October 24, 2016

Sing, Sing a Song

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 1:36 pm by autismmommytherapist


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 18, 2016

RFH Woes

Posted in AMT's Faves tagged , , , , , at 1:40 pm by autismmommytherapist

I saw the post on Facebook and it made my breath catch in my throat, as I stood on line for “Glow” at Monmouth Racetrack this past weekend (locals, it’s fabulous!) and tried to mitigate my son’s impatience for standing in any line, ever. I noticed the title “Popular Homecoming Tradition Axed at Monmouth County School,” and perhaps my Pisces powers kicked in because I just knew it was about my alma mater, Rumson-Fair Haven Regional High School.

And somehow I knew the reason for eliminating a tradition that’s lasted for decades wouldn’t be a good one.

The article was brief, and later I got to see a video from News 12 describing what happened. The reporter said the voting of the homecoming king and queen at my high school was scuttled due to rumors going around that some students were going to vote for two people who “would ultimately be the subject of ridicule.”

Lovely. Welcome to Bullying Prevention Awareness Month.

Having only attended one high school I can honestly say I can’t compare RFH to other institutions, however I do remember we had a particularly “clique-y class,” which I believe my brethren ultimately revolted against by voting two technically “non-popular” people (who happened to be two of the nicest people in our class) to the throne our senior year. I racked my brain for outright bullying that transpired when I was there and couldn’t remember anything (but then again I was focused on boys and passing physics, so I probably missed a lot).

I know from reading some of the comments on Facebook that overt verbal bullying did occur, but the not-so-subtle kind happened too. There was the “no eye contact/ignore in the halls/ not deign to speak to people in the bathroom” variety, which having come from a small elementary school where there were perhaps five self-proclaimed “popular people” who were generally nice to everyone was a bit of a shock to me. I had friends in all different groups but basically hung with the keep our heads down/ go to a good college crew, found the majority of the elitism stupid and just went about my business, and simply stressed about class rank, grades, (those boys), and had fun.

Yes, I liked high school. Don’t hate me.

RFH is certainly not the only place I’ve been witness to such exclusionary tactics in my life. I taught 4th, 5th and 6th grade in DC and Virginia for a dozen years, and saw cruelty that made me question my desire to reproduce. My co-workers and I tried to quell as much of the bullying as possible and were generally able to do this in our classrooms, but we couldn’t have eyes and ears every second our students were in the bathroom, walking to lunch, on the playground, or on the bus. I began to identify subsets of cruelty- retaliatory for a perceived wrong, acting out because something sucks in their lives, and my personal favorite, let’s destroy this kid just because it feels good. I found that boys in general were easier to deal with. Over the years I found often just threatening to make a student’s parents miss work to come in and meet with me, the principal and their wayward son often deterred the boys, and half the time the two squabbling students would become friends.

The girls were tougher. When you teach upper elementary students you are often able to “float” around the classroom as kids work independently on projects, and this is where I caught many of my girls in the act. At the time I was much younger and still able to see and hear far away (good thing I don’t teach anymore) and was able to address issues on the spot. I was often greeted with an angelic stare by the perpetrator and a promise never to repeat the act again. At least half the time I’d pretend I was convinced, take two steps, turn around, and see the verbal bullying continuing as if I’d never been there.

Ooh, and what followed was never pretty. When it came to bullying, and this was way before giving birth to my two special needs sons, Mrs. McCafferty took no prisoners.

And here’s the truth about kids that no parent wants to hear- some have empathy, some need to be taught it, and some, well, don’t hold your breath.

Bullying is not something that “kids just do.”

I had students who bullied and were genuinely mortified by their actions, and I was certain after the incident that it would never happen again. I had others who were repeat offenders, who had to be made aware that I would report every single bullying incident I could find, call their parents repeatedly, notify the principal, and make it so that their lives were miserable until they stopped. Reality is, some kids are mean just like some adults are inherently mean.

Parents need to actively teach their children to respect people who are different than they are. They need to teach their children to actively stand up for classmates who are being bullied. And the schools need to stick to the letter of the very strict NJ anti-bullying laws created to protect students in just such a situation as this.

I think the schools in general are doing a much better job, but ultimately it has to start in the home. I would always tell my students they didn’t have to be friends with everyone but they had to respect their classmates, and if they reached out to that “different” kid they might just be surprised at how cool they are. I don’t think a hell of of a lot of teaching about differences was going on when I grew up in the seventies and eighties, but at least in my experience with my two autistic sons I have seen a growing awareness and understanding in the past thirteen years, which gives me hope for future generations.

And for those students at my alma mater who thought this would be fun to publicly humiliate two unsuspecting people reminiscent of the movie Carrie, I have a few choice words for you.

I hope everyone knows who came up with and supported this fabulous idea. I hope your parents know, and your parents’ friends know. I hope your teachers know and your college recruiters find out and that the RFH parents who are posting this are not lamenting the “loss of a tradition” all over Facebook that you’ll never read. I hope you realize that this could happen to your brother or sister, or one day, your kids.

Be the almost adults you are, apologize if those two kids even want you to, and mean it.

And I hope you realize you’re just one step away from it someday happening to you.


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October 5, 2016

I See You

Posted in AMT's Faves, My Take on Autism tagged , , at 1:51 pm by autismmommytherapist

Justin's First Digital Pics 056


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

The Whole Tooth

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 10:32 am by autismmommytherapist


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

Highs and Lows

Posted in Life's Little Moments, My Take on Autism tagged , , at 10:50 am by autismmommytherapist


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.

Good times.

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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September 19, 2016

No Shame

Posted in AMT's Faves, My Take on Autism tagged , , at 11:13 am by autismmommytherapist


This past Friday I had the honor of having my blog featured on the Autism Speaks Facebook page.  People who took the time to read my post learned about my feelings regarding what will happen to Justin after his father and I are gone (I know, so uplifting!), and as usual, there were many comments on their Facebook page regarding what I wrote.

Many of them were lovely, and I am deeply appreciative of them.  Some were, shall we say, very interesting.

There were the people who told me to have hope which is nice, but my son is thirteen and still likes to cuddle up with me at night and have a bedtime story.  He will not live independently.

There were the individuals who wrote about their high functioning autistic children, many who started out non-verbal as youngsters but are now on the student council, the debating team, you fill in the blank.

If asked, I’d refer them to my bedtime story sentence.

There was an invitation from Rocky to try his all-natural vitamins, as they work WONDERS!

There were comments regarding friend’s autistic kids on the honor roll right next to comments expressing the fact that the writer could never die.

Those latter ones always get to me.

My personal favorite was the person who didn’t understand the point of the post because I didn’t explain where Justin would live for the rest of his life.

Still figuring that one out ma’am.

And then there was this one from a grandparent of an autistic child (one apparently doing very well): “they can learn to take care of themselves if parents would stop doing things for them and teach them to do it on their own. Autistic children are smart. Stop making their disability a disability to them.”


I promised I’d always be honest with my readers, and I could tell you this one hit me hard or brought out the tissues, but its ridiculous factor simply enabled me to justify eating more chocolate that day.

That’s me, always looking for the positive.

Eight, maybe even five years ago, I would have had a sick feeling in my gut as “mommy guilt” crept in over that therapy/vitamin/shaman I didn’t try when he was a toddler and his brain was still malleable.  I would have forgotten that Justin was diagnosed before insurance picked up the ABA tab, and that I was his primary therapist thirty hours a week for eighteen months before he was eligible for school.  I would probably have glossed over the fact that when we learned his prospective school program was “okay” for him but not ideal that we completely uprooted our family and left the Washington DC area that we loved, for the Jersey shore my husband was not so fond of.

I would have forgotten that for years, and years, (and years!) my whole life centered on helping this child to be as independent as he could be.

I would not have remembered that Justin was, for a time, my entire life.

Now, I’m thankfully past those days of “parent shame” (I stole that from one of the people who responded to Grandma, bravo!), but I’m writing this today for any parents of newly diagnosed children, or those who haven’t been initiated into the autism community for that long.

Never, ever, EVER let anyone shame you into believing you’re not doing enough for your child.

I have two autistic children.  My youngest was born four years after his brother, and quite honestly I can tell you he probably got only half the attention and therapy his older sibling received (Mommy was quite tired by that point).  There were days we actually played therapy hooky, days when going into my fourth consecutive year of therapy with one of my children I just couldn’t pull it off.

I know.  As Cersei would say in Game of Thrones, “shame.”

While my youngest certainly still had a mom passionate about helping him be the best he could be, the absolute focus with which I executed this endeavor with his brother was not replicated with my last child.

And someday, he could be president.  His brother will need someone to care for him until he dies.

I just need to say this, as the mother of two autistic children, and a former veteran educator.  So much of your child’s outcome depends on their innate abilities and their level of motivation.

I’ll say it again.  So much depends on their innate abilities and their level of motivation.

Memorize it.  Please.

Do as much as you can, every day, to help them reach their goals and do as much as they can for themselves.  At the same time take care of yourself, and take breaks (mine include wine and chocolate, shocking I know).

Most importantly, no shame for what you or your child can’t accomplish, ever.

And I mean ever.


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September 12, 2016

It’s Complicated

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:50 am by autismmommytherapist


(Dear readers, I apologize for my prolonged absence. It’s been stomach virus, flu, and root canal here (oh my!) but I’m back in the saddle now).

Dear Justin,

I’ve been having conversations about your future lately with various people, all of whom I truly believe have your best interests at heart. We’ve been trying on phrases like “shared living” and “group homes” and “sheltered workshops,” and I’ve been rolling them around in my mouth, trying them on for taste.

None of them taste nearly as good as chocolate.

You see, I’m trying to figure out our collective future, where you will live, where Daddy and I want to live (according to your father it’s not a permanent stint in Jersey), and where your brother Zach, who is also autistic, fits into the picture too.

Let’s just say it’s complicated.

You see, my heart is torn my sweet boy, because as much as you’ve matured and grown since those difficult days twelve years ago when you were diagnosed with autism at the tender age of seventeen months, some things with you have not changed. You still love being at home. You still want to leave said home for about an hour each day and do something wonderful. The only place you ever want to stay more than an hour is Great Adventure or Disney, and with the latter being a bit financially out of reach on a frequent basis that leaves us with Six Flags and the occasional Pixar movie for outings of any length.

Your needs are complicated.

I have friends, friends with severely autistic adult children, who tell me there is still room for growth, that I don’t know how you’ll change and grow in the next eight years before you graduate from high school. I speak to them of the group homes their sons live in, the day care their kid calls college, the seven-day-a-week in-home care they’ve fought for and won for their child. I read books and blogs about adult autistic children and their particular work and living arrangements.

For many of them their transition has been fabulous.

And I know in my secret heart of hearts that if I’m honest, most of these pretty choices are not for you.

You see, I believe if you had your way you’d stay with us and I’d live to be 121 to your 85, and we’d go to the great beyond together holding hands, you first, with me following just moments after.

This dream is why your mother runs every day and limits her wine consumption (most of the time).

One might ask how I know this when you can’t tell me yourself that your preference would be to live with us, well, forever, but I know.

I just know.

I know this the way I knew at six months you shouldn’t have had such a penchant for spinning things.

I know this the way I knew something was seriously different about your development at sixteen months even when your pediatrician didn’t seem that concerned given your father’s childhood, and told us to “wait and see.”

I know this the way I knew my world was forever changed when just a month later he shoved some articles into my hand with the word “autism” in their titles, told me to call a developmental pediatrician, and basically shoved me out the door.

I also know our pediatrician was an asshole, but that’s for another story.

I know the more adventurous trappings of an adult life would not be to your liking the way I know I have to build in extra time in the morning and at night just for us to hug.

I know if you could talk you’d tell me you’d like to stay with us forever so no matter how big you get you can still sit on my lap at night, listening as I read your Eric Carle story for you, fulfilling your penchant for cuddling and that particular fiction you’ve loved since infancy.

I know that if you had your choice everything would remain the same, with even that interloper of a little brother remaining in our home with you forever.

I know if it was possible you’d keep your routine of home and school and one-hour-outing for the next seventy years.

I also know that things will have to change.

Part of me wants to keep you here with us until we can do it no longer, and I don’t say this as a martyr.

Part of me wants you to live apart from us to give your father and I some breathing space, and I don’t say this as a callous mother.

Part of me wants you to have some sort of job, to contribute to society.

Part of me just wants you to have a life of leisure because I know you won’t give a damn about having a job.

Part of me wants to keep you here with us and freeze time for you, keep you safe and secure.

Part of me desperately wants my freedom back.

Part of me wonders who will snuggle with you and read you your bedtime story at fifty.

Part of me laughs at myself for these musings for everywhere I turn (except for Hawaii which seems to have fabulous adult services, aloha!) my options seem limited, to say the least.

Part of me accepts that your father and I won’t be here forever and that eventually you will live apart from us (and not with your little brother as he has already told me), so really the only questions are when, and where.

Part of me just wants to know the future.

Part of me really doesn’t.

All of me wonders, time after time, how I will manage to give you a fulfilling life for forty years from beyond the grave.

Those “how” questions are a pox upon me.

As I accept the fact that none of this is an easy fix, all of me knows I love you and want for you the three things I’ve wished since your conception- for you to be safe, happy, and loved.

And all of me knows it’s complicated.

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August 26, 2016


Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:58 am by autismmommytherapist

Autumn 08 092

He snuggles into my lap as he does every night, smelling sweetly of baby shampoo with a hint of cinnamon which makes me wonder if he got into the spices again. Tonight he curls into me with a huge smile on his face and looks into my eyes with joy, because this evening I’ve chosen “The Very Hungry Caterpillar” to read to him, which means he’ll get his Eric Carle fix. Unbeknownst to him I’m switching things up tonight, because recently he’s begun stringing two words together, and I want to capitalize on the moment.

God forbid this former educator should let a teachable moment pass.

So tonight I open to the first page and simply wait. He stares at the book, gives me an “eeeeeee” of excitement, then looks at me as if to tell me to get on with it. I don’t, and just wait to see what he’ll do.

And damned if my severely autistic teenaged son doesn’t start reading the entire story to me.

Truth be told, only every third word or so sounds like the printed one on the page, and even then he speaks so quietly I need complete silence to hear his syllables, each painstakingly uttered with effort and pride. But he is reading one of his favorite books to me, looking at me periodically to see if his mom is following along.

Believe me, I am.

I listen to every sound exhaled with effort, overwhelmed to hear one of his faves read to me for the very first time in the thirteen years I’ve been reading aloud to him (not counting the eight months or so in the womb, yes I was one of those pregnant ladies).

I recall how it felt to realize he could read at three, as his therapists and I threw out index cards with increasingly complex words on them and asked him to hand them to us, which he did with remarkable accuracy.

I remember reading about hyperlexia and taking it all in, recall thinking that even if he never leads an independent life he’d have this.

I recall thinking then that our biggest hurdle with him would be eliciting words, and it wasn’t . He’s learned to communicate in various venues, and now predominantly makes himself understood with his iPad, words being his default plan. I remember thinking how devastated I’d be if words weren’t his primary means of getting his needs met, and I remember the day I realized I should instead be grateful he’d figured out other ways, as some autistic kids never do.

I remember feeling so proud, just as I do now.

There will be many things that will never come with time. Justin won’t marry or go to college. He’ll never drive a car or drive me crazy with requests for said car. He will leave us physically at some point but we will always be intertwined, his fate the primary driving force in my life, his safety and happiness at the forefront of my goals.

But the people who told me he’d eventually talk (and there weren’t many) were right, so maybe my friends who’ve crossed the bit “transition divide” are right too. Maybe I will be able to craft a sixty year span of a good life for him from burgeoning adulthood to old age. Maybe the words will come more fluently.

Maybe those words that warm my soul will touch others too, make them see my beautiful boy as he is- smart, affectionate, and harboring a heart of kindness utterly clear and undivided in its intent to be pure love .



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August 18, 2016

How Far

Posted in Life's Little Moments, My Take on Autism tagged , , , at 12:56 pm by autismmommytherapist

Justin Turns Ten 020

He grabs my arm with urgency, stopping me in the middle of washing a frying pan I didn’t really want to be washing anyway. He turns my entire body with his grip, eyes intently locked with mine, all business. When he sees he has my focus I hear the telltale sucking in of air that precedes all of his speaking attempts, and I wait to hear his sounds. What comes out is unintelligible to anyone not his parents, but I know he wants his “Clifford” CD for the computer, and he wants it now.

My severely autistic son, just shy of thirteen, is choosing to use his words over his communicative device.

His desire to get his needs met through syllables is relatively new, his attempts at speech ramped up since spring break. He does use his iPad to communicate what he wants, sometimes pressing buttons to sound out his requests, on occasion typing his words to summon what he wishes for. This bypassing of communicative devices at home is new, and his father and I welcome it, as we’ve been searching for speech for him for almost twelve years.

But if I’m honest with myself although he’s made progress, particularly in the last few years, most of what he asks for is only understandable to his mom and dad. And since we won’t be around to take care of him forever, that’s a problem.

Don’t get me wrong, the sounds are thrilling. We waited years and years to hear them, eagerly anticipated him breaking his tenacious silence despite years of speech therapy both in school and in private therapy.

But I’ll share with all of you that my focus has shifted over time from wanting him to communicate through speech to simply wanting him to have a form of functional communication at all. And that’s what we’re striving for both at school and at home.

So while I welcome the words we’re also trying to get him to use his Proloquo2go, and I work on his spelling with him weekly as well. The truth is while I try to remain in the present I always have at least one toe (or usually a foot) mired strongly in the future as well, and I often think about how he’ll get his needs met after we’re gone. His father and I have an almost uncanny ability to understand what he wants, but I don’t expect his caretakers to have those superpowers. Being able to read his mind and anticipate which DVD he wants to play next will not be listed as a job requirement for his lifetime care.

So I’ll keep pushing him.

Because I want to crawl inside his mind and understand his thoughts, his feelings, his wants, all that he has stored up there that his neurotypical parents aren’t able to discern.

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Because someday we won’t be here to anticipate his wants, and he’ll need a more functional way to communicate his needs.

Because I love him to the moon and back, and want him to be his best self, to be as independent as he can be.

Because learning to take care of his own needs has become my new barometer for his success- not how many ABA trial he completes with 80% accuracy, and not how many intelligible words he emits.

Because that brave, beautiful brain has so much to share.

So his entire tribe will keep pushing him, not to his breaking point, but just to see how far he can go.

And I believe that will be very far indeed.


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August 10, 2016

New School Year Transition Tips for Autistic Children

Posted in AMT's Faves, Fun Stuff, My Take on Autism tagged , , , at 9:54 am by autismmommytherapist

Summer 15 097

Summer vacation is ending all too fast, and before we know it those bright yellow school busses will be darting through our neighborhoods and a new school year will commence. Moving to a different classroom, grade, or school can be stressful for any child; for those on the autism spectrum, handling anxiety about the unknown can be exceedingly difficult. These fears can be reduced by taking small steps to familiarize your child to his or her new situation prior to the beginning of the school year. Here are some tried and true tips to making a smooth transition, and to starting a new school year successfully.

1. Talk to your child frequently about what to expect in the upcoming year. It’s the simplest tip, and perhaps the most important one to help reduce your child’s anxiety.

2. Cross days off on your calendar. Some children may have anxiety about when the school year begins. Simply crossing days off the calendar may help your child better understand when the school year starts.

3. Create a new morning routine and practice it prior to the start of the school year. Begin waking up your child a little earlier each morning so that he or she is acclimated to the new wake-up time way before that big first day. Do a few “run-throughs” near the end of summer vacation so your child knows what to expect in the time before leaving for school. If your child responds well to visual schedules, you might create one outlining everything from getting dressed to going on the bus.

4. Take a tour of the school. This can be arranged with the case manager of your child study team. You may not get to meet your child’s new teacher this early, but at least your child will become familiar with the building prior to attending. When you are on your tour, visit the main office, bathrooms, cafeteria, gym, library, playground, and any room your child may spend time in during the coming year. Take pictures on your tour and incorporate them into a social story afterwards so that you and your child can review it during the summer (a social story is a book that a parent or caretaker creates to explain in written and/or pictorial detail what the child should expect for an upcoming event).

5. Walk through emergency procedures on your visit. Many children on the spectrum have difficulty with loud noises and breaks in routine. If possible, when on your tour, have your case manager show your child where to go and what to do during any emergency scenario. Doing this will help your child be prepared, and he or she might find it fun to have mom or dad practice standing along silently.

6. Create a daily school schedule for your child. You may not know the exact routine, but even walking through one day may make your child feel more at ease. If possible, ask your case manager to acquire the present year’s schedule prior to your tour, and have your visit at the school follow that schedule.

7. If at all possible, have your child meet the teacher prior to the start of school. Remember to take his or her photo and add it to your social story.

8. Write a letter outlining your child’s strengths, weaknesses, possible sensory issues, dietary restrictions, and favorite reinforcers. If possible, have your child help you create this document, as it will be invaluable input for school staff. Be sure to include a few things that are fun and unique about your child. A copy of this letter (one to two pages maximum) should go to your child’s teacher and aides, but should also be made available to any staff who work with your child. Remember to send a copy to the principal, assistant principal, occupational therapist, physical therapist, speech therapist, physical education instructor, music teacher, etc. It is very helpful to teachers to have a “snapshot” of your child prior to instructing him or her. Don’t hesitate to brag as well!

9. If appropriate, make certain a behavior plan is in place day one. If your child has a plan that’s been working for him or her, ask that it be shared with his or her new teacher and implemented immediately at the start of the year.

10. If your child uses an augmentative device to communicate, make sure all the adults in his or her classroom are familiar with it. Many augmentative devices require some instruction on how to use them. At the very least, the teacher should be familiar with the device prior to the fall. All the aides who will work with your child should be trained as well, and there should be a plan in place so that all are comfortable using the device within the first few weeks of school.

11. If your child has sensory issues make sure he or she has a favorite sensory item available from the first day. For those children on the spectrum who struggle from sensory overload, certain objects can offer a great deal of comfort. Make sure your child will have at least one available at all times.

12. Ask to meet the bus driver. Many bus drivers take a practice run the last week of summer vacation. Request a “meet and greet” with your driver so your child feels comfortable riding the bus on that first day. You can even ask if you and your child can do a ride-along to the school as some drivers are amenable to that request.

13. After the school year begins be on top of your child’s progress. Make contact with all of your child’s instructors in the first few weeks of school. This enables you to track how your son or daughter is progressing and lets school staff know you are interested and invested in your child’s success.

14. Write a thank-you note to your child’s teacher and principal. If the first few weeks go smoothly for your child, it never hurts to thank those responsible for a smooth transition.

15. If possible, volunteer. Your presence at school sends the message that you are actively involved in your child’s education. Also, (for the most part) children love to see their parents at school. You will score points for being there!

16. Ask for help. Requesting assistance shows that you are willing to learn and to try new things to help your child.

17. Last, but definitely not least, try to relax. All children can pick up on their parents’ anxiety. If you can keep yours in check, it will help your child stay more calm on that all-important first day and through the school year.

Have a great year!


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