So Much in The Silence
I was recently reminded that there was a time that my child could not speak. He could not answer a question, he could not share something that excited him, he could not tell me where it hurt.
That hurt. A lot.
To know your child is in distress and to not know why, or how to fix it, is the pinnacle of parental frustration and anxiety.
I recall looking at him, two years old, standing in his crib to greet me in the morning, wondering when he’d say “hi, mama!” Thinking that one day maybe he’d just start speaking in full sentences, having had no need for baby talk. Not ever, not once, realizing something bigger than a speech delay might be at play in our home.
Any day now.
There is a photo I have of Jack that absolutely breaks my heart every time I see it now. Now that I “know”. He was eighteen months old, and not feeling well. I was taking photos of his pout, because I do things like that. I have photos of all of my children in various states of anger, sadness, happiness and joy, because I don’t ever want to forget even a second of their lives.
I also want a nice, big arsenal for the teenage years.
The photo is gorgeous. He was a beautiful child (still is), with rosy cheeks and big, curly blonde hair.
What I didn’t know, is that not only did he not feel well, he actually had strep. At one o’clock that same evening/morning, David had to rush him to the hospital because his 104-degree fever would not come down, no matter what we tried.
What I didn’t know, is that his throat hurt. He was in pain, and had been, apparently, for days. He had been sleeping a lot, but not complaining in any way.
He couldn’t, actually. He didn’t know how.
That event marked a turning point in our lives, where we went from “Jack is just independent and will speak when he’s ready” to “maybe we should be looking into this a little bit more”.
We spoke with his pediatrician about it at our follow-up visit, and were shushed and placated, and pushed out the door with the advice to not to fret about it. Lots of kids don’t have language until later. Start worrying when he’s two and a half. Almost a year away.
A family member had been through Early Intervention with their child, and suggested we give them a call. What could it hurt? It’s free, and maybe they could help. We went back and forth about whether or not to do it, and finally decided to make the call. Jack was twenty months.
He was assessed by the full team of not only a speech therapist, but a social worker and occupational therapist within two months, and we were assigned benefits for him within four. We were overwhelmed with what they had offered: five days a week in a collaborative preschool, home-based speech therapy two hours a week, clinic-based occupational therapy two hours a week, and various other interventions we decided not to pursue.
As I’ve mentioned before, speech therapy “unlocked” him. Jack was speaking within a month of his therapy, and within a year, he was well on his way to being the chatterbox he is today.
But why the other offerings? Why so much for a little boy who simply had trouble speaking?
As the months went by and the reports started coming in, it all started to make sense.
Actually, that’s not true. They confused us. Why would a speech delay cause upper body weakness? Why were both his fine and gross motor functions being called into question? Why did there suddenly seem to be so much more to be concerned about, just as he was finding his voice?
Well, we know now. That story has been told.
Sometimes, though, I need to be reminded of those days. Sometimes when I’m dying for quiet and my house is just so loud. Sometimes when Jack is asking endless questions about nebulae and how stars are born and just how big is Jupiter in relation to Betelgeuse anyway, when all I want is to shut off his light so I can go watch TV.
Sometimes, I need to remember that when Jack speaks too much, it’s not a lot different than when he didn’t speak at all.
He is now able to tell me when his throat hurts, or he’s bleeding or he needs some alone time. He can tell me when he’s happy and had a wonderful day and can’t wait for our weekend plans. He can tell me he loves me, which I longed to hear for so, so long.
He cannot, though, tell me that he’s stressed. He cannot tell me when he’s had enough. He cannot tell me when the lights and sounds and noises and cacophony of the world have pushed him to his very limits. For those times, it’s still up to me to read his body language. To try and snap him out of the vacant looks and nonstop pacing. To bring him back.
To heal the little boy with blonde curls and rosy cheeks.
Jack never stops teaching me, even though I sometimes get caught up in the noise myself. He speaks now, but it’s so important to remember when he could not. He is still the same child, and he still needs me to guide him.
And, for now, to explain the finer points of the universe.
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A Follow-Up…
I’ve had a lot of responses to yesterday’s post about Jack’s “new” diagnosis, and I’ve been thinking about what it is that’s bothering me the most. A comment this morning hit it on the head:
“It sounds like your son has adapted to may things and so those who tested him determined his diagnosed could be ‘updated’. I think the autistic traits remain, the kiddos just learn to blend in to what is expected of them socially, etc.”
I read this and it struck me. I’m afraid, because, in my mind, Jack hasn’t evolved out of autism. I believe he’s every bit as autistic as the day he was diagnosed, he’s just older.
Jack is a brilliant product of Early Intervention, which means we threw all kinds of therapies at him as quickly as possible. And you know what? They worked. But he still has autism, and that means several things.
It means that while he keeps up with his peers in school in terms of schoolwork, he simply cannot function in a school setting without constant supervision (he has a full-time SEA). His teacher is out for the rest of the school year due to surgery, and I fully expect Jack to backslide until he gets used to the change.
Jack is easily overwhelmed by stimuli, and we have to plan our lives around that. We rarely do things after school, as he needs that time to decompress from his day. There are many places we cannot go, because of various things that bother/irritate/terrify him (like the buzzers at the hockey rink adjacent to the indoor playground).
He is hyper verbal, to the point that he thinks every conversation is directed at him, and if he has something to say, he will do anything, including screaming at the top of his lungs, until he gets the floor. We’ve recently realized that giving him simple math problems will buy us enough time to finish our quick discussion about what to get at the store.
Jack has to be constantly engaged at home or he gets restless. This can mean anything from doing laps of the house to throwing his brothers down the stairs for sport. His aggression has increased with his age, and in a house full of boys, that’s a scary prospect.
Jack does not understand social boundaries. He will hug and touch complete strangers, and not grasp why it’s wrong. This particular behavior really scares me.
I honestly don’t believe Jack is “out of autism”. I think he’s smarter than the ADOS. I think he had a “good” day for his assessment. I can tell you if they had assessed him based on his behavior on the way home, there would have been no question.
I identify with autism because I am an autism mom. Yes, my child is high functioning, but he still has autism. Every day brings a new challenge, and every day is exhausting. Jack and I both need the services he’s getting, and then some. I’ve been waiting patiently for a year and a half to re-start his home-based ABA therapy, and the prospect of never getting it wrenches my stomach.
I realize now I’m clinging to the autism label as a lifeline, because that’s what it is. I know my child responds to therapies, that part is obvious. The prospect of facing a future without support, though, terrifies me.
I feel exactly the same way I did when Jack was initially diagnosed, except now there’s an additional layer of panic. I cannot let autism be taken away from us. I just can’t.
A delicate balance.
Autism by Any Other Name…
What’s in a label? I mean, really? I know the whole “a rose by any other name…” spiel, but I also know that sometimes labels are there for a reason. Sometimes the label helps you to understand what’s inside the package a little better.
It’s been four and a half years since we first had Jack assessed by Early Intervention in Los Angeles and we took the first steps on this journey of a lifetime together. It’s been three and a half years since he was formally diagnosed with autism spectrum disorder, autism or ASD for short.
At the time, I had mixed feelings about my child being “labeled”. I knew that with a formal diagnosis of autism the doors of opportunity would magically open for Jack, and he would be supported both at school and socially, at least through early adulthood. I also knew that for some people in his life, a label served to “explain” Jack a little bit, and made it easier to understand him.
On the flip side, labeling a child for life can be a harsh thing. Jack will forever carry a stamp on his forehead, or so I thought at the time, that will cause people to judge my child before he has a chance to show his true self. This reality shattered me and broke me to my very core. No parent wants their child to suffer, especially for something he can’t change.
I had no idea how we, he, would reconcile these two very different aspects of the one little word, autism.
What I, we, discovered, is a whole new world just waiting for us with open arms. People who helped us see the beauty in the chaos, the light in the sometimes profound darkness. Therapists, teachers, professionals, parent, people who have been walking the same path for a while, and those who have just begun. People who understood the strangeness that is our reality now, and don’t think it’s actually that strange. People who cheer things others take for granted. People who laugh with us at the absurdity of it all. We found community.
Launching this site definitely helped me. I started it with the intention of sharing my deliriously funny child with the world, and got so very much more in return. The inkling of an idea I had in the beginning was reinforced in spades: autism is a gift. For Jack, for me, for our family.
So, four and a half years on, we are at peace. Autism is still quite often a daily struggle, but it’s also an integral part of our family. There are so many experiences and people and perspectives we might never have been exposed to had autism never entered our lives. I have said it many times before, and I will say it again now: I will go to the ends of the earth to alleviate the things about autism that are painful, hard and stressful for Jack, but I will not wish for him to be “normal”. Jack is the person he is because of autism, and he is beautiful.
A leap into the future.
We are at peace. Well, we were. Not now.
We moved to Canada a year and a half ago, and we love it here. The children are happy, mama and daddy are happy, the family is happy. It was a good move.
When we got here, Jack was immediately taken in by his new school, and once they assessed his situation, he was given full support. He transferred to the school near our home this year (he had been on the wait list), and they welcomed him with open arms and a full-time SEA (special education assistant). He is in the grade one French Immersion program and doing really well. He’s had no support outside of school, though, because that requires funding from the British Columbia provincial government. In order to get that, Jack needed to be diagnosed again by a Canadian doctor. Not a problem, we thought, the only issue is a possible year-long wait list.
We had no idea the wait would be the least of our problems.
The clinic in our area that does the autism assessments contacted us a couple of weeks ago and I began a conversation with a wonderful caseworker. She requested copies of many of Jack’s reports, IEP’s, etc., so I started scanning and emailing forms. I think I sent well over a hundred pages out of my four-inch-thick “big book of Jack”, which includes every report, letter, IEP and piece of paper concerning autism that I’ve collected since we started all of this back in August of 2007.
In the interim, I was hearing horror stories from other local parents about how their children had been misdiagnosed with ADHD or not diagnosed at all for years. Parents who finally, in desperation, paid thousands of dollars out of pocket to hire private clinics to take a closer look at their child and give a more accurate diagnosis.
I was nervous, but held firm to the belief that we’d be fine. After all, Jack was formally diagnosed by not just one, but two doctors, completely independent of one another. He has had years of occupational therapy and speech therapy, spent three years in collaborative preschools with special education teachers, had a year of in-home ABA therapy, and has always had a full-time support person in school (Behavioral Interventionist in the US, SEA in Canada). He has been supported by the Lanterman Regional Center, Working With Autism (for both BI and ABA support), several independent occupational therapy centers, and the Los Angeles United School District (LAUSD). No less than 22 full-time professionals in the last four years have worked with and for Jack.
Every one of these people have and continue to support Jack (including several in Los Angeles, who I consider to be his “team”, and I consult before any big decisions, like putting him into French Immersion). My husband and I have worked hard. Jack has, and does work hard. It’s an ongoing job, and it’s paying off.
Evidently, too well.
The wonderful woman I was in contact with at the clinic here in BC thought of us when a cancellation came up last week, and we scrambled and made the appointment, mere hours after she called. It was a simple assessment, just another ADOS. Jack didn’t have school that day due to a teachers’ strike, and he was excited to go play games and work puzzles. He was engaged.
The doctor’s verdict shouldn’t have shocked me, but it did. She said he “barely met her parameters” for autism, and she was more inclined toward PDD. My heart sank, tears welled in my eyes.
In California, as with many of the United States, PDD does not count as “real” autism. Close, but no cigar.
All I could think was that all the years of hard work led us to this. There is no cure for autism, but I guess if you’re close enough to “pass”, you can fall off the spectrum and get shut out of the community.
Both the doctor and caseworker were very quick to assure me that in Canada, PDD and ASD are treated the same. They both receive the same funding and the same designation from the government. There was still some discussion as to whether they would push for a speech evaluation and more thorough psych exam, but for the moment at least, I was assuaged.
I slept on it for a few days, and became less so. I realized that I was not, in fact ok with this new diagnosis. I am very far from ok with it. My child has autism, not PDD. I know this. Everyone who knows Jack knows this. How can all of the people who have worked so closely with him for so long be wrong? I thought of all the things I didn’t mention in my part of the interview, all the obstacles he’s overcome, all of the “bad” things we’ve dealt with. I wondered if perhaps I had gotten too cocky and Jack had had too “good” a day. A perfect storm of neurotypicality, if you will.
After a sleepless night hashing it over in my mind, I sent the caseworker an email asking, politely, that they pursue the additional assessments. I explained that I understand their position, but in my mind, autism just doesn’t disappear. I don’t know how much influence I had in the decision, but within a day I got the call that they would, in fact, be going ahead with the evaluations.
I felt some relief, yet a nagging voice in my brain just wouldn’t quit. “I’m not ok,” it said. “I need it to be autism.”
Why? Why am I so afraid of losing autism? Why am I afraid of losing what is essentially just a label? Jack will still be the same person he’s always been, whether his file says “autism” or “PDD” or “purple-winged boogie monster”. He will still be my hilarious, socially-challenged but eternally endearing, beautiful boy. Jack will not change without autism.
Or will he? In my mind, he, we, will lose identity. Community. Future. When Jack was first diagnosed, I took a deep breath and told myself “here we go, this is his/our life now”. I never dreamed that would change. Sure, I expected and hoped for him to adapt and learn and in some ways acclimate, but I never thought for a second the autism would go away. That just doesn’t happen.
And there it was. I need autism now. It’s a part of me. It’s who Jack is, it’s who I am as Jack’s mama, it’s who we are as a family. Autism joined our family the same day Jack did, and it’ll be with us just as long.
And I suppose if the official diagnosis stands at PDD, not much will change. Life as we know it will roll on, and Jack will continue to be hilarious and socially-challenged and endearing. And I will stubbornly cling to the name of this website.
In the end, it’s just another stop on our journey together. Autism really is a trip.
The family that autism built.
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**UPDATE**
I had a few more thoughts on this, so make sure you read the follow-up here.
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Today’s post is by Jeff Stimpson, a fellow autism blogger who appreciates the humor on our journey.
Off the Top
Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/
Change is Good!
Hi everyone! Just wanted to let you know that things will be changing a bit here over the next week or so. I moved the site to a fabulous new server, and, to celebrate, I’ll be changing things over to a new design as well. I’m hoping everything will be tweaked and ready to go soon, but it may take a few ups and downs before that happens. Thanks for your patience!
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