The Ultimate Question: Would I Change Him?
My kids go back to school in a couple of weeks, and in preparation for my son Jack’s move to 6th grade, I took out the folder.
You know, the folder. The one that holds every single piece of paper and prescription and description, dating back to the day he was officially diagnosed in November of 2006.
Referrals for early intervention.
Recommendations for occupational therapy and speech therapy and physical therapy.
Random articles about cures and services and how to hold your family together in the midst of a diagnosis.
And finally, the judgment. The verdict, the finding, the truth; pervasive developmental disorder, not otherwise specified, which eventually became just plain old autism.
Our folder is blue. It’s a mess. I probably should have organized it with tabs and dividers, but to be honest, I couldn’t bring myself to arrange all the paperwork into neat sections–to take the papers out one by one and re-read them and sort them and catalogue them. Somehow, this would have made autism too permanent, too everlasting.
For years and years, I held on to a single thought: He might outgrow it. I thought that with enough speech and therapy and prayers and love, by the time he was five or eight or even ten years old, his symptoms might magically disappear like a bunny inside a deep, plush hat.
He didn’t outgrow it. He isn’t going to outgrow it.
Stuffed way in the back of the folder, in the bottom of one of the pockets, is a greeting card that I bought about ten years ago in some Hallmark store. I can’t remember where or when exactly, but I do remember how I felt that day. I felt exhausted by my 14-month old son. I felt helpless and weary and annoyed.
I saw this card and the picture of the boy on it looked exactly—I mean exactly—like Jack at the time. Chubby, irritable, cute, fussy, and somehow endearing.
Once a year I like to take the folder out and look at the card and glance through the paperwork, and whenever I read the phrases and comments written by all of the specialists and therapists and doctors over the years, they seem almost innocuous in their banality. It’s very hard to picture the actual boy and the life and the autism in these words.
“Jack has significant sensory issues related to texture and food.”
This means his fingers graze ceaselessly over everything—the paper tray on the printer, cigarettes on the ground, ice cubes in his glass, the lip gloss in my purse—much like a person who sees the world around him solely through touch.
He also rolls all of his food around before he eats it. The cheese from the pizza, the meat from his taco, the hotdog from his bun. To say this is annoying is like saying it’s hot when you stand near the Equator.
“Child hears background noise and foreground noise simultaneously.”
When I talk with Jack, I am competing with every single sound in the atmosphere; garbage trucks driving down the street, a dog barking next door, his brother playing Minecraft on the computer three rooms away.
He cannot differentiate between the scratch-scratch-scratch of the pencils in the classroom and the teacher’s voice. Within the canal of his sensitive ear, they are all important, all a priority, and all very, very loud.
“Jack has delayed cognitive abilities when it comes to flexibility and executive functioning.”
Um…he’s incredibly, rigid. I’m not sure what else I can even say about this, except to give an example.
Jack makes waffles every Thursday morning. For well over a year now, I have woken to the steady whisper of waffles today today is waffles let’s make waffles by 6:03 on Thursday mornings.
Last February, NBC Nightly News did a segment on our family and autism. It was crazy exciting.
They sent a camera crew to our house to film us eating breakfast. The night before, we suggested to Jack that he make waffles, to showcase his cooking skills and his patterns.
He freaked out.
“It is not! For THURSDAY! Tomorrow is Wednesday. No waffles.”
NBC Nightly News, people. NBC.
“Autism is hard on a marriage.”
This particular line is from a magazine article someone sent me, and I remember reading it and wondering exactly what the standard for “hard” is.
Is it living together with the unknown; not knowing if he’ll ever be independent or drive a car or move out? Is that the hard part?
Or is it the relentless day-to-day negotiation and compromise and arguments over IEP plans, bedtime, and whether or not he should have to play a sport.
“Child suffers from debilitating anxiety.”
Ever try moving a 3-ton elephant through something small, like a keyhole? Me neither. But I have had to move my son Jack through his day, and I’m pretty sure his emotional baggage weighs about the same.
I’ve had to inch him past Chihuahua’s on leashes and convince him that blue water in the toilet bowl isn’t dangerous. I have answered the same question about the wind chill factor seven thousand four million times.
I’ve had to stand by and watch as anxiety twists and distorts his reality, interrupts his sleep, and creates a silent, private chaos within the confines of his mind.
“Child engages in repetitive behavior.”
Refer to number of times he asked about the wind chill factor above.
Words on a form or medical report simply don’t do the spectrum disorder justice. They fail to capture the struggle, the rage the tears, and the work of it all.
They also fail to capture the love, and the authenticity, and the joy of it all.
I guess the ultimate question is: Would I change him?
I mean, I know there is no cure, but if I could magically snap my fingers and remove his autism altogether, would I?
If someone offered an elixir, or a pill, or a treatment to take the autism out of the boy, would I give it to my son?
Yes.
No.
Maybe.
Some days.
My life would be easier if he didn’t have it. That’s kind of ugly and a little painful to admit, but very, very true.
I could actually sit down at family gatherings and holiday parties and barbecues. I could relax around buffets, instead of worrying he’s going touch all the bread and roll all the olives around in his hands while guests look on, horrified.
Joe and I would definitely argue less.
I wouldn’t spend so much of my day listening and interpreting and decoding his speech, his needs, his goals.
His life would be easier if he didn’t have autism.
I could change his tender, obvious loneliness that is as palpable as a beating heart.
He would have friends, gaggles and gaggles of pre-adolescent boys who call him and play with him and like him.
He would go to pool parties and bowling parties and sleepovers.
He would be free of the crushing panic that shrinks his world to the size a keyhole.
Yet Jack would simply not be Jack without autism. It’s nearly unimaginable.
I guess the ultimate answer is: It doesn’t matter if I would or if I could, because I can’t. I can’t re-wire Jack’s brain or go back in time and alter his genetic constitution.
I can’t rewind the tape and erase the doctor’s handwritten note—a postscript, a footnote at the end of a long list of symptoms and behaviors and delays.
Pervasive developmental disorder. Autism.
I can love him.
I can help him.
I can keep in mind all he has done and will do, and remind myself that the boy who learned to talk will one day learn to keep the noodle on his fork and maybe make waffles on Monday instead.
In the meantime, it’s time for me to buy some tabs and dividers and put my folder in order, because before I can love and help and remember, I have to finally accept.
August 17, 2015 @ 12:58 pm
I don’t just like this. I love this. It’s honest. Real. Important. I have a messy folder too. I have started putting it together several times but I start reading & you know where that goes… My daughter is 4. I remain hopeful too. Hopeful for what? Change. Good change. Moving forward. Positive thoughts and people like you that remind me that we are not alone in our daily struggles of life & the beauty of it all also. It’s not all bad. It’s not all good. But it’s how we look at it. Is it the forest or the trees? I think it’s both. You can’t see the forest if you don’t feel the trees. I get it. Rock on. Xx
August 17, 2015 @ 1:58 pm
This is lovely 🙂 thanks for sharing!
August 17, 2015 @ 2:32 pm
I always love your blog (I’m a mum of 4, 2 diagnosed so far…) but today your comment re ‘annoying like the equator is hot…’ Just had me in stitches… Keep up the fab work x
August 17, 2015 @ 5:09 pm
I can relate to your answer of not changing your son”s autism. My Andrew is sweet, charming, smart, musical, and many more positive descriptions at the age of 22. I worried about his future and still do. Today he struggles with organization, executive functioning, staying focused, and waking up on time. He learned to drive, is a year away from graduating college and has many close friends. Many of whom also are on the spectrum, but who cares? Andrew is one of a kind and I will keep him the way he is forever and continue to support him through his struggles in life.
The hard part is knowing when to let go. Knowing when to let him fail. Knowing when to make him get a full time job so he can pay his bills. These are my struggles with my autistic son. I will continue to love him unconditionally and strive to keep my husband and I on the same page on raising him. It’s not easy, but I’m grateful every day for my life and wouldn’t want to trade places with any one else.
Thanks again for the blog post. Keep on keepin’ on..
August 17, 2015 @ 9:06 pm
Every Monday I get your latest posting. And every Monday I don’t immediately open it. I know it is there. Sometimes I place the cursor on the message — but don’t ‘click’ on it — because that would open it. I don’t know if I don’t open it right away because I want to save it — like some guilty pleasure or treasure to be kept locked away for a rainy day– or maybe later in the afternoon when I have gotten my work ( or a lot of it/some of it) done. Or maybe because this message might be one of those barn burner /tear jerkers and I don’t want my co-workers to see me sniffle (or hear me). Sometimes it will take me to the middle or even the end of the week to read the posting. But not today. This was a real mixture of competing emotions. You wanted me to address the issue in my head about whether or not I would change a hair on my son Jack’s (his name is Jack too and he is 14 as well). I couldn’t read it, I cant read it…………I must read it.
I remember back in 2009 when I was blessed and cursed by a report. My son had been removed from Special Ed in our District (long story, I am the City attorney and there was some nasty stuff going on [I wanted to be part of a parents group to clean up our special ed department, they exited my son and then declared me to be ineligible to participate since he no longer had and IEP]). So, we sent him to the Yale Child Study Center for a complete neuropsych eval. Soup to nuts. Well, he was certainly a child with raging ADHD (combined) as we knew for years. But we were also told that he also was a child with PDD-NOS (which our years of sensory dieting should have warned us about). He also had “significant” deficits in his memory and executive functioning.
Well, we called for another meeting (called PPT in Connecticut) and I was ready to get him put back in the program. I remember asking the folks at Yale for a nice concise statement that I could wave under their noses. They were going to fax it to me before our meeting. They did. I went out to our office fax machine and pulled the report right out of the hopper and read it. There is was. The diagnosis — my son clearly was on the autism spectrum. I remember thinking — “yes, my son has autism !!!” (now they cannot deny him!!!). Then it hit me……………’Yes, my son has autism’. He is autistic. He will always be this way. This will be his life.
I went into my office, report in hand, sat down and cried. I did not care if anyone heard.
August 17, 2015 @ 10:50 pm
{hugs}
August 18, 2015 @ 1:10 am
I can relate Jeffry. Somehow these responses help me process what is going on with my son. I am not ashamed anymore to talk about it. We have to support one another through these times with our kids. It takes a village…
August 17, 2015 @ 10:38 pm
Another awesome post! I think any parent (or anyone who loves someone on the spectrum) has posed this question before. I can’t wait to open your blog each week and usually read it over and over.
Thanks for sharing Jack with us each week.
August 17, 2015 @ 10:44 pm
Two things I realized today after reading your blog! You must live in my daughters house and her Nicholas isn’t as unique as I thought he was!!! McDonald’s Monday “A cheesburger, no ketchup, no onions. French fries. Sprite.” Started as a bribe to go to school on Mondays, and of course now it is what Mondays are all about! Loved the elephant analogy.
August 17, 2015 @ 10:46 pm
I, too, have a folder. Actually, many folders. My Will takes up almost an entire drawer in the file cabinet all by himself. Last month, I organized the most recent parts of our story as I hunted for documentation I needed for filling out yet another form for maintaining his eligibility to be our dependent. He’s 23, high functioning – used to be Asperger’s, now it’s just spectrum – and seriously lacking in executive function and abstract thinking skills. Much of his file is from before he was diagnosed. We started having problems with his aggression when he was 5, and he didn’t receive the correct diagnosis until he was almost 9. Those were rough years filled with hard decisions. I’ve pulled out the most important pages – testing and medication lists – and they have a special folder that I try to keep current in case I have to fill out more paperwork (and inevitably, I will). The rest of it is just in the cabinet. I was looking for something last month that wasn’t in the important folder and read a few of the discipline reports that came home in grade school. I’m still learning things in retrospect about his symptoms that I didn’t recognize at the time. I can only spend a few minutes here and there in that part of our life. It makes me sad to think how poorly we managed him, even after he had a diagnosis. I have to leave the sadness in the file cabinet so that I can get through present-day life. We have a learned a lot since grade school, and we manage life much more kindly today than we did back then. I am a much better advocate now than I was early on. All of that paperwork represents forward progress. We live and learn, make our own adjustments and help them make theirs. Day by day. You’ve got this. In the words of a dear friend of mine, “You are ENOUGH.”
P.S. I imagine it will be lots easier to organize 12 years of paperwork now and go forward than it will be to organize 20 years of paperwork if you wait. Happy sorting.
August 17, 2015 @ 11:04 pm
So funny how I was thinking about this very thing. If my son suddenly didn’t have autism I think I’d be scared. Who would he be?! Mind blowing??!!!!
August 18, 2015 @ 1:10 am
Reblogged this on oshriradhekrishnabole.
August 18, 2015 @ 8:24 am
I remember when my daughter was young. I spent a lot of time looking for answers, trying to figure out what caused her disability and trying to figure out how disabled she would be when she grew up. I finally stopped and realized that it didn’t matter. There was no cure. She was just disabled. It takes a long time to accept and even now sometimes I wish it wasn’t so. The hardest part for me is watching her anxiety. We recently started her on an anti depressant which has helped with the anxiety. I wouldn’t recommend it for a child though. My girl is 23 now.
It’s just hard.
August 18, 2015 @ 10:58 am
Like everyone with a child on the spectrum, I’ve asked myself, “Would I make my son’s autism go away if I could?” I feel frustrated with those who say unequivocally no. I love my almost 7 year old son; he’s sweet and loving and funny and so many other positive things. However, he’s nonverbal, nowhere near his peers in any way. The only area he scores near his peers is physically; he can run and jump and leap and hop with the best of them. He’s so busy and active, but I can’t often get him to channel it in positive ways. I struggle with what will happen to him when my husband and I are gone. Is it too much of a burden for his older siblings? Will he live in a group home where no one will love him, even though his needs are met? What if he outlives his much older siblings? Will he ever carry on a conversation with anyone, let alone drive or hold a job? Will he ever even be toilet trained? I want so much more for him than seems possible. So, my answer is different than most: I vacillate between yes and maybe yes.
August 18, 2015 @ 9:50 pm
I wait every Monday to read your posts and feed back from so many other Moms. I am a grandmother with a 16yr old grandson on the spectrum. Every day is different, yet the same. At my age I pray for all the cherubs and their future. Thank-you for letting me share in your lives. Yes, we do not know what the future will bring, but we can hope.
August 23, 2015 @ 12:51 am
Hello Carrie this is my first post in your blog, after reading it, i guess what i needed is read somebody else’s experience with having a child with autism, my boy has Aspergers and adhd. I know having a child with unique qualities takes so much patience, I call it qualities, because in the areas that he is not an expert like social situations, in other ones he super excels, like being caring and loving for people closest to him , in academics, creatively he struggles, but in everything else like science where struggles in school, seems so easy for him. We do have hard times, where anybody would think he is testing our patience, but i understand he processes communication in a different way. A lot of times we have to explain to him the consequences of when you do something, any other person would say “hey he is a kid . you don’t need to give any explanations, you are the adult”. I just dont want to take the road from my childhood’s time, when this kind of condition was thought of being misbehaved. I want to give him my full support. He is about to go to middle school, and honestly that scares me to dead, because of people around him making fun of him, and him not knowing about it, it scares me not being able to protect him at all times. If you have a good advice, I certainly can use one.