September 25, 2017

Dear Soon-to-be-ex-case-manager

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:20 am by autismmommytherapist

Dear Soon to be ex-Case Manager,

The call from you came yesterday with that bland generic “my sons’ public school district’s” phone number popping up, and as always, I held my breath.

Is Zach sick?

Did I forget to send in his lunch (again)?

Is Justin’s placement in jeopardy (Dear God no, it’s too early for wine).

Fortunately it was none of the above, just you dear case manager, calling to tell me after about eleven years of almost continuous service for our boy, you’ve been reassigned.

Cue adrenaline, and deep deep regret.

I’ll have Justin’s public school administrators know that this was not in the Kim McCafferty lifetime plan, the one where we had you for the next seven years, inappropriately invite you to his high school graduation, and bask in our mutual understanding of one another. We’ve had two other case managers over the years and they were lovely, but neither lasted that long so I didn’t become attached.

Yes, I know I have an issue.

I easily recall the day you let us know you’d been reassigned once more to our family. It involved my 6’4” husband almost dancing (yes, I said dancing) across the front lawn holding out the phone to me as I waited for Justin, crowing with delight the words that filled our hearts- “She’s back! She’s back!” as I skipped (yup!) across our grass to grab the phone to hear it for myself.

Pathetic? Maybe. But I guarantee any parent of an autistic child reading this gets it.

The thing is, you “get” us, and you “get” Justin, and that’s absolutely priceless. I remember meeting you eleven years ago after we’d just moved to NJ from Washington, DC, and frankly, I was still in a bit of shock (and unbeknownst to me at the time about to get pregnant again, trust me, an even bigger shock). You calmly walked a very stressed out mom through all our options for Justin at that first meeting, and when things didn’t go as planned, helped us come up with viable alternatives.

You truly listened to us. As a former educator, I knew it was a gift.

The thing is, you’ve watched him grow up. You’ve seen him through three different communication systems, just as many placements, and you never balked when we came to the difficult decision that perhaps a public school placement wasn’t the right thing for him anymore. You (almost literally) held my hand as we looked at different options, scouted out others on your own, and led me away from places you told me you’d never send your own kids.

I can’t tell you how much I appreciated your honesty.

You always returned my calls, even in the early days when the sheer volume of my queries would have driven anyone to quit. You supported our choice of placement, rejoiced when he got accepted. When his iPad eventually broke (twice) you moved mountains to get it fixed so my boy wouldn’t be without his words.

In my words, I’m so grateful that you cared.

You see, the thing is dear case manager, I was hoping if this family kept our heads down the powers that be wouldn’t notice you’d been with us almost a decade, but I guess a little reorganization is in order, and it’s time to share the wealth of you. Before you go I want you to know how much your concern for our family, your organizational skills, and your knowledge base helped us. You were one less thing I had to worry about, and trust me, especially in those days where I had two autistic kids under the age of four, I needed one less thing to worry about.

I know that’s not in your job description, but thanks anyway.

You really were magnificent, and trust me, I’m a former teacher from a family of them, I know what’s out there. You will forever be a part of “Team Justin,” and have made a major contribution to my productive, kind, and happy child. Please take that knowledge with you when you go, and know how lucky those future families are (yes, I’m jealous). And know that if you ever come back, skipping and dancing will again ensue.

It’s a promise.

Thank you.

 

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September 19, 2017

Enough

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

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

Justin was five, and in the last few weeks of his pre-school program before he would transition back into district to his hometown public school. I recall going to his classroom for some type of program, the theme of which escapes me, and seeing a little blond haired girl he’d started with almost two years prior who had presented almost exactly like my boy. I remember watching as this young lady used words to get what she wanted, made eye contact with everyone around her, was able to sit still while waiting for the show to begin. She still flapped her hands as she waited, but none of the 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 15, 2017

Help Wanted

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:17 pm by autismmommytherapist

Last night the two wonderful BCBAs from my son’s private autism school came over for two hours to give me suggestions on how to make Justin more independent with his nighttime routine. I know some of you are rolling your eyes and saying “first world autism problems, Kim,” but hell, their services are free, and it’s important that I make him as independent as humanly possible.

I am very conscious of the fact I won’t be here forever to give him his bath, so the more he can learn on his own, the better.

As usual the ladies came up with some fabulous ideas I will be implementing over the next few months, and when they left, it was nice to know I was doing a lot right.

Even we autism mommies need a reward on occasion.

Just a few years ago I might not have contacted the school to ask for help, as requesting aide has never been my forte as I used to be the person (a teacher) who helped other people.

Not asking for help when you have a severely autistic kid- big mistake.

Back in the day when my son was first diagnosed we lived in the DC area, and most of our friends worked or had just had kids of their own. Despite that fact we did get offers of assistance, most of which we turned down. After all, we were two reasonably intelligent and responsible adults, we could handle this.

Well, maybe not so much.

I’m not one who believes in regrets- a waste of time for something you can’t change. If I had it to do all over again however I would change this. I would take those offers of help, from babysitting to running errands for me to making a Starbucks run (it was just down the street,) and as long as people were offering, I’d take them up on their kindnesses.

We all need a little help sometimes.

So if your child has just been diagnosed, or you’re a few years in, or hell, he’s a teenager, and someone reaches out, just take it. I know, you’ll be worried about what happens when you’re out (it might be awful, but at least you got to go somewhere!). Maybe you don’t want to inconvenience someone if they offer up dinner (trust me, it makes them feel good to help and it’s one less meal to cook, go for it!). Perhaps you’re just too overwhelmed with so many, many needs that you can’t even separate out what you need most.

Make the time to do that. It is so important not only for your child, but for you.

Having an autistic child can be incredibly lonely and isolating. Even if you’ve made some “autistic mommy peeps” you may not be able to sneak away with work and Early Intervention schedules to hang out and give each other support. I will say this- it is integral to your mental health that you get a break, and trust me, most of the people offering really mean it.

Besides, you can glorify their efforts on Facebook later, a win-win for all!

There’s nothing wrong with admitting you’re overwhelmed. There’s nothing wrong with admitting you’re exhausted.

There’s nothing wrong with admitting you’ve run out of wine and chocolate.

Ask for help. And know as you’re doing it you’re not only doing something good for yourself, you’re helping your child too.

Just ask.

 

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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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August 2, 2017

Tired

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:35 pm by autismmommytherapist

Okay people, I will admit this today- I’m tired.

Yes I’m tired in part from waking up at 4:00 for no legitimate reason whatsoever (yay aging!) but that’s not really it if I’m to tell the truth.

Honestly, massive quantities of chocolate can help that kind of tired.

No, it’s a “worrying” kind of tired, the kind that sets up residence the second I wake up and follows me (hopefully) into dreamland.

I’m tired of being afraid.

I’m tired of worrying about Medicaid cuts.

I’m tired of worrying that the massive impending budget cuts in our town will threaten Justin’s private school placement.

I’m worried someday he’ll become aggressive again and that will threaten his private school placement.

Hell, I’m worried some day just for kicks our district will want to bring him back (not a great idea).

I’m worried that new rules and regulations will from the NJ Board of Education and Department of Education will make it more difficult for private special education schools to stay open.

I’m worried about Betsy Devos. Still.

Frankly I think much of this worry is surfacing due to the upheaval in our house since the fire, and knowing that Justin’s routine will be disrupted at some point during the two months it will take to fix it (not knowing when is the BEST part!), so maybe when we have some closure on that, other worries will fade.

Maybe not.

But I admit, I’m trying to compartmentalize because I love summer damnit, and these really aren’t cheery “summery” thoughts.

Perhaps they’re not cheery in any other season either.

So once again (I’ve gotten really good at this!) I’m going to compartmentalize, and try to focus on the positives (I’m the girl who when told her parents were getting divorced immediately envisioned decorating her second bedroom, so I’m generally a “look-on-the-bright side” type of person).

There’s the look on my eldest son’s face the day after the fire when he realized he could sleep in his bed again.

There’s Zach telling me about a conflict at camp he worked out on his own without adult assistance.

There’s the outpouring of offers of help we’ve had over the past three weeks, the kindnesses extended, the “getting it” even from friends without autistic kids.

There’s the BCBA from Justin’s school offering me suggestions for independence and telling me my eldest son and I have a lovely morning routine.

There’s the five thousand hugs my eldest son gives me before he boards his bus.

There’s the proclamations of “I love my family” from my youngest on a nightly basis.

There’s good here too.

And I know I need to gather my thoughts and gird those loins and “frozen” what I can’t control and think about those good things, so I don’t miss even one spectacular moment with those kids.

I’m tired of being afraid.

I just quit.

 

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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 20, 2017

You Should Know

Posted in Life's Little Moments, My Take on Autism tagged , , at 3:31 pm by autismmommytherapist

We ran into you today at the boardwalk, former aide to Justin and frankly, one of my favorite paraprofessionals ever (trust me, at fourteen he’s had dozens, it’s truly a compliment). I stopped my boy to let you see how tall (and handsome, I’ll be Facebook braggy) he’s gotten, and you couldn’t believe this was the seven-year-old boy you’d cared for a lifetime ago. We stayed and chatted a minute or two before my son took my hand and started his stealthily strong pull toward the rides, a command with his increased size I knew I must obey. I hugged you, because that’s what I do, and we said our goodbyes as we headed in different directions.

The entire time we spoke, he barely looked at you.

You’ve been doing the “autism gig” long enough to not be hurt by his apparent lack of recognition, even though you two were quite attached when he was in school with you. What you don’t know is when we saw you approaching I told Justin his old teacher was coming, and when he saw you, he smiled that slight grin of his. It’s the one that lets me know he remembered you, that you once meant something to him.

I know you didn’t get a chance to see it because you were too far away, but I want you to know it was there.

It’s important for me to know that you know it was there.

I’ve seen this happen time after time with him. We run into people he was once passionately attached to, and he displays the barest hint of recognition, if that. Frankly, if that person is no longer in his life on a daily basis that slight grin is all they may get, and maybe not even that. It could seem like he no longer cares.

And to be honest, I can’t be sure at that time that he does.

But I want you to know that his tiny smile speaks volumes for what you meant to him in the past. The truth is when I take Justin out and we encounter people he’s never met before he gives them nothing- no eye contact, no glimmer of a grin, only a “hi” when I ask him to say it.

They don’t get the smile.

The smile means he remembers you. The smile means you once meant a great deal to him, that he appreciated your patience, your affection, your perserverence.

That smile means he appreciated you.

That smile is the best reference letter you will ever get, because it’s honest, no artifice attached.

He cared. He just may not show it now.

And I want you to know I thank you too, for all the fun you must have shown my boy, for the kindnesses extended, the myriad ways you must have made him feel safe and helped him make sense of the world. Your contribution to his joyful soul counts.

You count.

Thank you.

 

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July 14, 2017

Love

Posted in Life's Little Moments, My Take on Autism tagged , , at 12:45 pm by autismmommytherapist

I watched him walk away from me in the dusty barn we call horseback riding home, curious as to why he was heading for the door. I followed behind, helmet in hand, and saw two middle-aged woman standing in the entrance, chatting with one another. I watched as Justin approached them and stopped, and curious, I stopped too. His back was to me, and all I saw was him gently place his hands on both women’s cheeks, look into their eyes, then walk back to me, grinning. The women assured me all was okay and that his smile was a mile wide as he looked into these two strangers’ eyes. My boy returned to me, asked for a juice, then continued his usual pacing back and forth as he waited for his horse to be ready. I have no idea why he approached these women he doesn’t know (usually it’s pretty teenaged girls, and then he wants a hug or kiss).

There is so much I’ll never know.

My fourteen-year-old son is severely autistic and non-verbal. There is not a wide circle of individuals he has connected with in his life. I know that when I take him places and prompt him to say hello to people often all they see is a boy gazing off at a point somewhere behind them, or a disconnected stare. Most of the time strangers will not get a reciprocal “hi” out of my boy; for Justin, it will be as if they don’t exist. I’ve seen this happen countless times out in the community, when picking up my youngest from karate, or when we attend cub scout events. He only gives what we call the “forehead hug” to his extended family, and he has known and lived fairly close to them his entire life. Frankly, based on just these encounters, anyone could think he doesn’t connect at all.

But for those in his inner circle, for those he truly adores, he is a world of compassion and love.

My son’s true loves are a few of his teachers from school, his grandma, his dad, (sometimes) his little brother, and me. For us there is a world of affection, including snuggles on the couch, and what I like to call our “ten minute hug time” which must transpire every morning or he won’t get dressed, and must be the capstone to every evening or he won’t go to bed. On the few occasions I’ve cried in front of my son I’ve always received an embrace, and often throughout the day he just plants one on me, looks into my eyes, grins, and walks away, not even manding for a thing.

For those special souls, he is a “hugger,” just like his mom.

I write about this and tell people how he acts with his tribe because I want them to know he feels compassion, empathy, and love, because it may not always be apparent when encountering my son for the first or even the fiftieth time. My boy, despite not talking, despite not interacting in a traditional way with most people, has the full range of emotion we neurotypical folk do.

I remember when he was first diagnosed at seventeen months I feared that closeness we’d always had since birth and his “snuggly soul” would disappear- my fears were totally ungrounded. Thirteen years later we are deeply connected, my boy and me- there is no doubt of our commitment to one another.

I just want everyone who meets him, present and future, to know how deeply he feels, that his core is love.

And I am forever grateful that the affection he extends to his posse is reciprocal, returned many times over. He is loved. He is cherished.

He doesn’t even need to say the words.

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