January 30, 2017
Finally, a chance to breathe.
I know. It snuck up on you, didn’t it? It came to call after you’d gone through the eight million Early Intervention appointments and put his program into place, or through the six thousand evaluations that led to services at a school you hope is more than just “appropriate” for your daughter. You know about the “A” in FAPE because while not doing therapy, laundry, or taking your child to yet one more evaluation you’ve scanned the internet horizon like an eager addict, hoping for that next great hit that might somehow help your kid.
The diagnosis was difficult but at the same time energizing- the differences in your son have a name, and now you can do something, which cut through that insipid dread that’s been following you around like a remorseful ex. She’s on the “autism diet”, you’re giving her supplements, you’ve explored safe alternative treatments and made a plan to try a few. Her therapists and teachers are in place, you’ve even found a sitter you like so you can get the hell out once in a while. You’ve dotted your “I”s and crossed your “T”s, and today you find yourself for the first time in a very long time with a couple of hours to yourself. And it hits you, how you’ve put wanting to know your child’s future on a shelf so you can function. You know that ironically all your efforts haven’t been the hardest part- that’s still to come.
Now, it’s time to wait.
You may or may not be like me, a planner extraordinaire, which served me well as a former educator and even better as an autism mom. I admit I struggle sometimes to remain in the present, am always thinking a few steps ahead. You’re realizing you can’t really look that far down the road because he’s changing every day, making progress, sometimes taking two steps back. It’s too early to know if your eighteen-month-old son or four-year-old daughter will ever drive, fall in love, live safely and independently apart from you.
But still, you want to know.
Some people will tell you what you want to hear. They will compare your beautiful two-year-old boy to their second cousin’s boyfriend’s neighbor’s son who was non-verbal and is now at MIT. They will tell you about their other clients who present just like your daughter who are now fully mainstreamed, talking, and have friends. They may not be so positive, as in the case of my eldest son’s former therapist who laughed when I suggested he’d one day read. At the time, he was two years old.
He was reading complete sentences by four. And yup, still severely autistic.
There is no crystal ball you can look into for these answers, although you’d bargain your life for one. There will probably not be a single, defining moment like that one at the doctor’s office with the annoying florescent light bulb that will change your life, where you will know what the future holds for your child. You won’t know for years if your child will ever speak because sometimes it just happens as a teenager, along with all those changes typical kids go through too. If your child is in a self-contained class in kindergarten you won’t know if he’ll keep that placement forever, or one day shed his IEP. You won’t know if he’ll ever eat a vegetable.
Fortunately, some things aren’t as difficult to wait for as others.
You won’t know the answers to the big questions now, but I promise you someday you will. It may come gradually over time as it did for me with my oldest, realizing after years of intense therapy that despite his inherent intelligence he’d always need care. It might come in a watershed moment like with my youngest son, where his beloved pre-school teacher suggested he’d benefit from a partial day mainstreaming in kindergarten without an aide, citing the astounding progress he’d made in two years at such a young age.
And for the record, my sons are two of the happiest kids I have ever met.
No, for now you have to wait, and it’s hard, so hard. Waiting will lurk in the corner with you like that person you should really unfriend on Facebook, relentless in its tenacity. If you let it it will consume you, rob you of the gift of the present, insinuate itself into every corner and crevice of your life until the waiting, the not knowing, is all-encompassing.
Don’t let it. Don’t let the waiting, the worry, the anxiety envelope you if you can help it. Revel in what he’s accomplished, hell revel in what you’ve accomplished for him. Relegate the future to a back shelf, somewhere cluttered enough that you can’t spot it easily, and take everything day by day. So much will change over these next few years- struggles will be conquered, new challenges will present themselves. A goal you never thought she’d attain will eventually be met. Others you thought were so important will go by the wayside, and it will be okay.
You have the power, with how you choose to perceive things, to view this life as okay.
Know you never have to wait to share in this vibrant, caring community.
You are not alone.
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February 29, 2016
Recently we celebrated the birthday of my youngest son, who has high-functioning autism. Families and friends from both sides of his genetic tree came to usher in his last year in single digits, while his almost teen-aged older brother with severe autism looked on. For the most part, things went well. There were however Justin’s attempts to pilfer his younger brother’s gifts (which ironically would have ended in him giving them back in disdain.) We had to negotiate with my eldest to get him out of our freezing garage and end his organizing stint (a long story for another day.) I almost forgot the mildly over-cooked chicken nuggets in the oven (my brother-in-law came to the rescue on that one.) All in all however, the event went well, with my littlest love thrilled with his gifts and sad all the hoopla and his four parties were over.
Yes, I said four parties.
I often get reflective after these birthday parties for my sons, am prone to remembering years when things haven’t gone so well. There was the year we tried to keep Justin on the computer when Zach was opening his presents (which bombed miserably, resulting in meltdowns for both.) At another party my husband and I ended up having to carry Justin up to his room for some action I’ve totally forgotten, whisking him past a dozen or more suddenly hushed adults.
Things have not always remained constant at our parties, but one thing has remained consistent with both our families and friends since Justin’s diagnosis twelve years ago, something for which I will always be eternally grateful.
There are many other things looking back which I am eternally grateful for, and if you’re reading this and are a family member or a friend of a parent whose child has just received an autism diagnosis, take a minute and peruse. My husband and I were very fortunate with the way the people in our lives reacted- not all of my friends with autistic kids have been so lucky.
1) Don’t judge. You may not understand why your friend/family member is handling her child’s meltdown/insomnia/refusal to eat/obsession with lining everything up in the way she is. Trust me, she knows better than anyone else what to do, and knows her child best. Only offer suggestions if she asks for them.
2) Offer to help, and mean it. She may be so overwhelmed she might not even know where to start asking for help. Give her time. She may need you to go on a doctor’s visit with her, or watch her child while she takes siblings to another appointment. She may just need to get out of her house for a few hours and take a break. Whatever she needs, try to be there for her, and be there multiple times.
3) Initially, don’t send her research. Trust me, she will be logging in a few million hours on the internet. Hold onto whatever you find until things have calmed down a bit and you feel she can be receptive to your help.
4) Never compare her child to your second cousin’s neighbor’s high school sweetheart’s autistic kid. Autism comes in many shapes and sizes. Just because somebody’s kid talked at seven does not mean your friend’s kid will. Comparisons are odious…
5) If your friend’s child has mild autism, don’t tell her he/she will grow out of it. Autism is a life-long neurological disorder- it’s for keeps. There are struggles and differences even for those on the high-functioning end of the spectrum. Respect that.
6) Make them a meal. Even if she’s “gone GF/CF,” take the time to bring them dinner if you live nearby. Random acts of kindness cheered up my family immensely in the months following our sons’ diagnoses. They were often the only bright spots in our day when dealing with meltdowns, sleeplessness, and mounds of paperwork for Early Intervention and school placements. Make the effort.
7) If you know of anyone with an autistic child who might be a positive support for your friend, hook her up. The key word here is “positive.” She needs someone to vent to, who may even have suggestions and referrals to services and people who can make her life easier.
8) If the family needs money and you can help, offer it. Insurance reform has helped immeasurably in covering autism therapies, but there may be a lag time before they kick in. Offer to fill in the gap if you can.
9) Just listen. Don’t share with your friend that your neurotypical child had sleeping/eating/behavioral issues too. Generally in the NT world those issues don’t last for eighty years. You have no idea how long your friend/family member will be dealing with these challenges, and they are different than the ones your NT child is/was facing. Just be there as a sounding board.
10) Get both parents out. Find a way for them to at least enjoy a peaceful dinner or a movie once a month. It will help both them as individuals and their marriage immensely. If they protest at first keep at it- they need it whether they know it or not.
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June 22, 2015
Last Friday I had the honor of being interviewed by Kerry Magro of Autism Speaks for his cable television show, “Different is Beautiful.” It was wonderful meeting Kerry, whom I’ve long admired, and I truly enjoyed the opportunity to talk about my writing and my life with the boys.
I love talking about them every chance I get.
Kerry asked me a variety of questions that day, ranging from how I got started with blogging to what were some of my initial reactions when my eldest son was diagnosed with autism. I enjoyed speaking about both topics, but it was the latter query that had me thinking as I navigated my way out of Jersey City and tried desperately not to end up in Manhattan.
Yes, I have a GPS. Yes, my home is in the opposite direction of New York City. No, none of that makes a difference.
After I found my way cheerfully back to the Jersey Turnpike South I allowed myself to think back over the interview, and that last question stayed with me. Frankly, by the time Justin was diagnosed I’d noticed his differences for almost a year- putting a label to them was almost a relief.
Eleven years ago nobody was diagnosing children under eighteen months- the fact that Justin got the autism label at seventeen months was an anomaly. Today however, some children are given a suspected diagnosis as early as six months; many parents won’t have a year to ease into their suspicions that their children are developing differently than neurotypical children. For many parents this label will come as a shock- perhaps their first reactions will be denial, anger, fear, and finally wondering if somehow they caused autism their child.
At the very least, most parents will probably feel overwhelmed.
There are things parents of newly diagnosed children can do in the first weeks and months that can truly help those overwhelmed feelings. Here are my top ten that I did eleven years ago, and recommend to all of you:
1) Ask for help. It may take you a while to figure out what you need, but ask for it. People will generally want to do something for your family but won’t know exactly what to do.
2) Make friends with other parents of autistic children. They will turn out to be wonderful resources, and will also provide invaluable support.
3) Find an autism support group. It may take a while to find the right fit; don’t get discouraged, keep trying!
4) If you are married or in a relationship, make time for it. You will need to support each other a lot in the first few months after a diagnosis. Make sure you get out and take some childless time for yourselves.
5) If you know you’re going to need to see various professionals for your child, make the appointments immediately. Sometimes it takes six months to get into an office. Further diagnoses may help your child get treatments or therapy.
6) If it’s too hard to tell people ask a friend or relative to share your child’s autism diagnosis with others. I did this with our second child on the spectrum, and it made life a lot easier.
7) Check out the Autism Speaks website and take a look at their tool kits. There’s a lot of valuable information there!
8) You will probably feel overwhelmed. Make lists of what you need to do and perhaps purchase a separate calendar for appointments, due dates on paperwork, etc. This will help you feel more organized.
9) If you’re ready to talk about your child but you don’t want opinions, tell people you just want them to listen. People mean well, but unless they have an autistic child they haven’t walked in your shoes. Telling them up front that you just need to vent can help.
10) Take care of yourself. Keep doctor appointments you’ve made for yourself, and carve out alone time if at all possible. You will need a break once in a while!
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January 2, 2014
Ten years ago this month I brought my first-born in for a routine doctor’s visit to address his reflux, a frequent and unwelcome visitor who had returned to torment my baby. I stood with my diaper-clad seventeen-month-old in a brightly lit, overheated room, anxious to get that magical scrip that would alleviate his discomfort, eager to leave the office and resume our lives.
Twenty minutes later I would stand in the center of that neon-lit waiting room shaking, barely able to dress my child, clutching incomplete articles with the word “autism” prominently displayed in the title in my trembling hands.
Ten years ago, in one minute my world as I knew it ended.
A decade ago I made a promise to myself that I would always tell it like it is, and I would be lying if I didn’t say that at times, the last ten years have been hell. Despite his generally positive, affectionate nature, my eldest child moves through cycles of aggression at least once a year. He is also plagued with OCD which renders him miserable at times, and wreaks havoc in our house.
I’ve also witnessed my second child (one who unlike his sibling appeared to develop typically) relinquish the world of sounds and descend into a foreign world of silence in the space of a few weeks. I watched as he too became victim to serious gastrointestinal issues, held him helplessly for months as diarrhea coursed through his body until the new diet we tried eventually kicked in and alleviated his suffering, much to our profound relief.
I won’t lie to any of you. At times, for both of my children, I could only equate autism with suffering.
At times, there truly was no silver lining.
I occasionally think back to the woman I was ten years ago, wrestling with her child’s diagnosis, and that same girl a half decade ago, as she watched the light as she knew it leave her second son’s eyes. In those instances our lives seemed devoid of hope, empty of promise.
Truly, the only way to go from either place was up.
I won’t ever tell another parent going through an autism diagnosis that it will definitely get better. Nobody, no matter what they tell you, nobody can completely predict the trajectory of a child’s progress at the time he or she is diagnosed. Trust me, Zach’s doctors are stunned that he’s mainstreamed in an inclusion class without an aide, participating in after-school actitivies, has friends (and yes, he’s still autistic.)
I used to see the glimmer of surprise in certain professionals’ faces when my eldest bestowed his frequent kisses on my in an exam room (we use different doctors now), watched their faces register disbelief that a severely affected child could be so loving. The doctors don’t know everything. However, they will probably tell you they do.
So, I won’t promise you that it will all be okay. But I will tell you you might change your definition of okay, and hopefully that will bring you peace.
My youngest son is still on the spectrum, but he believes his life to be one long glorious adventure, and for that I am grateful.
My eldest will never attend college, have a spouse, or live independently. I’ve reconciled myself to the fact that I will always be sad he doesn’t have these choices, yet relieved he seems to have forged a fragile truce with autism, is mostly a joyful, ebullient child, confident in the world he calls his own.
After ten long, arduous years there mostly exists a state of peace in our household, for which I am eternally grateful. This peace has enabled our family to have a full and rich life together.
This hard-won peace has given me back my life too.
After ten years we are finally in a place where I am contemplating part two of my career, feel I can make more time for friends, know I can breathe more easily. I feel as if I’m rediscovering myself, my needs, my wants, what makes me happy. At times I unearth the echoes of that fairly fun girl from ten years past, and I embrace her warmly, remember how her outlook was one where anything was possible.
I’m not there yet. But I’m working on it.
And as we begin a new year, full of wonder, full of promise, my wish for all of you is that this oft-elusive peace will grace your lives, and you will find yourselves once again too.
October 7, 2013
“When I was a little boy did I have autism?” my smallest son asks as he pauses momentarily in his teeth brushing duties. I feel my heart skip a beat as I realize this is “the moment,” followed by the thought chaser that his father isn’t home, and I’ll be handling this myself. Jeff and I decided years ago to wait to tell Zach about his autism until he started asking questions, and privately I decided to also wait until my mommy gut told me the time was right. That tiny voice which has been both my solace and saving grace all these years tells me this is my chance, in the quiet confines of our guest bathroom, to tell him.
It’s time for the “autism talk.”
I wrap his Thomas the Train towel more securely around his tall but lithe figure, and settle him down on my lap. I tell him when he was eighteen months old he got sick, had a high fever for days, was miserable. I tell him that after that illness he seemed to lose his words, was relegated to a vocabulary of “mama” and “juice” that bore no resemblance to his formerly loquacious self. I share with him that loose bowels tormented him for weeks until we removed gluten from his diet, and that in time, his tummy slowly healed, his words returned, as did the light in his eyes that had so entranced us. I tell him that a doctor told us he had a “little autism”, not a lot like his brother, but a little all the same.
He asks me if he’ll always have it, and I tell him that most people have it all of their lives. He pauses and processes, and after this momentary break I remind him his brother has it too. I tell him that autism is what allowed Justin able to read at the tender age of three. I tell him it’s what makes him so smart, so creative; and that autism gave him the gift of a phenomenal memory, is what enables him to retain all the dinosaur facts he loves so well.
I proceed to regale him again with stories of famous people presumed to have autism, ranging from contemporary figures to geniuses of the past like Albert Einstein, Mozart, and Thomas Jefferson. I share with him once more the fantastic contributions they have made to the world, that like Mozart and Michelangelo he loves and excels at music and art as well. I tell him that autism is what helps make him so unique and special, that his family loves him, that so many people love him. I tell him for the thousandth time how in awe I am of him, how my heart fills with pride that he tries so hard every day to conquer his fears and challenges. He hugs me and responds with exuberance that he will write a letter to George Lucas the next day and ask for a list of all the Star Wars characters who have autism.
Perhaps someone can help me out with finding his address.
After his George Lucas declaration he bounds from the bathroom to his bedroom to select his favorite pajamas, and I remain seated momentarily, allow myself to catch my breath after this momentous moment. I can hear that he’s moved on in his thought processes and is composing a story about dinosaurs without autism, that the window on this topic has shut for now, but remains wedged open. I think back over all the years I’ve been building to this moment, the times my husband and I have touted Justin’s innate intelligence, his affectionate nature, all the wonderful traits that this child with severe autism possesses in spades.
My mind wanders to all the discussions we’ve had about contributions made by autistic people, how smart they often are, how innovative. My son selects this moment to run in to ask me if there were kids in his pre-school with autism, and when I respond in the affirmative, he tells me that I’d put him in the right place.
Not only did this talk go well, I get validation. This is quickly becoming my favorite conversation ever.
Soon his father comes home, and I quickly sneak in that we’ve had “the talk” before he enters Zach’s bedroom, and before my husband has the chance to take it all in, my son yells “Daddy, I have a little autism!” and throws himself on his father, wrapping torso and limbs tightly around my spouse’s still-moving legs. Jeff looks at me and mouths “That went well,” and I smile in response, and try to corral an excited six-year-old to bed. On this night he asks me to cuddle with him as I read him his story, and I happily comply, as now that he is a “medium boy” I am not always invited for this treat. Soon kisses are dispensed, and I prepare myself that he may not capitulate to the onslaught of sleep, that all of this information may compel him to leave his bed on several occasions.
Several? Let’s make that six.
I head downstairs for that glass of wine I’ve rightly deserved, at peace with my declaration, enthralled with how it went down. My smallest son has autism. He knows it now, and our talk could not have gone better. His reaction was elation, coupled with pride, chased with joy at the gifts his particular brand of autism will bring to him.
And as I banish forever all the years of fear that have led up to this moment, I couldn’t be more proud myself.