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 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.

For more on my family visit my blog at autismmommytherapist.wordpress.com

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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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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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