April 2, 2020
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, World Autism Awareness Day at 6:20 am by autismmommytherapist
Today is World Autism Awareness Day, thinking of all families during this difficult time!
I walk into the kitchen area holding my Tupperware, material for one of the many activities I’ve been doing with Justin, my severely autistic teenager (he matches lids to bottoms better than I do). My eldest is now heading upstairs for some computer time well-earned, and my youngest is on hour three of virtual homeschooling. I take a moment to reflect upon how grateful I am that the last two weeks have gone so smoothly, and treat myself to a piece of chocolate.
My priorities are still intact.
There were a few glitches when I started homeschooling Justin, but the staff at his school have been wonderful with communication and I think I’ve figured them all out. I’ve been reaching out to my group of friends with autistic children, and there seems to be a unanimous consensus- everyone has adjusted and is doing really well. Autistic kids and adults are not really known for their capacity to adapt to change- many love their routines religiously, and the virus has completely disrupted that sense of continuity for them. Like many of my friends I’ve worried that Justin would have meltdowns when he realized he wasn’t going to school or anywhere- years ago, this would have completely been the case. Instead, like my friends’ children, he has completely gone with the flow, even complying to take walks around the neighborhood and not insisting on getting into my car.
I’m grateful for that too.
The truth is I’m not surprised by how well it’s gone for me and my friends. Being autism families, most of us have all spent a great deal of time in our houses at some point in our lives. There were years where there were only a handful of places I could take Justin due to his behaviors, and certainly we were not going out as often as most of my friends with neurotypical kids. I remember when we came up to Jersey from Virginia to house hunt I told my husband we’d better really love the house we chose because we’d be spending a lot of time in it, and that has proven to be true. And while my ability to get Justin out has increased over the years, his desire to go certain places has decreased. We are home a lot. We’ve had a lot of practice with self-quarantine.
We’ve also had a lot of experience with adversity.
While I am thrilled with our success and the success of my friends’ families, I am under no illusion that shelter in place has gone so well for all the families in our community. I have read many posts online of families who are really struggling. There are those with higher functioning children and adults who don’t understand why they’re not going to beloved schools and day programs. There are more challenged adults and children bereft at their inability to go to a favorite restaurant or movie theater. There are children who have begun to regress in skills, adults exhibiting aggressive or self-injurious behavior.
There are many families not posting pictures of their fabulous social distancing hikes.
I’m writing this post because there are families out there who are truly struggling, who are even more isolated than they were two weeks ago. There are many with children and adults who are truly suffering with these restrictions, who are unable to comprehend why mom and dad can’t tell them when this will be over.
I want you to know you are not forgotten.
I want you to know you are strong, and you will get through this.
I want you to remember that someday, while we will have a “new normal,” this will be over.
We see you.
We remember you.
Don’t give up.
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March 18, 2020
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, Brick Public Schools, Corona virus, homeschooling, Veterans Memorial Middle School at 11:24 am by autismmommytherapist
Today is day three of “education chez McCafferty.” To homeschooling moms and dads, it’s just Wednesday.
I’ve waited a few days to write just because I wanted to see how things played out. Virtual learning will start tomorrow with Justin, and Zach has been faithfully spending about three hours a day doing his work remotely. I admit on Monday morning I was worried about how this would go, but when I inquired I got “the hand” and an exasperated “Mom, I got this” and moved on.
Having a teenager has taught me to walk away (and fast).
I want to take this time to thank the teachers and administration at Veterans Memorial Middle School, who at least for my child have put together seamless instruction in about five minutes that has blissfully kept him occupied for hours. Speaking as a former veteran educator myself, I know this has not been easy. Like many of us, teachers now working remotely have children of their own at home who need access to computers and homeschooling. Many have small children who they need to keep alive while answering emails. Some may not have the strongest technological skills, and remote learning may be a challenge.
I’m certain many are validating something they already knew- that being a teacher is in no way a bonus when teaching your own progeny.
As I scroll Facebook for something to do I’ve seen numerous posts bemoaning the situation we’re all in. They range from hoping to expel their current students, to throwing schedules out the window, to my personal favorite, “now you know the teachers were right about your kid.”
So it is my great hope that something good will come out of this, namely that parents who are not educators will have a greater understanding of the complexities and sometimes arduous nature of this job. I’ve had two friends ask me “how did you do this for twelve years?” These are friends who are struggling just to get their kids out of their beds, not to mention monitoring them to see if they’re actually doing their work (yes, there IS a PE curriculum!).
I want to personally thank Mrs. Wnuk for her incredibly encouraging comments to all “her kids,” (I’ve shared them all with Zach and even got the hint of a smile, both sides of his mouth!). They mean a lot and I’m sure many teachers in the Brick Public Schools are doing the same. I know this because this town cares about its kids, its teachers work incredibly hard, and we are lucky to have them.
So to all my friends and parents out there thrown into something it takes years to perfect while trying to forage for food and keep your day jobs, hang in there. I am confident many bumpy roads will smooth out soon, and if not, there’s always Netflix. I wish you all the best, and thank you again to Veterans Memorial!
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March 9, 2020
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged adult day programs, autism, autism acceptance, autism awareness at 12:58 pm by autismmommytherapist
Last week I had the good fortune to meet a dear friend for lunch (Indian food, my fave!) in a town halfway for both of us, which means a good forty-five minute drive for each. I am compulsively early to things (my mom is too, I come by it honestly), so of course after running errands I managed to get to the strip mall twenty minutes early. As I drove in I happened to look up to my left at the first building in the lineup (hoping I could compensate my compulsion with some shopping) and saw in big letters the sign “Disability Allies,” and knew I’d found a place to kill some time with a purpose.
I knew with a little luck I’d get my first tour of a day program for autistic adults.
Justin is just about to turn seventeen, so even though I’m a planner extraordinaire I will not start formally looking for about another three years. I thought to myself however that I could go in and try to talk to someone and most likely get turned away, or perhaps I could charm my way into an impromptu tour.
Lucky for me, the latter transpired.
I had a fifteen minute conversation with the director, Audrey, who told me all about her adult child who attended this day program (a plus in my book), how they were relatively new, and her dreams for the place. She could not have been lovelier, taking time out of her day for a fellow special needs parent who was most likely not going to send her child here due to distance, but wanted to “host” her anyway.
We had a lovely chat, and then I got the tour.
I really wasn’t sure what to expect as I’d never visited a day program before. Quite honestly I’ve been told by friends whose kids are in their twenties that my expectations should center around keeping him “happy and safe,” which has never exactly seemed like a rousing endorsement to me. I’ve kept those two goals in mind (including “clean”) and hoped frankly I wouldn’t walk out of these centers depressed that there is nothing out there which will ever come close to his amazing autism school where he’s been for ten years.
Honestly, nothing will ever come close to his amazing autism school.
The truth is however a day program he must one day attend, and I am devoted to finding one that’s a good fit for him, where he gets out into the community frequently, has some fun, and yes, is happy and safe.
After my brief tour I will tell you I have a lot more hope that I can accomplish this goal.
We began in a large, organized and well-lit room where several instructors were working with the disabled adults on theater. We then progressed into a clean kitchen where several other adults were whipping up something delicious (if it wasn’t for the forthcoming Indian food I would have been jealous), an activity which they do several times per week. We finished the tour by ending up in a conference room where the adults were working on life skills such as creating budgets and goals for their future.
In each room, every client looked happy.
Do I think Justin would get anything out of a program like this? No, I don’t. I will be looking for something with daily outings, access to computers and DVDs, maybe even a heated pool if possible. I know my boy’s likes and dislikes and his ability level, and this program would never match them.
But still, on a whim I got to see a place that was clean, and where the participants were happy and safe. I got to meet a director impassioned to deliver excellent services to her charges, who was excited about all the things she hoped to bring to her program in the years to come.
In one day I got chicken tikka masala and hope.
A good day for all.
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February 25, 2020
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 11:45 am by autismmommytherapist
In the past several weeks I’ve been talking to parents of young autistic kids, and it has brought back memories of many of the struggles and triumphs I had with both my children back in the day. There were some dark years back then, and some resounding triumphs too. I remember having an overwhelming sense of urgency to “get it right,” that a certain diet or classroom or instructional methodology would make the difference between whether or not he ever ate a vegetable, spoke, or lived an independent life.
I can tell you now with complete honesty that except for the vegetables, none of those things came to or will ever come to pass.
The truth is despite excellent teachers, therapists, and a teacher mom who worked non-stop with him for almost two years before he went to school because Early Intervention in Virginia for autistic kids was a joke, he will never achieve the latter two goals. I can’t say I’m at peace with this. I will particularly never be reconciled with his lack of future independence due to the safety issues, but I will say I have accepted it.
Really, what else is there to do when you’ve tried everything.
Talking with parents about their young kids and their hopes and dreams for them often makes me take a look at the choices my husband and I made with both boys. There are definitely some things I would do differently.
But there is one thing I would not. And that is knowing when to let go.
Perhaps there are parents out there able to look at their toddlers and be at peace with the fact they’ll never have functional language, but I was not one of those parents. I read everything out there, and at the time a few studies showed that sign language seemed to encourage more verbal speech than other methods of communication. When we finally moved to New Jersey and had excellent Early Intervention services I remember being so adamant that the team sign with him for this reason. I did not take into account his lack of imitation skills, or his fine motor issues. We went on in this vein for months, with little or no progress.
And finally a member of the team pointed these deficits out to me, recommended the PECS system which could eventually lead to an iPad for communicating, and let me think about it.
Although it felt a little bit like I was giving up on speech, I had to look at the big picture- that my son needed a method of communicating or he would be deeply frustrated his entire life. Just because he was bright and I wanted him to talk didn’t mean he ever would. I had to do what was best for him with the skills he had.
Eventually he moved onto the iPad and Proloquo2go, and can communicate his needs beautifully. He had some words before he developed tic disorder, but they are mostly gone now. Thankfully due to his ability to read and type simple words he still has a means to tell the world what he wants.
If I had never listened to that therapist there might have been a different story.
Keeping the big picture in mind is crucial when you’re making the huge, and sometimes small, decisions about your child’s life. When Justin was younger we really wanted him in a public school setting where he’d have opportunities to engage with neurotypical peers. It eventually became obvious that the public school system would not be able to meet his needs, and his father and I had to consider private autism schools where there’d probably be no chance of immersion in the neurotypical world. We made the choice to move him, and it was without question the best decision we’ve ever made for him.
But once again I had to let a dream go and look at what would be best for him in the longterm, and I’m so glad I did.
Through many bumps in the road Justin is thriving now. I know this is in part to his father and I always keeping the big picture in mind when choices are presented to us. It’s so important to look at the skills your child has as well as the deficits and try to match those skills with a particular school program or a method of therapy. Keeping an open mind is key, and remembering it’s about where they’ll best succeed, not how you want them to succeed.
And as adulthood approaches I will try to take my own advice to heart.
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February 10, 2020
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 1:59 pm by autismmommytherapist
He gently pushes my hand away but I remain firm, guiding his hand onto the top of his shorts. It’s a dance we do every morning now, he sometimes resisting putting on his clothes, sometimes acquiescing. I am determined he’ll regain the skills he lost when he developed tic disorder, adamant that he relearn so much of what was taken from him.
It’s my new mission.
Two years ago this fall Justin developed these horrible body movements; sometimes he was frozen for forty-five minutes at a time. We took him to many different specialists, and he received diagnoses ranging from catatonia to his final diagnosis of tic disorder. We saw a lot of regression during this time period- his speech suffered, he lost many self-help skills, and his daily joy seemed to have vanished.
With time, and the right medication, at least the last one has resurfaced.
Justin didn’t truly have spontaneous speech, but he was able to say words somewhat intelligibly on demand, and now he’s really reduced to two words, “help” and “juice.” We are however so happy to see his joy in life return, and with it the affectionate nature that makes him so special. What has not returned are his self-help skills. He was much better at dressing, brushing his teeth, and several other skills before the tic disorder struck, and I’m hoping to get him back to where he was, or somewhere close.
I’m also pushing chores. Why not put him to work?
At Justin’s school they are diligent about teaching him chores. In one of their buildings they have a mock apartment and a kitchen, and Justin has been able to learn chores such as folding towels, putting away silverware, setting the table, etc. We are trying to introduce those activities at home, and so far have been somewhat successful (he likes some chores better than others, but so do I). Some of the students at his school will parley these skills into some sort of job. At this point I don’t see a job in Justin’s future as it is much harder to get him to focus now, but it’s still important he learn these things so he can be a help at home.
And equally importantly, he seems to take pride in what he does, as sometimes we see the glimmer of a smile when he’s done.
I made myself a promise years ago with Justin that I would never try to push him to do things just for the sake of doing them. Truly my goal for Justin is that he be as happy as he can possibly be, and contribute what he can. I’ve seen progress at home these last few weeks- am gratified he’s not resisting, these changes, and is instead embracing them.
Despite having autism, he’s actually pretty good at change.
So we’ll keep at it with these skills, hope to keep achieving more and more until he’s close to independent.
And no matter how challenging it is, I will never give up.
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January 27, 2020
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged "Autism Adulthood", autism, autism acceptance, autism awareness at 10:31 am by autismmommytherapist
This is the year it all begins.
My eldest son Justin, who is severely autistic and non-verbal, is turning seventeen in a few months. This is the year that the inevitable slide to adulthood really ramps up.
The year Jeff and I spend thousands to be his guardian when he turns eighteen.
The year we apply for Medicaid and SSI, which will be welcome benefits.
The year my boy is technically in his last twelve months of childhood.
I admit that sometimes I find milestone years to be hard. If his school went by traditional years he would be a junior in high school, and if he were typical he’d be gearing up to drive, preparing for the SATs, looking at colleges on road trips. I’ve watched my friends go through this right of passage for years, and know that instead we will be spending our time and money petitioning a court to grant us legal rights so when he hits adulthood we can continue to make medical decisions about him.
Sometimes I am okay with this. Sometimes I am really, really sad.
It’s funny, but the realization of the vast differences between his life and that of many of my friends’ kids doesn’t hit me when you think it might. I am generally fine on his actual birthday or at his family party, mostly just grateful we have family to celebrate with him, and thankful he usually enjoys opening his presents and scarfing down a chocolate cupcake.
No, the differences hit me when I see a “driving school car” tooling around the neighborhood with a cautious teen at the wheel. It hits me when I see bumper stickers of colleges on the back of cars at a stoplight. I notice it when I pass the Huntington prep school advertising SAT prep on my way to grab a hot chocolate at Barnes and Noble.
I still have my priorities.
And the thing is, having these thoughts is okay.
There are some who might say they are not okay, that I’m not accepting of my son as he is, not reveling in his personal accomplishments no matter how much they diverge from the mainstream. This couldn’t be farther from the truth. When he recently relearned how to take his shirt off before a shower, I literally did a dance (no, it will not be on YouTube). When he started using a fork about seventy-five per cent of the time I rejoiced, because it was a skill he once had before the tic disorder came calling, and it’s a skill he should have for his lifetime. I am as proud of his accomplishments, no matter how small they might seem to the world, as I am of his little brother’s more typically achieved milestones.
The truth is I also believe Justin is unaware that he will not drive or attend college. He is passionate about watching his DVDs on his player, committed to driving around Monmouth County on the computer using the Hertz Rent-a-Car site, and absolutely devoted to Philadelphia Pretzels. I am confident he thinks his life is good, that he loves his school, loves to go out to most places, and also craves being home.
This knowledge helps my heart immeasurably.
But I know there will always be a wistful component as to what might have been, and a passionate longing for my son to have been gifted with the ability for independence, to be able to take care of his needs when I’m dead. I know I will never let that one go as long as he takes breath.
And I’m okay with that permanent longing too.
In a few months I will gear up to take official lifetime responsibility for him, which is of course a mere formality. I will hopefully continue to watch him reacquire skills, and find joy in his routines. His father and I will continue to try to provide a happy and safe life for him, which in the end is all we want for him with all our hearts.
And no matter what we feel we will move forward, because that’s what we do.
I hope all of you can too.
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January 13, 2020
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 1:51 pm by autismmommytherapist
I pull up to a red light with my car rocking back and forth from the force of my eldest son’s slamming himself into his car seat in time to my eighties jam, and I notice the driver next to me staring toward the back of my car with a smile on his face. I am smiling too, because I know my severely autistic son is thrilled to be going to the pumpkin patch, an event we’ve been taking him to his whole life. My youngest decided he was “too old” for this now, but I know my eldest loves traditions, and I am happy I’m able to keep this one for him.
I’m happy we have traditions. Hell, I’m happy we can go out.
Back in the day when we lived in Virginia just the mere act of putting my son in his car seat was incredibly stressful, for both of us. The period of time when he rode backwards was the worst- some of his angst was alleviated when he could face forwards. There were still a myriad of issues to face when he was a baby and toddler, namely that he hated crowds, lights, and noise. There were often times however when we’d get to our destination and he’d be thrilled to be out of his house, and in those early days I clung to that joy, made it a goal to desensitize him to the world so he could enjoy all of it.
I was determined we would not remain hostages in our own home.
Slowly, over the years, things got better, but it was a tough road at first. I tried to work up to outings with him, which took time and patience but were well worth the effort. To get him accustomed to the mall I first just drove to the parking lot; on subsequent trips we’d take a short walk in the stroller, eventually made it through an elevator ride (particularly challenging), then finally we were able to spend some time motoring through the stores like we were old pros. He grew excited to go there, and frankly I needed those outings out of our house in winter just as much as he did.
I used this same desensitizing approach when we moved to New Jersey and started going to Great Adventure, the boardwalks, and the beach. I won’t say these trips were without mishap. I remember one time the stroller broke and I had to convince my autistic toddler to let me carry him while trying to drag the dead carcass of his chariot back to our car, and that change in routine was not to his liking. There were meltdowns in line for the rides at various venues, and my body to this day bears some of the tiny scars from his bitemarks of frustration.
But I will tell you this now, without hesitation, it was all worth it, because we have a life with our son.
Trust me, I haven’t done all of this on my own. Justin’s school has a program where a BCBA will come out to your home for an eight week session and help you in-house or in the community, and I have used that option many times, particularly when my boy seemed about to give up the beach and the boardwalk, two attractions I was loathe to relinquish because it’s good for him to get out. Just having an extra set of hands on an outing has been a huge help, and I’ve availed myself of that option whenever possible.
There are times however when we have to brave it together just the two of us, and sometimes to not-so-fun destinations like appointments. For the last few years I can say that almost all of our outings have been successful, and that is because of the help we had, but even more it’s because we stuck our trips even when it was difficult.
I can’t stress this enough. Put in the work when your child is young no matter how grueling, and hopefully it will pay off down the road.
Now Justin is even able to handle the two hour plane ride to Disney (which we will be undertaking again soon, so excited!), and last year greeted our newest destination, Universal Studios, with enthusiasm. I know, however, he never would have been able to deal with all the change if I hadn’t gotten him out of his comfort zone when he was little.
I am so grateful for that little voice in my head that told me not to give up, because it completely paid off.
And I deeply wish the same outcome for all of you who are struggling now.
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December 30, 2019
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, sensory friendly movies at 10:38 am by autismmommytherapist
He settles down in his seat, seemingly not at all phased by an “old school” theater chair that doesn’t recline. I quickly pass him his popcorn and a juice box, and we get comfortable as we wait for “Frozen Two” to start. All around us is a bit of chaos- a cacophony of sounds, words and mobile children darting from row to row. I smile knowing that Justin is at home here- his loud vocal stims will not be frowned upon, will be more than tolerated. I know in my heart he’ll last through this movie, and it’s a beautiful thing.
You see, we’re at the sensory friendly showing at AMC Loew’s Seacourt 10 Theater in Toms River hosted by New Jersey Autism Warriors (NJAW) for the first time, and what I hope won’t be our last.
My son Justin is sixteen and severely autistic. For years just getting him out of our house was a struggle, much less getting him to enjoy events. After many years of searching we found that one of the few activities he enjoyed was going to the movies, and he was generally well-behaved there. He loved the films and truly adored the buttery popcorn, and I was thrilled that there was something we could all do together as a family since his brother was four years younger than him.
Flash forward many years, and my almost-teen is eschewing “Pixar movies,” and my son’s deep guttural vocal stims are precluding him from movie-going with a general audience.
Justin’s vocal stim used to be an occasional “eeee”, but now that he’s approaching manhood every sound is octaves lower and really loud, and he seems to enjoy regaling us with them frequently. The last few times we’ve gone to the cinema he’s been really vocal, to the point where I’m focusing on keeping him quiet rather than watching the movie, and really, that’s not supposed to be the point.
Truth be told, I love these shows too.
In an effort not to close him out of one of the few activities he loves, I did a little research, and found out that New Jersey Autism Warriors (NJAW) who partner with Parents of Autistic Children (POAC) offer frequent sensory showings at the AMC Loews Seacourt Ten Cinema in Toms River, NJ. You can find their listings on the POAC website at www.poac.net under the events tab. You have to sign up with NJAW on their Facebook page, and then it’s important that you RSVP how many tickets you want on their Facebook page so they know how many theaters to reserve.
I’m never really sure how something will go with Justin until we try it, but he didn’t seem fazed by the noises around him, and watched the whole movie in its entirety. When he realized it was a “Frozen movie” I even got a rare smile out of him, and I knew I’d made the right decision to take him.
Justin’s world has narrowed greatly as he’s grown older. We used to be able to take him to many POAC events, but as he grew he generally stopped participating in the activities and just wanted to eat their pizza. Eventually my other son wanted to stop attending as well, so we put those events on the shelf. This never quelled my desire to get my boy out and about in the world, as the reality is the rest of his life either myself or his caregivers will have to take him places, so the more exposure he gets to the real world, the better.
I am so grateful we no longer have to relegate the movies to the past.
I did a little research, and there is also a sensory showing at the Marquis Theater Orchard Ten on Route 37 in Toms River, the second Saturday of the month at 11:00. I can’t speak to how that one is run since we haven’t been there yet, but I’m hoping to check it out in the future as well.
This turned out to be a great experience for me and Justin, and I highly recommend you give it a try. Your child can make noise, bring in his own food (please don’t flaunt it outside of the actual theater), and even run around. Truly, anything flies. It is such a gift to be among my “tribe,” to know there is a place where Justin is accepted and encouraged to be.
And that my friends, is priceless indeed.
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December 10, 2019
Posted in AMT's Faves, My Take on Autism tagged autism, autism acceptance, autism awareness, Autism Speaks at 2:14 pm by autismmommytherapist
A few weeks ago I was scrolling through Facebook and happened upon one of my old posts, which was being reposted on the Autism Speaks blog and Facebook page. It was a piece entitled “Dear Future Caregiver of My Son with Autism,” and was a letter to future care givers about my boy and my hopes for his life. For the most part it went over well, although truth be told I don’t often read the comments on my pieces. I rarely learn from the negativity, and often the commentators are “trolls” who upset other readers who come to my defense, and generally I’m just not into the futility of it all. I began writing this blog over nine years ago after my second son was diagnosed, and I’ve learned over time how to deal with criticism. I write for me, and for any reader who can take comfort in my words and realize he or she is not alone.
The piece received about a hundred comments; I skimmed through them and all seemed well until I hit the last one. The writer said: “She didn’t try. She tried to change her son when there was not anything wrong with him to begin with,” which I believe was in response to the paragraph I wrote below:
II 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).
It also may have been in response to my commentary regarding how difficult it could be to keep him from carb overload, that when his DVDs are defunct he can be intractable in his desire to keep trying to play them.
I’ll never know for sure which was this specific reader’s complaint; perhaps it was all of it.
As I’ve mentioned I generally do not respond to commentary left on Autism Speaks or on my blog, as I feel strongly my time can best be spent elsewhere, but I felt I had to respond to this. I’m doing so in complete honesty not because I’m upset. We’ve been an autism household for over sixteen years now, there are many other things far more upsetting to deal with than this. I’m responding because my take on this commentary is that I should be shamed for trying to make his life better.
And I will not remain silent about that.
To this reader I will proudly say I have tried to change some of his behaviors since he was diagnosed, all in the cause of turning a child who was suffering from sleep deprivation, gut issues, transportation fears, a desire to only eat carbs, and sometimes aggression into one who revels in his life and is happy. I will say to this reader you’re dead wrong- I did try, and will continue to try to give him the best life possible, and not just for him, but for the rest of his family too.
There is nothing wrong with my severely autistic son- I love him for who he is. When you’re a parent however, and you see your child suffering, I believe we have a moral imperative to try to ameliorate that suffering. So reader, you’re right about this. I tried to change my son into someone who sleeps, because that’s best for his health and for the health of the rest of his family. I’ve tried to teach my son limits regarding snack foods and introduced vegetables, because that’s what’s best for him. I tried desperately to eliminate his aggression so he could thrive, and in this I am proud to say we are mostly successful. And yes, I’ve worked very hard to change his tolerance to the outside world, not just for him and our family in the present, but for the future and those taking care of him for forty years when I’m dead.
We are not rich. Justin will not have “Rain Man” accommodations someday. He will not have family to care for him, and will be in a group home, and will have to go out some days. I know this because I worked in one for several months, and sometimes the entire group just has to go. I worked hard on building his tolerance to the outside world because folks, I am a planner, and while I see the boy in front of me I also see the man to come, the man who will be living with people barely paid to take care of him, who most likely won’t love him.
I have worked desperately hard to help him become a joyful child who will be as easy as possible for his future caregivers so they can meet his needs when I’m in the grave.
I did try. I tried not to change the fundamental core of who he is, but instead to give him his best life possible. I will continue to try to give him a life he loves, to keep him safe, to push his limits so he doesn’t miss out on anything that could bring him pleasure.
He and his brother are my life. I will always try to create an oasis of happiness and peace for them both.
And in that endeavor, I will never stop trying.
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November 25, 2019
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, tic disorder at 2:28 pm by autismmommytherapist
He steps off the bus and rushes to the sidewalk, making one of his trademark vocal stims as he goes. I am behind him (he is really fast!) and catch up quickly, have to halt as he stops dead in his tracks. “What is it Justin?” I ask, and he turns, looks at me, really looks at me, and plants a big kiss on my mouth. Mission accomplished he turns away, marches quickly to the front door and waits for me to afford him access to our home.
I am thrilled. After the last two years, I will never ever take signs of affection for granted again.
In the fall of 2017 Justin developed tic disorder, which for him would be called Tourette’s if he spoke. It took one agonizing year, eight doctors, and as many diagnoses, to figure out what he had, and more importantly, to figure out how to treat it. I was so grateful someone finally figured it out, and over the course of the past year we have seen many of the skills he lost start to return.
His speech has suffered drastically, specifically his pronunciation, but since he primarily uses an iPad for communication I’ve been able to make my peace with this, as he truly only had a few words to begin with (juice remains, his favorite!). The aggression which particularly reared its ugly head two summers ago has all but disappeared, and he transitioned beautifully to a new teacher this summer and has for the most part had stellar behavior. The terrible body movements are manageable, do not seem to distress him anymore, and are few and far between compared to what he was doing in 2017.
Truly, the one deficit that remained was his lack of affection.
Trust me, I am grateful for the return of so many of these things, am even attempting to get him back on track with chores and self-help skills as best I can. I know we’re lucky we figured this out. But I will tell you I greatly missed the hugs and kisses, as reciprocal affection was a staple of our relationship since the moment he was born. Justin is not one to hug most people in his life- he pretty much reserves that right for his parents, and that’s about it. I will tell you I missed those embraces, I missed them greatly.
Now, slowly, affection is making a comeback too.
And I’m so grateful, because I love him and we share this common need for hugs, and because he is wonderful but life with him is often difficult, stretches me to my limits and beyond. The fact that he’s spontaneously planting a kiss on me once in a while shows how much he’s healed, demonstrates the core of who my son is- a loving soul.
I knew he was still in there. And he’s coming home.
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