your blog and already seeing how far both of your two have come.

  • Whenever people ask me, “Are they identical?”, it feels so strange to say “Yes”. Well, to look at them, yes, but even in the womb they were so different. And G. is learning language so much faster than B.

    I imagine John has some surprising, hidden strengths that will show themselves over the next few years. That’s the gut feeling I have about my B.

  • I also enjoy your positive outlook and perseverance!

    You are so fortunate to have started your blog when your boys were so young. You will have so many marvelous moments to look back on.. the successes, the hard times, the things you wonder about that will some day be fulfilled!

    I have 3 boys, only one of whom is on the spectrum, and I am amazed by the differences between them.. then there’s my baby girl who brings even more difference into it all!

  • Hi there–found your amazing blog thru a comment you left on “My Little Cottage” blog and immediatly went to see your blog…I am amazed how similar our stories are.I have 4 yr old twins with autism and they are two very different boys let me tell you. Their names are Solomon and Marlon and are very much a different ends of the spectrum…..I know something was going on with Sol when he was about 10 months old and Mar not until he was almost 2…..they got their diagnosis and we have been in Early Behaviour Intervention for 2 yrs now and they also just started one day a week of preschool this past Sept.
    Their schedule is busier than mine-well,I guess their schedule is MINE too,,,,,hee hee…..we are also VERY interested in RDI.DH and I went to see Gutstein in Vancouver(Canada) last summer for a week….VERY awesome….I will continue to check up on you all and leave posts and everything and my name is Robyn-and am from Canada-British Columbia…VERY nice to meet you and your beautiful boys!!!!!!

  • I’ve just come accross your blog and am really enjoying it. My three year old, George, sounds more like John than Sam, but it’s quite astonishing to me how different every child on the spectrum is. I shall look forward to following their progress!

  • You really do have a great outlook. It is so hard to figure out what our kids need and you have two kids with such different issues. You have to be twice as smart and twice as creative as the rest of us!

    Perhaps experiencing these two different points on the spectrum is what helps provide some balance for you. I think so many of us get caught up comparing our children and wishing our child was “higher functioning” (as though that really exists).

    For example, this weekend my son was the highest functioning child on the soccer field. Then we went to a friend’s birthday party. (Our friend is on the spectrum as were all of the other guests.) Without a doubt we were the lowest functioning (spectrum) child at Chuck E Cheese. It is all so exhausting!

    I think we all get tied up in the “grass is greener” trap. Perhaps the twins’ different experiences help you keep all of this in check.
    You have two beautiful boys reminding you every day that any gift is a good gift and that everyone has their obstacles.

  • It will continue to change… my tutor had to remind me of that.. no matter what, they will grow and age just like other children. Maybe differently… but everyday will be something new.

    S.

  • You are so hopeful and it’s a beautiful thing. It took me YEARS to get there, and my oldest is “only” asperger’s.

    Thank God, hon, that they are getting early intervention. My oldest had nothing at all.

    He’s doing really well, but I will always wonder.

    Your children are beautiful!

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