September 16, 2020
Our Best Selves
The reality hit me from the email I received from Justin’s case manager yesterday. It included a letter introducing herself to the “newbies” in our town who are sending their children to Justin’s private autism school for the first time, and a reminder to the “oldies” that fortunately she would be sticking around again this year. I almost missed it as my eyes quickly went to the meat of the message to make sure she wasn’t being replaced, but eventually they returned to the top; under “student name” the words “grade 12” were prominently placed.
Grade 12. It is Justin’s senior year.
When I was carrying him, this really isn’t how I thought it would go.
Of course six months ago I didn’t think we’d be embroiled in a world pandemic that would last six months and have no forseeable ending, so maybe my powers of prediction aren’t that strong. I will tell you however that I never thought the child I was carrying would be spending his senior year in an autism school, not contemplating prom nor SAT prep nor driving.
Perhaps I don’t mourn the latter quite so much.
There are people in the community who would berate me for mourning these things almost two decades after his birth, perhaps lamenting that I don’t accept and revel in him as he is. Frankly, I say that is ridiculous. We are so connected, this child of mine who made me a mom. It’s okay to be sad he won’t have those choices, because for me it’s really about the lack of those choices, to love, to learn in college, and to drive to his girlfriend’s house. It is okay to wish he had these options.
I don’t believe it’s okay to be so distraught with grieving seventeen years later that I can’t help him be his best self, or enjoy him for who he is. And I’ve worked really hard over the years to get to that place.
I have shelved those losses, but I admit I haven’t shelved them all. I will never be at peace with the fact that I must likely won’t be here his whole life to love and shelter him, to keep him safe. Will he have a brother and cousins to help him carry out that sacred task? Absolutely. Will it ever be enough to give me peace of mind? Absolutely not.
That ache, that worry and concern, will never fade for me.
I have found over the course of living with autism and all its adventures for seventeen years that probably some of the biggest factors in having a safe, happy and productive autism family are being able to admit fears and concerns, accept your child’s strengths and limitations, and taking small steps constantly to solicit their best selves. If you can do those things while simultaneously being kind to yourself as you work through the myriad of challenges you will face as a family, you have a much better chance at a safe and happy family.
And at the end of the day, that is what I always wish for.
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April 3, 2014
World Autism Awareness Day Part Two
Today, as with every day, my heart is bursting with pride for my eldest son Justin, who has severe autism. This week his private autism school hosted a news conference on the eve of World Autism Awareness Day, an event held by Congressman Chris Smith, co-chair of the House Autism Caucus, and Autism New Jersey. As with any news conference there is usually a photo opp, and my son was selected to be the “face of autism” that day (the link is below.) There are two beautiful pictures, a close-up of him apparently contemplating very deep thoughts, and a precious one of him working with his talented and adored teacher.
The accompanying article highlights the high rate of autism in my home state, which is 1 in 45 children in New Jersey, the highest rate in the country. It outlines the work my friends Bobbie and Billy Gallagher did almost two decades ago to bring the rising prevalence of autism in the Garden State to Representative Smith’s attention, an act which contributed to bringing about Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000 (the first comprehensive federal program centered around autism.) I am so proud of the Gallaghers for being pioneers well before autism was a household word, and thrilled that my son’s school was given the honor of hosting the conference.
But as I mentioned before, my heart sings for my son.
Of course it’s fun that his handsome countenance was featured in the Asbury Park Press, the paper of my childhood. I admit, it was a thrill to see him both online (and imagine this) in hard print as well. Quite frankly a few tears were shed yesterday, from both me and my husband too.
But I’m writing about this today not to brag about my son getting media time (okay, maybe it’s a little bit about that.)
I’m writing to you today about hope, and perserverance and love, and never giving up the fight to carve out the best life possible for him, the one he was born to lead.
Ten years ago my son was diagnosed with severe autism. He could barely tolerate anyone in his home, was phobic of strangers, had severe difficulties pairing with therapists, and clung desperately to his parents.
Two days ago he noticed the photographers, acknowledged them briefly, and went about his business of school with a smile.
Ten years ago my son screamed and sobbed whenever anyone tried to work with him, no matter how desirable the reinforcers being offered to him.
Two days ago he worked diligently (and most importantly, joyfully) with his teacher for his coveted bagel chips, but mostly for the love of learning.
Ten years ago we watched as his first birthday came and went, and so did the few vowels and consonants we held so dear.
Two days ago he used an iPad to communicate his wants, and is even beginning to fashion words for us, including two-word sentences which seem like miracles.
Ten years ago I thought I’d never see him smile.
Today, and every day for the past few years, I am witness to the unearthing of his ebullient soul.
Yesterday I cleaned out our local 7-11 of every Asbury Park Press they had (we have a lot of relatives,) and I am certain the photo of my son’s slight smile will make it into his scrapbook. There were phone calls to grandparents, emails to friends, and of course the obligatory status update on Facebook.
As I mentioned before, I’m a proud momma of an autistic child.
But the beautiful part of all this is sometimes I need a not-so-gentle reminder to celebrate how far we’ve come, how our family was forged in fire, and now revels predominantly in peace. My son is happy. He loves his life.
My son with severe autism loves his life.
And nothing in the world could make me more proud.
January 6, 2014
Tears of Joy
“Mommy, tell me a story” my six-year-old with mild autism entreats me, and in the rearview mirror I see him gift me with that grin I know so well. “Ok, who will be in it?” I reply a bit tiredly, but I’m game as he hasn’t asked me to recount one to him in a while, and I’m loathe to relinquish our mutual passion for tale-telling.
“Me, Justin, and monsters” he answers, and for some reason my mind wanders to a story I’d just told him where he vanquished the Loch Ness Monster, ultimately taming her and using the beast to fight the Dark Side.
I soon weave him a story in which his older brother with severe autism is stranded on a raft in Nessie’s lake, is terrified of being capsized by the broad arc of the serpent’s tale. At the end I tell him how grateful Justin is to him for saving his life. I also share with him how although his big brother can’t speak out loud, in the story he talks to Zach in his heart.
I tell my son his brother says “I love you Zach, you are the best little brother in the world, thank you for saving my life,” and I end with a grin. I glance in the mirror one more time and see my eldest rocking out to “Rudolph the Red-nosed Reindeer” then I swivel slightly to see if my latest fable has met with my son’s quite discriminating approval.
In the reflected light of the mirror I see my small son’s head in his hands, fingers nudging his glasses off his face, his shoulders shaking slightly as tears roll down his cheeks.
It appears my story-telling has made my own six-year-old cry.
I quickly ask him what is wrong, and after a short silence ask him if the ending made him sad. He answers that he is in fact crying tears of joy because his brother is talking to him, even if it’s in his heart. He tells me the story was a good one.
I take a deep breath and wipe my own eyes.
In my family we discuss autism all the time. Zach knows and revels in the face he has a “little bit of autism.” He is aware that Justin quite obviously has a lot. He also knows his brother loves him, evidence of which I provide on a weekly basis. Zach is aware that Justin would never permit another child to be so physical with him, would never welcome the hugs and infrequent rough-housing Zach bestows upon his sibling as often as he can.
He is well aware that Justin’s face lights up whenever he enters the room- that even thought his big brother cannot express his joy vocally, he conveys it through his expressions and his compliance with Zach’s frequent demands. My last child has told me over and over again that he’s okay with Justin having the disorder, fine with the fact he doesn’t speak to him out loud, quite confident in the relationship they’ve formed.
Yet I wonder, for the millionth time, if he really is okay with it all.
I reassure him that while it’s alright to have tears of joy, that it’s always okay to have tears of sadness too. I tell him that I’m sometimes sad that Justin’s autism is severe, that my son who grants me a hundred kisses daily is held captive to his OCD, the rigors of which often render him miserable.
I tell him I wish Justin could have friends like he does, and I see Zach nod his head slightly in acquiescence. I share with him that I wish my first child could talk too, how it’s hard for me not to know what he’s thinking, that I’m certain a vibrant intelligence dwells beneath his almost-mute exterior. I ask Zach if he wants to talk more about Justin and he says no, that he’s okay. He then commands another tale, requests that this one include light sabers and epic battles waged. I tell him I’ll see what I can do.
It is clear the conversation is closed, at least for today. But I know I’ll revisit it many times, encourage him to share his feelings, even his disappointments. We talk a lot, me and my smallest son. Our discussions are something I never take for granted.
So I breathe deeply again, and devise a tale where he and Justin must work together to overcome great evil, each using his strengths to counteract his sibling’s weaknesses. I forge a path where together the boys benevolently rule the world, each in his own way. At the conclusion they remain connected to one another, and reign victorious over any who would threaten them, or their bond.
And as I end yet another saga for my boy, my own heart speaks out loud, wishing it to be a tale come true.
Autism Mommy-Therapist 