May 1, 2017

The Weight of It

Posted in AMT's Faves, My Take on Autism tagged , , , , at 2:13 pm by autismmommytherapist

Today we ran into each other at the grocery store. We don’t know each other well, but our kids have been in the same class together several years now, and once we were very compatible room mothers. We chat about our kids (of course), their school, how fast summer is approaching. It’s the obligatory two to three minutes of conversation, but truth be told we both like each other, and despite our long list of things to accomplish that day we’re happy to have seen one another.

I think in another lifetime we would have been friends. Hell, I like your daughter so much had she been born thirty years earlier we would have been friends too.

I have lots of acquaintanceships and friendships after living here more than a decade now. A number of my relationships have a great deal more depth to them (my cub scout wife comes to mind, thank God she volunteered to “be prepared” too), and a handful of them are moms to autistic kids as well. I made sure to make friends with moms of kids in both the severe and mild camps, as frankly while I know it’s a spectrum (who doesn’t now) my kids’ “autisms” present as totally different entities, with so little crossover to call them both just “autistic” is laughable.

Okay, I’m not laughing, but you know what I mean.

The truth is, I really only unburden myself to the other autism mommies, in part because to explain what’s really going on at home would take a lot more time than two to three minutes (understatement of the century), and in part because I need the people I vent to to just “get it.” My mommy friends of “high-functioning “ (a label I hate) kids get my angst when my youngest has a friend issue or has decided he’ll never take care of his older brother when he’s older because he’s too much work (which I really, really get, but one can have hope). My “low-functioning” (another label I hate) mommy friends talk me off the ledge when I talk about sleep deprivation/potty issues/ his overwhelming need to hide my keys twelve times a day and know just to listen and not suggest anything, because I’ve been on the autism rodeo for fourteen years, and damned if there isn’t anything left to try.

Believe me, I’m A type. I’m thorough.

I know, my grocery store friend, we see each other fairly often. I’m the one in the decent-looking blue t-shirt after school trying to interest seven boys in a scouting program that just got with the twenty-first century. I’m at PTA meetings (although I’ve backslided this year). I volunteer at school for various events I’m not sure my son cares if I attend anymore (he says he does, but perhaps he just knows how to work his mom). I usually have a smile on my face (I once won a scouting award which touted I was “Kim Happy Clown McCafferty,” which was accurate on so many levels it was uncanny.) I look happy. I am happy.

But there’s this too.

I won’t even attempt to speak for other parents of autistic children here. There’s not just a spectrum for our kids, there’s one for the parents as well. I have read essays and even met parents of severely autistic children who literally wouldn’t change a thing about their kids because they believe it might change the core of who they are. I have read pieces by and met parents of severely affected kids who would do anything for a cure, who would get them to take that magic pill no matter how many pill-swallowing programs their kid had to attend to get that damn magic down their gullet. For the record, I’m somewhere in between “autism is unicorns and rainbows” and “suck it out of him.”

Where I am on that spectrum depends on the day. Hell, sometimes it depends on the minute.

The truth is I vacillate on many things that affect my beautiful, severely affected teen-aged boy. There are some days I am deeply sad about my boy never attending college, getting married, or driving a car (okay, maybe not that one so much). Some days my rational mind tells me he doesn’t think about these things (yes, I presume competence, no, a child still entranced by Baby Einstein in puberty is not worrying about his ACT scores) and is mostly happy with his life, and I should just be grateful for that.

And I am. And despite the accompanying OCD that often threatens the fragile harmony of our family he is happy and thriving. It’s just that when things disappear constantly on his fifty-year-old mother who desperately needs visual cues, sometimes I am not.

Autism mostly happens to the individual who has it, but it happens to the rest of the family too.

If I’m being perfectly honest with you dear acquaintance, I function, I present that smiling countenance to the world because I compartmentalize. You see, my son’s age and impending adult have arrived, and that “future thing” I put on the shelf because I was trying to get him to pee in the potty for a year-and-a-half has come to call. This fall will be his first transition IEP, and while I know his amazing, “Disney World-esque school” (I know it’s not a word but it should be) will do their best by my boy, the reality of post twenty-one is scary as hell.

The truth is, contemplating his future, is, well, impossible. You see, even if his dad and I can figure out something worthwhile and safe for him most days after twenty-one; even if we can find a safe residence he’ll actually stay in when technically he’s old enough to drink; even if we can fashion a world that will never be as wonderful to him as his school placement but will hopefully keep him happy enough the problem is, his dad and I will die.

And planner that I am, even I can’t get out of this one.

I am confident that his little brother will play some role in his care-keeping, even if it doesn’t involve living with him. His cousins are close enough to his age I’m sure they will check in on him as hubbie and I approach our dotage, and will do so after our deaths. I’m hopeful I can figure out what the hell to do with him, as the “group home versus “buy a place with our last dime and staff it” options are a constant melody in my mind. Frankly, I mostly block out the statistics on his chances of being sexually assaulted or left in a van to die (and no, I’m not being dramatic) because these issues are too painful to contemplate, and even I can’t help him from beyond the grave.

But damn, I’d give it my best try.

The truth is, the weight of his future world is always there. It’s there when I slink into the back of a PTA meeting fifteen minutes late because I had to help my husband get my son upstairs for bed. It’s there when I’m hoping for forty-five minutes of solitude at my youngest’s karate class because that afternoon was soul-grindingly hard. It’s there when things are actually good and I’m just directing kids through an obstacle course at field day.

It’s there when I run into you in the produce section, the products of which are still considered an abomination by both my kids.

That weight, that tangible weight, is always there, no matter how deep my smile, or if I remembered your name. Please know that’s why I might have forgotten what you do for a living, or why I halved my volunteer services this year because I’m just too damn tired. Despite the beautiful, vindicating, soul-strengthening moments I have with my family, that weight, that uncertainty, that impossibility, is always there too.

So please, just know.


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April 24, 2017

Dear Future Daughter-in-law

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:31 am by autismmommytherapist

Dear Future Daughter-in-law,

For the record, I’m planning on still being around when my son marries you, but I was pretty damn old when I had him and I’m a “planner,” so just in case I thought I should write down a few things I had to say to you.

First of all, and I hope you know this already, you hit the jackpot.

I know, you’re probably thinking this is just the opinion of a loving mom, but honestly, you have. You see, since the age of ten our boy has been talking about getting married, settling down with his four or five kids (yup, hoping you two make some money,) and being totally devoted to the person he presently calls his “soul mate.”

Trust me, your man is not a player.

If you’re planning on walking down that long aisle with him I’m assuming there are some things about him that you already know. Clearly, he’s handsome (yes I’m biased,) intelligent, and funny. He loves technology and little kids (he begged me for a little sister but the store was closed.) He is passionate about everything he is interested in, and that includes you and your future progeny. He can’t cook but he cleans up after himself (you can thank me now.) He loves you fully and utterly, your perfections and your imperfections equally. Frankly, he is a catch.

He is also mildly autistic.

I don’t know if this has caused you any anxiety at all, but I think we should talk about it. When our boy was little he definitely struggled with his disorder. There were sleep issues (a gift to his entire family,) eating issues, and some anxiety about the world around him too. Just know that me and your future father-in-law and about a million other people worked our butts off to help alleviate these problems (yup, you can thank us again,) all of which eventually resolved themselves with time. With hard work on his part, and equally important, maturity, he evolved into the confident, kind, amazing adult that he is today.

He is still autistic. He’ll never “outgrow” it. And for him, it’s been a gift.

Honestly, if any other parents ever read this missive there may be some eye-rolling at my last statement, but it’s true. Granted, in his early years I needed a lot more chocolate (and wine) to get through the day sometimes, but the difficulties presented by his autism were more than outweighed by the abilities that came with it- that prodigious memory, his ease with reading at age three, and his unique world view which continues to surprise and delight those around him even now. I literally can’t separate him from his autism, and I wouldn’t want to try.

And I hope, if you love him as much as you say, you love all of him.

There’s a saying that when you get married you marry the family too (so true by the way, an aphorism right up there with “It is what it is” and “one day at a time,”) and I know you might be a little concerned about your brother-in-law, who is severely autistic. I want you to know that your man told me very clearly at age nine that while he loved his brother he didn’t want to take care of him when he grew up because he was a lot of work (yup, he’s perceptive too.) His father and I are planning on never having you two take care of him in-house. That said, I hope you’ll respect him and check up on him, and hopefully love him too. Because the truth is he is eminently loveable, and has been instrumental in teaching compassion and kindness to the father of your future children.

Yes, I know I’m laying it on thick here, but I really love this particular kid too.

You may also be worried about your kids being autistic, and I think we should talk about this too. They’re still figuring out the causes (I’m hoping if I make it to one hundred they’ll have it figured out, it’s a goal,) but genetics definitely plays a part. If you look at our boy’s family tree there’s enough quirky but bright individuals to lead me to believe that genetics is in play for this family, and I know this may concern you.

I know it concerned me when I was pregnant with your boy.

The truth is hon, while your chances of having a kid on the spectrum may be elevated, there’s a chance that even if he was in the “neurotypical crowd” you two would make an autistic kid anyway. The truth is life is full of surprises, twists and turns. Having two autistic kids was definitely not in my life plan (understatement,) but it happened, and your father-in-law and I handled it. I won’t lie to you. Some days, it sucked. There were times when they were young that we were literally hanging on hour to hour, wondering if things would ever get better, looking for help (hence the wine and chocolate.) Sometimes, if I’m being quite honest with you, our home life was brutal.

But the truth is, we got through the dark days, and both kids grew to be immeasurable easier, and so did our lives. I wouldn’t go back to those days for any amount of money (hell no!) but I will tell you they made us stronger, and made our marriage stronger too. Having autism in the house made me more compassionate, and definitely more patient (a struggle for me.)

And I promise you this. I will always be honest with you about autism, and anything else.

I want you to know if any of your kids are in the “autism club,” me and your father-in-law will be there by your side through everything. We will help you.

Maybe even more importantly, we will get it.

You two will not be alone.

I can’t tell you how happy I was when our boy told me he put a ring on your finger. You are kind, compassionate and loving, you “get” our boy, and most importantly, you make him deliriously happy.

Which makes me deliriously happy too.

We love you.

We’re thrilled you chose our boy to love.

Welcome to our family.


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April 18, 2017

Get Out

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 10:13 am by autismmommytherapist

I recently had the joy and pleasure of spending a week in Ireland with one of my best friends, without kids or husband (I know, don’t hate me), celebrating a milestone birthday for the two of us (I won’t say which one but I loved the eighties so you can guess). It was an amazing week seeing the breathtaking beauty of the country, and meeting the ridiculously nice people. For seven days I didn’t have that running list going through my head of everything I need to accomplish on any given day, no chores, nobody asking me to fetch a seventh snack or cup of juice.

It was heaven. It was also freedom.

We were on a bus tour so there wasn’t a lot of time to think about things, but I had a lot of time to process on the seven hour flight home when both me and my friend were finally too tired to talk to each other.

I had a lot to think about.

As usual, when I have large amounts of down time (that would be never) my thoughts turned to my boys, how they’re doing, what the future holds for them. Although they both have autism, the truth is, their futures could not be more different. My youngest son who has mild autism has every expectation of driving, going to college, getting married, and having kids. My oldest son who is on the severe end of the spectrum will need lifetime care, which unfortunately at some point (although I’ll give it my best shot) I will not be around to provide.

As I said, I had a lot to think about.

The truth is, I loved this trip, with its new experiences, its lack of responsibility for others, its summoning of the echoes of my twenty-something self who lived in France for a year back in my college days. Traveling has always been a passion for me, has been when I’ve felt most alive, unfettered. And while I wouldn’t trade being a mother for the world it is something I’ve not been able to do as often as I’d like due to the boys’ diagnoses, which made them difficult to deal with at times.

Okay, yes, that’s the understatement of the century.

Over the years my husband and I have usually managed to carve out one short trip for the two of us annually, and as my eldest son has reached his teenage years I admit I’ve felt a sense of urgency in planning these excursions. In seven years my boy will graduate high school at twenty-one. My mother, who is the only relative able to watch the boys for us, will be in her eighties, so I’m guessing our ability to travel will be limited. You see, the waiting list for residences right now is about fifteen years after he graduates, and even then I’ve been told many of these homes are not places I’d want my son to reside.

The truth is, if we can’t find a good day program for him the day after he graduates he will be home, all day, every day, with me. He will not appreciate this situation one iota. I can tell you, neither will I.

Hence, the sense of urgency.

It really hit me on the plane that my options for fun down the road may be limited. Often I am so caught up in the daily minutiae of autism with two boys that I forget to look at the big picture (which is sometimes a good thing), as I focus on trying to get through the day. I also realized that despite the fact that I am a planner extraordinaire (ask my former teacher co-workers who made me team leader and nicknamed me “goddess”) I have been deliberately not contemplating the not-so-distant future, because while I love my kid the thought of taking care of him 24/7 at almost sixty without a break, is, well, pretty damn depressing.

I need to take every fun opportunity that comes my way and grab it and not let go.

It’s time for me to sign up for those “transition workshops.” It’s time for me to be completely honest about what’s coming down the road- that not every family finds a good, safe place for their disabled adult to go to a day program or to live, or that it might take a long time to find these options. It’s also time for me to forget how tired I am and get out more, recapture that fleeting feeling of freedom when I can.

And the truth is all of us, those who are in the “club” and are lifetime caretakers, need to face up to what’s coming, remain as optimistic as possible, and have some damn fun when we can. The earlier you start, the better.

And as I kick off this significant secret birthday, I’m going to do just that.


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March 31, 2017

World Autism Awareness Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:07 am by autismmommytherapist

This coming Sunday is the tenth official World Autism Awareness Day, a day in which I could tell you I’ll be “lighting it up blue” or spreading awareness, but in reality I will be severely jetlagged in Ireland and hopefully putting autism on a shelf for a week.

Really, I’ll still have fifty-one weeks and thirty more years to think about it.

In the past nine years I’ve written at least one missive about the day each year, discussing my eldest son’s burgeoning awareness of the world around him, and my youngest’s awareness that he has autism too. I’ve talked about our path from awareness to acceptance and even to celebration (yes, some of you are rolling your eyes, but reading at three and insane organizational skills are the yin to many a yang). I’ve written about how much Autism Speaks has helped us, and how passionately I feel about the boys’ collective progress.

When it comes to autism, there’s always a lot to write about.

When the boys were little, our world was very small. Truth be told I only worried about what was happening in their world, was truly just trying to get through the day, or sometimes the hour. There was no global autism awareness chez McCafferty.

But I’m happy to tell you now, with my kids at ages ten and almost fourteen respectively, there’s room for what I call the “big picture.” Here are some things I’m aware of this World Autism Day.

I’m aware that my eldest, severely autistic and non-verbal son continues to make progress every month of his life, and his courage astounds me.

I’m aware that my youngest has exceeded my expectations in what I thought he’d achieve, that he is “living his dream” as he is fond of telling me.

I’m aware that some days at my house are so difficult they’d never make it on a reality show.

I’m aware that some of our moments are so filled with love and promise some people would not believe I have two autistic kids.

I’m still aware that Betsy Devos needs to brush up on IDEA.

I’m aware that the Supreme Court is my new best friend with their latest ruling on the court case which hopefully redefined a “fair and appropriate education” for generations to come.

I’m aware that I’m nowhere near as patient as I often need to be.

I’m aware that not beating myself up about it is key, and I’m trying my best not to do that.

I’m aware that I will never be at peace with leaving my son for half his life here without me.

I’m aware that my other son will most likely “flee the coop,” and for that I’m eternally grateful.

I’m aware that I need massive quantities of chocolate to get through my day.

I’m aware that sometimes wine is needed to accompany that chocolate too.

I’m aware that this life, both for me and my kids, is sometimes grueling, beautiful, stressful, fulfilling, annoying, and miraculous, all at the same time. I’m aware that autism is not completely gloom and doom, nor puppies and rainbows either.

I am aware of the patience and consistency and boundless love from several villages of people that go into raising my kids.

I am aware and am so grateful for everyone’s contributions, and for my kids, just as they are.


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March 20, 2017

Just Get Out

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 10:22 am by autismmommytherapist

My husband Jeff and I have two sons, an almost fourteen-year-old and a ten-year-old, both with autism. My eldest is on the more severe end of the spectrum, and also has a diagnosis of OCD. My youngest is on the milder end, and has a secondary diagnosis of ADHD. For the most part, they are both happy, successful in school, and the two most loving children any parent could ask to raise. At this point you may be rolling your eyes, or maybe you want to know our secret. Friend, I’m going to tell you. Ready for it?

It’s simply this- get them out.

If you’re reading this with an autistic toddler clinging to your leg because you have the audacity to want to put him in the car for a ride to the park, you may not feel really receptive to this advice. I know, and I get it- I was you twelve years ago. The first year Justin screamed any time we put him in the car (turns out he hates facing backwards, at least that issue was solved on his first birthday,) so outings were fraught with trauma before we even went anywhere. The only time he didn’t cry when we left the house was when I put him in his stroller and took him for a walk, which in Virginia meant several months in summer or winter where that was impossible. I remember thinking at one point that a person who weighed less than my left thigh was keeping me prisoner in my own home.

Yup, the left one’s bigger than the right. Must be a running thing.

After a period of time where I truly felt I’d entered a witness protection program I decided our strict quarantine had to go, and we began our ventures out. I chose our local mall as our battle ground because we could ostensibly go there year round, and at the very least I could attempt to get a drink at Starbucks.

I have my priorities.

At first Justin hated every aspect of our “stimulate the economy” excursions. Knowing this, I started small. The first time we went I just drove him to the parking lot, parked, then went home. The next time we made it to the stroller, and to the closest mall entrance. The next time, we made it inside for one grand loop of the first floor.

Eventually we even conquered elevators. It was a momentous day.

The mall taught me a lesson I applied to many more situations with Justin, and eventually with my younger son Zach when he was diagnosed. Something in me knew that the more times I got out with them when they were younger, the more they’d get used to trying new things. The first time Justin sat on a horse he whined and protested the entire fifteen minutes around the ring. Something inside me told me to pursue this, and while the first month of lessons were hell, nine years later his half hour on a horse is his favorite thing of the week.

It’s one of my favorite times too. It feels like victory.

Of course, exposing my boys to different opportunities is far from the only reason they’re mostly happy in their environments, and usually open to trying new things. Both boys have had years of special education instruction, occupational therapy, physical therapy, and speech therapy. My eldest has had a private ABA tutor since he left Early Intervention. My youngest is on the “autism diet,” which we think helped him immeasurably. My husband and I have tried our best (and not always succeeded) to be patient with them, and we’ve had help from family and friends.

It takes several villages to raise two autistic children.

There have been many factors that contributed to who they are today, but I truly feel that getting them out young ans conditioning them to the community is one of the biggest reasons they’re mostly at peace with themselves and the world at large. It wasn’t always easy. I have tiny scars on my shoulders where Justin’s teeth expressed their displeasure at having to wait on line at the boardwalk. I distinctly remember packing a young Zach up one morning five minutes after we’d made it to the beach because a fly landed on his foot, and he became hysterical.

All good times.

But we perservered, and now my sons have many more options on their life menus. It’s still difficult to keep my son at a relative’s house for more than two hours- we often end a visit with my boy unceremoniously dumping my purse on my lap so I’ll take him home. He has severe autism, so sometimes there are limits to what we can do. I’ll admit I held my breath when we took him to Disney four years ago, but darned if the kid didn’t make it almost eight hours each day in the park.

Given how expensive those tickets are, I can honestly say those days really were magical.

Whether your kid has just gotten a diagnosis or you’re a few years in, don’t give up on getting him or her out in the world. Ask for help anywhere you think you can get it. If a random neighbor offers assistance, have her accompany you somewhere so you have an extra pair of hands. Even if the outing is a disaster wait a while and try again- I can’t tell you how many times I attempted a trip with Justin that at first made me long for a glass of wine but eventually ended in triumph. Make sure you have a plan B and C for every time you venture out, and if necessary, try your trip in segments so that your child becomes accustomed to where you’re going.

Don’t give up.

Just get out.


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March 13, 2017

Practice What You Preach

Posted in My Take on Autism tagged , , at 9:54 am by autismmommytherapist

Practice what you preach.

The words came unbidden to my mind this weekend as I watch my eldest son, who has severe autism and OCD, rearrange the pile of books on the kitchen table for the hundredth time that day. I know to you this behavior may sound benign. However, along with the rearranging comes a penchant for moving things to a new location, which can include the bathroom or shoving an important piece of paper underneath a pile of Justin’s therapy “stuff,” in other words a place where it will never be recovered. We are back where we were three months (and really two years) ago, and it literally happened overnight. One day he was fine, the next not. Once again either my husband or I need to be in the room with him, or take the risk our belongings will be trashed, or worse, hidden.

And I can tell you people, I’m just not up for it.

Of course his OCD just happened to rear its ugly head on a weekend where I have to be out of the house for the good part of seven hours with my other son, leaving my husband to stay within a five foot radius of Justin for the better part of a day. I admit, the entire time I’m at church and a Cub Scout affair only half my mind is there. I am channeling the stress my husband feels, as he can’t leave the room where Justin is on the computer (he did for two minutes Sunday morning, and came back to find my numerous sticky notes and papers in the trash,) so while I’m physically in these places, part of my heart is back home.

I hate that my son goes through this. When he’s in the throes of it there’s no joy on his face, none of the happy smiles he shares with the world when he’s on the computer, or playing the same segment of a movie on his DVD player, or watching one of his Baby Einstein movies on TV. Honestly, sometimes we feel like he’s not even really with us, and at his best, our boy is totally with us, engaged, loving.

Watching his suffering literally breaks my heart.

I know people reading this will have some heartfelt suggestions. We’ve gone the BCBA route with an excellent practitioner. We’ve tried numerous medications, and found one that for the last six months has worked. He may just need a medication adjustment, which of course means harassing his neuroped until I can get the slip for lab corp, making the appointment, telling his nurse and his teacher not to give him his lunchtime med, and picking him up early at school (because of course there’s only a one hour window in the day when the blood can be drawn to be most effective). Frankly, I am so worried we’re heading back to the travails of 2016 that I welcome all the annoying details, am happy to have something to do to move forward.

But in the back (and hell, the forefront of my mind), I know that upping his medication as we’ve been doing every three to four months might not work, or we may not even be able to up it as he might be at therapeutic limits. There literally may not be anything to do other than ride out the storm.

And despite my saying “I’m just not up for it,” the truth is I have no choice.

There are little things we can physically do. His returned desire for rearranging has force me to purge some items, which is always a good thing. We can try a few tricks that sort of worked in the past, but we’ve noticed he fixates on different things every time he goes through a period like this, and it’s impossible to predict what he’ll focus on next. Sometimes we’ve found the phone buried under a mound of trash. Furniture can be dragged into the middle of the room in an attempt at remodeled feng shui. His OCD is like playing wacamole. We never know where it will pop up next.

We can however do some things for him, and hopefully we’ll hit the jackpot of sanity like we did late last year.

But the truth is what I really need to do is remember my own words.

Even with autism and OCD things tend to come and go in cycles.

My husband and I need to tag team this so that every waking minute he’s home the “watching” doesn’t fall entirely on me.

While we’re going through this, and ALL of us go through this, we need to remember to take care of ourselves too.

I’m going to try not to get overwhelmed. I’m going to try to still revel in the moments our boy is truly here with us.

I’m going to practice what I preach.


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March 6, 2017

Our Normal

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 2:49 pm by autismmommytherapist

I know. You’re in the middle of what’s been called “siege mode,” and it’s hell. You don’t know if your son will survive it. You don’t know if you will pay enough attention to his little sister ever again. You don’t know if you will survive it.

You just want your life back. Even with autism, there is a “normal.”

Things were going pretty well. Maybe you’d heard a few words recently. Perhaps a good school report came home, another positive one in a long string of happy days for your daughter. Maybe your five-year-old son has been sleeping through the night for months. Your daughter ate a vegetable, kept it down, and the apocalypse did not occur.

Maybe you let your guard down, just a little.

And then one day, it happened. Just the once. Maybe you watched in horror as your son banged his head upon a wall. Your daughter, who’d been sleeping like an angel, was up half the night. Your son pinched you hard for the first time in six months.

You’ve told yourself the behavior is just an anomaly, an outlier of autism. You tell yourself it won’t rear its ugly head again.

Except, it does. And it decides to stick around.

Whatever it is, the head banging, the pinching, the lack of sleep, the aversion to ever leaving the house, it takes up unwelcome residence once again, or perhaps this behavior is new. By now you know the drill. You consult your son’s behaviorist. You talk to your daughter’s neuropediatrician about upping her meds, or perhaps going through the long waiting period of a new one. You go online. You talk to your “autism friends.” You argue with your husband about how to make it stop.

You know you’ve conquered other extreme challenges in the past, but this time, you are tired.

You are always so damn tired.

I know you’re tired, because I’ve been there too.

It took years before my eldest son, who is severely autistic, learned how to sleep through the night, but when that one was conquered, it finally stuck. We had regression after regression with potty training, but by age six accidents were few and far between.

One day I even got him to trade some carbs for salad, and lightning did not strike.

The aggression comes and goes, but for the last few years, thankfully, it’s mostly quelled. The OCD, his companion diagnosis, well we view that as another permanent resident, our third child. We’ve just come through a particularly difficult stretch of two years, enduring a myriad of behavior plans and multiple medication attempts. Finally, we hit the jackpot. Finally, he stopped organizing every non-bolted-down object in our house in his unhappy and frenzied attempts to impose his order on everything, and we saw our predominantly happy boy returned to us. Finally, my husband and I began once again to breathe.

Finally, we returned to “our normal.”

Right now, I know you’re in the throes of it. You want so much to help her, but you’re not sure you ever will. You’re exhausted. You’re resentful. You’re guilty about being resentful.

You just want it to stop.

People will ask you how he’s doing, and you find it easier to plaster that smile on your face and say “he’s fine” rather than trying to describe his newest obsession. You just can’t explain to a mom of a typical kid how much your heart is hurting for your daughter. You continue to work, or volunteer. Even at your breaking point there’s still laundry to do, meals to make, errands to run. You put on a smile when you run into your other child’s teacher at the grocery store. You try not to fight too much with your husband. Sometimes, you feel like giving up.


I am now the mom of a severely autistic thirteen-year-old, and even after almost a decade-and-a-half of living in autism land I’ve seen few things that universally affect all families. Perhaps the only thing everyone agrees upon is that Early Intervention helps.

That, and getting your autistic kid to sleep is a win-win for all.

But I’ve seen this in my own home, and in my friends’ homes. I’ve heard countless stories of acquaintances’ autistic children, and read my favorite bloggers’ posts online. There is, perhaps, one more universal other than early therapy and unconsciousness.

Most of the time, behaviors come and go in cycles.

I’ll say it again. Most of the time, the behaviors come and go in cycles.

Often, with patience, time, the right therapy, the right medication (or all of the above,) we can help our kids. We can alleviate the most egregious symptoms of whatever is causing them, and us, such torment.

We can return to our normal.

So wherever you are in this latest siege, don’t give up hope.

Maybe it’s been a few weeks. Maybe it’s been months.

Maybe it seems like it’s gone on forever.

Take each challenge one step at a time. Rally all your resources. Ask for help. Remember to take care of yourself.

Again, remember to take care of yourself.

And breathe.


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February 27, 2017

The Marathon

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 3:45 pm by autismmommytherapist


I stretch luxuriously on my couch, book finished, contemplating my next snack as I lumber to my feet. I do a mental check of my children, know my youngest is wrapped in a cocoon of blankets on the couch in the other room also reading a good book, and hear the happy “eeees” of my eldest as he revels upstairs in the computer games he loves. All is well in the McCafferty household.

All is well, and on a weekend I’ve managed to spend an entire hour reading a book. Definitely time to celebrate with food.

There was a time in the not-so-recent past (hell, two months ago) that getting an hour of free time with my kids around would have been a pipe dream not to be realized. My eldest son has severe autism and moderate OCD, and for a good portion of the last two-and-a-half years either my husband or myself actually had to be in the same room with him at all times to make sure his compulsions didn’t end up with him hurting himself, or more likely, inadvertently destroying something we really didn’t want to replace.

He’s always shown signs of OCD in addition to the “normal” perseveration that autism brings, but when he turned eleven, and puberty came to call, his symptoms worsened. So began a more than two year attempt (including a stellar BCBA and a number of medications) to help him quell the obsessions that made him so unhappy, and quite honestly, wreaked havoc on our lives.

In December (right before the holidays, the Christmas miracle!) we hit the jackpot with not only the right med but the right dose. The OCD is still there, but it no longer takes over his life, robbing him of the things he enjoys. It was truly the first time his father and I felt we could breathe in a very long time. Our son changed into a much happier person, once again the loving, affectionate bright-eyed boy we knew.

And if truth be told, I realized that during this latest long “siege,” I’ve changed too.

Justin was diagnosed with PDD at seventeen months, which was incredibly early thirteen years ago. Honestly, I think I knew he was autistic at six months- the spinning of everything he could get his hands on, his aversion to even leaving the house (or being out of my arms), his reflux, his inability to sleep, and his general discontent with the world were clues to me that something was different about my boy’s development. I brought up my concerns to our pediatrician who took a wait-and-see attitude, given both his young age and my husband’s own not-so-typical development. In my mother’s heart I think I knew however, and sadly, what I mostly remember from his six-month-mile-marker to his seventeenth month was a feeling of overwhelming dread.

At sixteen months, at a sick visit, our pediatrician shoved a bunch of articles with the word “autism” in the titles into my shaking hand with an admonition to see a developmental pediatrician, and practically pushed us out the door. I can remember driving to the pharmacy to fill the prescription for yet another round of reflux, can recall my trembling hands as we sat in the parking lot, my son making his discontent known, then calling my husband and my mother. I physically had to tell them, couldn’t even wait until I turned in the scrip and drove the few short blocks to my home.

The truth was, underneath the despair, the “how can this happen” to the boy we’d endured multiple IVF cycles and several miscarriages for, was a thin sliver of hope.

Now his spinning, his insomnia, his out-of-sync behavior had a name. Now I could do something. Maybe I could help him to enjoy the world just a little.

And over time, with a gazillion hours of therapy and a lot of love, he did.

During the last thirteen years we’ve encountered many different challenges with Justin. The first time he slept through the night he was almost a year old. The projectile vomiting from his reflux followed us well into his third year despite medications, a diet change, and visits to a gastroenterologist. Potty training was a two part battle that was truly only conquered over a year after we started. On and off over the years our boy has been aggressive, sometimes without any discernible reason why. The OCD has been a constant challenge, as is going anywhere for more than an hour or two without our son wanting to return to the sanctuary of our home.

My husband and I addressed these issues one by one as they occurred, and I’m happy to say my now teenager is one of the happiest people I know. He loves school, loves his horseback riding lessons, loves his pretzels, loves his life. He still pinches us on occasion. The underlying OCD I believe will be his constant companion until death. We still struggle to get him to stay more than two hours anywhere other than Disney or Great Adventure (he has great taste.) In short however, we’ve been able to get him to change many of his behaviors, which has benefitted not only him, but our family too.

But the truth is, as I look back on that tired, devastated mom in the parking lot of a pharmacy thirteen years ago, I wish I could tell her to change her behavior too.

Back in the day, when Justin’s suffering was most acute, I took everything to heart. I made his chicken nuggets from scratch because he didn’t like any of the four gluten-free options I’d offered him. I did at least six hours of therapy a day with him for a year-and-a-half because Virginia’s model of Early Intervention was pathetic, and autism therapies were not covered under our insurance at that time. I often cried when he cried (which was pretty much all the time). I made everything “life or death,” forsaking fun, not taking care of myself, always stalked by worry.

I looked at his autism like it was a sprint, when in reality it is a marathon.

There wasn’t one day or one particular event where I knew that my son would retain the severity of his autism for life. It was a gradual “knowing” for me, one without the sharp despair of articles thrust into my hands, or even the relief the diagnosis given by our kindly developmental pediatrician brought us. At some point, I just knew. And I also knew I couldn’t continue at this crazy pace anymore, that an hour less of therapy every day would not make the difference for this boy as to whether or not he went to college, got married, or lived an independent life. These milestones were not to be his. I could not change this.

I could only change myself.

And I did. I began exercising again, eating healthier, taking breaks. I got a babysitter once a week and just plopped in our local Barnes and Noble and read non-autism related books. I stopped most of my internet searches. I began seeing friends again, and even attempting a few play dates here and there. I realized that autism is cyclical- that there will always be “something,” just that that “something” will change over time. I began to breathe again.

I began to live.

When there are “lulls” like we’re in now I enjoy every moment, try new things with Justin, get out of my house more. I know difficult times are likely to return- I don’t delude myself about that.

If I could go back to that parking lot or counsel any parents new to the diagnosis, I’d tell us all this. There were many dark years, yes. But even during the most difficult times there was progress to cling to, a smile to cherish, my boy’s indomitable love for us on display. With years of hard work, persistence, patience, and love, things did get markedly better for our family.

And I can’t promise you this, but they may get better for you too.


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February 21, 2017

Best Laid Plans

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 2:22 pm by autismmommytherapist


We turn into the driveway of the church parking lot accompanied by the slight whine of discontent of my eldest son, who I am certain would rather skip this detour and head for home. My youngest is peppering me with questions- “Mommy, what year did you and Daddy get married?” and “Was I here?” (nope, not even close), and with his usual enthusiasm he embraces our little side trip, eager to see inside the place where it all started.

We get the kids out of the car and bundle up against the frigid, windy day, hiking up the hill to the small white building waiting for us, explaining to Zach that most likely it will be locked and we’ll only be able to peek in the windows. I share with him that many of his relatives are buried here and he immediately wants to see them, but Justin once again makes his displeasure known and I continue to hustle them up the flagstone path.

It is closed to us as we expected, but I am able to point out where my fiancé and I stood to make our vows to one another, am able to show him where his relatives sat, how solemn and beautiful is this sacred space. Just as we are about to turn away the minister hails us from down the hill, and as he approaches we tell him we were married here and ask to go inside.

Luckily he has the key, and after a short lecture about the history of the church we are left to roam. Justin settles himself in a pew as my other son and now husband wander around, and I step up to the altar where I stood twenty years before, my thoughts turning back to the joyful life I’d thought I’d lead. I’d believed it would transpire in DC, with a career that would progress from teaching to administration. It would include two kids sometime down the road, and hopefully some continuation of the path we’d built for ourselves which included travel, friends, and all the culture the nation’s capital had to offer. My vision was of a simple life filled with love, family, friends, and laughter, nothing extravagant.

Things didn’t quite turn out as I’d expected (understatement of the century).

We did have those two fabulous kids, but the career and DC were shelved so that I could do thirty hours a week of therapy with my toddler and the location shift was for better services and to be closer to family. After fifteen years in Virginia we had to reinvent ourselves in New Jersey, living not far from my old stomping grounds but far enough to have to start over.

Frankly, nothing worked out as I’d planned.

My Plan A was shelved for Plan B (and honestly C and D often came into play too). I traded working and mothering for hours on the floor begging my eldest boy to make a sound. I relinquished Mommy and Me to navigate the murky waters of Virginia Early Intervention. Playdates in the park were put aside for training sessions, internet research and making gluten-free chicken nuggets from scratch so my eldest son would eat.

The landscape of our lives looked nothing like I’d thought it would.

Two years after relocating, after a year-and-a-half of the absence of all the signs of autism our eldest had displayed we watched our youngest regress, relinquishing his precious words, losing the light in his eyes. This time at least we had help, and I reveled in the novelty of having trained personnel to help me coax my son back, praying to see his ebullient soul once more.

In time, he returned, altered, but still irrevocably, beautifully, him.

If anyone had told the girl standing so expectantly at that altar that at fifty she’d be a stay-at-home mom with two autistic kids living large in the Garden State, I’m sure she’d have laughed.

You see, that so wasn’t the plan.

But we all know the saying about the best laid plans.

My husband and I now have two autistic kids in double digits, one who will need lifetime care, and one who will care for himself.

Between the two boys together we have endured their insomnia, sensory issues, and aggression.

We have seen milestones quite different from the ones we expected achieved and celebrated, and have learned to let others go.

We have witnessed the loss of language, and its heralded return.

We have watched with almost unbearable pride how our boys have mastered many challenges, both with strength, and grace.

We have held each other and cried from fear for their futures.

We have held each other and cried tears of joy from who they’ve turned out to be.

This life was most definitely not the plan.

But there is beauty here, and solace in the sanctuary we’ve been able to provide the boys so they can become their best selves, whatever that will be.

There is still family, friends, and laughter.

There is love.

I turn to embrace my son as he leaves the confines of his pew, and for this former blushing bride, it is enough.


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February 13, 2017

100th Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 2:31 pm by autismmommytherapist


It came home in your folder today, the flyer with the fun graphics from your even more fun teacher touting “100 Day,” where you are supposed to dress up like a centenarian. Within minutes I am rifling through your closet for a button down shirt and a tie, combing your dad’s closet for a suitable hat. You approve your future garb and I put it aside for the next week, moving on to more important tasks like feeding my always-hungry boys, one mildly autistic and one not-so-much, and for a time, the celebration is forgotten.

Later, as I’m washing my hundredth dish that day, I do the small amount of mental math I’m still capable of doing. Living to one hundred gets you to 2107. Realistically, at that point I will have been gone for more than half your life.

As I think of how much you still like to snuggle with me it seems impossible that there will come a day I will no longer be with you.

My goal is to remain alive and cognizant until you’re fifty, a goal which I try to attain by regular check-ups, exercise, and (sort of) limiting that wine intake. My mind stretches out over the next four decades of your life- I hope there is a lovely wife, at least a few of the five kids you’re planning on (remember hon, they’re expensive), friends, a career and independence. If I blur the edges a little I can envision you as a husband, a father, a grandfather. I think how much your boundless enthusiasm for life and your eclectic interests will make you an interesting dad and grandad, how I hope these children I may meet when even walking is a challenge will appreciate you.

I know I do.

Of course, I can’t help but let my mind wander to your older brother being a hundred, and since at least on my side of the family our relatives live a ridiculously long time, that goal may be attainable. I’m hoping to make it to fifty with him too, see him settled in a good group home near his sibling, enrolled in a day program he loves, somehow able to get to those therapeutic horseback riding lessons he adores. I envision there will be frequent visits from his mom and dad (if we can still drive), and that in his own way he will one day be independent of me, although never independent of others.

And that’s where the anxiety creeps back in. I just can’t envision getting him from fifty to death without me.

I’ve written before about him making it to eighty and me to a hundred and sixteen, holding hands as he takes his last breath and I follow along behind him. Rationally I know this won’t happen (even giving up more wine doesn’t make that attainable), but God, I wish it was.

I brought him into this world, and with his need for constant care, I wish I could see him out.

I’m hopeful he’ll have his little brother to look in on him, but I know he’ll be busy with those five kids. They do have a bond between them but I can’t say they’re close anymore. When they were both little we could engage them in games together, but as Zach shed rolling balls back and forth for Star Wars trivia the gap widened, only to be truly breached at bedtime with our communal songs. I am certain my youngest will one day be busy with the trappings of a more “normal” life, may not even live near his brother.

It breaks my heart to think that one day you will be surrounded by people who may like you, but don’t love you.

Even as I pen these words I know for me they’re hypocritical. Although I’m a stay-at-home mom I’ve always been the first to tell friends that day care is not the devil, that there was no difference in the emotional stability of the three hundred kids I taught who’d had outside care or had been home with a parent. Kids need love yes, but maybe they don’t need to be enmeshed in love every single second of their day. Justin will be an adult when he enters a home, will have had decades of love and hugs by the time he moves out. Intellectually, I believe he will be okay.

But this quest for hundred year old garb has made me wonder about his future.

Who will take him to the successors of his fancy neurologist to make sure his meds are right?

Who will remember to spend extra care flossing that gap between the two teeth on the left hand side of his mouth?

Who will schedule (and dear God, do the prep work) for his colonoscopy?

Who will cuddle with my seventy-five-year-old and read him an Eric Carle book (I can guarantee he’ll still want that).

Other than his brother, who will love him?

How do I exit from his life? Do I spend every last possible minute with him, or fade out slowly as it becomes apparent that my time is drawing near?

Hell, will I even have a choice?

When I’m gone, will he miss me, or will the differences in his brain allow a quick fade of attachment?

Yup, being selfless for a moment here, I’m hoping for the latter.

Things have improved lately chez McCafferty. After a long bout with extreme OCD my son’s obsessions seem to have been quelled somewhat, giving us a more “typical” life at home, for which my husband and I are extremely grateful. My youngest is thriving.

We are a happy family. I am happy.

But I share with you that for any family looking toward the future with a severely disabled child, there is always that unknown of what’s to come lurking there, obdurate in its tenacity. Even on a good day, and there are many, my concerns for his future are always with me. On most days I’ve shelved this worry for my sanity, but I know it will always be there. It is perhaps the one thing I am certain of with this life.

And if I make it to one hundred and I still know who I am, I’ll carry it with me too.

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