November 22, 2017

Word

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:19 am by autismmommytherapist

He snuggles contentedly on my lap, my severely autistic nine-year-old son who loves his evening storytime with Mama. This is a ritual we started seemingly moments after he was out of the womb, this reveling in words, a sensory sanctuary for my boy as he rests securely in my arms. Justin has always loved books, still does to this day.

The apple doesn’t fall far from the tree even with severe autism.

Justin’s favorite author is by far Eric Carle- he has an entire bookshelf dedicated to the man’s works. Every night either he or I chooses one, and we settle in on his glider to read a story I know he knows by heart.

But I also know he can read those hallowed pages too.

Justin has hyperlexia, which enabled him to read sight words at three, and entire sentences at four (the autism bonus!), even though he’s on the severe end of the spectrum and non-verbal. One of his therapists actually discovered his comprehension when she put out an array of simple words on index cards, slowly increasing the field to twenty and even thirty words until we knew undoubtedly he could read. We used the Edmark program to further his learning, and at the tender age of four we knew he could read complete sentences because he was answering the questions correctly.

And yes, I was proud of both accomplishments. Yet there’s one I’m even more proud of to tell the truth.

For years I attempted to do intraverbals with Justin, stopping strategically during his favorite songs and stories to see if he’d “fill in the blank.” Each time I was met with silence. I knew he knew the correct word, but his apraxia was his silent roadblock to participating. By the time Justin turned nine he had a few words, “Mama,” “Dada,” “juice,” but he rarely made mands or requests with his voice, preferring to use his communicative devices which ranged from sign language to PECS to Proloquotogo on his iPad. It has always been my dream that Justin would at least acquire some functional speech. I wish this because devices can’t always be trusted to work, and since there will be dozens of people who care from him throughout his adult life to death I knew I’d feel (slightly) better about leaving him someday if he could communicate simple wants through speech.

And my gut told me the way to open that floodgate was through stories and song.

This night as I settled into our chair to read “Baby Bear, Baby Bear, What Do You See” was just like any other night. Every other page ends with the refrain of “What do you see?” and as usual, I paused prior to the last word, hoping my boy would fill in the gap. The first few pages I was met with silence.

And then, about midway through the book, I heard his faintly audible “see,” and watched as he turned to me with a big grin. This word was out of his lexicon of “Mama,” “Dada,” and “juice.” He looked utterly delighted with his accomplishment, and continued to fill in the last word for me on every subsequent page.

I can assure you his mother was just as delighted.

Years later, he is not only filling in words for me, but has moved on to master complete sentences. As Seinfeld would say he is a “low-talker,” and many consonants are still difficult for him. I have to be close to my boy to hear his attempts, and most people would not be able to distinguish many of his syllables. But he can share his love of literature, and does the same with the songs we sing together too.

And as I suspected, he vocally mands more frequently now too, a fact for which I am eternally grateful and proud.

Don’t get me wrong. I’m proud that my boy can read. I suspect some people on the autism spectrum never master that skill, and I’m grateful he has it. But the truth is he has the innate skill for it and it came to him easily. He never had to struggle.

For his wonderful words he has had to work far more diligently than any of us can imagine.

I’m proud of him for perservering against his apraxia. I’m proud of him for struggling for victory.

I’m proud of him for filling that silence with the miracle of his voice.

I’m proud.

 

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November 14, 2017

Disney and Universal

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:59 am by autismmommytherapist

It’s that time again folks- time for my post-mortem on our semi-annual Disney trip with the McCafferty clan.

Spoiler alert- it went great.

Just in case someone’s eyes are starting to roll in a “nice that they can afford this” way, I will send a shout out to Grandma who paid for most of this trip, and to whom we are all eternally grateful that I even have the opportunity to take my kids on vacation.

And while I’m being thankful, I must include Justin.

This year we changed things up a bit and went to Magic Kingdom one day, and Universal Studios for two days. We had never been to Universal before, and to tell you the truth I held my breath on this one, as sometimes new things are not Justin’s forte.

Yup, even when that something new is an amazing amusement park.

I will share with you all here that he was magnificent. I will also share with you all that I had practically every minute of our three day trip planned for maximum “Justin enjoyment,” which was absolutely necessary. I knew where we’d eat each day and what time. I had a plan B that included half our group with a planned itinerary of what to do if Justin found the Harry Potter attractions to be of no interest. I had sketched out which rides and attractions we’d probably do and in what order. I even built in bathroom breaks.

In other words, I was in my A-type glory.

And it worked. At Magic Kingdom we used both our fast passes and the disability program to piggy-back rides all day, and because the park was not crowded we were able to go on about ten rides in under seven hours. Justin is okay waiting on short lines- what he’s not okay with is wandering around waiting for his ride wait time to come up so he can get on the fast pass line, which is how Disney’s disability program works. Fortunately because the park was not crowded we were able to fit in a ride or two in between our different passes, and we never had to wait just to get on line.

Taking in the sites is also not Justin’s forte.

We had the same success at Universal, but I will tell you that the real reason we were able to enjoy the trip and I was able to see the joy on my youngest son’s face when he visited Diagon Alley and Hogsmeade was Justin. Our first two trips to Florida were somewhat rocky with him, ranging from issues on the plane to sleeping to asking to go home every two seconds. This year it was as if the gods aligned for everything to come together. Except for the first night Justin slept as well as humanly possible in a bed not his own. He wasn’t ill. He waited. He was patient. He didn’t try to escape activities that held no interest for him.

I know. I need a moment for that last sentence.

And I will tell you this. Disney/Universal are really the only places we can go on a family vacation where Justin will be engaged, and not hanging out in our hotel room pacing all day with a frustrated adult in attendance. Vacation spots which would hold great interest to most families hold none for my boy- it would not even be worth the money to try. The truth is I want this family to have vacation memories too, despite the risks taking Justin on a plane, despite the uncertainty that he’ll sleep, despite the unknown of whether or not he’ll enjoy himself. I always feel a lot is riding on these trips- the chance for Justin to try a different environment, and just the plain old opportunity to have fun.

Remember fun folks?

There are so many factors that went into making this trip successful. Planning. Good weather. Fairly low attendance at the parks. Justin’s innate desire to have fun. His ability to wait.

His ability to be somewhat flexible. I know, can’t believe I wrote that one down either.

All of the latter reasons have come about because of so many different reasons, but I believe we had a successful vacation is because from a very early age, even when it seemed impossible, we exposed Justin to different places, and made him learn how to wait. I will tell you that I have little half-moon scars from his tiny teeth on my shoulders from way back when where Justin expressed his extreme displeasure at being somewhere most kids would decide was fun. His teachers, father and I persevered, and eventually I had a kid running up to me with sneakers in hand (often at inopportune moments like Christmas or 8:00 PM) begging to go out. It was years before this happened.

And it was worth every grueling moment.

The point of this missive? Get out. Have help if you can. Have a plan B, C, and D. When people offer assistance take them up on helping you take your child out on an errand, to a meal, to something that ostensibly should be fun. I will tell you that leaving the house with Justin was soul-sucking hard for years, and now it is mostly a joy.

Yup, I said joy.

My final piece of advice?

Get out, and don’t give up.

 

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October 25, 2017

So Many Questions

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:48 am by autismmommytherapist

I feel his tiny teeth before I see him lock down on the soft flesh between throat and clavicle, and I try not to wince as I attempt to disengage him while carrying on a conversation with a woman with two toddlers in tow. “He’s autistic” I say after she’s come over to me in the sober halls of the museum we often frequent with success, has noticed my struggle with my six-year-old and has offered to help. I see sympathy chased with pity flit across her face as I eventually free my bruised skin from my son’s clutches, thank her for her kindness, and move toward the exit with Justin in my arms.

We’ve lived half a decade with this diagnosis, he and I. I’m growing tired of explaining it.

There have been so many questions over the years. “Did he have it from birth?” (yes, thought it was colic). “Does anyone in your family have it?” (Technically no, but the jury’s still out on that one). “Did he get it from vaccines?” (Not even going there). “Will he grow out of it?” (No, it doesn’t work that way). “Does your other child have it?” (yes, but a different kind, go figure).

So many questions, so little time.

If I did have the time in these encounters, which I rarely do with my severely autistic son, I could educate these strangers with their generally polite queries about autistic disorder, and the different ways it’s affected both of my sons. I could talk about the spectrum, and trot out the old “If you’ve met one person” adage to elaborate on how differently each individual presents. I could talk about theories of misconnections in the brain, of cell phones and viruses and hell, even circumcision, as ideas touted as to the origins of autism. I could spout statistics about how many autistic adults eventually speak and how many need lifetime care, what percentage of the population has it, and the differences between the one where the child shows signs at birth and the one where your seemingly neurotypical toddler seems to vanish before your eyes.

So many of these facts ingrained on my soul.

None of them really get to the heart of what autism really means for my family.

But if I had the time for a chat, hopefully with a sitter and a little coffee and chocolate thrown in, this is what I would say.

Autism means embracing an altered landscape of living for both of my sons.

Autism means learning to communicate with my eldest son with a look, a hug, the ability to almost read his mind, and sometimes forgoing words.

Autism means pushing my children to be the best they can be, living their dreams, not mine.

Autism means losing a lot of sleep.

Autism means learning to live with knowing I won’t be around to protect him forever.

Autism means never getting over it.

Autism means making the most of every moment we still have.

Autism means patience, and kindness, failure (mine), and vulnerability.

Autism means reveling in every success no matter how small in a way I would never have if my kids were neurotypical.

Autism means sometimes struggling to keep a marriage alive.

Autism means always having a plan B, C, and D, wherever we go.

Autism often means exhaustion.

Autism means accepting that everything I took for granted, every minute detail about raising children, has been turned upside down.

Autism means isolation.

Autism means cleaving to those who “get it.”

Autism means financial hardship.

Autism means embracing what gives them pleasure and sharing it, even if it’s a Baby Einstein video for my teenager.

Autism means meltdowns and fear and frustration.

Autism means unmeasurable pride at successful outings.

Autism means being part of an unbreakable community.

Autism means days that are soul-sucking hard, and days that are brilliant with connection.

If I had that time, I would tell those inquisitive souls autism means struggle, and accomplishment, sadness and joy.

I would tell them for me it means embracing every inch of who my boys are, and always striving to unearth their best selves.

And as I finished that last crumb of chocolate, I would tell them autism means never giving up on attaining happy, healthy, and safe lives for our children.

 

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October 20, 2017

Dear Kim

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:51 am by autismmommytherapist

(Editor’s note: this is the letter I would write to myself if I were an old lady telling my younger self things would be okay, even after both boys were diagnosed with autism)

Dear Kim,

Hi hon. I want you to know, I see how exhausted you are. You just got your severely autistic five-year-old settled into your district’s kindergarten program, and what a long five years it’s been with him, even with all the progress he’s made. I know you thought you were home free with your youngest boy, the one who made all his milestones on time and has been babbling up a storm, the one who your pediatrician says is “fine” when you make your anxious inquiries. I know you went on a much-deserved vacation and came back to a sick toddler who’s stopped speaking, has a rash all over his body, and has lost the light in his eyes. I know you’re thinking that Justin showed signs of autism as early as six months, and this baby didn’t until this week. I know you know what the doctor is going to say when you take him in for that appt., the myriad phone calls you’re going to have to make, the Early Intervention program you’ll have to create for him. I know how much work this will be for you, once again.

I know you’re wondering how the hell both of your kids could have two different kinds of autism.

It must seem impossible to you, how you’re going to manage, how you could possibly create a life where you meet the needs of both your boys. After all, Justin is still potty-training (so much fun!), still “learning” how to sleep through the night, and still refusing to eat anything other than a carb on most occasions. There’s still his meltdowns to deal with, your need to create plans B, C, and D whenever you take him anywhere.

There’s still the enormous amount of time he needs you, and the depth of that need.

You comfort yourself with the fact that your oldest will be out of the house for seven hours a day so you can focus on your youngest’s needs, and believe me, that time will save you. Despite your exhaustion you will be able to manage the eleven different people traipsing through you house for the next fifteen months (you should have been a party planner, your attention to detail from being a teacher will come in handy). You will be grateful that at least this time you live in a state where there is actually an Early Intervention program that doesn’t expect you to do it all yourself (sorry Virginia), and these practitioners will truly help your child. You will spend more time with them than your own husband.

And a bonus; two of them will become good friends.

I know you are mourning quietly in your few moments of solitude, because that’s all the time you get. I know this experience with Zach is so different than what happened with Justin, because somehow around the time your oldest was learning to sit up you knew he was different, and sensed his difference would be challenging. I know this gave you time to ease into his diagnosis.

This time you went away and came home to a different child, one who seems to have most of the joy sucked out of him. You wonder if you’ll even see that spark again. You wonder if he’ll ever say “mama” again.

You wonder if he’ll ever be happy.

I want you to know that I see the strain, the way your husband believes your little one will “come back,” and how you just can’t allow your heart to embrace that idea because the alternative is too painful. I see how your heart will love them both no matter what, but how much you wanted at least one to live an independent life, and how that dream may now be shattered. I see you both mourning the now and the later, acknowledging that you will have to wait and see what happens. I see that is perhaps the most difficult part for you, planner that you are.

I see you desperately wish someone would just end your misery and tell you how it all turns out.

I can’t tell you the ending; I can’t even tell you the middle. But I can tell you that you will make it through those early years, the ones where your entire existence is therapy, chores and the anxiety that takes up permanent residence in the recesses of your brain and claims your sleep. I can tell you that your attention to detail, your refusal to cut corners, and the decisions you make regarding school placements, diets, and therapists will pay off.

I can tell you that your eldest child will one day not only sleep through the night almost every night, but will joyously welcome slumber.

I can tell you your eldest child who hated the car and going anywhere for more than thirty-two minutes will now revel in your excursions, and bring you his sneakers in a plea to go out.

I can tell you this same child now eats lettuce and broccoli with gusto (and yes, you wanted a medal).

I can tell you your youngest will not only speak in full sentences again, but will keep you running to google to answer the vast amount of questions your old brain no longer has the answers to.

I can tell you your youngest will have friends, will enjoy a wide array of activities both in and out of school.

I can tell you a few years from now you will have no doubts about his ability to lead an independent life, and to look out for his brother when you’re gone.

I can tell you both boys will regain their happy, joyous souls.

I can tell you that you will once again sleep (albeit it’s “old lady sleep”).

I can tell you your daily life will still have its struggles, but they are mostly outweighed by its joys. I can tell you your life will always be shades of gray, some mourning of what could have been, some acceptance, and always some celebration of what is and what will be.

I can tell you that you will have a happy family, the dream you held onto all those years you struggled to create one. It will look different than you expected. There will be challenges you could not have foreseen.

I can tell you your profound love for them both will make a difference.

I will tell you, a happy family it will be.

And for you, it will be okay.

 

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October 2, 2017

Shades of Gray

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:58 am by autismmommytherapist

It was a simple question, asked at a party of people I hadn’t seen in years. “What grade is Justin in now?” was the query, but the truth is I had to stop and think about it because they don’t really do grades at his private autism school. “He’s in ninth” I replied, and we moved on to talking about our other kids and people we had in common. Soon a friend of my friend captured her attention, and I was left for a moment alone, with chicken on a stick, some good pinot grigiot, and my thoughts.

Ninth grade. High school.

My boy is in high school.

One would think that realization would have occurred to me in August, not September after he’d already been back in school several weeks, but honestly the end of August/beginning of September is such a blur I’d only been able to retain one kid’s grade (5th, so proud of myself), and hadn’t really given much thought to such a momentous leap on my eldest’s part. As I savored my poultry and looked around the room the enormity of his age, his maturity (and mine) hit me.

If he wasn’t severely autistic, in three years he’d be going to college like all the children of everyone else in this room who had their progeny at a decent age.

I won’t lie to you, this realization hit me like a ton of bricks. Since my other child is younger than Justin I haven’t yet been a high school or college mom, so I’ve only watched vicariously as my nieces and nephews and friends’ kids have gone off to the big time. I’ve hugged the parents of those children, reassured them that they are fully “cooked” and will do fine. I’ve consoled them when empty nest syndrome ruled the day. I’ve listened to their fears and concerns (will one ever sleep, will one party his tuition away), and have reinforced my feelings that their kids will be okay, they’ve been given the tools to move on to their (more or less) independent lives.

An independent life. That was the brass ring for me for Justin’s hoped-for progress when he was diagnosed at seventeen months a decade-and-a-half ago, and it’s been the hardest thing for me to relinquish in my dreams for him.

Don’t get me wrong. Sometimes I’m sad that he’ll never go to the prom, attend college, have a career, or get his license (okay, maybe not so much that one) too. I will probably mourn these things my entire life, not because I want to relive these events through him, but because I know they would have brought him pleasure. I have read articles over the years chastising parents for feeling this way, and to that I literally say “phooey.” These events are precursors to finding love, learning skills, and the holy grail, independence.

It’s okay to be sad sometimes.

But the truth is my sadness is tempered by the fact he will never know what these things are, and won’t miss what he doesn’t know. My boy revels in routine, in having his mom greet him when he gets off the bus, in making him his expensive pretzels, and singing him the same three songs he’s listened to since babyhood. He’s happy, gloriously so.

And trust me, having a severely autistic teenager in the house who’s predominantly happy is the holy grail too.

I’ve learned to shelve my fears over his future both so I can function, and because I choose to enjoy my present life, which despite the challenges of raising an autistic child is pretty great. I don’t want to miss a moment. He is joyous, and safe. He loves his life.

And for that, I am eternally grateful.

Being a caregiver to a disabled person is rewarding, and challenging, fulfilling and grueling all at once. My husband and I don’t know if we’ll be doing this full-time for twenty-five years or fifty. We struggle with determining what we think will be best with Justin, all the while knowing we may not have many different options for his lifetime care. I struggle also with figuring out what’s best for me- I seesaw between a need to regain my own independence and keeping him with us until the last possible second. I’m not sure what’s best for us.

More importantly, I’m not sure what’s best for him.

I’m hoping the decision becomes crystal clear for me down the road, revealing our best option like a good series finale that answers those questions you’ve been carrying about for seven seasons. I don’t yet know what I’ll decide.

But I do know this.

My youngest, who is mildly autistic, has a great shot at college, a career, a wife, and a life away from his mom and dad. Will I miss him when he goes? Absolutely.

Will I revel in the fact that he can leave? Absolutely too.

Will I forever mourn and simultaneously just deal with the fact that Justin will always need help to make it through the day? Yup, that too.

Our decisions are not clear cut. Our feelings don’t have to be black and white.

I’m pretty sure for a good long time I’ll be dwelling in shades of gray.

 

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September 19, 2017

Enough

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:09 am by autismmommytherapist

I still remember the day I knew my autistic son would remain on the severe end of the spectrum.

Justin was five, and in the last few weeks of his pre-school program before he would transition back into district to his hometown public school. I recall going to his classroom for some type of program, the theme of which escapes me, and seeing a little blond haired girl he’d started with almost two years prior who had presented almost exactly like my boy. I remember watching as this young lady used words to get what she wanted, made eye contact with everyone around her, was able to sit still while waiting for the show to begin. She still flapped her hands as she waited, but none of the other stims I’d seen her do when she began school at the tender age of three seemed to have remained with her. She was joyful, talkative, engaged.

She no longer bore any resemblance to my son.

I recall how the realization hit me like a wave, starting in my gut, hitting me hard in my heart and flooding my eyes with tears I had trouble keeping back. My boy had been diagnosed at seventeen months, back when that was unheard of. He’d been in either a thirty hour a week ABA program or full day pre-school for three-and-a-half years. Had he made progress? Absolutely. He had gone from using meltdowns to get his needs met to using the PECS system very successfully to acquire what he wanted. He had finally learned how to sleep through the night (my favorite of all his skill acquisitions). He was eating things that didn’t fall into the carb category, and we’d finally found ourselves able to take him places with varying degrees of success. Potty training had been (mostly) conquered. His life, and by extension, his parents’ lives, were so much easier than those dark days of his infancy when we didn’t know how to make him happy, and his toddler years, where almost every aspect of his life was a struggle.

But still, there was so little eye contact unless it was with us. He still spent a good deal of time unhappy and at odds with the world around him.

There were still no words.

I remember watching the program with an overwhelming sadness, with hope waging a steady war with reality inside my head. Part of me said he was only five, how could I possibly predict the trajectory of his life at such a tender age, particularly when I knew he was bright?

But the truth is, I just knew. After all, I had another autistic child at home who had regressed at twenty-one months, lost all of his words, and had retreated into his own world. Within three months of therapy he was speaking again, and while different from the child we had known before, we watched as every day he made tremendous progress in regaining the skills he had lost, showed an increasing interest each day with the world and the people in it. All of his Early Intervention therapists were amazed at how quickly he progressed, touting him as an “early therapy success story.”

And I remember thinking fiercely as I drove home that day that despite the modest gains Justin had made, I considered him a “success story” too.

I admit, after my realization I mourned again, as I had when he had been diagnosed, and I knew from my prior teaching days exactly what he and our family were in for. I had never wished him off the spectrum- I didn’t believe it was possible frankly, and I had taught plenty of students with mild autism who had wonderful and fulfilling lives. Over time I accepted he would not have the life I had assumed he’d lead- the one with friends, and driving, and college, and sleepovers, and someone to love- and the one that was hardest of all for me, independence.

It’s his inability to lead an independent life that still lays me low today.

Over time, my premonitions about both boys turned out to be right. My youngest is now fully mainstreamed in a non-inclusion class, and shed his 504 this year. He has friends, participates in activities within and outside of school. He talks about his future wife and five kids, and my heart never clenches as I anticipate he will realize that dream someday (hopefully with a well-paying job to go with it).

My gut tells me he will be able to care for himself after I’m dead. For this, I am eternally grateful.

Justin will not. And I know, as I know I will never give up eating chocolate, that I will never get over this aspect of his disorder.

The truth is, I haven’t made my peace with it, and I expect I never will. When I think of the enormous amount of details that go into keeping my now teenaged autistic son happy and the dozens and dozens of people who will be charged with caring for him until his death, I am overwhelmed. The thing is however, his father and I and many, many, many other people have been able to craft a wonderful life for him, the one that he wants, not the one we wanted for him. Justin adores his school. He loves going places for short periods of time, and has a number of locations in his repertoire. He gives me more hugs and kisses than any teenager gives his mother on the entire planet.

My dreams for this level of detail to exist for the forty years he’ll be there without me will probably not be realized- my rational mind knows this.

I haven’t made my peace with having him live on this earth without me, but I have made my peace with this. I’ve let go of what I thought he’d need, and accepted what he does need. He needs his autism school. He needs his mom, his dad, and his little brother. He needs exactly fifteen pretzels nuggets daily to fill his tummy. He needs access to the computer so he can “drive” on the Hertz rent-a-car site (he’s been all over Jersey!).

He needs affection, and hugs, and love.

Don’t we all.

So I’m trying, and I am a work in progress, to dwell in the now, not in the later. My “now” is two ridiculously happy boys on the spectrum, who revel in their lives, one on the severe end, one not. They love school. They have activities that engage them. They relate to and adore their families. Both of them love their pretzels.

They are happy.

And for now, I am trying very hard for that to be enough.

 

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September 5, 2017

Dear Zachary

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 9:50 am by autismmommytherapist

Dear Zachary,

If you’re reading this letter then your Dad and I have gone to the Great Beyond (not happily, but you know, death and taxes), and of course I had to leave something behind for you.

I always enjoyed having the last word.

First, let me say what a joy it was to be your mom. You were an intelligent, compassionate, funny kid who grew into an intelligent, compassionate and funny adult (your jokes always slayed me), and your dad and I were so proud of who you became. We loved watching you mature, adored your wife (I would have picked her too!), felt so fortunate to watch your children grow to adulthood.

Being their grandma was almost as incredible as being your mom.

I know every decent parent is proud of their child, but I was particularly proud of you. You overcame many obstacles when you were little, from the autism that initially robbed you of your words to the ADHD which made it so difficult for you to focus. With time, hard work (and I like to think a dash of good parenting) you grew into a young man for whom autism was a gift, not a burden. You are proud of who you are- that may be the thing I’m most proud about you too.

I know, I drove you crazy saying this every day, but you truly are awesome.

I know we’ve had many talks about your brother and you may be feeling like this letter is overkill (you often said I repeated myself too often and it drove you crazy, that’s what you get when you have an old mom), but I felt I needed to put a few things into words, so here goes.

First of all, thank you for being such a loving little brother.

I know you two didn’t have a lot in common growing up. I know you wanted a brother or sister you could play with or talk to (you were my miracle “old mommy” baby, sorry but a third child was never in the cards), but you were amazing with him none-the-less. I appreciate the concern you always showed him (even when you told me you thought I was doing something wrong), and your patience when his wants and needs affected your life. I like to think he taught you compassion and patience, so I don’t believe the “good brother” thing was a one-way street. I think you are even kinder in your world outlook because of him, and while you were a gift to him, he was one to you too.

To the depths of my heart I hope you believe this too.

So I’m writing to you today to ask you to keep up that little brother role where you excelled. Your dad and I did the best we could for Justin. We believe the group home we chose for him affords him a safe place to live, and his day program is about as good as it gets. Somehow we were able to craft a good adult life for him, a fact for which we are eternally grateful. However he will still need your supervision, occasional interventions, and your visits.

He will always need your love.

In typical “Mom McCafferty” fashion I’ve left you a list of things I’d like you to address over the next (hopefully) forty years. There will be clothes to buy, and doctor visits to book. There will be body checks to make sure nobody is hurting him.

There will one day be a colonoscopy. I’m hoping they come up with a stunning alternative to that. Good luck.

Mostly my dear son, I simply hope you’ll visit him often (bring food, the people taking care of him are underpaid, they deserve it). I know he didn’t play with you all the years you lived together. I know he never asked for you, or offered to share something of his with you, or even said “bye” when you left the house.

But I know he loved you, from the simple fact of that smile that stretched a mile wide whenever he saw you when you’d been apart, that special smile reserved only for you, his mom, and his dad.

Trust me, it exists.

The truth of the matter is I loved him Zach, just as I loved you from the depths of my soul to my often overburdened heart. I was just as proud of him as I was of you, for conquering his aggression, his sleep and food aversions, to his ability to finally let his ebullient, peaceful nature eventually shine through. I loved him for his hugs that wouldn’t quit and his playfulness with those in his inner circle.

I loved him for his smile.

I loved him with a passion, the way I love you. I have a feeling the strength of it survived my death, and hope you’ll always feel it with you.

I know you’ll be busy, what with the job, the wife, and the grandchildren you’ll be having soon (with five kids you’re almost guaranteed), but please do your best with him, and know your dad and I appreciate it from beyond the grave.

Yes, I’m being dramatic. Along with the last word, I enjoyed that too.

Know I adore you, and remain forever in your heart. You summon my love every time you hug your kids, kiss your lovely bride, or do a good turn for someone in this world. I could not have been more proud of you. I love you, my sweet boy.

Thank you.

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August 22, 2017

The Cure

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 9:42 am by autismmommytherapist

There is so much that is contentious in the autism community; cell phones, vaccines, circumcision causing autism (no, I didn’t make that one up). Even among the issues that create conflict among our group however one question ultimately stands out.

I’m talking about the cure. And not the fun band I’m old enough to have listened to.

I’ve read beautiful treatises arguing both sides of the white picket puzzle fence. Some of the pro-cure people advocate this treatment at any cost, even if it removed their child’s autism completely. Some parents on the other side of the fence say they’d never give their child the “magic pill” because it might strip them of their identity and make them lose their autism.

Not that a magic pill is forthcoming any time soon, but who the hell is right if there were?

I have a hard time believing any pill could eradicate my sons’ autisms (and yes I use the plural on purpose, they are just that different). I do believe their brains are wired differently, and don’t think a pill could change that underlying neurology. I’ve read many beautiful blog posts by other parents who would beg to differ from me, who claim their children would be forever altered, would lose the essence of who they are.

My question to them is, how do you know?

Truth be told, I’ve only ever had two major issues with autism, and both of them relate to my severely affected child, not my mildly affected one. The first deals with the fact that my kid on the severe end of the spectrum has really, truly suffered. There have been sleep issues, gastroenterological issues, eating conflicts, and hell, just plain will-he-ever-be-happy issues. I have read where some parents say “blame the co-morbid disorder, not the autism,” but that has never sat right with me. Maybe the OCD that often torments my kids would not even grace our presence if he didn’t have autism to begin with. The alphabet soup of ASD, OCD, and ADHD may never even have taken up residence in my kids if they weren’t born with autism. I just happen to believe that if your kid is suffering, even if it’s autism, even if it’s not politically correct to go there, parents should want to alleviate that suffering however they can.

That’s just me.

My second issue with not slipping my severely affected kid that pill is that I will be dead for probably close to half his life, and not around to protect him unless I can haunt him from the grave (I’m working on it). If statistics are true he has a large chance of being molested, injured, or raped during his lifetime, and frankly I’m not at peace with those odds. It’s not his being non-verbal that bothers me- it’s his inability to be independent, to stand up for himself, to self-protect. If he could never speak a word but be able to fend off anyone trying to hurt him I’d be completely at peace with his type of autism.

Since I don’t see that happening any time soon, I’m not.

I’ve never had an issue with my boys being autistic. It’s not that I’m so evolved, it’s that I had autistic students when I was a teacher, and many of those kids led just as happy and fulfilling lives (if not more) than their neurotypical peers. My kids are unique and interesting, and I love them to death. I don’t want to strip them of anything that is fundamentally theirs.

But I’ll tell you, if there was a medication I could give my son that would enable him to live on his own and take care of himself so I’m not freaking out on my deathbed, well, sign me up.

And yes, I know this post will piss some people off.

I want my boys to be happy, loved, and safe. Whatever brings them that trifecta is alright with me.

 

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August 8, 2017

I Believe

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:35 am by autismmommytherapist

The other day in my seventeen minutes of free time I happened to run into Barnes and Noble, and as usual I headed back to the kids section to see if anything new was out. As I perused the shelves of books ranging in subject from ADHD to bullying my eye stopped on the autism shelf (yes we merit our own shelf), and I had to laugh. Sitting right next to Jenny McCarthy’s Louder than Words was John Elder Robison’s Look Me in the Eye.

This may be the only time in recorded history that these two individuals will ever be close together on anything.

The placement of the books brought to mind the many divisions that still exist within the autism community. To vaccinate or not to vaccinate, ABA as a valuable tool or a torture device. Autism as a different neurology or brain development gone awry.

To cure or not to cure, that is the question.

And I realized as I stood there contemplating the fact that these two books were actually touching each other that I can honestly say twelve years ago when my eldest of two autistic kids was first diagnosed that sometimes I was confused about what to think, what to try with him to alleviate some of the very distressing symptoms that came along with his severe autism.

I find, more than a dozen years later, I am no longer conflicted about much anymore. Here is my “state of the union.”

I do believe autism is an alternative neurology.

I believe that sometimes it is a gift.

I believe it’s not a gift any time either of my sons suffers.

I believe both in assuming competency and being realistic. My eldest has intellectual disability. There are skills most of us have that he will never master. Accepting that does not mean giving up on him.

I believe that ABA done right can be an invaluable tool.

I believe ABA in the hands of the wrong practitioners, as with any therapy, can have disastrous consequences.

I believe my youngest is not disabled by autism.

I believe my eldest son is.

I believe to my dying day I will wish for a treatment that would enable my eldest boy to live independently, not strip him of his autism, but enable him to care for and protect himself.

I believe in my right to write about my family’s struggles and triumphs.

I believe autism often has severe financial, emotional, and physical effects on other family members as well as the individual. We family members need to take care of ourselves too.

I believe both of my boys are fabulous human beings and that the world has much to learn from them.

I believe in remaining open to everyone’s opinions, autistic or not.

I believe being autistic is not the same as raising an autistic child.

I believe most of us parents of autistic children are doing the best we can.

Most of all, I believe in supporting one another, autistic and non-autistic alike in an effort to help our kids be the best they can be.

I believe.

 

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July 25, 2017

I Want You to Know

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 12:31 pm by autismmommytherapist

Dear Care Giver to Justin,

If you’re reading this letter (and I so hope you are) it means I’ve never met you and never will, as I’ve gone kicking and screaming to the Great Beyond (wherever that may be). If you’re perusing this after I’ve just passed I’m sure your co-workers can tell you about me, as I was a staple at your group home, hopefully a help with my homemade chocolate chip cookies and my jambalaya (the only two things I make well) and my frequent visits to check up on my boy.

If you’re reading this thirty years after I’ve gone, I’ll have to believe my legend died with me.

I left explicit instructions to your predecessors about Justin’s lifetime care, hoped with all my heart they’d be honored, and at the very least that all those who care for him will read this missive from me.

It’s good to have hope.

You see, whether Justin’s fifty now or ninety-nine (it’s possible, his relatives have lived ridiculously long lives) I know you see before you a severely autistic man, predominantly non-verbal, with either OCD or just a really strong penchant for perseveration on the side (I gave up caring which it was during the Obama administration). He is fairly tall as was his father, and although now his hair is streaked with gray during his younger days it was a dark blond, like his mother’s before she got to the salon. The last time I saw him he still had a dimple on his left cheek, and his smile is transcendent, no matter what his age.

I know. It only took me four paragraphs to brag.

I want you to know although I love my son passionately I don’t have blinders on where he is concerned. Just so you know a little bit about me I used to teach before I had my kids, and nothing renders you more objective where children are concerned than a stint in the classroom. Justin is kind, and sometimes playful, and generally happy with his life. He is also stubborn, hyperfocused on getting his wants (not necessarily his needs) met, and his OCD (or whatever the hell it is) can drive a person to drink the good stuff.

See, I can be objective.

I want you to know that I am confident at times his care will drive you crazy. It may be that sixtieth pretzel he wants, or a DVD that just doesn’t work anymore that he insists on playing. He may want to leave after half an hour from the extremely fun place all his co-habitors are loving (which got you out of the group home for the day), and there may be no convincing him that a water park in August is more fun than his own living room.

Hell, you may be struggling just to get him out of the house.

Please know whatever manifestations of difficult you see, it wasn’t that his father, myself, and a thousand professionals didn’t try to ameliorate them. Back in the good old days of his toddlerhood (not really so great even with a half century of perspective) I girded my loins and took that kid places, with the half moons of his little teeth marks bearing witness to my pilgrimages. Sometimes I could barely get him in his car seat, but stubbornness like autism is hereditary (yes it is!) and I persisted so someone who weighed less than my right thigh (it’s the bigger one) wouldn’t keep me prisoner in my own house.

I have my limits.

I want you to know we tried. We finally got him to crave sleep (that one took a few years, yes you can thank me now), to eat things that weren’t carbs including two veggies (that one’s going on my tombstone, I am still so proud), to learn how to dial back some of the innate aggression that occurred when he didn’t get his way. We taught him to use a fork (okay, sometimes) and to understand that leaving the house is often fun, and should last more than thirty-seven minutes. I encouraged him to go on errands with me and not try to purchase everything he saw (just a heads-up, that will not work at Walmart or Toys R’ Us, be warned).

My boy has his limits too.

I want you to know I hope he’s good for you, and I wish you patience when he’s not. I want you to know that his primary emotion is joy, and if he’s having a meltdown or a crabby day (who doesn’t) he will eventually return to his happy place.

Yup, I promise.

I also want you to know how many people loved him- family members, our friends, his teachers and therapists. I scrapbooked his entire childhood (almost as therapeutic as wine) and if you have a few minutes, please peruse his life. You will see pictures (and I’m being objective again) of a beautiful baby, a sweet toddler, a handsome teen. You will see photos of an increasingly aging and tired-looking blond chick (who was cute once too) who in most photos is holding him or his hand, and smiling.

I want you to know that smile was genuine, no matter what had just transpired or what challenges we were about to face. I loved him, with all his difficulties, his perseverations, his intransigence. He loved me back, with his daily kisses for no reason, the ten minutes we cuddled each morning before I could get him out of bed, his hugs as I read him his Eric Carle stories nightly even at age twenty-one.

I want to thank you for whatever period of time your paths cross, for your perserverance, and I let myself hope, your kindness toward my boy.

So please, when you’re frustrated with him and thinking you’re just not paid enough for this (and you’re not), please know this. Take it to heart. Remember this, for him and for me.

We “got” each other.

He was my greatest challenge, my soul, my aching heart, my joy.

I loved him.

 

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