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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September 17, 2019
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 1:16 pm by autismmommytherapist
I almost missed the email regarding overnight respite as I was rushing around on a busy Saturday. It was from Justin’s new camp, a haven for developmentally disabled adults and children not too far from where we live. It is both a day and overnight camp, with specific weekends and weeks allocated throughout the year for autistic individuals. Justin has successfully attended day camp there this summer, with another stint coming up during his second summer school hiatus coming up at the end of August.
My heart soared as I read the email, thinking of the potential opportunity for Justin to someday sleep over at the camp. I don’t know if he’ll be able to handle it, but I know if he does well his last three days this summer that we’ll be looking into a weekend this school year, a decision we will make as much for us as for him.
My boy needs to learn to sleep somewhere other than his own bed.
Back in the day when he was little Justin slept over my mom’s house, but at a certain point he stopped wanting to do that, and we stopped trying. He does sleep in a different bed when we go to Disney every other year, but that is with me in the bed next to him, so in my mind it doesn’t really count. The truth is someday he’ll be sleeping in a home that isn’t his parents’, and I really feel we’ll be doing him a disservice if we don’t try to give him other opportunities to get used to sleeping away from home.
I could tell you that I think he’ll enjoy it, but that would be a lie.
I’ve always pushed Justin to try new things, even when he initially seemed like he hated the activity. Call it mother’s intuition, but when he was little I just knew that eventually he would like the boardwalk, Great Adventure, and our backyard pool, and I kept trying to help him acclimate to those activities. Eventually, by pairing them with food (who doesn’t like that as a reinforcer!) and gradually lengthening our stays at these locations, Justin got to the point where he loved going out, would unceremoniously drop his shoes at my feet and look at me as if to say “Where are we going today Mom?”
I know that he’s grown to enjoy these outings both due to the lack of behaviors when we go out, and also to his smiles when we reach our destination. He’s always ready to go home however, back to the sanctuary of his room, his DVD player, and his forays on YouTube. I know in my heart if we drop him off at camp with a suitcase and his pillow he is going to want to go home at the end of the day, but I think it’s time we pushed him past his comfort zone and gave it a try.
Believe me, it’s pushing me past my comfort zone as well.
Justin is sixteen now, just five years away from the conclusion of his school entitlement ending and impending adulthood. As much as a part of me wants to keep him safely cocooned here forever to protect him, I know that’s ultimately not his life trajectory. He won’t like sleeping away from us, but he needs to practice doing it so it will be easier for him to transition out of our home someday to his new one.
It’s time for me to push him to do something he may not like in an effort to make his transition easier for him down the road.
So keep your fingers crossed both for him and for me (I don’t know who will be more nervous that weekend), because it’s time to stretch my boy’s limits and see if he can fly.
And let’s see if his mom can too.
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September 3, 2019
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, tic disorder at 6:42 am by autismmommytherapist
Two years ago this fall my husband and I watched in horror as our non-verbal sixteen-year-old son with severe autism and OCD fell prey to a mysterious malady that would eventually take eight doctors, as many diagnoses, and almost a year to figure out. To say Justin suffered would be an understatement; frankly the rest of his family suffered too just by witnessing his discomfort.
After a number of false diagnoses he was eventually diagnosed with tic disorder, and would have had a full Tourette’s diagnosis if he could speak. For treatment, we simply tripled a medication he was already taking. Although within a few weeks his symptoms, freezing up and being rendered immobile for up to an hour at a time, were dissipated, they’ve never fully receded, and never will. Finally last fall we saw some relief for him. No longer was it a struggle to get him out of bed, get him on the toilet, dress him, get him to eat, get him into the car, etc.
No longer was every single second with him excruciatingly difficult.
My husband and I were immensely relieved to see his improvement, and I’m grateful every day he’s doing better, that we have been able to resume most of his activities with him, and that he’s once again compliant in school.
But the truth is, things weren’t really over in September. Justin’s limited speech declined drastically. His self-help skills, so hard-won, deteriorated.
And worst of all to me, his joy seemed to have disappeared.
Over time, the light has begun to come back to my boy. He is once more affectionate, cracking up more and more over the sounds emanating from a treasured toy or a favorite DVD. He still needs a firm hand to get him to move around sometimes, but he generally is compliant, and the aggression that had resurfaced has mostly retreated. Given that he’s also a teenager and just might not show as much joy as he previously had (my tween is a perfect example) I think we’re on the right track with him, and this is his new normal.
I don’t like it. But I have to accept it.
One thing I will not let go of however is his self-help skills. For Justin’s entire life myself, his father, his therapists and his teachers have worked tirelessly to give him the tools of semi-independence, tools he will need to be successful in an after-21 program one day, and ultimately in a residential program. Over the course of many months we mastered potty training, eating more than one thing, sleeping (that one took years), and going out into the community. We are thankfully back on track with all of those skills, but Justin’s self-help activities have fallen by the wayside, and it’s time for me to man up, and get him back on track.
Fortunately I have help, as his school sends out their BCBAs (Board Certified Behavior Analysts) to do house calls (!). I am hopeful he will once again be dressing himself, brushing his teeth, showering somewhat independently, and my favorite, using a fork.
That last one has remained elusive; I’m hopeful the third time’s the charm.
The BCBA will be coming out to us in the fall, and I think I finally have the mental and physical energy to address these issues. To be perfectly honest with all of you, the tic disorder, and the havoc it wreaked on all of us for the better part of a year, sucked the life out of me. I had anticipated something might strike as he entered his teenage years, but I had no idea how difficult things would be, that this latest disorder would derail our family for a time.
The truth is, I needed time to recharge before I geared up for the self-help fight, and I’m glad for once I didn’t barrel through and take this on immediately. I’ve had to remind myself that he is years away from graduating from his school, years away from when his independence, or what he can acquire of independence, is of paramount importance. We have time.
This will take time.
And it’s so important as we address these hurdles that I have patience, that I refuse to mourn what we have lost and instead focus on what we will gain.
Wish us luck.
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August 23, 2019
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged adult autistic life, autism, autism acceptance, autism awareness at 6:38 am by autismmommytherapist
Last week I had the opportunity to have breakfast with two lovely women, both of whom have children in Justin’s school. As usual our conversation focused on autism (is there anything else to talk about?), and also as usual we expressed our desires to create some type of home for our kids where they could live together one day. I guess a home is a somewhat modified version- our dream would be akin to something that’s a cross between the Kennedy compound and Disney, with every possible accommodation available to our boys. I realized at that breakfast how lucky I am that I have a handful of parents I’d even consider doing some type of group home situation with, if we have the money, if the rules are relaxed, etc.
Truly, I think the greatest compliment I can bestow upon anyone these days is I’d let you in my group home.
About an hour into the breakfast I looked at my friends and said “I bet nobody in this restaurant is having this conversation” and we all laughed, because it’s true- although autism has taken over our world, relatively speaking it is still a rarity in the general population. I’m sure some of the things we said would shock parents of neurotypical children, but these things are just the realities of our lives, and it’s so good to have people to talk with about the more difficult issues of the disorder.
I am grateful for these women.
I’ve also noticed over the past six months or so a shift within me, one in which I’m feeling comfortable beginning to contemplate Justin’s future after twenty-one. Honestly for years we were so overwhelmed just getting through the day that I couldn’t even begin to think about his adulthood, but I’m feeling more ready now. In the next five years I will be taking on applying for Medicaid and social security, applying for guardianship, and looking for a day program where I’m told my goals should be he’s “happy and safe.”
And I’m ready to start talking with friends and family about what his after twenty-one life may look like, and the impact it will have on our family.
The truth is I’m very nervous about him graduating. I’ve heard there’s often a six month gap from graduation to adult autistics starting a day program, and although we might be able to fill the first few months with camp, that still leaves a long fall/winter potentially ahead of us. Justin likes to be home but also likes to be out in the community, and I know in-home supervision is just not right for my boy. He loves school and does better when engaged for six hours a day, so I am confident he will need a day program for his sanity, and mine. The programs are strict about behaviors, so I am hopeful we will continue on our current track and he will be able to handle a new situation behaviorally.
Fingers continually crossed on that one.
I want so much for him to be able to handle a program, in part because I think it will make him happy, and his happiness is important to me.
But I also want him to be enrolled in a program because I want some modicum of freedom in my old age. If Justin is home I need to be home with him, know where he is in our house, keep an eye on him constantly.
It’s not what I envisioned my impending sixties would entail.
I’m writing about this because I don’t think Jeff and I talk enough about the lifelong impact Justin’s severe autism has had on the family, a choice we’ve made because when we’re actually with our families and friends frankly we just want to have fun with them, and talking about these issues is not very uplifting.
But it’s time for us to start talking. It’s time to explain to the people in our lives that when they’re contemplating where they want to live in retirement we’ll be hoping we’re not babysitting our adult child 24/7. It’s time to talk about the fact that there may not be residential funding for Justin until his father and I are in our seventies, and what that reality entails.
It’s time to talk about the fact that Jeff and I are really tired now, so not so confident we’ll be up for this in twenty years.
The truth is of course we don’t have a choice, and we will do the best we can for our boy, as we’ve always tried to do.
In the meantime I need the people in our lives to know at least to the two of us the future is daunting. I have no doubt we’ll have help along the way, as the autism parent community we’ve tapped into is knowledgeable and so helpful, and I’m confident my many future questions will be answered, and help will be available.
I am remaining positive, hopeful for good choices for our son (I like having choices). He tries so hard to be happy every day, I want to see that reality for him.
So keep your fingers crossed for us too, and know we want to start this conversation now.
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August 11, 2019
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 6:36 am by autismmommytherapist
On a Thursday night not too long ago I watched as my youngest son gleefully posed for pictures with Kylo Ren and Princess Leia, then sparred a bit with Obi-Wan just to round the evening off.
And no, he wasn’t at Comic Con.
For the past seven or eight years Zach and I have attended Star Wars-themed nights at the Brick Public Library, and for years those evenings have remained some of Zach’s favorite summer events. In past years the creator, Miss Michele, has included such events as games, raffles (with awesome prizes!), scavenger hunts, photo opps, and the most important event, a visit from the 501st Legion.
The 501st is comprised of a group of volunteers who make detailed Star Wars costume replicas and put them to good use by fundraising, doing charity work, and volunteering. Fortunately for us one of their annual events is our library, and I know it is the highlight of the evening just by listening to the kids who attend and watching their faces as they walk into a room with all their favorite Star Wars characters.
I admit, as a four-decade veteran Star Wars fan, I get a little verklempt too.
This summer Miss Michele as asked to consolidate what used to be several events into one jam—packed evening, and both Zach and I agreed it was her best event yet. Of course since it’s a library there were dozens of amazing books as free giveaways, more incredible books to be won by raffle, and a great talk by the 501st encouraging kids to follow their passion for Star Wars (and reading!).
Trust me, it’s an evening the adults enjoy just as much as the kids.
And truly, nobody enjoys it as much as Miss Michele. I am certain these evenings require a great deal of work and organization on her part, and she continues to outdo herself every single year. Her dedication to children and to fostering their love of reading is unsurpassed, and our town is very fortunate to have her.
And since I enjoy these nights as much as Zach does, we truly are lucky.
This year for the first time Zach won a gourgeous (and huge!) Star Wars book which will take him the entire summer to finish, and the smile on his face when he learned he’d won was incandescent. It was a wonderful way to wrap up our evening, and when I asked my tween if he still wanted to attend next year, there was a bit of eye-rolling with his accompanying “yes Mom!”, so I know we’ll be doing at least one thing together next summer.
So thanks for that Miss Michele, and thanks for creating an event that is the highlight of many kids’ summers.
May the Force be with you all!
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