July 24, 2020

Embracing “All Autisms”

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

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

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

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

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

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

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

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

He did this over and over, and over again.

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

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

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

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

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

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

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

We need to embrace them all.

And we need to do it now.

 

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June 24, 2020

Father’s Day

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

 

Dear Jeff,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He is one lucky boy.

I am one lucky wife.

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

 

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June 11, 2020

To Veterans Memorial Middle School

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , at 10:48 am by autismmommytherapist

To Mrs. Kotsianis, Mr. Carr, Mr. Walski, Mr. Richards, Mr. Calabro, Mrs. Bearse, Mrs. Wnuk, Mrs. Detata, Mrs. Fallon, Mrs. Foley, Mrs. Dunne, Mrs. Hansen, Mrs. Reilly, Mr. Lafferty, Mr. Schnorrbusch, Mrs. Curran, and Mrs. Sammarco:

Last year I wrote a glowing homage to all of Zach’s sixth grade teachers, praising them for their creativity and attentiveness to him. I closed with the wish that his seventh grade teachers would mirror their excellence.

I have to say that for once, my dream came true.

I feel like there will now be a great divide in all of our lives, our time before Coronavirus, and after. I know some things have changed in my family. As horrible as this all is I find we are laughing more, sleeping more, and when not thinking about what’s happening “out there” are more relaxed than during our usual frenetic pace. There are definitely some “befores” and “afters” now, with notable changes.

One thing that hasn’t changed has been the quality of Zach’s instruction, and for that I am truly grateful.

Before we all self-quarantined I had been thrilled with Zach’s new batch of teachers, and the retention of some from sixth grade. They somehow managed to make middle school fun, treated my son with respect and compassion, were always accessible for any questions, and made Zach want to learn.

No small feat with a burgeoning teen.

When I picked Zach up on March 13th I can’t say I knew he wouldn’t return this year. I can say as a former educator I knew what a Herculean task it would be to create even adequate online instruction practically overnight.

And yet, all of his teachers rose to the occasion. Online learning was up and running three days later after one (I’m assuming) very long staff meeting. Certainly, it is not the same as in-school instruction. Yet I feel that Zach is still learning, acquiring concepts, and mastering skills. He still feels connected to his teachers. He is still making progress.

And as I listened to other friends’ woes about their districts’ issues in the following weeks, I knew just how lucky we were once again in regards to Zach’s education.

This year is certainly ending differently than any other year in Zach’s educational career. It is so sad that none of you got to say goodbye to “your kids.” I remember when I left my fifth graders six weeks early to have my first child how heartwrenching it was not to finish with them- the sobbing wasn’t just the hormones. They are definitely missing out on some special events both with other students and staff. It’s sad, and we’re allowed to mourn.

But thanks to your collective commitment to excellence, your constant creativity, and your compassion for all those you teach, my son and others in his class will not only not fall behind, but will be ready to conquer eighth grade in whatever form it takes. Zach will be prepared for whatever challenges befall him, and given the world climate, I am confident there will be many.

Thank you to all of you for your kindness towards my boy. We truly appreciate you!

 

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May 25, 2020

Dear Justin’s Teachers

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

Dear Justin’s teachers,

It would be the understatement of the year to say we miss you.

It’s been ten weeks now of home instruction, and while I feel extremely grateful to say it’s gone well, I know having his mom teach him is no replacement for all of your expertise. The fact that he lets me lead him around the house to do various tasks is not nearly as much a testament to my teaching prowess as it is to the landscape of learning you’ve laid down for him since he was seven, inculcating a love of learning and a willingness to be taught that I could never have inspired here.

Have I mentioned we miss you?

As usual, as soon as school closed you had a plan, and instruction started the first day Justin no longer had the option to physically attend school. You quickly implemented Zoom meetings which always elicit at least a few smiles from my boy when he sees you (and smiles from me when it works), and with your excellent instructions I’ve seen my boy make progress. To my delight I can’t say he’s regressed in any area so far.

May that remain the truth.

The support from all of you has been incredible. The fact that my son can still get excellent ABA services, speech therapy, occupational therapy and PE while a global pandemic is going on is phenomenal. And while I am fully aware that all of you do a much better job than me, I still feel like he’s moving forward and acquiring skills.

I even dare say he’s enjoying it.

I’ve learned a lot about my son these last two-and-a-half months. I’ve completely shed my fears that he’d be miserable at home if there’s a significant gap between graduation and a day program years from now. I’ve learned that my son likes long walks, and won’t try to get into the car to go somewhere a lot more fun than his house. I’ve realized that my boy, who is at the cusp of adulthood, a still-child who has had significant behavioral struggles in the past, is yet again that inherently happy soul I knew in his youth.

And so much of that peace, that contentment, those rare smiles that undo me, is because of all of you and your hard work with him this decade past.

I don’t know when he’ll return to you. But I do know this.

With all of your help, hopefully I will be sending you back an almost- man who’s made progress with self-help skills.

And with luck, I will be returning a student who’s improved academically, with his love of learning intact.

I am confident I will be giving back a child who is infinitely happier seeing his teachers in person than seeing them on a screen.

Thank you for all you’ve done for him and all your students this year, and every year past. We can’t wait until this is over, but in the meantime, thankfully, we’re okay.

We hope to see you soon!

 

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April 2, 2020

World Autism Awareness Day 2020

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , 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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January 27, 2020

The Year it Begins

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , 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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December 30, 2019

Sensory Friendly Movies

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , 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

Never Stop Trying

Posted in AMT's Faves, My Take on Autism tagged , , , 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 15, 2019

Disney Fun

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , 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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August 23, 2019

Life After Twenty-One

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , 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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