The Cracked Heart of Autism

Bean and his mama, who loves him so much it hurts. Taken at bedtime on 3/22/2011

Bean came into the world screaming bloody murder. His little shoulders weren’t even pushed from my body, but his face was torqued with pain and what I can only imagine intense confusion over the sensory chaos of being born. Of course, I’m projecting with hindsight, but given what I’ve learned about my now seven-year old son, I think it might be close to accurate. At the time, I remember holding him as I had my firstborn, and wanting nothing more than to comfort and love him. We’re still working on it.

Within days, I knew this was not just a baby needing comfort. All the things I had done with my first son were futile with my second. At three-weeks, I took him in for the first time to ask the doctor what might be wrong. The usual platitudes about breastmilk, colic, gas and letting him “cry it out” were dispensed, and I was sent home with a baby that never stopped crying. When I say “never stopped crying” I’m not doling out hyperbole- if he was awake, he was purple-faced, back-arched, lungs-burning, screaming. He barely ate, had trouble latching and sucking was difficult. He would finally pass out from sheer exhaustion, and quiet would descend for an interlude. As soon as he woke, it started anew. Rocking, bouncing, warm baths, patting his back, driving in the car, the swing, a sling, everything that comforted other babies only seemed to make him panic and scream harder. It was hell- on all of us.

He didn’t stop screaming until after his first birthday.

There are swaths of time in that first year that are lost to me. Having a child that never, ever stops screaming is a level of hell unknown even to Dante. I know my older son moved from two to three. I know my parents came to visit, and my brothers too- but all of my recollections are clouded by intense sleep-deprivation and constant worry about why my child was so miserable. People at church would take him from me, assuming they, with their magic baby hands, could calm him- and inevitably would return confused and frustrated, handing him back to me, still wailing.

He was ten-months old when I first asked the pediatrician about autism. He brushed me off, saying autism seldom presented before 18 months. Looking back, I’d like to meet him in a dark alley and give him a little education to go with his fancy MD. Bean was smaller than my other son, but still growing and other than the screaming, seemed fine. The doctors did not listen to me then- I tried to tell them how he cried in the bath, how he wouldn’t get food on his hands, hated his feet bare, panicked when I changed his diaper… and no one listened.

Around his first birthday, I also got my first computer. And I learned how to to use it. I started reading- reading everything I could find. And I recognized my child in the stories of others. I recognized and learned about other kids who hated food, water, being touched, riding in the car, bubbles in the bath. I got mad. Then I became my son’s advocate. Dumping that first pediatrician, I found another, then another- doctors who listened to me, who believed me when I explained his life. We got assessments, and specialists called and when his scores came back for processing sensory-input in the < 15% range, I cried with grief for his little body and what he’d been going through.

Years later now, with special pre-schools, occupational therapists, physical therapists, sensory therapy, swings, slings, pressure suits, weigh blankets, jaw pressure sticks, brushing, special kindergarten, more OT, more PT, a typical first-grade classroom with an IEP- we are… where? Still in the thick of it. Things are better- yes. But the thing about autism that cracks your heart in two is that there is no cure. It’s never going away. He will never be “better”- and who’s to say what that even means?

In our daily life, this means me, Bean, and my two typical kids are used to dealing with what is kindly called “quirky” behavior. He honks when stressed. He hides and runs away when sound, colors, smells or touch overwhelm him- which is more often than any of us wish- especially him. My oldest son carries the weight of explaining his brother to peers and classmates. He eats the exact same food for breakfast, lunch and dinner every single day. If we are going somewhere, I have learned to pack what he needs, or it’s bad. Bad for all of us. So many times we have had to leave parties, events, socials, plays, parks, restaurants… because he cannot process what is happening. And the general public has little tolerance for a child who appears “normal” but cannot control his limbs, voice or behavior. We’ve felt the sting and heard the comments, believe me.

Tonight, in a fit of frustration, he threw a chair across the room at me, upended a bin of Legos and tried to bite me when I restrained him. There is little that can be done except wait it out,  and eventually he comes back to center.  The part that is wrenching is his remorse and sadness when its over. He climbs in my lap and begins to weep, and I gingerly place my arms around him before he shrugs them off. He wants to sit in my lap, lean his head on me, but I have to let him touch me- his brain does not process my touching him well. This is another hard part of autism. Rack ‘em up. The list grows and grows.

“Mom, I don’t know why I do those things. I feel so bad and I just can’t stop myself and it’s like I just can’t and I want to!”  He is sobbing now, and my own tears drop onto his coppery head in my lap. I want to brush his red hair back from his forehead in timeless motherly love, but I stay my hand so he will continue to relax and talk. If I touch him, he will pull away. It’s a constant balancing act, finding ways to show this boy love which he can understand and which are not about what I want.

He came in to hug me three times tonight before he finally fell asleep. The last time, he asked if I could take a picture of “Just the two of us, mom. Mom? I love you.” Yes, my son… and I really, really, love you, too- whatever, however, whenever you need it- I am your mama, and I will love you.

25 thoughts on “The Cracked Heart of Autism

  1. My heart is sobbing as I read my life which is also yours. This is the first time that I have ever met someone or read something which speaks to the soul of the first years of parenting my boy with SPD. I felt like such a horrible mother when the only time my “Bean” would not be screaming as an infant was when he was in his crib alone. Only someone who has lived through that can know the visceral reaction to his screaming and willingness to do anything to comfort him, make the screaming stop and yet every instinctual gesture must be quelled because they are the very thing that contributes to my sweet boys sensory overload. And often it kills me as a mother to not be able to meet his needs. I understand your cracked heart for I have one of my own.

    Your writing is beautiful and leaves me tonight feeling like I am not alone in this journey. Thank you!

  2. I’m with Vern on this one. You’re a fantastic mom… and that’s coming from a girl who has been there from the very beginning of your sweet boy’s life. Remember the babysitting incident? He’s a handful, for sure. But I absolutely adore Bean, and it’s been inspiring to see you embrace his quirks and face autism head-on. Not just anyone could handle him as well as you have… especially in the midst of every other challenge that has been thrown at you in the past few years. Bottom line… you are amazing, Bean is lucky to have you as a mother, and I am lucky to have you as a role model and friend.

  3. Wow! You are amazing, and the sheer amount of what you live on a daily basis is amazing. Your ability to deal, and then your ability to write honest, raw feelings and thoughts. How lucky your kids are to have you as their mom! How lucky we are to learn from you. And how lucky I am to consider you friend.

  4. I’ve never met Bean but I love him and I love you. You teach me so much about how to be a mother and your kids are so so lucky to have such a creative and passionate force in their lives.

  5. All I know about Autism I learned from you, Temple Grandin, and John I can’t remember his last name – the “look me in the eye” guy. (and both those people I learned about through you)

    It seems to be all over the map, the lmite autohor LOVES to be “pet.” I just remember his “pet your mate” stuff, but Bean and Temple Grandin don’t like it all. It must be so hard figuring out your kid’s specific map of his brain.

    FYI – My son’s best friend in the world is an autistic girl, and he’s pretty sure he’s going to marry her.

  6. “It’s a constant balancing act, finding ways to show this boy love which he can understand and which are not about what I want.”

    This is a vitally important thing to learn as parents, regardless of your child’s needs – but exponentially more important with those on the spectrum.

    Thanks, Tracy, for sharing your hard-earned insight. You bring tears to my eyes and an ache in my heart but also engender a love and warmth for you – all because of the grace and devotion with which you are willing to set aside your need to hug Bean and meet him on his terms. What a lucky boy and a lucky mama!

  7. My heart breaks for your son…yet is rejoicing that you are his mama…life has handed you a tough road, but you are more than strong to do this…I don’t know you, yet I admire you greatly.

  8. I agree, you are the right mother for Bean, and he is meant to be yours. I love every picture of him, from his fancy pants years to this toothless cuddle with mom. Told through your eyes, with your words, Bean is real, but also delightful and precious to your readers. I love reading who he is — and who he has helped you to become.

  9. In an effort to help you feel less alone, have you ever heard of RAD – Reactive Attachment Disorder? Not that I think Bean has it at all, but mothers of RADlings deal with some of the awkward social situations you describe. I recently found a great RAD mom, Christine, who jumps into it head first, brave and strong (you’re a lot alike, I think). If you ever want to feel like someone out there understands check out her blog – http://www.welcometomybrain.net/2011/03/letter-to-grandparents-of-children-with.html

    In talks with my sister, whose son has Aspergers, and my friend with ADHD I see how building our lives is about learning to face and accommodate our individual weaknesses, abilities, sensitivities, etc. By being such a great advocate for Bean, and learning so much about Autism, you are giving him a head start on building a life in which he can be happy and successful. You are doing so much more for him than getting through each day. What an amazing thing you are doing -being a pillar of strength and soft spot to rest all at the same time.

  10. A friend referred me to your post, and it is beautiful. My 3-year-old son was recently diagnosed with autism, so I appreciate hearing other perspectives. Thank you for loving your son so unconditionally.

  11. May I ask a favor of all the parents? In my studies, I am constantly asked by parents who have kids on the spectrum what can parents read/study to help their kids? All articles I have are meant for therapist and definitely not in everyday parentese. I would love to compile a list of what books/articles have helped you the most. What is in your personal library?

  12. Scarehaircare-

    Ah, you’ve asked a very important question, and one I plan on addressing… First, the two books that made a difference to me were John Elder Robison’s “Look Me In the Eye”, and the second, “The Out of Synch Child” (can’t remember the author, but its a gold standard).

    That said, once I’m done with my Masters next year (God willing and the creek don’t rise) I plan on writing just such a book- a compendium of useful, approachable, information . That’s the plan.

  13. Someone once told me that autism isn’t “not normal”…. it’s just a “different normal.” I have worked with a few children on the spectrum, and I agree wholeheartedly. Your son is lucky to have a mother who already sees things differently: artists and the autistic touch the edges of each others’ boundaries.

  14. It’s amazing where Autism takes a family…we’ve been on the spectrum roller coaster for 29 years with my son and when my grandson was born, we started a new ride with him. Max, who is now 5 and the light of my life, has the benefit of being born in an age where there are therapies and help available to him. Those therapies and treatments are wonderful, some even life-changing, but it’s still a day to day struggle that slowly provides the parents/grandparents (me) a bit of hard-won-tear-stained-experience. And the little bit of experience I have tells me one thing about your Bean…he may have autism, but he also has an “equalizer” and that’s you. God bless you Tracy, and your darling children. xo, Nan

  15. I thank God every day that Bean was born now, when there is so much more known about ASD. Once upon a time, they considered children like him to have psychosis. Nowdays, with early intervention and therapy, these kids can become nearly anything they want, are assets to families and society, and are now being seen as having a gift. It’s just hard work getting there.

    Thank you, Nan. i really appreciate your kindness- and I always have. :)

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