Perkins School for the Blind Transition Center

The Lighter Side of the Spectrum: A Mom’s View – Being Jack’s Brother

Every year I write each of my children a letter on their birthday and keep it in a small journal. These letters describe the person they are at that particular age; their likes and dislikes, favorite activities, and overall temperament. The following is an excerpt from the letter I wrote my oldest son this year.


Dear Joey:


You’ve just celebrated your 8th birthday, and it’s been another wonderful year. We’ve watched you blossom into an avid reader (the Harry Potter Series), a somewhat interested baseball player (less dandelion-picking than last year), and a Lego fanatic (you just finished Hagrid’s Hut).

You continue to handle the role as eldest of our clan with grace and ease.  Each of your siblings, especially five-year old Charlie, competes for your attention and it’s sweet to see you direct and manage them during play time.  It’s especially endearing to watch you with two-year old Henry, whom you’ve affectionately nicknamed Twubs. Although you crave quiet space amongst the madness of four siblings, you work hard to maintain composure when your patience is tested (like the time Henry bashed Hagrid’s Hut into pieces with Rose’s mini saucepan).

You and Jack have a very interesting relationship and I’ve really enjoyed watching it over the years. As you learned this year, Jack does have autism and it can make him somewhat challenging as a brother. We waited to tell you about Jack’s diagnoses, simply because we didn’t think it was information you needed or were ready to process. But I think you always knew he was unlike most in many ways.

One time in the kitchen we were all enjoying a family-favorite meal – breakfast for dinner – and you and Charlie were fooling around like the crazy boys you are. Ten minutes into it I lost my patience and threatened to separate you from each other. You protested that I couldn’t seat you apart because Charlie was “best brother.”  Gritting my teeth, I asked about Jack. Wasn’t he a best brother too? You calmly replied, “No Mom, Jack isn’t normal.” What followed wasn’t pretty, basically the Mama Bear in me started bellowing things like, “Why isn’t he normal? Why?”  Ever the cool cucumber you nodded your head down the length of the table in his direction, as he nonchalantly blew his nose into his pancake, rolled the whole thing up, and popped it into his mouth. OK, maybe not so normal.

Then one day it was official. You came home from Lego club and asked, “Does Jack have autism?” You went on to ask questions I’d been hiding in my heart for years. Would he always be autistic? Would he ever get married? Is that why he hates dogs?

A few years ago, we accepted a much-anticipated invitation to your friend Josh’s birthday party. As the time for the party drew near, you became alarmed when you saw me packing Jack’s bathing suit for the water slide. “Please, mom, can’t he stay home?” I explained that we were allowed to bring siblings and Jack loves parties (and Daddy wanted to take a nap with the babies for the afternoon). You complained that I would “start talking to the other moms and you won’t watch him, Mom.  You won’t!” (Note for future, young lad: I might have relented if you hadn’t challenged my parenting.  I dug my heels in.) Of course I would watch him! I’m his mother! Fast-forward to one hour later when I was relaxing with some other parents and looked up just in time to see Jack scale the large water slide sans bathing suit. Your angry glare was not lost on me.

One time I asked you if you ever felt embarrassed by Jack at school, and I braced myself for your answer. Would it be the time he held up the entire bus, kicking and screaming because he didn’t feel like getting on? Or maybe the day he whirled through the school-wide book fair like a tornado? Perhaps its Jack’s latest habit of asking everyone what color their shampoo is. You thought for a minute and said yes; sometimes you are a little embarrassed by something he does. As the pit in my stomach grew you casually explained you wished he wouldn’t give you such a huge hug and kiss whenever you passed each other in the hall because it made your friends laugh.

I know it can’t be easy to be Jack’s brother.  It can’t be easy to have a sibling who has a breakdown at the mere sight of a four-legged animal, or greets you at the end of the driveway after school with only his underwear on screaming the lyrics to Michael Jackson’s “Man in the Mirror”.  Although I know you suffer to some degree because one of your siblings has autism – yes, Disney World is on hold until Jack gets a grip on people in costume – I’m confident there is a flip side to our family’s dynamic for both of you.

For starters, I don’t feel sorry for you because you have a brother with autism. (You’re talking about the same mother who refuses to buy you a Nintendo DS or whatever that thing is because I gave you siblings to play with.  I’m not a softie.)  Jack brings a richness to your life that all those so-called normal families miss out on, and you are learning as much from him as he from you.  Because of Jack, you are learning how to anticipate other’s needs before your own – like warning us when a dog is approaching the bus stop – and how to communicate more creatively.  For the longest time you would come to me to tell Jack things or ask something, now we’re at the point where you know how to elicit answers from him. (“Jack, look at me. Look in my eyes. Now where did you hide my gum?”)

Nothing gives your father and me more pleasure than to hear the two of you converse, play a game, or make mischief together. Last week Jack asked me what he should do if “my friends are mean to me,” referring to some kind of game at lunch time. Without any cue from me, you hopped off your stool, went over to him and at eye level explained the type of game the kids were playing in the cafeteria and how to avoid their taunting.

Just this afternoon we were preparing to head out and see Kung Fu Panda 2, and Jack suddenly refused to go. I was astounded – he loves movies – but you explained he doesn’t like the main character, Po because he’s scary. I turned and asked him if this was true and he said “Yes, Po scares me. I’m staying home.” Sometimes you understand him better than I do, simply because you’re his big brother.

And Jack benefits from you. Without even knowing it, you push him to be a better version of himself all the time.  With your example, he works hard to communicate at your level and achieve the goals you’ve accomplished. I don’t think we can fully understand the importance a boy barely a year older plays in Jack’s development, but I’m certain it’s nothing but positive. The evidence is the love in his eyes and those big embarrassing bear hugs at school.

I wonder if one day you’re going to look back on your childhood with Jack and feel bitter, like you were shortchanged in some way. But I doubt it. I think you’ll appreciate the value of Jack’s brotherhood as you continue to grow your relationship and mature together. He may not be “normal,” and he may like a certain flavor of pancake, but he’s making each one of us a better person in his own way. On behalf of Jack, I’d like to thank you for being such an extraordinary brother – I know if Jack could, he’d thank you himself.

     Do you have a story of your own to share or want to comment on this article? Email me at Carrie Cariello lives in New Hampshire with her husband and five children.

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