February 21, 2017
We turn into the driveway of the church parking lot accompanied by the slight whine of discontent of my eldest son, who I am certain would rather skip this detour and head for home. My youngest is peppering me with questions- “Mommy, what year did you and Daddy get married?” and “Was I here?” (nope, not even close), and with his usual enthusiasm he embraces our little side trip, eager to see inside the place where it all started.
We get the kids out of the car and bundle up against the frigid, windy day, hiking up the hill to the small white building waiting for us, explaining to Zach that most likely it will be locked and we’ll only be able to peek in the windows. I share with him that many of his relatives are buried here and he immediately wants to see them, but Justin once again makes his displeasure known and I continue to hustle them up the flagstone path.
It is closed to us as we expected, but I am able to point out where my fiancé and I stood to make our vows to one another, am able to show him where his relatives sat, how solemn and beautiful is this sacred space. Just as we are about to turn away the minister hails us from down the hill, and as he approaches we tell him we were married here and ask to go inside.
Luckily he has the key, and after a short lecture about the history of the church we are left to roam. Justin settles himself in a pew as my other son and now husband wander around, and I step up to the altar where I stood twenty years before, my thoughts turning back to the joyful life I’d thought I’d lead. I’d believed it would transpire in DC, with a career that would progress from teaching to administration. It would include two kids sometime down the road, and hopefully some continuation of the path we’d built for ourselves which included travel, friends, and all the culture the nation’s capital had to offer. My vision was of a simple life filled with love, family, friends, and laughter, nothing extravagant.
Things didn’t quite turn out as I’d expected (understatement of the century).
We did have those two fabulous kids, but the career and DC were shelved so that I could do thirty hours a week of therapy with my toddler and the location shift was for better services and to be closer to family. After fifteen years in Virginia we had to reinvent ourselves in New Jersey, living not far from my old stomping grounds but far enough to have to start over.
Frankly, nothing worked out as I’d planned.
My Plan A was shelved for Plan B (and honestly C and D often came into play too). I traded working and mothering for hours on the floor begging my eldest boy to make a sound. I relinquished Mommy and Me to navigate the murky waters of Virginia Early Intervention. Playdates in the park were put aside for training sessions, internet research and making gluten-free chicken nuggets from scratch so my eldest son would eat.
The landscape of our lives looked nothing like I’d thought it would.
Two years after relocating, after a year-and-a-half of the absence of all the signs of autism our eldest had displayed we watched our youngest regress, relinquishing his precious words, losing the light in his eyes. This time at least we had help, and I reveled in the novelty of having trained personnel to help me coax my son back, praying to see his ebullient soul once more.
In time, he returned, altered, but still irrevocably, beautifully, him.
If anyone had told the girl standing so expectantly at that altar that at fifty she’d be a stay-at-home mom with two autistic kids living large in the Garden State, I’m sure she’d have laughed.
You see, that so wasn’t the plan.
But we all know the saying about the best laid plans.
My husband and I now have two autistic kids in double digits, one who will need lifetime care, and one who will care for himself.
Between the two boys together we have endured their insomnia, sensory issues, and aggression.
We have seen milestones quite different from the ones we expected achieved and celebrated, and have learned to let others go.
We have witnessed the loss of language, and its heralded return.
We have watched with almost unbearable pride how our boys have mastered many challenges, both with strength, and grace.
We have held each other and cried from fear for their futures.
We have held each other and cried tears of joy from who they’ve turned out to be.
This life was most definitely not the plan.
But there is beauty here, and solace in the sanctuary we’ve been able to provide the boys so they can become their best selves, whatever that will be.
There is still family, friends, and laughter.
There is love.
I turn to embrace my son as he leaves the confines of his pew, and for this former blushing bride, it is enough.
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February 13, 2017
It came home in your folder today, the flyer with the fun graphics from your even more fun teacher touting “100 Day,” where you are supposed to dress up like a centenarian. Within minutes I am rifling through your closet for a button down shirt and a tie, combing your dad’s closet for a suitable hat. You approve your future garb and I put it aside for the next week, moving on to more important tasks like feeding my always-hungry boys, one mildly autistic and one not-so-much, and for a time, the celebration is forgotten.
Later, as I’m washing my hundredth dish that day, I do the small amount of mental math I’m still capable of doing. Living to one hundred gets you to 2107. Realistically, at that point I will have been gone for more than half your life.
As I think of how much you still like to snuggle with me it seems impossible that there will come a day I will no longer be with you.
My goal is to remain alive and cognizant until you’re fifty, a goal which I try to attain by regular check-ups, exercise, and (sort of) limiting that wine intake. My mind stretches out over the next four decades of your life- I hope there is a lovely wife, at least a few of the five kids you’re planning on (remember hon, they’re expensive), friends, a career and independence. If I blur the edges a little I can envision you as a husband, a father, a grandfather. I think how much your boundless enthusiasm for life and your eclectic interests will make you an interesting dad and grandad, how I hope these children I may meet when even walking is a challenge will appreciate you.
I know I do.
Of course, I can’t help but let my mind wander to your older brother being a hundred, and since at least on my side of the family our relatives live a ridiculously long time, that goal may be attainable. I’m hoping to make it to fifty with him too, see him settled in a good group home near his sibling, enrolled in a day program he loves, somehow able to get to those therapeutic horseback riding lessons he adores. I envision there will be frequent visits from his mom and dad (if we can still drive), and that in his own way he will one day be independent of me, although never independent of others.
And that’s where the anxiety creeps back in. I just can’t envision getting him from fifty to death without me.
I’ve written before about him making it to eighty and me to a hundred and sixteen, holding hands as he takes his last breath and I follow along behind him. Rationally I know this won’t happen (even giving up more wine doesn’t make that attainable), but God, I wish it was.
I brought him into this world, and with his need for constant care, I wish I could see him out.
I’m hopeful he’ll have his little brother to look in on him, but I know he’ll be busy with those five kids. They do have a bond between them but I can’t say they’re close anymore. When they were both little we could engage them in games together, but as Zach shed rolling balls back and forth for Star Wars trivia the gap widened, only to be truly breached at bedtime with our communal songs. I am certain my youngest will one day be busy with the trappings of a more “normal” life, may not even live near his brother.
It breaks my heart to think that one day you will be surrounded by people who may like you, but don’t love you.
Even as I pen these words I know for me they’re hypocritical. Although I’m a stay-at-home mom I’ve always been the first to tell friends that day care is not the devil, that there was no difference in the emotional stability of the three hundred kids I taught who’d had outside care or had been home with a parent. Kids need love yes, but maybe they don’t need to be enmeshed in love every single second of their day. Justin will be an adult when he enters a home, will have had decades of love and hugs by the time he moves out. Intellectually, I believe he will be okay.
But this quest for hundred year old garb has made me wonder about his future.
Who will take him to the successors of his fancy neurologist to make sure his meds are right?
Who will remember to spend extra care flossing that gap between the two teeth on the left hand side of his mouth?
Who will schedule (and dear God, do the prep work) for his colonoscopy?
Who will cuddle with my seventy-five-year-old and read him an Eric Carle book (I can guarantee he’ll still want that).
Other than his brother, who will love him?
How do I exit from his life? Do I spend every last possible minute with him, or fade out slowly as it becomes apparent that my time is drawing near?
Hell, will I even have a choice?
When I’m gone, will he miss me, or will the differences in his brain allow a quick fade of attachment?
Yup, being selfless for a moment here, I’m hoping for the latter.
Things have improved lately chez McCafferty. After a long bout with extreme OCD my son’s obsessions seem to have been quelled somewhat, giving us a more “typical” life at home, for which my husband and I are extremely grateful. My youngest is thriving.
We are a happy family. I am happy.
But I share with you that for any family looking toward the future with a severely disabled child, there is always that unknown of what’s to come lurking there, obdurate in its tenacity. Even on a good day, and there are many, my concerns for his future are always with me. On most days I’ve shelved this worry for my sanity, but I know it will always be there. It is perhaps the one thing I am certain of with this life.
And if I make it to one hundred and I still know who I am, I’ll carry it with me too.
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February 6, 2017
He sits quietly between me and his father, staring straight ahead as I attempt to engage him. I ask him if he’s happy to be here at the Trenton planetarium for their holiday laser light show, and I get nothing back, neither eye contact nor the glimmer of a smile. I settle back in my chair and deal with his brother who is both cranky and tired, and within a few minutes, the music and magic begin.
And my boy is transformed.
As the first notes of “Rudolph” ring out Justin begins to rock back and forth (we get there early so he can sit in the back row and rock out to his heart’s content), gracing me with the slightest glimmer of a smile. His movements really ramp up as the chipmunk song comes on, a staple of the show. I see him lean over and smile at his grandma as he does every year, and we both swear he remembers this is the first movie he ever saw on the big screen, and that he saw it with her.
So much goes on in my boy’s brain he doesn’t need to use words to express.
As the “Two Front Teeth” song comes on (which for some reason annoys me annually) I let myself think back over the last ten years we’ve been bringing him and later his brother here, how stressful this outing used to be. Some years the show was packed and so we made it a priority to get to the planetarium absurdly early which guaranteed us good seats, but brought with it its own set of difficulties. Back in the day Justin had a really difficult time waiting in line, and with food and drink prohibited even a plentiful array of toys could not often deflect our son’s desire to bolt. Often his father and I would be a sweaty mess even before they let us into the inner sanctum, but somehow once we got inside Justin always calmed down and reveled in the notes and colors of the show.
He’s always not only behaved there, but delighted in the experience. In turn he’s delighted his parents as well.
It being the end of the year and all I’m at least trying to carve out some time for reflection (it’s a goal), and as I think about how far we’ve come in the ten years we’ve made him a Jersey boy I realize how far we’ve come with other outings as well. Back in the day I’d return home bloodied and bruised from a trip to the boardwalk, my son’s aversion to waiting in line evidenced by my colorful flesh. The pool at one point held no interest for him and was regarded as a well of torture. Our first attempt at horseback riding through a family event sponsored by POAC resulted in my boy protesting on that horse for the entire fifteen minutes, his indignation at having to ride the beast apparent for all to see. Trying to get him not to bolt out of the waiting room on a blood draw day (can’t blame him for this one) was a Herculean effort I’d almost fail.
Trying to get him to eat anything that wasn’t a carb was enough to send me to my own chocolate stash.
And yet, almost a decade after we’d attempted all of these outings my boy loves the rides, and will at least do one round around the pool without protest. I’ve been told he’s an amazing patient at Lab Corp, and his horseback riding lesson is the pinnacle of his week.
Hell, the kid even eats lettuce.
The point is, even when it was grueling, annoying, or frankly painful, we kept trying. We kept trying, but not because we wanted him to like the same things as his neurotypical peers. We did it in part because we wanted him to have interests other than playing the same thirty seconds of a movie on his DVD player (which we feel is fine for a while, but not all day). We mostly did it however because we felt if we kept on trying the kid would actually like these activities, that they would allow him to stretch and grow, and most importantly, make him happy.
Eventually, we were right.
And I guess my message to anyone just starting out on this autism path is keep trying. When Justin was really little and we lived in DC our world was so small, as literally just leaving the house would trigger an avalanche of tears. I remember how in the dead of winter I literally could not be cooped up one more day. I began what I dubbed “mall madness “, which began with me just driving to the parking lot and returning home, and ended with my kid after slow desensitization loving being walked around the mall and devouring those devilishly delicious Auntie Anne’s pretzels that became my weakness too.
Even before learning the tenets of ABA I was big on rewards.
So perhaps this new year make getting out a goal, start trying new things even if they suck at first (and many will), and don’t give up on widening both your child’s world, and your own. My son is thirteen and severely autistic, and for the most part he is a delight to take anywhere, and enjoys where we go. It took patience and band-aids and lots of wine but my husband and I did it, and as I see my son’s face light up as he’s trotting away on his horse I know I’ll never regret one moment of our struggles (not even the ones that needed Neosporin).
My wish to you in the new year is plan for your outings (plans b, c, and d are good), and if anyone’s offered you any help take them up on it and bring them along. Remember that neither Rome nor acclimating your autistic kid to the outside world were built in a day.
And as Nike would say, “just do it.”
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January 23, 2017
I am overwhelmed.
I know, I usually write fairly positive missives about our family’s life with autism, but right now, at this moment, as I’m thankful I’m not outside on this blustery Monday morning, I am overwhelmed.
I am overwhelmed at the enormity of decisions that will be made this year and the impact they could have on my severely autistic son’s life.
I won’t make this a long political rant- there are other bloggers who can do this much better, and I know my readers are informed, so I’m preaching to the choir.
But there’s this- Endrew F. v. Douglas County School District RE-1, where the Supreme Court will probably be ruling this spring or summer as to what the “A” (appropriate) in FAPE means, i.e. whether or not special needs children deserve the right through IDEA to services which provide “some” educational benefit, or something more meaningful.
And there’s this- Betsy Devos’s terrifying unfamiliarity with IDEA as a federal law. Good Lord.
And there’s also this- the devastating rules and regulations proposed by the NJ State Board of Education and the NJ Department of Education which, if imposed, could close many of our state’s much needed private schools for children with disabilities.
Including my son’s.
And last, just for fun, I’m worried about Medicare and Medicaid too. Why not throw one more thing in the mix?
I will tell all of you straight up that I never take IDEA, the continued existence of my son’s school, his district’s decision to place him there, or his ability to behaviorally keep his placement for granted. I’ve written posts where I’ve thanked disability parents “of yore” for the creation of IDEA. I’ve written posts to the founding families who brought my son’s school to life through their hard work and dedication. I’ve thanked my son’s school personnel for being so on top of any rule or regulation that might compromise their ability to stay open. And I am grateful, eternally grateful, that through behavioral strategies, medication, my son’s teachers’ expertise, and hell, love and luck, my boy is able to thrive in the placement that has become his second home.
I am gratitude attitude personified.
I know twenty-one and beyond brings its own landscape of troubles. There is not a day that goes by that I don’t hope desperately that my beautiful boy will find an appropriate day program that he loves, activities he adores that will grow with him into adulthood, and most importantly, when it’s time, a residence where he’ll be happy, and safe. I know I will most likely struggle and fight to have these dreams come to pass. I know it won’t be easy.
But I no longer feel relatively safe in our little pre-twenty-one cocoon. There have been days in the last few weeks where I longingly envision signing that last damn IEP, knowing at that point my son will get to stay in the place that he loves until he reaches drinking age. There are days that I long to know I’ve done it. To know that his school’s done it. To know that his sending district’s done it. To know that IDEA’s done it.
To know that he’s done it.
I’m already planning on having a post-signing party. There will be wine and dancing. And chocolate.
Despite being overwhelmed, I want to leave you all with the opportunity to do something if you so choose. Last week Diary of a Mom wrote a wonderful post about Betsy Devos and listed all the Senators on the Senate HELP Committee and their phone numbers (the ones who heard testimony from her). If you are so inclined to call, here is the link:
If you are interested in writing a letter to the NJ State Board of Education or the NJ Department of Education here is the link to my blog with a sample letter and addresses:
Please, do what you can to help. And as always, thank you for reading!
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January 17, 2017
Editor’s note: I’ve written the following letter in response to an email I received from my son’s private school director regarding a parent action alert from ASAH (Association of Schools and Agencies for the Handicapped.) The New Jersey State Board of Education and the New Jersey Department of Education are proposing new rules and amendments (many of which I listed in the letter, but there are more) which if implemented will have a devastating effect on private schools for special education students in our state, both in their efforts to deliver services and to stay open. I will be sending this letter both to the president of the State Board of Education and the acting commissioner of the Department of Education. If you have a special needs child in a private school in New Jersey I hope you too will consider writing a letter, contacts/addresses are listed at the bottom of this post. If you know someone who has a child in a special needs private school in New Jersey please let them know about the proposed changes. Thank you!
January 16, 2017
Dear Mr. Biedron/Ms. Harrington,
My name is Kimberlee McCafferty, and I am the mother of two autistic boys, a writer, veteran educator, and an autism advocate. The needs of my youngest boy, Zachary, have been well served within our public school system, however our almost fourteen-year-old, Justin, has received his education in a private school setting for the last seven years.
Justin is primarily non-verbal and has a co-existing diagnosis of OCD. He began his educational career in two different public school systems, Freehold and Brick. After four years, it became apparent that our local district, Brick, no longer had a program for him, and our case manager urged us to look elsewhere. We toured both public and private schools, and at last settled on his current placement in a private school. It is the perfect placement for him as he has made significant progress in all developmental areas.
It is truly his second home.
Mr. Biedron/Ms. Harrington, I have carefully read through the New Jersey State Board of Education and the New Jersey Department of Education’s proposed rules and amendments. Your desire to restrict salaries and limit training funds, your request that any gains from any properties sold by private schools must go to public schools, and your suggestion to limit the cost of food services thereby prohibiting many children with severe feeding issues from attending private school, would all drastically compromise many institutions’ capacity to stay open and provide the services so desperately needed by many special needs children in our state.
We are not talking about just a few lives here, although to deprive even one special education student of the services they require is reprehensible. We are talking about 11,000 lives: children who cannot eat without the assistance of a feeding tube; children who cannot walk; and, children, like my son, who cannot speak and requires all personnel who work with him to be adequately trained in behaviorist principles so that he may not only function, but thrive.
These are children whose needs simply cannot be served within the setting of a public school system. We know, because we have experienced both the public and private settings.
If my son’s private school were to close, the impact would not be merely disruptive: the effect would be disastrous, not just to him and the seventy other students and young adults who make such beautiful progress there, but to their parents and siblings as well. A new placement at this juncture in Justin’s development would most certainly elicit a massive regression in all aspects of his life. He has come to love his school, the personnel, and even as a severely autistic child has made connections with classmates over the years. He most adamantly requires the expertise of the educators there and would not continue to grow and develop to his full potential were his placement rescinded.
Ultimately, the effect of closing Justin’s school would be devastating.
Please Mr. Biedron/Ms. Harrington, please reconsider your proposed regulations.
Eleven-thousand children are counting on you.
Mr. Mark W. Biedron
New Jersey State Board of Education
State Board Office
P.O. Box 500
Ms. Kimberly Harrington
New Jersey Department of Education
P.O. Box 500
For more on my family visit my blog at autismmommytherapist.wordpress.com
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January 9, 2017
He stands hesitantly at the door, my littlest love, watching as Justin and I rock gently back and forth on the glider that serves as our throne as I read his teenaged brother one of his beloved Eric Carle books. I see him mid-sentence, and figuring he wants more pretzels or juice or something consumable I pause and ask him what he wants. “I want to say goodnight to Justin” he says and enters the room, insinuating himself on my one available thigh. My heart both clutches and expands, and I read on about the miraculous Mr. Seahorse as he gestates what looks to be like a thousand eggs for his wife.
I’ve always loved Eric Carle.
As Zach settles on my lap I look swiftly at Justin to see how he’s taken this alteration in his routine, and a huge smile graces his face, and I relax. I want this to go well because, well, they’re brothers, and although I’ve tried hard over the years to forge a closeness between them it’s been difficult as they don’t share the same interests, and in later years Zach hasn’t really wanted to try.
When the boys were very little, before Zach’s regression, my youngest spent a great deal of time trying to get his brother’s attention. He was always pulling on Justin’s shirt, calling to him from across the room, and generally trying to get noticed. It was easier to contrive moments of connection back then; I could put both of them in Zach’s crib and Zach would always take Justin’s hand (and Justin would let him), and I know that satisfied Zach’s desire to be seen.
Then in the space of a few weeks our baby lost most of his speech, developed a rash all over his body, and the light disappeared from his eyes. I can tell you I wasn’t worried at that point about sibling relations one bit.
Over the course of the next few months we changed Zach’s diet and started Early Intervention services as we had with his brother, and slowly our son emerged, altered, but once again speaking, and most importantly, happy. As we navigated our way a second time through his current services and prepared for the myriad of hoops we’d have to jump through to get him a special education placement I put brotherly bonding on the back burner, but never pushed it entirely from my mind.
Years passed, and Justin became more and more restricted in his interests to the same degree that Zach’s world continued to widen, and I saw more and more that opportunities for them to interact became fewer and far between. Justin liked movies on his DVD player, but only the same thirty seconds over and over to Zach’s desire for a full length feature. Beach excursions became work as I battled to engage Justin’s interest so we could last an hour, and eventually I stopped taking them together as leaving early didn’t seem fair to my youngest beach bum. My eldest wasn’t interested in any of the computer games that so enthralled our youngest, and eventually I let this dream go as I focused on getting them both to sleep, eat anything other than carbs, and most importantly, (thank God!) potty train.
When it comes to autism, I have my priorities.
Over the years Zach would occasionally say he wished he could play with his brother (then in the same breath would ask for a younger sibling, at which point I would emphatically tell him the store was closed). Zach made friends both within and without his school, and his desire for an in-residence playmate waned. He was okay with helping out with Justin on occasion, but that desire for connection seemed to have disappeared.
Then last night he told me he wanted to start saying goodnight to Justin, and the window opened again.
My eldest son can read, and in the past year or so has been gracing us with words here and there. In an attempt to elicit more speech from him I’ve been letting him fill in the last word on every page of our night’s literature, and asking him to fill in the last word of the three songs we share together every evening; “Silent Night”, “Over the Rainbow” and his “special song”, which I made up in desperation to get him to stop crying when he was six weeks old.
It didn’t work, but the song stuck.
We went through our routine, and Justin loved the change. He’d giggle every time we pointed at him to speak, and gave his brother complete and uninterrupted eye contact the entire time. Zach ate it up too, chastising me when I forgot to leave off a word in one line of lyric, reveling in his brother’s attentions. As the last notes of “Silent Night” drifted off I stood up and Zach slipped into my space, and as I went to return our book to his father’s study something stopped me, and I turned around.
All on his own, my son who initiates affection only with me and his father, leaned in close to Zach so he could get his “forehead kiss”. Then he clasped Zach’s hands with his, and gently grazed them with his lips.
Justin immediately began his maneuvers around the room with a delighted smile, and Zach gazed at me in wonder. “He loves you, Zach” I said and my youngest gave me the briefest of nods, a kiss on the shoulder, and bounded out of the room for his pretzels.
My son has his priorities too.
There are heartbreaking moments with autism. My son’s dual diagnosis of OCD can be overwhelming at times, and although I believe we’ve finally found a remedy the memories of the past two years are always with us, both our son’s struggles, and ours. There are times we can’t understand him even when he uses his device, and his frustration and my feeling of failure can be difficult to bear. I can never reconcile with the fact I’ll leave Justin on this earth for forty years without me, knowing I’ll have to trust in his little brother to oversee his health, safety, and hopefully, his continued happiness.
But there are these moments with autism, even severe autism, moments of such stunning clarity and grace that I know I have to push myself to be present so I don’t miss even one. My youngest is taking an interest in his brother again, and I know I will build on this moment, stretch it as far as it will go, hope for their bond to be strengthened and unbreakable as the years and decades pass. It is up to me to grab these opportunities as they emerge, but truly it is up to them to forge what they will, and ultimately I have to accept that too.
But in the meantime, there is a song, a story, and a kiss. There is a moment of profound love.
And for once, I am at peace.
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January 3, 2017
Dear Family and Friends,
I realize I’ve missed the window on the traditional Christmas missive, but since I’ve missed it for the last ten years really, what’s a few more weeks? I’ll admit that part of why I haven’t scripted one is due to the fact that I write about my family every week on this blog (more is overkill, we’re not nearly as exciting as the Kardashians), and partly because I’m just too tired in December to write one more damn thing.
I know, lame, but honest.
While those are some superficial reasons why I haven’t penned a long soliloquy about various McCafferty exploits over the years, there are some darker reasons as well, reasons that just didn’t seem in synch with the holiday season.
Yes, I’m a hero for sparing you.
You see, I always thought I’d write one of these things after I had a kid, particularly because having our first kid was a two year odyssey for us, and there was no way I was missing out on anything. Four rounds of IVF and three miscarriages later I figured I’d earn the right to share every last giggle, burp and utterly adorable exclamation my hard-earned son made, and since we had him late and I’d read all of your tributes, I thought I’d return the favor.
However, that first holiday season I was a mom my six- month- old was spinning everything in sight, never slept, and regarded any existence other than the ones my arms could provide as an onerous chore.
My pen stayed silent that year.
My second year as a mom started out a bit more propitiously, but by the end my pediatrician had stuffed a bunch of miscopied articles into my hand with the word “autism” in the titles and almost shoved me out the door to await the word of a developmental pediatrician, and I wasn’t feeling so very merry.
Neither was my toddler.
We shed our world of outings and fairly depressing playdates and embraced the world of thirty-five hour a week ABA, mostly conducted by me. At the end of that of that third year while my son was still severely autistic things had calmed down a bit, and my boy seemed to respond well to his harried therapist mom. The truth is I still didn’t know what to say to all of you, as I wasn’t sure that explaining how triumphant I felt that I could finally take my boy to the mall without a meltdown (on either of our parts) would translate in your world of school successes, vacations (and to my friends who had children at normal ages), college scouting.
Plus, I still wasn’t feeling so very merry.
Over the years I felt our family life (particularly after my second son showed signs of regressive autism at eighteen months) would be such a foreign landscape to my friends with neurotypical kids that I’d have to write two different missives so as to not confuse anyone. Frankly, there seems to be a formula to the traditional missive that involves job changes, travel and school achievements. I’d left my career to be my son’s therapist, and travel entailed an outing to the pharmacy if we were lucky. I just wasn’t certain anyone would “get” my delight that my eldest child adored his older NT buddy at school, or my gratitude he’d been placed in the least behavioral of the three teen-aged classes at his private placement. I wasn’t sure I’d be able to convey my joy that my youngest son’s academic and social needs have been so reduced year to year that he’s now working off the blue print of a 504 rather than an IEP, and most importantly, he loves school, has friends, and adores his life.
I think I sold all of you short.
There won’t be any pretty, “wrap-it-up in a perfect bow” final paragraph to outline this last (or hell, ten) year’s achievements. Life here is still both incredibly messy and heartbreakingly beautiful at times. There are days where my eldest hears a song on his DVD player that must harken to his infancy because he’ll take my hands, display his dimple with his across-his-face grin, and all initiated by him, insist we dance. There are other times I’ve sat for almost an hour on the cold tile of my kitchen floor with my back against the freezer to prevent him from having a third damn Philly pretzel (because if one day he gets three the next day he’ll want five, I know to parents of autistic kids I’m preaching to the choir).
See why I thought I might need to write two different missives?
The truth is, thirteen years (and two kids) into this autism journey I’ve begun to see more commonality than differences in our families. We (mostly) all sleep now, eat from several different food groups, and within limits we can take Justin wherever we need to go. We’ve all been successfully to Disney (!) twice, my husband’s still employed, and the kids are absolutely thriving at their schools. I’ve even begun to make tentative forays into the “after-twenty-one” world for my eldest, have glimpsed possibilities that have a good chance of coming to fruition in the next seven years.
The “abyss” can go to hell.
Maybe I’ll start a new tradition this December and urge my failing memory to recall the yin and the yang, the good, the bad, and the sometimes excruciatingly irritating, and put it all down on paper.
Then again, if some chocolate and a good book beckon, don’t hold your breath.
The truth is, I’m proud of where this family’s ended up, and happy to hear about all of your struggles and accomplishments too. I wish everyone reading this the very best in 2017, and always.
And to any families just starting out on this path, my belated holiday wish to you is to find your peace.
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December 19, 2016
(Editor’s note: I run this piece every year, it just seems to sum up everything. I hope you enjoy it!)
We made a gingerbread house today, my youngest and me. Not the fancy
version mind you, with its cinnamon-spiced cookie walls and sticky-sweet
icing for snow, but the felt version, as I have yet to figure out how
to create an edible construct that’s gluten and casein-free. The form
doesn’t seem to matter to Zach however, as he seems content just to
forge this linen building with craft glue and discretely adhered masking
tape. He is simply happy to sit at our designated table with his mommy,
and design his own.
I am thrilled to be here with him as well, as this is the first
“Christmas house” we have built together, and the added bonus is it
conjures up the requisite images of festive architecture from my
childhood past, pleasant in their remembrance. As I sit with him and
attempt to gain better purchase on the tiny chair I am well aware of the
enormity of this gift, the ability to carry on a tradition with my
child, one who is eager and willing to perform it with me, one who
miraculously was able to request its creation.
It’s the last month of the year, and as always, just like the
commencement of the school year, it’s a time of reflection for me. I
consider where we’ve been and where we now reside as I help Zachary
fabricate his house, watch him carefully separate out the pieces of his
one-dimensional art form with such care, and manipulate the tiny forms
with such ease. He desires to begin at the top of his home and work his
way down, and as I’ve never been one to insist on coloring in the lines
we alter our blueprint a little, an act we’ve committed time and time
again in our tiny family of four.
He begins with the roof, which he tells me firmly we require because
“it will keep everyone warm and cozy”. As I contemplate how he’s
incorporated the latter adjective into his lexicon of words I am
simultaneously reminded of the outpouring of care and compassion we’ve
received over the years, the small and grand acts of largesse, and the
kind words both spoken and written to encourage our clan in times of
conflict. These acts have blanketed us, permitted this family to retain
the heat, the fire necessary to forge through the most searingly
difficult times. We could not have built our own home without them.
Once the roof is safely adhered Zach moves onto the windows, neatly
punching through the cloth panes of glass to afford us a glimpse of the
other side, allowing us to widen our view. I recall how watching my
youngest son’s language expand, and my oldest son’s increasing desire
for social interaction, have both enabled me to envision a different
world for my children this year. We now inhabit a home in which the
future may hold more than just fleeting glimpses of a “normal”
childhood, one in which both of them may actually one day possess a true
friend. I am so grateful for that expanded vista, for the possibilities
inherent in those translucent frames.
Finally, Zach addresses the foundation, shoring up the edges with his
tiny fingers immersed in solvent, asking me if his careful
ministrations are correct. I smile and tell him his house is lovely, as
in its own way, is our own. Our foundation has also been conceived in
patience, moored in consistency, cemented in love. It’s not seamless,
and there will always be cracks. But it will continue to stand.
It will always stand.
And my wish for all of you in every year to come, is that your own
house, no matter how it’s constructed or what form it takes, will
continue to stand, wind and weather-battered, as magnificently strong as
(I’d like to take just a quick moment to extend my immense gratitude
to all of my readers this year. I am so appreciative of the time taken both to read my
missives and to comment on them, and your continued loyalty. Happy holidays to all!)
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December 12, 2016
Recently I penned a piece about my youngest son Zach, who is on the milder end of the spectrum. I wrote about how he now is only on a 504 plan, not in an inclusion classroom, and doing well both academically and socially. I spoke about the many things that contributed to this outcome, the teachers, therapists, and love that went into helping our boy be as happy and independent as he can possibly be. I explained that my delight had not to do with his ability to engage in the trappings of a more neurotypical life, but that he was now able to participate in so many of the activities he always wanted to be a part of, and that this year more than any other, he was happy. I had many wonderful and supportive comments after the piece was published, and of course, as always, there was one private comment which really stuck with me.
“Can you tell me how you got him there?”
Frankly, it would be fun to take all the credit. I could tell you about the hours of therapy I did with him before school started, the gluten-free casein-free diet (fake cheese is an abomination) we still strictly adhere to, the outside therapies and activities we’ve taken him to to allow him to stretch and grow. I could tell you about the eight million hours I spent reading on the internet and the books I devoured to help him in any way I could. I could wax on about the many times I reminded myself that Zach’s autism is different than Justin’s, and not to be wedded to anything we’d tried with our eldest, but to tailor our treatments to our youngest son’s needs.
I could tell you about the scrapbooks I made to help him talk again, but that would just be overkill.
The truth is I have two kids on the spectrum, one severe, one mild (I hate all the labels so I’m sticking with these). I will be perfectly honest with you and share that I did much more for Justin than I did for Zach, and yet my eldest is much more involved and my youngest could be president.
He’s on student council this year. He’s considering a run.
Justin was diagnosed at the tender age of seventeen months, which back in 2004 was basically unheard of. At the time insurance did not pay for ABA services, and Early Intervention in Virginia was a joke, so since I knew that it would be almost two more years until he went to school I hunkered down and did the therapy myself. I cranked out thirty weekly ABA hours with a mostly compliant kid until we moved to New Jersey eighteen months later and walked gratefully into eighty hours a month of therapy (compared to Virginia’s eight). Justin was an only child all that time, and I am not kidding when I tell you I took every “teachable moment” as gospel.
As Erin Brockovitch would say, I was really quite tired.
Ten years later my teen is (mostly) happy, does beautifully in school, and when not engaged in severe OCD-behavior is a delight and a joy. He will never drive, go to college, or live independently despite the eighty million hours of therapy and the hard work of everyone who helped us from his toddler years on. He has a few words now but mostly communicates with a device, and the words he has are hard to understand. He’s progressed to the best of his ability, and I am confident he will to continue to do so.
And just because he’s not following his brother’s life trajectory it doesn’t mean we’ve failed him.
I will go to my dying day wishing Justin would be able to take care of himself after his parents’ death. Now that he’s so happy it is probably the one thing left that keeps me up nights. But I know that all of us, him especially, have done the best we could to enable him to be his most independent self.
Honestly I can’t tell you why one of my kids will need lifetime care and the other is not even classified as a special education student anymore, but I can tell you this. We can throw therapy and diets and medications and boundless love at our kids, and all of it will help. In the end however it’s really up to them the progress they make, what their long-term life trajectory will look like (and for any parents starting out, you absolutely cannot know that when they’re three).
The truth is (and this is true of any kid) so much of what they’re able to achieve is up to them, and that includes both ability and motivation, which I can contest from a dozen years in the classroom are equally important. They will do what they can, and accepting that has brought me a great deal of peace over the years.
And at the end of the day, I’m sure we could all use some peace.
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December 5, 2016
An open letter to Zach’s teachers, specialists, paras, principals, child study teams (and the gazillion other professionals who helped make him who he is today),
I’ve just finished my bazillionth conference about my boy, the report card crisp and unblemished in my hand as we discuss his progress, a grin on my face reflecting how well it’s going. I didn’t plan on any surprises dear fourth grade teacher because your communication skills are superlative (which greatly reduces the anxiety of this fourth grade mom), but you never know. The stakes are higher this year because we made a big change in Zach’s educational trajectory in the spring. You see, for the last six months he has only had a 504 plan (what I call an IEP light), with accommodations frankly any good educator could carry out in his or her sleep.
And the glory of it is, his present educator, like her predecessors before her, has got this cold.
As a former fourth grade teacher myself I always said third grade was a huge bridge year, and this rang true for Zach, who made leaps and bounds in his ten month third grade stint. The change in his maturity level from September to June seemed miraculous (and yes, much credit goes to the third grade teacher who “got him”), so much so that a little voice told me it was time to shake things up a bit, to really think about whether or not this kid needed a full blown IEP and an inclusion classroom. Of course this contemplation required anxious analyzation on my part, with the requisite “asking of opinion” of every major player in Zach’s educational repertoire, my husband, and my mom with her thirty years of special education expertise.
Frankly I would have consulted a fortune teller if I thought it would do any good.
In true A-type mom fashion I was initially just scared. Scared to let go of the few ancillary services he received knowing they might not be reinstalled if I made a mistake. Scared this would be an unnecessary disaster I brought down on both our heads that could have been averted. Scared he would not be in an inclusion classroom the following year and we’d find he really did need that second teacher.
Scared if I didn’t make this move now I’d be holding him back.
But last spring after a lot of hand holding from his equally wonderful third grade teacher (she got me too) we took the plunge, signed the documents, and I began to hold my breath. We skated through the rest of the year as I knew we would, cognizant of the fact that the true test would come in September, where a zippy fifteen minute 504 plan meeting would replace the round table IEP discussion of my son’s education.
You will hate me, but mostly I look forward to IEP meetings. With two kids on the spectrum, I’ve been to a lot of them. I know everybody’s kids’ names.
So now I’m here sitting in this fairly small chair listening to you tell me how much you like my boy, how even in under three months he’s made progress. I listen quietly as you tell me even though most of the kids in this non-inclusion class are new to him that he’s made friends, gets along with kids when he works in a group, is nailing his academics. You tell me you appreciate his unique world view, his kindness to others, his enthusiasm for learning. You like him, you really like him.
And slowly, I begin to let go of my six month inhale, because nowhere in our dialogue do the words “you made a mistake” surface.
I’m proud of my boy, but not because he’s no longer classified. My other son will nurse various IEPs until he’s twenty-one, and I have no issue with that, am appreciative for the law which entitles him to have them. No, I’m proud of Zach because that kid is damned determined- when he wants something he’s willing to work for it, to break down a goal into small steps until said goal is accomplished. He wants so many things- friends, to participate in a zillion activities, a cell phone (not happening any time soon), and the first two he has in spades, for which I am forever grateful.
And I’m also grateful to all of you. I’m grateful for every teacher, para, specialist, and child study team member he’s had from the tender age of three until now who worked tirelessly to help him become his best self, and tolerated me in the bargain. There are many factors that weigh in on Zach’s success and happiness- his family, his friends, and Minecraft among others. But he literally would not be here today without the women (and a few men) who “got” my boy, reveled in his personality, and never accepted anything less than his best.
There will be hugs and praise, rewards given (food and technology, my son has his priorities), and a mountain of laundry to attack.
There always seems to be laundry to attack.
I will share the good news with the husband, the grandma, and the fifty other people I consulted. I will reward myself with more chocolate. I will hug that damn fantastic kid yet one more time.
And I will exhale.
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