November 23, 2020

Keep an Open Mind

Posted in My Take on Autism tagged , , at 2:32 pm by autismmommytherapist

I suppose this is an anniversary of sorts- sixteen years ago this fall my eldest son was diagnosed with autism at eighteen months of age. It didn’t really come as a surprise- I had been concerned about his development going on a year, and the kindly developmental pediatrician who gave him the autism label only confirmed my suspicions about his divergent behavior. While I knew in my heart what he had, I had no idea how many challenges me and my husband would have to face, and how many difficult decisions we would have to make.

I will tell you this now- one of the best ones I made was to keep an open mind.

I didn’t come to this viewpoint right away. I quickly formed some very strong opinions regarding my son. I had read that autistic children who used sign language had a greater chance of talking later on, and I desperately wanted that for my son. I can remember making my case with his New Jersey Early Intervention team, and finally getting my wakeup call when his excellent therapists pointed out that he had minimal imitative skills and had mastered only a few signs over a long period of time. Fortunately I listened, and he moved on to the PECS system and eventually to an iPad, which he uses to communicate successfully every day. Apraxia has kept my son non-verbal- all the signing in the world would not have facilitated that type of communication.

Fortunately, I listened to the experts, not my heart.

Another strong opinion I had was that I wanted my son in a public school, so that he could have interactions with mainstream peers. When he was little he did interact with his more typical peers, but that desire dissipated as he grew older, and his needs outstripped what his local public school could offer him. His father and I were able to consider a private autism school when he was finishing first grade, and it remains today the single best thing we have ever done for our son. Had someone told me I’d be advocating for that when he was first diagnosed I would have rejected the concept soundly, but fortunately I listened to the experts once again who knew my child and his future needs, and we were able to make the right choice for his education.

None of these decisions was easy, trust me.

The truth is one of the single most important things I’ve been able to do for my son is keep an open mind regarding so many things that have affected his life- how he’s educated, medication usage, his manner of communication, etc. When your child is first diagnosed it can be so overwhelming- figuring out insurance coverage, Early Intervention or the process to get him or her into the school system, getting your child to eat, sleep, or simply just be happy.

So take one thing off your plate- don’t feel that any decision you make has to be made in stone, and make them one at a time. Be open to the opinions of those who know your child, and try to be flexible when considering what can best help him or her.

Do your best to keep an open mind.

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October 26, 2020

Leisure Skills

Posted in AMT's Faves, Fun Stuff tagged , , , at 1:11 pm by autismmommytherapist

Although it’s been seventeen years since my family began their autism journey, I remember the sense of both relief and panic that assailed me after my eldest son’s diagnosis. There was so much to accomplish. Finding and training therapists because Virginia’s Early Intervention system was a joke for autistic kids; teaching him how to eat; how to sleep; and at the time, our hope we would be able to elicit functional speech. I was so overwhelmed in those early days and months, but I recall that one of his therapists said something to me that stuck even in those sleep-deprived days.

Don’t forget to teach him how to have fun.

I know it sounds ridiculous to have to teach a child to enjoy himself, but with Justin, we did. He could spend hours amusing himself by spinning objects, and he loved his Baby Einstein videos, but that was about all that enticed my son from a pervasive crankiness I was desperate to alleviate. When he was little Justin hated the car (we later had respite from this when we could turn his car seat around), so most of our outings were relegated to the stroller and neighborhood walks. I knew that I would have to encourage Justin to like leaving the house and doing things, both for my sanity, and for his future.

Even then I knew if he ended up living in a group home one day, he’d have to leave it eventually.

Slowly, I taught my son to tolerate the mall by taking longer and longer trips there- eventually, especially after we were able to turn around his car seat, he began to get excited when I put him in the car. We conquered the sounds of the parking lot, elevators (that took a while), and the general noisiness of the mall itself. Later, when we moved to New Jersey, we began taking outings to our local boardwalks, Great Adventure, our pool, and the beach. At all of these venues we had to build up both longevity and tolerance. In the beginning I sometimes bore the marks of his discontent with waiting on line, but in the end it was worth it.

Trust me, it would have been so easy to give up. All of this acclimation took years. Sometimes, it felt hopeless.

But it wasn’t. And now, at seventeen, there are a multitude of places we can take him, including Disney and Universal Studios. And I am convinced he would never have been able to tolerate the plane ride or the parks if we hadn’t accustomed him to venues when he was very young.

Leisure skills inside the home are important too. We are fortunate in that Justin enjoys the computer, his DVDs, and even will occasionally watch a feature movie on tv. We tried many activities over the years; many did not stick. The important thing however is that we tried, so we could cross some things off the list with at least knowing we’d given them a shot.

If you’re just receiving a diagnosis for your child fun is probably the last thing on your mind- there are more immediate needs to attend to. One outlook however that has served me well over the years when I’m confronted with an issue with Justin is to ask myself if this will be a problem for his caregivers when his dad and I are gone. If it’s not, I can drop it. If it is, I do my best to come up with a solution.

The truth is, Justin will reside with caregivers for going on forty years of his life. They will want to leave their group home on occasion; by exposing Justin consistently and repeatedly to experiences outside the home he came to love outings, which will help him later on.

Yes, I’m a planner. But whether I want it to or not that future where I’m not there for him will one day come- my plan is to leave him as happy and accommodating to other people’s plans as humanly possible.

Leisure skills are key. When the dust has settled and more pressing concerns are addressed, give an outing a shot, even if it only lasts five minutes. Try to find that one thing your child is passionate about that can be a sustaining  interest for his lifetime.

And never give up.

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October 12, 2020

Feda and Muhammed Almaliti

Posted in My Take on Autism tagged , , , , at 10:49 am by autismmommytherapist

Recently I was horrified to see on my Facebook feed a story about a mom, who was an extraordinary autism advocate, and her severely affected autistic son, dying tragically together in a fire in the wee hours of the morning.

Her name was Feda Almaliti. Her son’s name was Muhammed.

From everything I’ve read Feda was a warm, wonderful human being who was a force of nature, a devoted mom to her fifteen-year-old autistic son and a staunch autism advocate. I can’t pretend to know what went through her mind her last minutes on earth. I know that she made it outside, and chose to run back in to try to save her son. She must have known she might not be able to get him to leave. Muhammed was a teenager, not a small child she could easily lift and carry out. She had to have known this might be the end of everything when she ran back into that raging inferno.

But she went back anyway, and I get it. Because nothing would prevent me from barging into either of my son’s rooms and trying to save their lives.

Feda and Muhammed’s deaths are an incomparable loss to our community. In reading interviews conducted with Feda she repeatedly talked about how the perspective of the severely autistic community was not being recognized. In an interview with NPR Feda stated “I almost feel like nobody hears us. Nobody- because my son doesn’t really talk. He doesn’t talk, and I’m supposed to be his voice. And no one’s listening to what’s going on for our families.”

Like Feda, many parents are trying to voice their experiences for their children who can’t speak- and are often being shamed and chastised for it. Severe autism is often not pretty or comfortable to talk about. The self-injurious behavior, the lack of sleeping, the sometimes aggressive episodes aren’t as pretty a story as the savant on the piano or kids like my other son, who has made incredible progress and is now mainstreamed and has friends and a happy life. These truths, for some, are uncomfortable.

Yet they must be heard.

In honor of Feda and Muhammed, our stories must continue to be heard.

And my most profound hope is that we can continue this legacy of speaking our truths for both of them, and for us as well.

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September 30, 2020

My Own Camp

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 1:16 pm by autismmommytherapist

I realized today while taking my morning walk that I missed my ten year “blogiversary” in March. In my defense we had just entered a global pandemic, so I can forgive myself.

But a milestone like that deserves to be celebrated, so here we go.

I went back and read a few of my early missives, feeling a great tenderness for that girl who had no idea what was coming down the road, but who was a bit seasoned in the autism chronicles as she was raising a seven-year-old and a three-year-old who both had it. I wrote a lot about writing my book (which I’m glad I did ten years ago as I’d never have the energy now), a lot about sleep deprivation (which I still have on occasion but it’s my fault entirely now, and not due to my kids), and an awful lot about acceptance and trying to keep a positive attitude when dealing with the struggles and challenges of raising an autistic kid.

And of the three, I’m still writing about the latter today.

My feelings about autism acceptance have shifted in shape over the years. I’ve read countless blogs from neurodiversity advocates and self-advocates, from parents striving to eradicate most or all signs of autism in their children to relieve their suffering, and everything in between. And the truth is, after seventeen years of living with autism 24/7, I cannot be put entirely into either camp.

Or rather, I refuse to settle down into any one camp.

I have two boys with autism, and they could not be more different, nor could their life trajectories. My youngest has regressive autism, where he developed typically for eighteen months then descended into a hell of losing all his speech and the very light from his eyes. After years of therapy my last son is now fully mainstreamed, has friends, and is taking Algebra 1 in the eighth grade, which mystifies his extremely math-challenged mother. He, like most boys his age, spends a lot of time in his room texting his friends, and is really, really grumpy sometimes when he wakes up.

I know, welcome to the teen-age years Kimberlee.

Despite trying really hard all these years I still to my chagrin can’t predict the future, but I am pretty certain my youngest will attend college, hold a job, have friends and love, and eventually move out. It doesn’t matter to me what university he attends or how lucrative his job is (as long as he can support himself) if he’s happy, safe, and productive. Trust me, I will feel like we won the lottery if he achieves all these things, because the statistics aren’t great, but still I feel he has a fighting chance.

And if he does, it will feel like we won the Megamillions.

My firstborn has had much more of a rocky road. I believe there were signs from him from the get-go, things like his constant aversion to sleep, his difficulty nursing and eating in general, and an all-pervasive crankiness no matter what I did. These things coupled with his penchant for spinning things at six months and his speech delay earned him an autism diagnosis at seventeen months, which was incredibly early back in 2004. Despite constant and quality therapy from seventeen months on, as well as my son has done, he will never live independently, will require life-time care that I’m wondering how I’ll coordinate from beyond the grave (because if I can pull it off, I will). My boy also has OCD, tic disorder, and intellectual disability, all of which have created a myriad of challenges for him and his family over the years. I am thrilled to say he is a mostly happy young man, but one who will need constant support over the decades to come.

And that is the crux of my issue with acceptance right there, because I won’t always be here to give it to him.

Don’t get me wrong. I completely accept that both my boys have autism. The fact that they’re different is not what I take issue with. We’re all different from one another, and that’s what makes a better and far more interesting world.

But I won’t be shoved into either the neurodiversity camp or the “cure camp,” because I have two boys with completely different needs and different projected life outcomes. My oldest can’t protect himself from predators; he literally can’t say the word “no,” nor might know that what someone is trying to do to him is wrong. And that is the bottom line for me, his inability to protect himself for decades to come, that prohibits me from embracing every aspect of his severe autism.

I know my feelings about this will never change no matter how many blog posts I read.

I feel completely differently about my secondborn. His autism presented challenges for him the last thirteen years, but frankly every kid has some challenges, and I firmly believe that some struggle is good for the soul. He has friends, love, is thriving in school and all his activities, and can most likely remain safe in this crazy world. I love his perspective on life- I wouldn’t change a thing.

So here’s what I accept. I accept that difference is beautiful. I accept that my goals for my children will remain obtaining their safety, their happiness, and their independence. I accept that I would change whatever I could to give them those gifts, even if it meant lowering their level of autism, which I believe would have no impact whatsoever on the core of who they are, because that core is love, not autism.

And I accept that I can both love them for who they are, and forever wish their struggles were lessened.


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September 16, 2020

Our Best Selves

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 9:16 am by autismmommytherapist

The reality hit me from the email I received from Justin’s case manager yesterday. It included a letter introducing herself to the “newbies” in our town who are sending their children to Justin’s private autism school for the first time, and a reminder to the “oldies” that fortunately she would be sticking around again this year. I almost missed it as my eyes quickly went to the meat of the message to make sure she wasn’t being replaced, but eventually they returned to the top; under “student name” the words “grade 12” were prominently placed.

Grade 12. It is Justin’s senior year.

When I was carrying him, this really isn’t how I thought it would go.

Of course six months ago I didn’t think we’d be embroiled in a world pandemic that would last six months and have no forseeable ending, so maybe my powers of prediction aren’t that strong. I will tell you however that I never thought the child I was carrying would be spending his senior year in an autism school, not contemplating prom nor SAT prep nor driving.

Perhaps I don’t mourn the latter quite so much.

There are people in the community who would berate me for mourning these things almost two decades after his birth, perhaps lamenting that I don’t accept and revel in him as he is. Frankly, I say that is ridiculous. We are so connected, this child of mine who made me a mom. It’s okay to be sad he won’t have those choices, because for me it’s really about the lack of those choices, to love, to learn in college, and to drive to his girlfriend’s house. It is okay to wish he had these options.

I don’t believe it’s okay to be so distraught with grieving seventeen years later that I can’t help him be his best self, or enjoy him for who he is. And I’ve worked really hard over the years to get to that place.

I have shelved those losses, but I admit I haven’t shelved them all. I will never be at peace with the fact that I must likely won’t be here his whole life to love and shelter him, to keep him safe. Will he have a brother and cousins to help him carry out that sacred task? Absolutely. Will it ever be enough to give me peace of mind? Absolutely not.

That ache, that worry and concern, will never fade for me.

I have found over the course of living with autism and all its adventures for seventeen years that probably some of the biggest factors in having a safe, happy and productive autism family are being able to admit fears and concerns, accept your child’s strengths and limitations, and taking small steps constantly to solicit their best selves. If you can do those things while simultaneously being kind to yourself as you work through the myriad of challenges you will face as a family, you have a much better chance at a safe and happy family.

And at the end of the day, that is what I always wish for.


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August 29, 2020

Group Home

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 1:59 pm by autismmommytherapist

It is with great delight that I will announce to all of you that I have some news. No, I haven’t won the lottery or cleaned out my garage (hopefully done before I move someday). I have yet to open my new pressure cooker I got for Christmas, and my “losing the Christmas pounds” regimen has yet to really take off (fingers crossed on that one).

No friends, my news is this. I have a new project.

I’m going to try to help create a group home for autistic adults.

No, I’m not doing this on my own, and I expect it to take years. I will be working with some wonderful parents from SSNY (Someone Special Needs You) ( to raise money for the home and get land donated by developers for the project.

Do I know how to do any of this? Nope. It will be a learning curve for me, but a really important one.

My eldest son Justin is seventeen, non-verbal and severely autistic. Someday he will need to reside in a group home, as I do not anticipate for many reasons he will live with my other son one day. I am confident at some point Zach will work and have a family of his own, and it would be very daunting for him to have his big brother reside with him. Plus, in my “plan for everything” mindset I would worry about what would happen to Justin if something were to happen to Zach that would prevent him taking care of his sibling, so this seems the logical plan.

Oh, were it that easy.

I have to admit I am conflicted about the group home plan, and probably always will be. I worry about him being abused, although to tell you the truth that could happen if I kept him home with me until the bitter end and had in-home care for him.

Hi being hurt is one of my worst nightmares.

The other reason I am conflicted is that if I’m brutally honest with myself, I will admit that I’m confident if Justin had a choice, he would stay with us until the last possible moment. How do I know this from a kid who can’t talk? Honestly, I just know. I have a child who loves his routines, who loves his home, his bed, and is always happy to come back from vacation and just be home.

So you see my conundrum.

If I thought for a minute Justin would want to be more independent in his twenties I would still worry about the potential for abuse, but I would be more at peace with the decision. Of course the reality is, his father and I will die, and since we had him late he’ll have about forty potential years on this planet without us. He needs to live somewhere. And I am left to ponder, is it kinder to try and place him in his twenties when he’s younger and ostensibly more open to change, or keep him until he’s in his forties and his parents are doddering old farts who physically can’t take care of him anymore?

I will probably go to my grave not knowing the answer to this.

The reality is he most likely won’t come up to the top of the waiting list for a budget for residential care until he’s in his mid-thirties, so the decision may be made for us. The other truth is when the budget is available I may not be enamored of his residential options either, so the wait may continue.

Ah, uncertainty, my favorite.

Regardless, I am looking forward to finding out about this process with good people, most of whom have children a few years older than mine so I have a lot to learn. I will be learning about fundraising, and networking to find developers, and learning about all the myriad regulations associated with starting a home of this nature, of which I’m assured there are many.

Despite all the potential roadblocks, I am excited to learn.

I will be writing about the process along the way. Wish us luck!


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August 13, 2020


Posted in Life's Little Moments, My Take on Autism tagged , , at 7:10 am by autismmommytherapist

I hear the familiar phrase “watch the tram car” as I walk into our bedroom, and glance over to see Justin taking a virtual tour of the Wildwood boardwalk, a venue he hasn’t been to in almost fourteen years. He is calmly watching a man extoll the virtues of the Jersey shore, leaning back in his chair, relaxed and calm. Justin has such a prodigious memory that perhaps he does somehow recall strolling the boardwalk with his parents when he was three. I’m fascinated that he found this video, and would love to know what transpired in his head for him to google it.

What I wouldn’t give to know what transpires in his head.

My seventeen-year-old son Justin is severely autistic and non-verbal. We were lucky enough to get him diagnosed very early, and were able to start therapies with him when he was just eighteen months old. This, plus his amazing autism school, and the fact that he has a loving nature, has led to the mostly happy young man we have today. Justin has been amazing during the pandemic, not trying to leave the house, not throwing his shoes at me as he used to do when younger and wishing to go somewhere fun. He seems to have accepted his confinement with grace, rotating during the day from instruction from me to his computer and then his DVD player.

To say I am very lucky for his acceptance would be a gross understatement.

These past months have really given me a chance to think about his future, and to reevaluate things. Justin will graduate from his wonderful autism school in four years, and to tell you the truth I’ve been dreading that day. Justin’s school has been one of the most wonderful parts of his life, filled with caring professionals who treat him with dignity and expect his best from him. I know that he loves going there from the way he bounds to the bus each morning, and his mostly stellar behavior while he’s there.

I’ve been dreading his graduation in part because of how important I know his school is to him, but also because I’ve dreaded what might be a prolonged stay at home while he transitions from school to a hopefully great day program. I didn’t know how we’d fill his days, or how he would react to not attending his beloved school anymore.

Well, now I know.

My son has been amazing during these last months. We’ve been able to get him out of the house for walks, something I would never have contemplated in the past. He rotates around the house for me as I ask him to comply with his educational targets, and he does it without complaint.

I am sure he misses school. But if there’s any positive to a quarantine with him it’s this- when it’s over, he will be okay. We will find him a good program, he will behave, acclimate, and enjoy it.

I no longer dread the inevitable.

We will all be okay.

And for this knowledge, I am eternally grateful.


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July 24, 2020

Embracing “All Autisms”

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:13 am by autismmommytherapist

I’ve been reading blogs about autistic kids for going on seventeen years now, and I have seen every opinion and topic covered during that time from potty training to aggression, to the “has autism” “is autistic” debate, to whether bloggers should be writing about their kids at all.

I have read impassioned commentary urging moms and dads to “presume competence” and not write about topics which would embarrass their kids. I have read commentary responding that their kids would never understand about the content of their parents’ missives, and that the readers need to vent to get through the day.

I am a blogger who has written about her severely autistic son for a decade. My boy, whom I love dearly and who loves me, has been aggressive in the past. I have written about some instances, but mostly kept them to myself. I’ve preferred to write about his triumphs and pass on tips to other parents to help them navigate the autism world.

The truth is I have chosen this path in part because it didn’t feel right to me to share that side of him, as it is not representative of who he is at his core, or how he predominantly acts at home, in school, or in the community. I also chose not to share to protect him. Anyone could read my blog posts and have a negative attitude toward my son, and that is the last thing I’ve wanted or would ever want. He is a loving, kind boy, and deserves to be perceived that way.

I have not chosen not to write about his episodes because he might come across them on his internet searches and be shamed by what I wrote.

Justin is severely autistic, non-verbal, and has intellectual disability. This does not mean that he is not intelligent. When my son was three one of his therapists pointed out to me that he was able to read, a claim I met with skepticism. After all, I was a teacher, certainly I would have noticed? He was only three. How could she possibly know this when he couldn’t talk?

She knew because when she put out an array of fifteen index cards and asked him to point to each word, he did so perfectly.

He did this over and over, and over again.

My son has some wonderful splinter skills. His ability to read, which peaked at a first grade level, has enabled him to do some academic work throughout the years. It has also permitted him great facility with Edmark, a reading comprehension program he uses both at home and at school. At a certain point he plateaued at about the level of a six-year-old, and yet I have never been more grateful that we could read young children’s books together, that he could do some work, and most importantly, navigate a computer so that he could do his Google searches to his heart’s content. He is able to play a number of games on the computer, and when we recently had to switch to a new browser with different steps necessary to open it he went with the flow like a champ.

And yet, if I read him one of my blog posts, he would not comprehend it. I am certain of this as his mother, as a veteran educator, and by the work he has done for the last fourteen years he’s been in school.

I know that someone somewhere is thinking “presume competence,” and I would respond that I do. I am, however aware of his limits. I work within them and continually push his boundaries in all developmental domains so that he can be his best self, but I know when to respect who he is.

The fact that he has limitations other neurotypical seventeen-year-olds have does not make him less than them.

What bothers me about saying “presume competence” is that to me it implies that somewhere inside my son is an almost-man who can comprehend writing and complex commands on a “typical” level, and that is just not true. He can’t, and that is okay. It also implies to me that he is somehow lacking if he does not have this advanced comprehension level, that there is something missing within my son.

And this, I can say with absolute certainty, could not be farther from the truth.

As a community, we need to embrace all “autisms”. We need to recognize the child almost indistinguishable from his peers who knows an awful lot about Star Wars. We need to understand and support the adult child and the parents of said adult child who has aggressive meltdowns and self-injurious behaviors and intellectual disability. We need to see the girl-in-between-worlds, who can mainstream to a point and knows she’s different and may never live independently. We need to acknowledge the boy who is non-verbal and seems to reside in his own world but has typical intelligence.

We need to embrace them all.

And we need to do it now.


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July 8, 2020


Posted in Life's Little Moments, My Take on Autism tagged , , at 7:05 am by autismmommytherapist

My eldest son is giggling fiercely, entranced by the 3D tour of Universal Studios I’ve googled for him on our computer. He sees the Hagrid Motorcycle ride and gives me the briefest of glances, and I smile and acknowledge that yes, we’ve been on that together. The video is a good twenty minutes long, and I know that afterwards he will amuse himself with other similar fare, and doesn’t need me anymore to orchestrate his entertainment. Every year he grows more and more independent, small steps away from us doing so much for him.

It is a joy to witness.

Something interesting has happened during this long lockdown. For years I have been working on fostering independence with self-help skills and chores with Justin, and while we’ve made progress, it’s been incremental. These last few months I’ve been seeing a subtle shift in his willingness to do more on his own. I’ve seen it in how he dresses himself in the morning, or bathes himself in the shower at night. It’s taking less nudging for me to get him to use a fork at meals. He’s putting his clothes away at night with less prompting. And I have to say, most importantly, he’s been so compliant with me as I’ve put him through his paces with school, having him do chores, worksheets, and work on the computer since his school shut down.

I think the shift has to do with the world slowing down, and us being able to focus on the task at hand without having to rush off to do something else.

Justin will never be completely independent of us. This remains, and will always remain, a bitter pill for me to swallow. My boy was diagnosed with autism at the tender age of seventeen months, which was quite an unusual age in 2004. I then threw myself into doing therapy with him for the next year-and-a-half because Virginia did not provide ABA therapy or recognize an autism diagnosis at that time. My goal was for him to reside at the milder end of the autism spectrum, and ultimately to gain independence from us.

My son will never recognize either goal.

I wish I could change that about his life trajectory. I know some people would say that wish would change him fundamentally and it’s wrong, but I disagree. At the core of who he is Justin is a kind loving soul- that would not change if his degree of autism shifted. I would prefer to leave this earth knowing my child could fend for himself when I’m gone, was not reliant for his lifetime on individuals who won’t even be born when I leave this earth.

I can’t change the fact that he will often remain dependent on others. But I can do all I can to help him do for himself as much as possible.

The knowledge that my kind, brave son can still make progress with patience and practice keeps me going. Knowing that if his parents and his teachers keep working with him he will acquire more skills, which will make things easier on the people who will care for him when his dad and I are gone, is a gift. Realizing that this beautiful boy, who gave me my most important and life-changing role seventeen years ago, will continue to grow and be happy gives me hope.

I know we can continue to grow together.

And at least during this difficult period of quarantine, I can say the two of us have been able to do just that.


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June 24, 2020

Father’s Day

Posted in AMT's Faves, Fun Stuff, Life's Little Moments tagged , , , at 10:50 am by autismmommytherapist


Dear Jeff,

It is seventeen years ago last month that you became a Dad. And while up until then I’d done most of the work, that dynamic changed the moment your first son came into the world.

My friends had told me to give you a couple of jobs (middle of the night feeding being a favorite), just so you had “ownership” of something related to our boy.

It wasn’t necessary. You’ve been there for him, and for me, every step of the way.

I know things haven’t turned out exactly how we planned. Somewhere in a parallel universe we still live in Washington, DC, we both work, and our two kids, two years apart, are a teen and a tween respectively and driving us crazy with their backtalk (okay, that still applies to one of our kids). Nowhere in “What to Expect When You’re Expecting” was there anything about sleepless nights for a year, reflux that just wouldn’t quit, a general extreme crankiness that defied all logic (that often extended to us too), and a penchant for spinning things that also defied logic (and often gravity).

I know there have been days with Justin that have just completely broken your heart.

And yet, you never give up trying to give our son, and our family, the best life possible.

When our boy was diagnosed at the tender age of seventeen months and we found out Early Intervention in Virginia is a travesty at best, you figured out a way for me to quit my job and do dozens of hours of therapy with him until he could start school. When we realized the school program wouldn’t be right for him (and I began to burn out on ABA) you figured out a way for us to move to Jersey, a chance to give our boy some amazing therapists, a great school program, and proximity to relatives and friends who could help.

I truly don’t know how we would have made it those first few years without that bold move.

We’ve had so many decisions to make over the years, some of them soul-suckingly hard. Where to live. What school placement to put him in. What ancillary therapies to provide him. What medications to try, and try again. Which doctors to take him to for first, second and third opinions. Whether or not to have another child (we did, and happy to say, it worked out). Hell, just for dealing with our insurance companies you deserve a medal.

You’ve been there to help me with all of them.

You have listened when I poured my heart out to you about my quandaries around inclusion, my desire to give him a hobby other than technology, my drive to take him out into the community even when it wasn’t pleasant. You have held my hand when I’ve had to let many of our dreams for Justin go, and helped me rally to remember all the good things he has in his limited, but generally happy life.

You have been my sounding board, my sanity, my friend.

Perhaps most importantly, you learned how to be a part of Justin’s world, meeting him on his terms, which has forged such a close bond between the two of you. He loves when you echo his favorite lines from “Up,” adores when you scratch his face with your five o’clock shadow, treasures those moments of “snuggle time” on the couch.

He loves you, truly and deeply, with a connection forged in your relentless pursuit to bond with him.

He is one lucky boy.

I am one lucky wife.

From Zach, Justin and myself, Happy Father’s Day my love.


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