July 6, 2017

Silver Lining

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:32 am by autismmommytherapist

So, two nights ago the outside of our house caught on fire.

And I worried I wouldn’t have anything to write about this summer.

A little bit after nine o’clock on the fourth of July I had put the kids down, gotten into my pjs, and was preparing to watch the DC fireworks with my hubbie and honor our tradition of talking about our glory days when we used to actually go to the capitol to see them. As I was making my way to the kitchen to celebrate our nation’s birth with ice cream and wine (they go great together, try it!) I heard a loud explosion between my house and my neighbor’s. I had enough time to think what the hell that was as I ran to the door, which slammed open as my lovely neighbor screamed in my face that my house was on fire and to get out. I stepped outside to look and saw our huge spruce tree go up in smoke, and the side of our house, the outside wall to Justin’s room, ablaze.

And I swear to you, time stopped.

I looked next to me to see my other lovely neighbor leading my youngest son out of the house. I could tell you as I ran for the stairs that a little “life flashing before my eyes” thing occurred. I could tell you that I thought about the fact that Justin can’t scream for help. I could tell you that I prayed that smoke wasn’t already overwhelming him. I could tell you I prayed for no fire to have insinuated its way into my son’s bedroom. I could tell you those were my thoughts, but it wouldn’t be true.

All I could think was a primal, “get Justin.”

I want you all to know that generally getting Justin out of bed when he’s asleep is a Herculean task that requires a great deal of chocolate prior to my getting him every morning. He only weighs fifteen pounds less than me now and is an inch taller, and our morning routine of excision from slumber is comical. I literally build in ten minutes just to get him out of bed, an act which requires me dragging his legs over the side, body rolling him, cajoling, begging, and occasionally cursing about the damn bus coming.

I never said I was a perfect mom.

I’m going to tell you moms that if you’re ever worried about getting your severely autistic child to do something they completely do not want to do in a life-threatening situation, let your worries go. Those stories about moms lifting cars off their babies are true. As I ran up the stairs I felt a huge adrenaline rush go through me, and I swear that from the time I got to his room and got him out of the house no more than thirty seconds passed.

Wonder Woman has nothing on any of us.

We were all alive. My house didn’t burn to the ground. Ironically, only Justin’s room sustained real damage (figures!) and all will be fixed inside of a month. A terrible accident ends up only inconveniencing us.

We are lucky as hell and we know it.

This post will be a bit rambling today as I swear my brain is still processing everything, but so many things came out of that night. Our neighbors are amazing. Our town’s police and fire workers are incredible, compassionate professionals. I learned that while waiting to see if my house would burn down that I have irreverent thoughts, like wondering if Justin thinks firetruck Santa is at our house and is pissed that we’re not hosting him.

Sarah Silverman’s “bygones” flitted through too.

I remembered that sometimes shit happens.

I remembered that when you can, it’s important to forgive.

But the most amazing thing that happened that night was my children.

Both of my boys are on the spectrum. One has OCD as well, the other ADHD. Both love their routines, although my high-functioning kid can go with the flow.

I will share with you that going with the flow is not my eldest son’s favorite thing.

When we got to my neighbor’s house, my youngest son asked for tv, plopped on the couch, and said he couldn’t wait to tell the kids at acting camp about this.

To Zach, life is always an adventure.

But the kid who stole the show was Justin. I will tell you as we made our way across the street to our neighbors’ house, after knowing we were all safe and out of the house, that the first thought I had was “how the hell am I going to keep him here.” And at first, I was right. Justin takes medication that makes him sleepy, and all that kid wanted to do was go back to sleep in his own bed. We had entered the house through the garage, and all he kept doing the first five minutes was lead me to that door, and put my hand on the knob.

Who needs words?

After several minutes of this (and realizing this could last for several hours) I lead my kid to the front door . I shifted him to the side windows, pointed to the fire trucks, and said “Justin, our house is on fire, it’s not safe to go home now.”

He stood there for another minute, walked over to the couch, and laid down.

This may not sound momentous, but it is. Even a few years ago there would have been a meltdown of epic proportions, with me body blocking both exits until midnight or until he wore himself out. The thing is, it’s not that my boy doesn’t understand what we’re telling or asking him. It’s that Justin wants what he wants when he wants it, and until fairly recently trying to explain to him why he couldn’t have a sixth soft pretzel just didn’t work because he didn’t give a crap.

I secretly think he’s just an exaggerated version of me. That is just how much I love carbs.

But this time my boy simply stopped protesting, and the kid who barely sleeps anywhere other than his own bed conked out beautifully on the couch.

And later, just to be super amazing, when we got back in the house and he went to his room and we showed him the damage and told him he couldn’t sleep there, damned if that kid didn’t turn around and hightail it to our bedroom and throw himself under the covers.

We’ll just gloss over the fact that at 5:10 AM he decided it would be super fun to play on the computer.

So if you’re wondering what my point is (I warned you this was rambling, it’s your fault if you’re still reading), there are several.

My kids are awesome.

All the hours of Early Intervention, the amazing school practitioners, the outside therapists, our insisting that Justin try new things and learn to accept “no” paid off.

That despite this work we wouldn’t have had the same outcome even a few years ago- he was developmentally ready to accept his favorite pastime after eating was denied him, and he got over it.

I’ll say it one more time- my kids are awesome.

They surprise me, move me, and make me proud every day.

I couldn’t be more proud.

I love the hell out of them both.

 

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June 5, 2017

A Good Life

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:39 am by autismmommytherapist

I want you to know that I see you. You’re the mom sitting with your daughter as she does yet one more task for her Early Intervention provider who is gushing over her accomplishments. You’re the dad sitting in on the IEP meeting hearing about all the progress your son is making, listening gratefully to how proud they are of all the goals your son has attained. You’re the parent whose child is young, so very young to carry those letters around, and things are so much better since she started therapy or he entered school. Your child is often happy and engaged. After months of evaluations and long waits for doctor’s visits, you can finally breathe.

But that voice inside that’s been a constant companion for months tells you that your daughter is doing great, but will stay on the severe end of the spectrum. The voice is telling you that despite potty training and those few precious syllables, your son will need lifetime care. It’s the voice that despite all the lovely Early Intervention reports and school progress reports, refuses to go away.

That voice was my constant companion a decade ago, and for my eldest son, it was right.

I have two boys on the spectrum. My eldest is fourteen and on the severe end of the spectrum, and my youngest at ten is only mildly affected. I became pregnant with my youngest when my eldest son was three, and watched my typically developing toddler lose all his words and the light in his eyes when he was eighteen months old. In the space of two months he lost a year’s worth of milestones in all domains. I later watched in wonder as he entered therapy and regained his words, once again mastered those milestones, and recovered his spark. It didn’t happen overnight. There were no miracle drugs, no unproven therapeutic interventions. The truth is he got less attention than his big brother had when I was doing thirty hours a week of ABA with him myself in Virginia because Early Intervention options in the Old Dominion in 2004 sucked. My youngest simply improved monthly, weekly, daily, to the point that he’s now in double digits, and we just rescinded his 504.

And somewhere, maybe a year into his amazing improvements, I knew my eldest’s severe symptoms were here to stay.

There wasn’t one lightbulb “Aha!” moment when I knew Justin would need lifetime care. The realization just slowly came over me, particularly as I watched my youngest defy many people’s expectations (some of his doctors were completely doom and gloom, we ditched them) and once again return to the ebullient boy we had known. Justin certainly made progress, but communication was minimal even after having tried a variety of devices, words were nonexistent, and his meltdowns and sleep issues and eating constraints were slow to dissipate.

At some point I just knew his progress would never reflect his little brother’s. And I will tell you the truth; it was a realization I mourned.

I am a “suck it up” kind of gal, but I will tell you there was a period of time where I was simply distraught. It’s either a blessing or a curse that I’m a big picture person, and I was unable to envision a version of adult life for Justin that did not encompass any of the things I thought he’d need to be content- college, friends, a career, independence. I truly grieved the loss of those events for him, honestly felt he could not lead a joyful, fulfilled life without them.

Ten years later and after a lot of soul-searching as to what truly makes my son happy, I no longer feel this way.

My fourteen-year-old son with limited communication skills, intellectual disability, and accompanying OCD, is happy. When I say happy, I mean that when not immersed in the throes of OCD he is affectionate, engaged with his chosen few, and exuberant. He loves his school. He loves his house. He loves salted pretzels (who doesn’t?). He loves his life, without the promise of the neurotypical path his parents took. He is, in his own way with his DVDs and Baby Einstein clips on YouTube, fulfilled.

I realized that all those expectations I had, those requirements for a happy life, were mine, and mine alone.

I want to be clear that this realization that my son didn’t need my life plan to love his life comes coupled with the knowledge that I will most likely not be here to protect him for his entire lifespan. Honestly, it is a constant source of distress for me. I often envision living to one hundred sixteen to his eighty and going out in one great sigh together, but I know that won’t happen (although if I could will it, I would). Over time I’ve learned to compartmentalize this sadness, but not deny it. It’s just that I want to be here, present, to enjoy my sons’ collective progress, their indomitable spirits, their joy in their unique lives.

There is so much good here. I don’t want to miss a minute.

So I see your smile, the one you’ve plastered on because it’s the appropriate thing to do even as your heart hurts from the weight of a future you just don’t know yet. I see you. I won’t promise it will all work out okay, because no one, not even the most brilliant professional, can do that for you.

However, I will say this. Mourn when you need to. Talk about your fears to people who live what you’re going through. Get it all out, and take care of yourself while you do.

And remember this; even in the altered landscape of your lives, leave yourself open to hope, and to the possibility of happiness.

 

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May 15, 2017

Birthday Boy

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 10:07 am by autismmommytherapist

My dearest Justin,

Last week you turned fourteen. It happened to be field day at your school, and your smile when you saw me waiting for you to perform was magnificent.

That smile carries me many days.

I usually have a variety of emotions on your birthday. I always take time to remember the first moment I heard your cry and held you in my arms- my firstborn, bright with promise. It took about three years and a lot of doctors to get you here, and your dad and I were beyond ecstatic when you graced us with your presence. Your arrival made us a family. It launched me into the role I was born into (if you believe in such a thing).

The reason I’m ambivalent on your birthdays has nothing to do with your “label,” or even the dreams I had for you when I was still hosting you. I am mostly past feeling sad that you will never go to college, marry, or enjoy the trappings of a more “conventional life” (whatever that is these days), because in my mother’s heart I know you don’t miss these things. You are truly happy with your DVDs and your YouTube videos of Baby Einstein. When not in the throes of an OCD episode you are blissfully happy.

Most days, it is enough.

No, I’m not ambivalent about your birthdays because of your “now.” I’m ambivalent because of your future. You see, birthday boy, your mom reads a lot, and talks to lots of people about what’s coming down the pike as you enter your transition years.

By the way, just yesterday you were snuggled into a perfect fit in my arms, so how did this happen?

Some people call post-21 the cliff.

Some say they’ve been able to create fulfilling lives for their adult autistic children.

I want you to know with every inch of my soul I’m shooting for the latter.

I also want you to know that last week I did something different- I pushed the ambivalence down and lived in the moment (!) and just reveled in who you are, did not imagine who you will be or what will happen to you.

I’m very, very proud of myself.

You are strong, mercurial, funny, kind, smart, and abundantly affectionate.

Your hugs are the best thing in the universe.

I love you at every core of my being, and I will fight for you with my last breath.

You are my heart.

Happy birthday to my not-so-much-a-boy anymore.

I love you.

 

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May 8, 2017

Mother’s Day Love Note

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 1:22 pm by autismmommytherapist

Dear Justin and Zach,

This coming Sunday I will celebrate my fourteenth Mother’s Day as a mom, and I thought it would be nice if I wrote you both a little note to say thanks for making me one.

I’m not quite sure how it happened that I have a teenager and another kid in double digits when I still feel (inside!) like I’m twenty-five, but here we are.

Time happens.

I always wanted to be a mom. Although I wasn’t so much into Barbies and dolls when I was little I was into your uncle (until he could move around and get into my stuff), and I just naturally gravitated toward babies and kids. Actually liking children was one of the reasons I ended up being a teacher (there were others, the phenomenal pay was not one), and from an early age I knew I wanted two. One of the things that cemented my relationship with your father was that he knew he and his wife should never be outnumbered by their progeny.

He was a keeper.

If you haven’t realized this by now your mom is a planner, and I admit I once had a different idea of how things were going to turn out. I learned a lot from being an educator, as in only hope for happy and healthy, which, despite autism, I got.

And for that boys, I am eternally grateful.

I admit, that twenty-something year plan I had in mind did not include autism. I did not think I’d have two kids with the disorder, one mildly affected, one severe. Autism was just not on my radar. I’d had a few students with Aspergers in my career, and occasionally there’d be something about an autistic savant on tv, but autism wasn’t really a household world at the turn of the century.

Although I’m certain that for those families with kids who have it, it was.

So when I was carrying you Justin I never often entertained that any of my kids would be autistic, or would have anything more to worry about than possibly being very short (a gift from me) or a bit clumsy (a gift from Dad). I really felt like if I gave both my kids a five star womb hotel it would all work out. I thought I had some control.

Hah.

But the truth is the universe had a different plan in mind for all of us. Justin, you really showed signs from birth, signs like not sleeping and awful reflux that we attributed to colic and being a difficult baby. Zach, you developed typically until eighteen month when following an illness you lost all your works, developed a rash along the entirety of your body, and most distressing, lost the light in your eyes.

Good times.

Honestly, you two really made me work for that mom title. I initially thought I’d have a leg up on parenthood after teaching all those years, but as John Snow would say, “I knew nothing.” For years, I worried you two would never sleep (that worry was for me and your dad too). I worried you’d never eat anything other than a carb (and while I get that urge, it’s not always the healthiest path to take). I worried you’d never have friends. I worried we’d never be close (I could have ditched that one early). I worried you’d both never be happy.

I always worried.

Years passed (some required more chocolate and wine than others), and somehow, without my noticing it, life became easier. Justin, when you are not in the throes of an OCD obsession you are productive, happy, content. Zach, as you’ve matured it’s become so much easier for you to navigate school, social situations, and those ever-increasing life choices. I still carry the worry, don’t get me wrong. Every single day I worry about creating a stellar life plan for your adulthood Justin. Zach, I still worry sometimes about your life plans of a wife, kids, college, and owning the rights to Minecraft (it’s good to have dreams).

I still worry. I always will. But I can honestly tell you at this present time I no longer carry around the dread.

I want to thank you for giving me this life-altering, sometimes frustrating, sometimes exhilarating, magnificent role of being mother to both of you. I want to thank you for these things, and for so much more.

Zach, I want to thank you for being such a help with your big brother (even though sometimes you don’t want to).

Justin, I want to thank you for working so hard and for the stellar behavior you display for everyone at your treasured school.

Zach, I want to thank you for always challenging me to see things from a different point of view, and for widening my world.

Justin, I want to thank you for teaching me patience and the ability to open my mind to different kinds of happiness.

Zach, I want to thank you for your infectious laugh and for not making fun of me for having to google answers to all of your many questions.

Justin, I thank you for the glory that is your “nighttime self,” for the satisfied grin and kiss you bestow on me every night, and the fierce hug I get before you slip into slumber.

Thank you for letting me share your worlds.

I love you both.

 

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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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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 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.

Don’t.

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

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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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