How Autism Affects a Family
To my middle child,
There is a lot of debate about how birth order affects your life; everything from your personality, your temperament, even what you choose to do for a living.
See, the middle child is not the oldest, and not the baby. They don’t get the freedom of the first-born, or the love and adoration of the youngest.
A lot of the books say the middle child feels left out, or isolated, or has trouble finding their niche within the family.
Others say the middle child will play peacemaker, or become a loner, or misbehave to get attention.
You, my middle son, have been especially dealt a rough hand by the deities of birth order. Smack in the middle of five kids, you are bookended by Jack—an older brother with autism on one side—and on your other side is Rose, our only girl.
Next to Rose is loud, ebullient 6-year old Henry, and flanking Jack is our eldest child, Joey.
Sometimes, understandably, I think you wonder where you fit. I think you feel lost.
We have Joey who seems to be good at everything without trying, who is affable and loving and handsome and fun. Then there is Jack, who is hope and progress, while at the same time demanding and needy. Rose, the only girl and the apple of Daddy’s eye. And Henry is the funny, sassy, naughty, round baby of the family
For a long time, I worried about you. I still worry about you. People think I mostly worry about Jack because I write about him and his autism so much, but there are times when I worry about you even more.
I worry about my middle boy, squished between autism and pink, and also competing with the first-born and the last.
You were the easiest baby. You really were. You smiled, and cooed, and slept, and ate. When I looked down at your sweet face, I thought you were born at the perfect time; you were the antidote to two hearts that autism smashed open wide; the answer to a prayer we didn’t even know we prayed. We could, once more, have a typical child.
In many ways, you were a gamble. You were our third pregnancy; the one where we closed our eyes and threw caution to the wind and took our chances to see if the wily autism gene would show it’s mysterious face once again.
You could sit in your swing for hours, content to watch the world around you, and on the day you turned four months old, you cut your two bottom teeth. I didn’t even know you were teething because you never cried.
Then all at once—seemingly overnight—you stopped being easy, and you became hard. Not throw-big-tantrums hard, or run-from-me-in-the-mall hard, but squeaky-wheel hard. Nothing made you happy. You lived in a perpetual bubble of discontent and disappointment.
You were hungry for more than I could give: love, attention, energy. The right waffles, a bigger ice cream cone. Ten kisses before bed one night, and eleven the next. I didn’t know how to quench your thirst or quell your metaphorical hunger. Some days, I still don’t.
Looking back, I see maybe the timing wasn’t so perfect after all—that as Jack and autism’s demands grew and your oldest brother grew and once again, my stomach grew, you were lost in the shuffle of speech therapy and maternity clothes and mortgage bills and preschool.
In my mind, I think of Jack’s autism as a jar full of jellybeans. In his hand, he tightly holds all of the brightly colored candies: bright red rigidity and sticky perseverative purple. Yellow for the buoyant bounce of self-stimulation.
But you reached into the glass jar and stole a bean for yourself. When all of our heads were turned and no one was looking, you took dark green anxiety.
For the past four years, you have been so, so afraid, of everything from thunder to wind, zombies, and going upstairs in the house alone.
Jack had already experienced his crushing bout with anxiety, so I knew exactly what it looked and felt and smelled like. Yet, for the longest time, I didn’t believe yours was real. It wasn’t attached to a diagnosis, so to me it was simply a personality trait—a choice you were actively making to complicate my life.
Every time I gripped your sweaty palms during a rainstorm or looked up in the middle of the night to see you standing at the side of my bed, I felt a rising irritation. I fought a rising frustration.
Eventually, irritation and frustration gave way to panic. I cannot do this, I thought to myself.
I cannot take anxiety any longer please let him be normal I just need normal normal normal.
Ah, my middle child. What I needed you could not give and what you needed I could not provide. For this, I am sorry.
There is so much debate about how much the spectrum disorder affects a family. Some researchers insist it’s destructive and damaging because there isn’t enough love and attention to go around.
Others conclude that children within an autism family will grow to be more empathetic and giving and kind and caring.
Still more studies show it causes resentment and stress, that a family cannot possibly manage the relentless perseverations and stimming and tantrums without self-destructing.
I know it seems as though Jack gets his way and all of our attention. His music fills the house and his screams fill our ears and autism’s overwhelming needs fill our time.
Please trust me, that because of him, I can be a better mother for you.
I can feel your body curl against mine in the still of the night and hold your hand as you walk up the stairs and into your quiet bedroom.
I can see your anxiety.
I can understand all of the mistakes I’ve made.
See, for so long I wanted—maybe needed—for you to be in the easy one, but I think I just made it harder for us both. I know now that there is no such thing as an easy child or a hard child. There is really no such thing as normal.
Instead, there is the sweet continuum of time, broken up into moments. There are hard moments and easy moments, scary moments and funny moments and difficult moments.
Moments I’d do anything to take back, like the time I made you go upstairs to find your sneakers by yourself even though you were frantic and hysterical and afraid.
Moments I want to enjoy all over again, like the time you beat Daddy at chess and your face broke open with the widest smile.
And some moments, I cannot lie, there isn’t enough attention to go around.
Mostly, I want to take this one moment to tell you that I see you. Every day, I see you.
I don’t see a middle child. I see a dark-haired replica of your father, and our only child with his deep brown eyes.
I see your cute dimples, and your quick smile.
I see how much you love football and baseball and hockey and soccer. You like macaroni but you can’t stand spaghetti. You are quietly funny and yet quietly afraid.
I see you and I know you and ultimately, I want to be better for you.
And that, dear Charlie, is how I think autism affects a family.
June 22, 2015 @ 11:44 am
I can so relate to this – it made me cry a little, but that seems to be my norm lately. We have a Charlie too, but he is the youngest. He’s going to his first sibling workshop tonight, hoping for a little help in understanding this difficult concept that is autism.
June 22, 2015 @ 1:57 pm
Aww bless his heart. Such a gorgeous face. He looks like a thinker. I like the way you write. Very glad to have found you.
June 22, 2015 @ 2:01 pm
I so love your writing. It’s lyrical and soothing and wise. Thank you.
June 22, 2015 @ 2:23 pm
Beautiful. Thank you for your posts…
June 22, 2015 @ 2:26 pm
Beautiful. Thank you for your posts. (even though I always seem to tear up as I read them…)
June 22, 2015 @ 5:04 pm
Very interesting blog, I grew up with three younger brothers the oldest having autism. I think we are very stereotypical birth order siblings. It is nice to hear how other large families are making it through.
June 22, 2015 @ 10:25 pm
This was beautiful. He is so handsome.
Cate Pane: The Clear Parent
June 23, 2015 @ 12:37 am
Love this post! I grew up as a middle child in a family of 6 with a schizophrenic sibling. I can honestly say that I in the long run, I benefited from my birth order. It is obvious that you love your son very much, anxiety and all. Sending good thoughts your way!
June 23, 2015 @ 12:47 am
I look forward to Mondays…..because when I read your writings…I don’t feel alone.
June 23, 2015 @ 3:10 am
Reblogged this on oshriradhekrishnabole.
June 23, 2015 @ 9:10 am
Your writing is so poetic and beautiful. I have no autistic children of any sort but your writing is so universal, I can still relate to every post. I can only applaud the honesty and rawness of this confession. We are so easy to be hard on ourselves as mothers, but I’m positive that he will grow up to know how much he was loved by his parents, and will find his special place as Middle and appreciate all that you did for him!
June 23, 2015 @ 6:21 pm
This perfectly describes our middle son. Thanks for helping us not feel alone in this journey.
June 23, 2015 @ 6:23 pm
I so so so so get this! My four year old is autistic and nonverbal. My 2 year old is NT and precocious and hungry for life and attention. I worry more about him. Will he have to take care of his brother for the rest of his life? Will he resent Cooper. Will he feel the love of a brother? The questions weigh on me constantly. It’s all so hard.
June 24, 2015 @ 12:02 am
My husband too has thought Luke the 12yo created his anxiety to make life difficult. It wasn’t until I married him that he began to realize Luke’s anxiety is not Luke’s personal failing.
You’re a good mom. Good moms see what is happen and do their best to correct when needed. That’s the best any of us can hope to do.
July 8, 2015 @ 11:33 pm
I like reading your story. Our boys are 8 yrs apart the youngest with autism. He is 22 now. Most of the time we have things under control, but other times I see the ugly part of autism and I’m tired.
Thank you for being a good mom. It’s the best job in the whole world.