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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October 24, 2016
He slides onto the chair with me, smelling sweetly of baby shampoo, an incandescent grin lighting his face. My boy knows what’s coming in his bedtime ritual which he adores, a ritual which will include an Eric Carle book, songs his mother will butcher, and what I generally call the “Justin/Mama lovefest” which precedes his exuberant dive into his bed on a nightly basis.
We know how to adhere to ritual chez McCafferty.
Justin’s been using his words more frequently lately, and for the past few weeks I’ve been letting him read parts of his nighttime book to me, which has been a thrill for both of us. The kid looks at me with pride after reading every single syllable, and trust me, after waiting more than a decade for mere coherent sounds to emerge from him, that gaze is returned.
Those words are pure gold.
We wrap up the first part of the ritual and Justin snuggles more securely into me (he’s almost my size now, I’m wondering how we’ll do this when he’s an adult), and I embark on my own fractured versions of his made-up baby song, “Over the Rainbow,” and “Silent Night,” which for some reason I began singing to him years ago and haven’t deviated from our playlist since.
I start my rendition of “his song” that I made up in desperation almost thirteen years ago to try to stop him from crying (it didn’t work), then stop as a brainstorm occurs in my withered synapses (I don’t have them that frequently anymore, so they must be honored).
If Justin can read to me, why couldn’t he sing to me too?
I start over with his baby song, then stop when we get to the “mama/dada” part and look at him expectantly. He stares back at me with a grin on his face, silent. I urge him to “sing Justin,” and he looks at me one more time, and damned if he doesn’t fill in the blanks.
Intraverbals at their very best.
I know that some of the words in their entirety will be beyond him, so with some of them I throw him the first syllable(s)- the “rain” in “rainbow,” the “lulla” in “lullabye,” and he gleefully fills in the rest. There are a great deal of consonants in the last words of every line of “Silent Night,” but he struggles mightily with his task, and with a little help he makes it through.
He’s tired tonight, so as soon as our singfest is over he kisses me and heads over to his bed, waiting to be tucked in. His bed is white, and I have a flashback to another piece of white furniture which housed him as a baby. He used to pull himself up with that one and often flash his toothy grin, and I can recall wishing desperately that we’d find some way for him to communicate which didn’t require pinching or crying.
Now, a dozen years and a lifetime later, my boy is singing to me.
And I can’t wait to do it again tomorrow.
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October 5, 2016
Dear Much Younger Me,
I see you, with your white-knuckled grip on your eldest son’s stroller. I watch you struggle to maintain his diaper bag on your arm and not lose your grip on the incomplete, badly-stapled articles with the word “autism” in the title that your utterly unempathetic pediatrician just thrust into your hand as he wished you an ascerbic “good luck.” I witness the white hot fear that’s been washing over you in waves take up a permanent residence in your heart.
I see you.
I watch as you wonder what could have possibly changed between your last visit a month prior where said doctor was not overly concerned about your toddler’s development and today, rage competing with denial competing with acceptance competing with overwhelming sadness as you trudge to your waiting SUV to call your husband at work.
I see your confusion.
I see you as you tell relatives, friends, neighbors about his eventual diagnosis, cringing every time a well-meaning soul implies he’s so young, he’ll grow out of it, he’ll be okay. I watch as you try to figure out what okay really means, realizing your definition is going to radically change.
I see your sad heart.
I watch as you go through Virginia’s Early Intervention process and witness your disbelief as you realize they will only offer you eight hours a month of therapy, no ABA, despite having a formal diagnosis. I see you realize that since your insurance won’t cover ABA you will have to deliver his services, will attempt to do at least thirty hours a week with him for at least a year until your beautiful boy is eligible for a pre-school program. I witness you process what this will mean for your relationship with your son, your ability to work, your life.
I see your rage.
I see you and your husband less than a year later realizing the pre-school program offered by your county is not enough, that Justin will never get the one-on-one aide he needs both for his academics and for his need to be engaged. I watch as you process this means you will have to move back to Jersey, and despite leaving most of your friends and putting an end to your now on- hiatus- career, you are grateful you have the choice.
I see hope spark for the first time since his diagnosis.
I watch as you slowly comprehend your boy, despite everyone’s love and work and patience, will not shift to the milder end of the spectrum, will instead dwell on the more severe end for life. I see you struggle to change, not diminish (not ever) your expectations of what his life will be. I watch you refuse to regard this altered life plan with sadness if only he will sleep/eat/not aggress/not suffer/please oh please be happy. I witness your bargain with the universe that those glimpses of transcendent joy that keep both of you going will become the norm, not the anomaly.
I see that you are very tired.
I see your hope spark again for your second baby, conceived the old-fashioned way rather than a test tube in a sterile lab in Virginia. I watch as you plead with the powers that be that he’ll end up in the 90% of siblings who don’t have the neurological disorder, not because you view an alternative neurology as a bad thing, but because you don’t want to watch him suffer too. I watch you wonder if your marriage can handle this again if lightning strikes twice.
I see both your fear, and your joy.
I watch as your second son develops typically for eighteen months, and although you know he’s not out of the woods yet, I see you tentatively explore the possibility of baseball games, playdates, a first crush. I witness you and your husband reel in despair after two back-to-back illnesses seem to claim your child, leaving a non-verbal, cranky, not-present child in their wake. I watch as your husband clings to hope and you spiral into despair, dwell there for months. I see hope kindled in you both as your son slowly reemerges changed, but healthy, happy, and making progress every day.
I see you come out of the abyss.
I watch as together you conquer hurdle after hurdle for years, immersing yourself totally in their world, fighting for a toehold on every skill. I see you doubt your eldest will ever be potty-trained, eat anything other than carbs, sleep through the night. I watch your all-encompassing relief as he eventually does all of these things, all in his own time. I witness your exuberant joy as your youngest regains his words, makes attempts at social contact, thrives in his local pre-school program. I watch as you put your life completely on hold to make every second, every interaction with them, count.
I see you lose yourself.
I see that fear that took over your heart loosen its clutches, as your eldest, despite some relapses with aggression, emerges into the affectionate, kind, happy child you knew was in there all along. I watch as your second son challenges you with his high energy level (if only you could borrow some) but eventually mainstreams, has friends, makes mostly good behavioral choices with ease. I witness your forays into your own social world, your reduced anxiety levels, your reemerging smile. I watch you actually have fun.
I see you find yourself again.
I see setbacks, and struggles. I see accomplishments, and triumphs. I witness your rebonding with your husband, as you embark on some of the trappings of a more “normal existence,” whatever that is. I watch as you integrate autism into the fabric of your life, a patch (or two or three) on your quilt, but not the whole quilt, not anymore. I see you begin to breathe.
I see you, forever altered, indestructible, happy.
I see you.
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October 4, 2016
He came home from his first day of school with a swollen lip and an inflamed gum, and I thanked the universe that this was one of his pediatrician’s “late days” and I’d be able to get him in to see his doctor. A short visit later we had a scrip for an antibiotic in hand, with the assurance that it might take a few days to see the swelling go down, and that everything would be all right (our ped is very nurturing).
Except, it wasn’t.
The stars aligned, and the next day I happened to have a cleaning with the dentist I share with Justin, who after I told my story of the lip and inflamed gum around the capped tooth he broke over a year ago looked at me and said “Kim, I am 99% certain he’ll need a root canal, and he’s probably in pain.”
Since I was being flossed at the time I didn’t have a vocal response, but I sure thought one, and trust me it was only four letters long.
Justin requires being sedated for extreme dental procedures and x-rays so fortunately getting him in to see his secondary dentist wasn’t difficult, and after racing through two counties several hours later my boy was evaluated, and the practitioner verified my dentist’s claim.
The dentist who checked him out wasn’t the lovely man who’d put on his cap months ago, but he seemed decent, didn’t bat an eye when I told him an x-ray wasn’t happening today and he’d have to make the diagnosis cold. As he explained the coming procedure he sent the assistant out to get me a date and time, and I listened carefully to him (actually understood a lot of it, maybe I missed my calling) and waited for the date when I could give my boy some relief.
She came back with September 23rd, two-and-a-half weeks later. Or, I could bring him back two hours later and they’d do a root canal on my severely autistic child with him fully conscious, using only Novacaine.
People, I kid you not.
Perhaps it was the thought of my kid being in pain for most of September, or the fact that he wasn’t eating anything. Perhaps it was the oh-so-indifferent look on the dentist’s face that sent me over the edge, or the assistant avoiding eye contact with me. Perhaps it was because in the last two weeks we’ve had Justin home for ten days, the stomach virus, the flu, and the death of our washer/dryer within hours of each other (apparently they mate for life like swans).
Or if I’m being totally honest perhaps it was the thought of an entire extra week of summer with no “Kim time”.
I’m not sure what tipped me over, but I’m guessing it was all of the above.
And quite honestly, I just lost it.
I played the autism card (and the severe autism card at that). I told them he’d starve to death. I reminded him the kid can’t talk and tell us he’s in pain, and that I guessed even liberal doses of Tylenol wouldn’t work for two weeks. Truly, I went batshit crazy as I tried to hold my thirteen-year-old who’s almost as tall as me now in their damn reclining chair so he wouldn’t run out and rearrange their office (although I wanted him too).
And wouldn’t you know, the assistant ran like hell out of the room and came back literally three minutes later with a time and date less than 48 hours away.
I am not indifferent to the plight of the patient who got bumped. I’m assuming it wasn’t an emergency procedure (um, like my son’s), but I’m sure it’s an inconvenience to reschedule, and if you’re out there reading this, I’m sorry. Chez McCafferty rescheduling is one of my worst nightmares, and truly, I regret you got the short end of the stick.
Perhaps it will be some solace to you that at least my kid can eat now.
The upshot is we had a different dentist do the procedure two days later who was fabulous (he gave me his personal cell number and told me to call him over the weekend(!) if I had any questions), and by Saturday afternoon my boy was his old self, and frankly pretty bored of being home.
At this point I can say I shared that sentiment.
I have to say usually I shy away from conflict when I can. Perhaps it’s being the oldest, but I’m generally a peace-maker, and still think people should at least entertain my point- of view (I know, I’m insane) when I have a disagreement with someone. I realized as I drove Justin home from the dentist that day that I haven’t had a good knockdown, drag-out, autism hissy in years.
And ladies and gentlemen, it felt good.
Over the years I’ve had to let it rip on doctors, therapists, sitters, Early Intervention providers, and just generally ignorant people at large in four different states (and a commonwealth!), but we now have a posse of good people and live in a town where for the most part people get it, so my skills have lain dormant for a while.
But I have to tell you, it was great to know they’re still there.
He will need further procedures on this tooth in the decades to come, and when they mentioned his fifties and I remembered his father and I might not be there for that one of course the old dread of his life post ours reared its ugly head. I mentally turned it around and hoped that a tooth issue would be one of the worst health problems he’ll face, which I know is wishful thinking on my part but I had to drive, so I banished it all to the back of my brain.
But for now, my son is his smiling, loving, incandescent self. There are so many things I can’t make happen for him, but I could fix this.
And his old mom’s still got some spunk in her yet.
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September 26, 2016
A few weeks ago Autism Speaks linked my blog to their Facebook page promoting a piece I’d written to Justin about his future residential choices. As usual there were the typical lovely responses, the not-so-lovely responses, and the downright ugly (see my piece here). I usually let the comments wash over me (or I wash them down with chocolate) but one really stuck with me. The responder wrote, “I stop reading comments that begin with ‘my high-functioning.’” As the mom of a child considered “low-functioning” (although I hate the high and low labels,) I so get it.
But I’m also the mom of a child considered high-functioning, and I so get parents’ angst on that one too.
My youngest has regressive autism, developing typically until he was eighteen months old (believe me, I harassed his pediatrician and did the CARS and M-CHAT on him compulsively, he showed no signs of the disorder). During his eighteenth month he had two back-to-back illnesses, after which he lost all his words, developed a slight rash all over his body, and morphed into a child we barely knew. Gone were the smiles, the laughter, the joy that defined our toddler, leaving a non-verbal and unhappy child in its wake.
We immediately put him on the gluten/casein free diet (the one that had seemingly no effect on his older brother), and over a period of months Zach regained a great deal of his personality, the rash disappeared, and the words started to come back. Yes, he was still autistic- his obsession with Thomas the Train and his rigidity in all things transitional let us know we still had a different child from the easy-going one we’d raised for a year-and-a-half. However, he never showed symptoms as severe as his elder brother, and a year after his diagnosis we had real hope he’d eventually mainstream in school and live a life resembling that of his parents.
Three years after receiving the autism label he did just that, mainstreaming part of his kindergarten day in a “typical” classroom, and we felt confident the sky would be the limit for this child.
But the truth is statistics tell a different story, one where only 30% of high-functioning autistic adults attend college, and even less are gainfully employed.
As great as Zach is doing, I know we’re not out of the woods yet.
The truth is I’ve never been much concerned with labels (except the ones on my shoes, I have a weakness). Even when Justin, our severely autistic child, was little, I never really hoped he’d shed his diagnosis, for I believe in this family my kids truly do have a genetic predisposition (hell, they’re all autistic). I did deeply wish for his independence as I do for Zach’s, and I admit as the years passed I knew I had to let that dream go for Justin. It’s not because he doesn’t really talk- there are plenty of non-verbal autistic adults who communicate in different ways who care for themselves. It’s more that while he can do a lot for himself he still needs help or supervision, and mostly, his interests never made it out of the toddler era even though he’s a teen (Baby Einstein still reigns supreme in this household). Despite well-wishers on my last Autism Speaks post, my eldest boy will never live independently. And while I of course worry about both boys’ futures, this is an extra anxiety I mostly keep shelved so I can function.
I still haven’t figured out how to care for him from beyond the grave. Any suggestions would be deeply welcomed.
The truth is I worry almost as much about Zach and his future. He still has his challenges, and although I am forever grateful he can communicate all his thoughts and feelings (boy can he!) we still work hard for him to be in that 30% who attend college and are gainfully employed. My husband and I are anticipating having both boys living with us after high school (hell, many of my friends and relatives still have their kids home years after college and they’re typical), given that the economy isn’t great and the opportunities seem even more limited than when my husband and I graduated.
I’m pretty sure long periods of “Kim time” will have to wait.
I admit I purposely have cultivated friendships with moms of high-functioning autistic children as well as low-functioning autistic children, as their needs at this time are so different and I personally need people who “get it.” It helps me to have friends who get my anxiety about my youngest having friends, as well as having people in my life who get that when I say Justin isn’t sleeping I’m really saying I’m afraid it’s permanent (usually they can talk me down from the ledge).
The reality is I think we should stop focusing so much on high and low labels, work toward as much independence as possible for our kids, and get that as parents we all worry about what will happen to them no matter where they fall on the spectrum.
Believe me, what happens to Justin after I die is an ever-present fear. But the little one has given me my share of sleepless nights too.
No matter where our kids fall on the spectrum it’s still hard and wonderful and heartbreaking, and each parent brings different levels of coping to the table too. I hate to see our community divided over this, as it’s so apparent we need to come together and support one another as much as we can.
And as a mom of two kids on opposite ends of this autism spectrum journey, I plan to do just that.
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