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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November 15, 2019
Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Disney, Disney disability pass at 12:16 pm by autismmommytherapist
Last week I had the pleasure of spending a few days at Disney with my family during New Jersey’s NJEA break. We had perfect weather (ponchos never used), were able to get on many rides each day, and most importantly, my severely autistic sixteen-year-old slept well and was an angel on the plane both ways.
Trust me, both of those things could have been deal breakers for our trip.
This was our fourth trip to Disney in the last six years, and each time we’ve gotten it down better and had more fun. I’d like to take a moment to say this. I’m sure some parents of severely autistic children are rolling their eyes at even the thought of taking their child to Disney. Believe me, I was once in that group, and didn’t even attempt it until Justin was ten. Our first trip he was ill and the entire week was a bit dicey, but since then he seems excited about going, even whips out his Disney DVDs weeks prior to leaving. If you even think you can pull it off, it’s worth giving it a shot.
I’m sure some of you are wondering how we manage the lines when we’re down there, especially if you’re aware that the disability pass changed years ago. It used to be that you’d enter Guest Services either inside or outside of the park, ask for the pass, and would be given the pass with the understanding that you could walk up to any ride and enter the fast pass lane at that attraction. Unfortunately people were abusing the system, and Disney had to change the rules. Now one person in your party needs to walk up to the ride (it does not have to be the person with the disability) and get a return time for the attraction. When you return at the appropriate time you are able to go into the fast pass lane.
You can only add on a new disability pass ride after you’ve used your pass on the ride you’ve selected, and there is no expiration time like there is with the fast passes. One tip I’d like to pass on is that when you get the pass (it’s good your entire trip, you don’t need to go back) you can ask them to book your first disability pass ride, which saves a bit of running around.
As a family we developed a system where my husband would run ahead to a new ride as soon as we rode the disability ride and get a new time, then meet us back at our next fast pass ride. Since unlike me he has a fabulous sense of direction he was able to meet back up with us pretty quickly. Both days we spent at Magic Kingdom we were able to ride ten to twelve rides per day (it was not a highly trafficked week) and that includes a lunch break each day. It worked out beautifully for us, and my husband got lots of exercise to boot.
Always a silver lining if you look hard enough.
I am really proud that my son can handle so much change- a plane ride, a new bed to sleep in, tons of people (even on a traditionally not-so-busy week as the first week in November). I want anyone reading this to know that we have had many challenges with Justin in the past. There have been sleeping issues, aggression issues, eating issues, and toileting issues which combined kept us from taking him anywhere other than a beach vacation for a decade. I did try and prepare him before our first trip by showing him old Disney videos and telling him we were going there, and he seemed to get it.
Despite being ill he was really excited our very first day there, and for subsequent trips I made a scrapbook so I could prepare him each time we were going again. If possible I would recommend having your child sleep at another person’s house prior to the trip just to “practice,” and if they have any dietary considerations, research the restaurant’s menus before you go. There are supposed to be gluten-free options at many of the dining establishments, and we never had a problem ordering food for him. Another recommendation is eat an early lunch or dinner, the crowds will be less and you won’t waste so much time eating.
After all, Disney is all about the rides, right?
I consider Disney a “working vacation,” but with some planning (we create a potential ride itinerary in advance) Disney is possible even with a severely autistic child. I will mention that I read recently that an autistic person is suing Disney over the new disability pass changes, and it will be interesting to see what happens with that. I personally know some families who have not taken their kids back there since the changes as they don’t believe they’ll be able to handle not automatically walking onto the ride, so I’m hopeful for them that at least some disable people will have access to the old disability pass.
It is supposed to be the most magical place on earth after all.
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October 28, 2019
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 1:13 pm by autismmommytherapist
This past week I had Justin’s fourteenth (!) IEP meeting at his wonderful autism school, and as I looked around the table at the amazing practitioners who help my son five days a week it hit me that I would only come to this table four more times. I quickly pushed that thought away (after all, what autism parent really wants to contemplate graduation?) and focused on what all his teachers were saying about my boy.
It turns out, after a year or two fraught with trouble, Justin is doing really well.
Two years ago this fall Justin began displaying body movements that would ultimately be diagnosed as tic disorder, an event that would completely derail his life and our family’s as we tried desperately to help him. He was very challenging during that year, both in school and out. Of course his teachers handled it all beautifully, and eventually with a medication change we were able to get him out of the woods. Although he’s not where he once was, he is much improved, enjoying his life and able to go through his routine.
A year later, I can say he’s still in a good place.
And as I sat at the table and listened to what my boy was doing in the classroom, in OT, and in speech, it hit me.
All is good. I can exhale now.
I’ve written before that autism, at least in my house, is a cyclical event. Sometimes the wheel spins in our favor, and my son is happy, engaged, and productive in his life.
Sometimes, he is not. And that affects us all.
One thing I have learned over the years is that it is so important to grab onto those good times and truly appreciate them, because it is a guarantee that more difficult times will return down the road. I am really making a conscious effort to savor these moments that have luckily continued for an entire year, to revel in his happiness.
Because at the end of the day, my most important goal in life is to see both of my boys safe, happy, and productive.
There will be challenges in our future, of that I am certain. In the not too distant future we will be tackling guardianship, Medicaid/SSI, and hopefully finding a good day program for Justin where he will not only be safe, but enjoy himself. I know there will be struggles ahead.
But for now, all is good, we are at peace.
And I take it gladly.
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October 15, 2019
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, autism diagnosis at 10:36 am by autismmommytherapist
“When did you know?”
It’s a question that I’ve been asked several times since my eldest son Justin’s autism diagnosis fifteen years ago at the tender age of fifteen months. I don’t have just one answer for this question however.
I knew of course when the kindly developmental pediatrician told me he had PDD, was too young for a formal autism diagnosis, but I knew.
I knew a month earlier when our not-so-kindly pediatrician shoved a bunch of articles with the word “autism” in the title and practically shoved me and my baby out the door at the end of our appointment.
But truly, when did I really know? I knew at six months when he kept spinning everything in sight, still wasn’t sleeping, was so unhappy so much of the time.
I knew despite everyone telling me he was so young, he would be okay.
To me, back then, “okay” meant not having autism, or having such a mild version of it that he’d still have all the trappings of a normal life- independence, love, friends, a job.
He will never have any of those things. And believe it or not, I’ve mostly made my peace with this.
I don’t really see another choice if I am to live my life to its fullest and be the best mom possible. To accomplish those things, there is no other way for me to live with it.
And to tell you the truth, even with severe autism, at this point in time he is okay.
Sometimes, he’s even great.
Do I wish things were different? Despite making my peace there will always be a part of me wishing he will have the myriad of adult choices his brother will have. I know I’ll never fully let that go.
But I also know that way back when he was still ensconced in my womb my constant mantra was please let him be happy, and healthy. To my everlasting delight the boy who finally likes vegetables is healthy, and most days I see evidence of happy too.
A part of me will always mourn what could have been.
Despite this, I continue to have hope. I have seen several friends navigate the murky post twenty-one waters with their children, and so far, so good. I am five years away from this but of course (!) I’ve begun thinking about his choices, what opportunities he’ll have to live his best life possible.
And to my delight, I’ve found several opportunities that just might fit the bill.
None of us knows what the future holds for our kids, or for us. But it is so important to keep the “hope for happy” alive, to acknowledge that his story might not resemble anything I had planned, but might be wonderful for him anyway.
And as he continues to grow and change and become a man, I will do just that.
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October 2, 2019
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 10:51 am by autismmommytherapist
This past week I had Justin’s fourteenth (!) IEP meeting at his wonderful autism school, and as I looked around the table at the amazing practitioners who help my son five days a week it hit me that I would only come to this table four more times. I quickly pushed that thought away (after all, what autism parent really wants to contemplate graduation?) and focused on what all his teachers were saying about my boy.
It turns out, after a year or two fraught with trouble, Justin is doing really well.
Two years ago this fall Justin began displaying body movements that would ultimately be diagnosed as tic disorder, an event that would completely derail his life and his family’s as we tried desperately to help him. He was very challenging during that year, both in school and out. Of course his teachers handled it all beautifully, and eventually with a medication change we were able to get him out of the woods. Although he’s not where he once was, he is much improved, enjoying his life and able to go through his routine.
A year later, I can say he’s still in a good place.
And as I sat at the table and listened to what my boy was doing in the classroom, in OT, and in speech, it hit me.
All is good. I can exhale now.
I’ve written before that autism, at least in my house, is a cyclical event. Sometimes the wheel spins in our favor, and my son is happy, engaged, and productive in his life.
Sometimes, he is not. And that affects us all.
One thing I have learned over the years is that it is so important to grab onto those good times and truly appreciate them, because it is a guarantee that more difficult times will return down the road. I am really making a conscious effort to savor these moments that have luckily continued for an entire year, to revel in his happiness.
Because at the end of the day, my most important goal in life is to see both of my boys safe, happy, and productive.
There will be challenges in our future, of that I am certain. In the not too distant future we will be tackling guardianship, Medicaid/SSI, and hopefully finding a good day program for Justin where he will not only be safe, but enjoy himself. I know there will be struggles ahead.
But for now, all is good, we are at peace.
And I take it gladly.
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