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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November 28, 2016
Remember how I said I was doing my best to live in the present, enjoy the successes and triumphs of my children, not project our current struggles into the future, and, in general, “just be?”
To be fair, I only lied for about an hour, as I made my way home from a workshop with my head spinning about possibilities for Justin’s future, a future I’ve begun to tentatively explore with a very tempered enthusiasm, and quite honestly, some confusion. I’m exploring funding, living arrangements, and day programs, and I’ve gotten my hands on some good literature that I’ve been attempting to decipher. I remain grateful I have friends on the “other side” of twenty-one who I know will help me decode the terms, aware all along that the “abyss” as some parents have termed it is for us eight years away, and a lot can happen in eight years.
When I think of all that’s happened since Justin turned five, I can say with absolute certainty that a great deal can happen in eight years.
For the past six months or so I’ve been delving into Justin’s possible future opportunities, considering living arrangements (which I imagine will be the trickiest of the residential/job/day program trifecta), contemplating whether or not he could work at a job a few hours a day, and researching possible programs where he could spend at least six hours daily, hopefully at times engaged with the community. Last week my head was spinning in a good way as I had heard about several day programs that might possibly be right for Justin, programs with good reputations, activities out in the real world, places that don’t sound like “warehouses” for disabled people. I am very interested in these programs as one thing I do know about Justin is that he is happier when he’s out of the house for long periods- his OCD is more subdued, he’ll engage in more productive activities when he is at home, and he’s just plain happier.
With Justin, or hell any child on the spectrum, happy is key.
I have friends who are doing all sorts of programs with their kids. One friend has their son in a day program he calls “college.” One friend with two adult children on the more severe end of the spectrum has one out of the house most of the day in so many fabulous activities that I’m jealous, and one who’s more of a homebody has support daily in his house. The trick with Justin will be to find a program he will actually enjoy, because if he doesn’t he will be standing at the front door of the establishment waiting for his transportation to come pick him up, saying “Mama” and letting his caregivers know in no uncertain terms that he wants to go home.
And the thing is, eventually my husband and I will die or no longer be able to care for him. He simply can’t be home all day every day forever. He needs to continue to get out into the world. And I’ve got to figure out a way to do that, both for him, and for us.
I have a rich fantasy life when I run (it’s where I do my best thinking), and to be honest with you, during my little three mile stints I’ve fashioned the perfect post-twenty-one world for the McCafferty family. In my fantasy world our family and a number of like-minded souls form a compound like the Kennedys, where our children all live in one residence and their parents live nearby (yes, it’s resort-like, and it’s a fantasy people). Each adult autistic individual has 24/7 care. Our compound includes an indoor/outdoor swimming pool, a movie theater, bowling (why the hell not?), a sensory gym, a fitness room, a large media center with any type of technology our kids could need, and last, a spa (okay, that’s for me, why not throw in a winery while I’m at it). We can see our kids and take them out whenever we want, but we have adult space for ourselves as well. When parents want to travel, we all pitch in and keep an eye on each other’s kids.
Okay, it sounds a little like a commune. But in a good way.
Clearly, short of winning the lottery (I try!) I don’t envision my little compound coming to fruition. But I’ve begun to feel I might be able to piece together a patchwork of a life that my boy will enjoy, and one that stretches him a little too.
And for once, dabbling in the future feels good.
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November 21, 2016
Every year around this time I try to do a post where I list all the things I’m thankful for, then admonish myself to reflect on these things more often, then forget to do that, then eat more chocolate to compensate.
I am, as always, a work in progress.
I am delighted to say that even in the midst of some challenging times with Justin I’ve found some things I’m truly grateful for, and am not just paying lip service to Thanksgiving.
I hope all of you have a wonderful holiday. For some of you I know this day is more about stress than fun- my hope for you is that at least you can find several moments of joy, some great food (if you have to escape early make sure your families pack up some pie for you), and at least a bit of peace.
And if all else fails, remember there is always wine.
Here are my reasons for gratitude this holiday:
-Despite our challenges at home, both boys are doing great in school. Honestly glad Justin saves it for us
-Grateful for my family and friends, who just get it
-Am grateful for other bloggers’ perspectives, both autistic and NT
-Profoundly grateful for the boys’ compassionate and understanding teachers and paras
-Grateful for Zach’s incredibly patient baseball coach
-Thankful for the community who helps my kids (more than a mere village I promise)
-Grateful I married the right guy the first time (God it makes things easier)
-Profoundly grateful for my readers and all their encouraging comments
-As always, thankful for my loves, chocolate and wine
-Grateful for Justin’s words and our sing-alongs!
-Thankful I still (albeit briefly) manage to make time to revel in every one of their accomplishments
– Grateful for my boys, my hubbie, and our life together
Happiest of Thanksgivings to all!
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November 14, 2016
Today, my very soul is tired.
It’s 9:43 on the first day of NJEA (or winter break appetizer as I like to call it), and already I’m exhausted and simply heartbroken as I watch Justin suffer. I should preface this with the OCD we’d battled off and on for the past year-and-a-half had subsided greatly over the past three months with a medication change, and for a time life was much easier chez McCafferty. Justin was back to his happy self, and after three months of improvement with no setbacks brought us a more harmonious household, I let down my guard and actually started to think that things might go back to our “normal.”
It’s my fault. I got cocky with my “hope thing.” Shame on me.
Things were pretty good until around Halloween, when my son’s obsession with moving, hiding, and trying to defy gravity with the way he attempts to angle objects kicked back in. Jeff and I made a thousand excuses as to why this day was just an anomaly (“he’s hungry/tired/hormonal/it’s a full moon/it’s an election year), but after a few days we had to acknowledge the OCD was back, and began damage control.
Fortunately Justin’s neuroped responds to emails (which is why I’ll drive an hour-and-a-half to see him) and we quickly came up with a plan which required of course ten thousand phone calls (only a slight exaggeration) and my own perseveration that I’d forget one part of the plan. We managed to accomplish adding a dose at school (which initially had made him exhausted and spacey, so fingers were crossed this time that since he’s acclimated to the drug it would be different), and then, as always with med changes, we sat back and waited.
Not very patiently I might add.
In case you’re thinking OCD might not really be all that bad compared to autism, we actually find that this is the more challenging in some ways of Justin’s two diagnoses. When not immersed in the disorder Justin is one happy guy, excited to watch movies and play on our computer while home. He’s thrilled to leave the house even for a short errand, and one of his biggest demands is for kisses and hugs throughout the day. Frankly, when in this mode, he is completely delightful.
When his OCD has reared its ugly head, nothing in our house remains sacred. This morning I had a ten minute battle with him about why he couldn’t turn a five foot lamp upside down and place it in the middle of our kitchen. For some reason our lazy boy chair had to be upside too or things wouldn’t be right with our world, and half of our kitchen drainer has disappeared.
It was about two hours before I could even take a potty break. When he’s like this, his care is the same as watching a toddler. The problem is, this toddler is ninety pounds and almost as tall as I am and not the least bit happy when I interfere.
In the midst of all this chaos while I’m ignoring my other son and the twelve loads of laundry I should be folding I still try to summon my happy place, reminding myself of how much we’ve conquered over the years, that the med did work for a while and maybe he just needs more, and when I’m really desperate, that it’s only seventy-two hours before he returns to school and seven until I can reasonably have a glass of wine.
Yup, today I went there.
Of course all the time I’m trying to dwell in “happy land” that pernicious voice of doom is also expressing its needs, badgering me with “more meds might not help/ this may not just be a puberty thing/ when you’re dead no one will put up with this in a group home,” which of course propels me to the fridge (it being before 5:00) to my chocolate stash.
Really, Justin needs to work through this so I don’t gain twenty pounds. I have my priorities.
The truth is, today I’m tired, my people. As fifty nears I find I’m sloughing off that youthful enthusiasm I had about conquering new hurdles (it’s a teacher thing, I couldn’t help myself), and honestly, I just want this crap to stop. I want the objects in my house to remain where they are. I want to be able to help Zach figure out the crazy way they do math these days and not be rescuing said objects from certain gravitational doom. I want to be able to find my car keys. I’d like to solve the mystery of my missing drainer.
Hell, I’d give someone a million bucks just to tell me why the damn drainer.
And as I head over to rescue our desk lamp from being thrown behind our couch, I know all I can do is wait.
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November 7, 2016
I struggle out of sleep, not knowing what woke me up but for once knowing it’s not my own body. I lie still for a few moments, and then I hear a thud, and I’m instantly awake and throwing back the covers.
Justin’s OCD is back. He’s quite loudly rearranging his room at 6:10 in the morning, and there aren’t words to explain how much I don’t want his brother up at this hour.
That means I have to move fast. His rocking chair is next.
My eldest son has a dual diagnosis of autism and OCD. The only reason he really has a secondary diagnosis is due to the extreme level of perseveration he will sometimes go to, an intensity which transcends his primary diagnosis. Justin’s OCD has manifested in many diverse and interesting ways. Sometimes it’s rearranging furniture, which has at times improved the look of a room. During one particularly gruesome period he hid things, including shoes and my purse, which half the time I didn’t even know they were missing until I desperately needed them (at almost fifty I depend upon my visual cues). This last arc, which has lasted a year-and-a-half despite behavioral interventions and tinkering with his medications, was relieved for a few months when we seemed to hit the right one, and our happy boy came back.
And unfortunately, his penchant for angling and arranging has returned in half force.
The first piece of good news is that we have loads of room to increase his new medication, and since it’s been effective for the last few months I have hope that this change will help him. In case you’re thinking that moving a few things doesn’t sound so bad, I have to share with you that truly, it is. Justin not only wants to rearrange things, he wants to angle items in such a way as to defy gravity, and when he can’t transcend the laws of physics he becomes very upset and agitated, refusing to engage in more acceptable pursuits (or hell, sometimes even get on the bus).
And in those moments, I am pissed as hell at autism or OCD or whatever neurological disconnect is causing my boy so much pain.
The second piece of good news relates to me, or specifically how I am handling this unwelcome resurgence. Even a few years ago I would have despaired that we wouldn’t be able to help him, been sent to the abyss where he suffers and hell, frankly we all suffer along with him.
But over the last few years as I’ve seen problem after problem rectified with Justin, I’ve learned how to keep a little piece of hope alive.
Over the past thirteen years we’ve conquered potty training and insomnia. We’ve gotten him out of a hunger strike, and later on taught him to like lettuce (my greatest lifetime achievement) and reduced his caloric intake so he could lose a few of those carb pounds. We’ve (mostly) quelled his aggression, and worked out ways to stay at relatives’ houses and outing for more than forty-two consecutive minutes.
We’ve been quite busy chez McCafferty.
And what I’m able to do now that I wasn’t able to do a few years ago is draw upon those accomplishments and remember that many things are not permanent with Justin, that just like typically developing children he will grow out of some things (learning to sleep remains my personal favorite) and do it in his own sweet time.
This optimism doesn’t necessarily mean we’ll be able to conquer this latest challenge with our boy. Increasing the medication might not work, or the side effects of a higher dose might counteract the benefits.
As they say, it ain’t over til it’s over.
But something I’ve learned over the past decade plus with autism (and perhaps parenting in general) is that a good portion of the battle is my attitude. If I can summon up some modicum of optimism (and I will share with you all that this doesn’t happened in the middle of the night, I have my limits) I’m often more open to finding strategies to help my kids, and even if those strategies don’t end the issue, they can often alleviate it.
And frankly, being in a bad mood all the time just sucks. This is the happier option.
Know that I have my moments and everything I’ve just written gets thrown out the window on a day where I struggle to get my son out of his room so he can (thank you God!) go to school, go to the bathroom, or eat. In those moments I try to summon my “teacher patience” which is often more powerful than my “parent patience,” take a deep breath, and remind myself that he’s never completely refused to get on the bus despite whatever feng shui endeavor he’s attempting.
In other words, I’ve gotten really good over the years at deep breathing.
And my message for anyone just starting out with an autism diagnosis, or anyone at a particularly difficult juncture with the disorder, just remember this. No one can promise you it will get better. But the resources out there for helping our kids are so much better than they were even a decade ago that it’s worth a shot at carrying that hope with you for a while. And while you’re trying to help your kid, make sure you take care of yourself too.
I’ll say it again. Make sure you take care of yourself too. No one will do it for you. Try to recall what you’ve already conquered. Ask for help from anyone and everyone. Don’t give up.
And remember to breathe.
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October 31, 2016
Twelve years ago this month I walked into our pediatrician’s office with my then seventeen-month-old son in tow hoping for a prescription for reflux; I walked out shaking, crushed by our doctor’s callousness, and clutching four misstapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand, and left the room.
He wasn’t our pediatrician much longer.
I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription which would at least let me help him with something that I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.
As they say on “Game of Thrones,” I knew nothing Kim McCafferty.
The year was 2004, when Jenny McCarthy and “recovery” were hot in autism land. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.
There were parents claiming the only positive outcome of this diagnosis could be a cure that led to recovery.
There were autistic advocates and parents of autistic children claiming an alternative neurology cannot, nor should not, be cured.
There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk, and should always be employed.
There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.
There were parents telling me not to vaccinate.
There were physicians telling me I’d better vaccinate.
There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.
There were teachers sharing with me that despite the push for it mainstreaming might not be the most important goal regarding my son’s future education.
As I look over my list, I realize not all that much has changed in a dozen years.
I did my best by Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders, and his religious adherence to having things a certain way that would ultimately earn him a dual diagnosis of OCD and autism. My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.
Ultimately what I clung to to get through it all were my choices regarding Justin’s treatment, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.
I displayed my own rigid behavior regarding that information. According to studies I’d read sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were severely delayed. I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.
And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions I would have done my son far more harm than good.
After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!) I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then twenty-two-month old might actually end up with a way to communicate his needs other than by mostly crying.
If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.
I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of three I wanted him to have opportunities to engage with neurotypical peers because I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.
Okay, that last is still an important goal.
After four years in two different public school districts it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight week summer program.
I know, we’re spoiled.
I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.
And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.”
But as with many things in life I’m still a work in progress, and keeping an open mind is one goal I plan to keep.
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