April 21, 2024
Year of First Lasts
Once again, the year of first lasts.
Last field day with Justin.
Last IEP meeting for Justin.
Last graduation for Justin, at which I will be a blubbering mess.
But there are first lasts for Zach too, as he approaches aging out of Boy Scouts in February.
Last month it was his last Klondike. A Boy Scout event where troops build their own sleds, travel to seven different “towns”, and answer questions and accomplish tasks.
This year they did it for six consecutive hours in a bone-chilling downpour.
I was there too. Every year a number of grown Boy Scout leaders tolerate me as we head into the woods to officiate.
There is usually a fire, although not this year. The site is aptly named Turkey Swamp, as it truly was during the deluge.
There is always great food, and better conversation.
At one point in the day, perhaps my favorite, men always come around with a bag of candy. And I mean good candy, like Reeses Peanut Butter Cup good candy.
My friends, particularly those from high school who know me as a girly-girly, find it intensely amusing that annually I willingly spend a cold day in the woods with a bunch of men (and sometimes the occasional woman).
I enjoy it immensely.
But the highlight of my day was this.
After we returned to the firehouse, and my son helped unpack the gear, he ran to our car and dove in from the tempest.
I asked him how it went. Given that a handful of years ago he would have been begging me to take him home after half an hour, I wasn’t sure what his response would be.
Instead, I got a “best one ever, because it was the hardest.”
Because that’s what scouting does.
It provides challenges that develop problem-solving skills.
It teaches resilience and self-advocating in a way my generation of parenting can never hope to accomplish for our sons and daughters.
It encourages bonds of friendship to be forged in fire, after learning how to build said fire, that will sustain the test of adulthood, and all its distractions.
It remains one of the best choices of activities I ever sought out for Zach.
Scouting may not be everybody’s cup of tea, or other scout-approved non-alcoholic beverage.
But it helped my son become the incredible almost-man he is today in indelible, immeasurable, permanent ways.
If you’re considering it for your child (and girls are now welcome too!), just remember.
Be prepared.
In a few years, you will be astounded at what they can accomplish.
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February 11, 2024
My Littlest Loves
My littlest, not so little, loves.
Justin, my first-born, my made-me-a-mom-grown-up son.
I love so many things about you.
Your joy when you see a video you haven’t watched in years, and your need to share your elatedness with me.
The way you perform your tasks at your job with such seriousness, and take pride in your work.
Your easygoing nature, which makes everyone who works with you at your school glad you’re on their list.
The way, after a particularly challenging day for your mama, you curl into me on the couch and watch “Landslide” on YouTube, because you know I need a cuddle.
Draping your lanky frame over my short one on weekends, insisting I hold you much as I did when you were a baby, before you’ll get dressed.
Your courage in facing every day, in doing things that are often much harder for you than for others.
Your infectious smile.
My youngest miracle-at-just-shy-of-forty-baby, Zach.
I adore so many things about you too.
Your earnestness about everything you do, whether it be school, scouts, or your chores (most of the time).
Your ability to perceive people for who they are, and to find the good in them when at times that is difficult.
The way you mess with me sometimes, just because you’re a teenager, and you can.
Your inherent kindness.
The loyalty you demonstrate to friends.
The concern you show for Justin even when he occasionally impacts your life.
Your unique world view, which often makes me laugh.
Your passion for justice.
The two of you are my reason for getting up each morning.
You are, without doubt, the purpose of my life.
You have made me a better person.
I love you both with all of my heart, and all of my soul.
Mom
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January 1, 2024
New Year’s Evolution
Yesterday I saw a post on Facebook by a friend. It was an image of a cat kicking the number “2023” off a ledge.
My sentiments exactly.
Frankly, I could say the same about 2022 as well.
Truly, the last two years have been so ridiculous on so many levels, they would never merit a drama on Netflix.
I won’t elaborate on why, but suffice it to say the last twenty-four months have taxed this writer’s “find the silver lining” mantra to the max.
And yet, I will prevail in my quest to provide a happy, safe life for my family, and for me as well.
A life filled with the requisite chocolate and pinot grigio accompaniments, of course.
I’ve learned a lot about “lookbacks” this year, and my lookback over the last twenty have seen a lot of trials, and I’d say an equal number of triumphs. Perhaps in all of this nothing was more difficult than finding out my eldest, most desperately wanted child, survivor of several miscarriages and years of fertility treatments, was autistic; and much more difficult, accepting years later he would always remain on the profound end of the spectrum.
The latter realization was not as dramatic as the day my son’s pediatrician shoved us out his office door with a bunch of articles with the words “autism” in the title and a brusque “good luck.” It was more of a slow reckoning, punctuated by assessments that showed developmental growth in increments, not in the huge milestones I had hoped for.
The exact milestones my second son, also autistic, would later make seemingly effortlessly.
There was a period of time when this latter realization occurred simultaneously when my eldest was five, and my youngest, who had developed typically until the age of eighteen months, within the course of two weeks lost a year of skills in all six developmental domains, rendering him a completely different child than the son we’d come to know, and love.
I was forty-one years old, with two autistic children under the age of six.
It would have been easy to give up hope.
Hope that they, and their parents, would ever enjoy any resemblance to a “typical” life.
Hope that I’d ever sleep again.
Hope that my children would one day not suffer.
There was a period of time during that dark fall it was difficult for me to summon the energy to rise every morning. For a woman who has handled a great deal of “difficult” in her life, even I was overwhelmed.
The truth was, I couldn’t see my way out of the suffering. And if that’s all there was to be, I didn’t see the point in trying.
Fortunately, I had friends and family to lift me up. They gave me the gift of examples of children they’d known, very similar to mine, who struggled, yet eventually attained joyful lives.
Their names became my new mantra, my inspiration for getting up each day.
I am forever grateful for their existence.
I now have two happy, healthy, successful autistic children.
One is an adult who resides on the profound end of the spectrum who is beloved by his teachers, who holds a small job, who greets each morning with enthusiasm. A son we’ve been able to fly with on half a dozen occasions, who is able to do many self-care tasks independently. A child of joy.
I also have a teenager who drives me crazy with normal “teenageriness”, who is kind and empathetic, and will go on to live a more “typical” life, although I know less and less what that really is. He has friends, excels at school, and makes me laugh. He thinks his childhood was fabulous.
They are my life.
They wouldn’t be where they are now if I’d given up hope. They have accomplished these miracles from their inner strength and innate abilities, but they needed a guide, a sherpa to help get them there.
If someone had told me fifteen years ago where they’d be now, during that dark season, I don’t know that I would have believed it.
But the hint of that happiness, the mere thought of attainable peace, was the spark that kept me going.
Forget the weight loss resolutions, the return to regular exercise. Dispose of the self-promises that may or may not be kept.
Keep this one instead.
Never, ever, give up hope. Keep that spark alive. Be relentless in your pursuit of safe, happy, and meaningful lives.
Not just for your children.
For you as well.
You deserve that grace too.
Happiest of New Years to everyone!
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November 23, 2023
Just Get Out
As I’ve mentioned before, this is a year of “lasts.”
Two weeks ago, my family, including my aunt and my mother, flew to Florida for our last semi-annual trip to Disney and Universal. We have been going every other year for ten years, but two years from now my youngest has the audacity to want to go to college, so this was the last time we will participate in “Jersey Week” at Disney.
We definitely finished on a high note.
There were some years with some definite low notes. On our first trip Justin, our now twenty-year-old profoundly autistic son, wasn’t feeling well, and his behavior of course was challenging. I will never forget how we pulled in to my mom’s after our return flight and Justin emitted his loud, hi-pitched “eee” sound with a smile, ecstatic to be home, and my six-year-old burst into tears, because we were home.
Yin and yang people, yin and yang.
There was the year five adults managed to be so distracted that the two boys wandered off, with my sister-in-law discovering them minutes later staring at the water gushing down from Splash Mountain, and my youngest telling me afterwards he saw Justin head off and “just took his hand to stay with him so he wouldn’t get lost.”
Good times.
In the good old days, watching my husband run to the future disability ride to book a time, then hustling back to meet us at our fast pass ride all day long.
At least he got his steps in.
I’ve always said Disney is a working vacation, and it is. The hours I’ve spent trying to acquire the disability pass and requisite passes to daily rides, a system which seemed to change with every trip, I will never get back, as grateful as I am that the system exists. Figuring out why the only time Justin tried to elope anywhere was to FutureLand, for a pretzel, and making sure we didn’t lose any of my family members while in hot pursuit. Sussing out the particulars of the DAS on our phones, or making sure we didn’t lose any of our cards in the old days so Justin wouldn’t have a meltdown if we didn’t get on a ride.
Was every second of aggravation worth it to create indelible memories with my family on the only vacation my eldest would ever tolerate, and actually enjoy?
Absolutely.
Every fall that we are scheduled to go Justin picks out the scrapbooks with the Disney trips in them, and starts playing his Disney DVDs as soon as school starts up again.
Without us even saying anything, he just knows.
We will figure out a way to get him there in the future, which will be challenging, as when he (hopefully) enters a day program after graduation in June he can only miss a certain amount of days, but we will work it out.
The truth is a tremendous amount of work went into creating an environment and a set of circumstances that enabled our son to be able to go on this vacation, and I’m glad we accomplished them when I was much younger.
Taking Justin to the boardwalk and other venues to teach him how to wait on line, because no matter what advantages you have, at Disney you will still wait on line.
Participating in a fabulous program with American Airlines where Justin, my mom, and I went through every aspect of a flight except an actual flight before Justin’s inaugural takeoff to Disney.
Having the staff at his school work on a “wait” program with him.
It all paid off eventually, and I have been able to take my son on a two hour round trip flight six times to a crowded destination where he sometimes had to wait an hour for a ride, and despite his penchant for carbs, we never permanantly lost him.
A win for all.
I am so grateful to my mom for underwriting so much of these trips for us all these years, for my aunt for helping us out this year when I couldn’t attend the entire trip.
Grateful to all the many people who helped teach Justin the skills he needed to enjoy and remain safe.
To Disney and Universal for making the parks more accessible to children like my own.
Much gratitude to be privileged enough to take my kids a half dozen times to the “happiest and most expensive place on earth,” and have it be a safe and pleasurable trip.
Grateful to my eldest son for being able to handle such a venture so my hard-working, wonderful boy will always have memories of family vacations, just like other adult children do.
I know not all families will be able to go on such a grand venture even once with their profoundly autistic children. I am well aware of how fortunate we are.
But my point is this.
It doesn’t have to be Disney. No matter how difficult it is, and it will be difficult sometimes, get your kids out in the world, have them wait on lines, expose them to times when a ride is broken or the weather turns bad, or something happens and you simply have to leave a venue early. Do it while they’re young, get these challenges in their repertoire, get overcoming disappointment in their repertoire, and do it while they’re small enough for you and/or another person to physically carry them out if necessary.
If you can, do the work. Ask for help from their school. Ask for help through Performcare as I have, or engage RBT/BCBA services through your insurance.
Just get out.
After I find the time to relegate this excursion to the most current scrapbook, my son will pull it out periodically, and we will sit together as we go over our trip.
I will ask him if he had fun.
He will give me the slightest nod, yes.
He may gift me with a smile.
He was worth the work.
Happy Thanksgiving to all!
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November 19, 2023
Happy Halloween!
We walk over to my car after taking the required Halloween photos outside our front door, my twenty-year-old profoundly autistic son, dressed as Jack-Jack from the Incredibles, and me as Helen, his mom (of course!). As I unlock the car doors he hesitates, as this is not our usual routine. For years we have trick-or-treated in the neighborhood, making a few rounds and heading back to the house to relax and hand out candy. This year we are trying something different- we will be attending the “Autism Trick-or-Treating for Young Adults” event sponsored by POAC Autism Services, put together by Tim Hogan, a Howell high school teacher who is parent to a young severely autistic adult himself.
I am not nervous about how Justin will handle this change, as one of the things I’ve done his whole life is switch things up when I can just to expose him to different things, and that seems to have worked with him. Plus his grandma is in attendance, and as she is a staple at Halloween I am certain he understands what he’ll be doing next.
Which is acquiring candy he has no interest in, but his mother does.
Within fifteen minutes we are at the over 55 community in Howell, Pineview Estates, which graciously has been hosting this event for quite some time. Frankly, I’ve been wanting to try this event for years, ever since Justin was old enough. First Covid struck, then we missed one Halloween flying to Disney (it was worth the sacrifice), and last year for whatever reason I just wasn’t up to it. This year, I was determined we’d give it a try.
And I’m so glad we did.
We easily found parking at the clubhouse, were given a map, and made our way around the neighborhood, stopping at houses with yellow caution tape attached to mailboxes. Justin took to the change in routine like a champ, and we conquered about a dozen houses before he and my mom were tired and we decided to head back to the clubhouse, for part two of the event, free pizza.
Could that day have gotten any better?
Some of the residents weren’t home yet and left bowls of goodies on tables for our perusal, but many were in attendance. I could tell how much they wanted to give something to this community, and all expressed their hopes we’d be back next year.
We will.
After scarfing down some pizza and saying hi to some familiar faces we head back to our car, full of carbs and satisfied. I ask Justin if he wants to do more in our neighborhood and he shakes his head “no,” which I can respect and am secretly grateful for. We drive back to my house, my mom commenting on how kind everyone was, me grateful for POAC’s, Tim Hogan’s, and the Pineview Estates HOA’s collective generosity.
And I am profoundly grateful that there is one more event out there for such a forgotten subsection of the autism community, our profoundly autistic adults.
We return tired but happy, particularly as I’ve coaxed Justin to choose Reese’s Peanut Butter cups whenever confronted with a chocolate choice, so I know my annual candy stash is complete. I hug my mom goodbye, we happily disrobe from our costumes, and declare another Halloween in the books, well done.
Many, many thanks to Tim Hogan, POAC Autism Services, and the Pineview Estates HOA, for providing an opportunity for our autistic “big kids” to engage in such a lovely tradition in a safe, accepting environment.
Many thanks to the smiles and encouragement of such lovely people who gave me free chocolate.
Happy Halloween!
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October 15, 2023
Raining On My Parade
So yesterday, it rained on our parade.
A fundraiser for our non-profit, HomeLife21, HabCore, and Autism MVP at the Dublin House, had to be cancelled yesterday due to inclement weather.
We will reschedule, and it will take place in the spring.
To say I was disappointed with the weather gods is an understatement.
But the truth is, while I don’t believe everything happens for a reason, I do believe something good can come out of any disappointment, calamity, or tragedy.
I have based my entire life on this premise.
In the spring, I’m hoping hundreds of people who believe in what our three non-profits are doing, namely supporting the lives of autistic individuals, and in our case specifically profound individuals, will gather in the back parking lot of the Dublin House in Red Bank, NJ, listen to a few speeches, drink some beer, and dance their asses off to some pretty great bands.
I’m hoping some people who just like the bands will show up too. The more the merrier.
We will prevail. The autism community always does, because we have to.
The safety, the happiness, the lives of our very children are at stake.
When I get a solid date, I will let all of you know.
In the meantime, I want to thank everyone who has already supported us and who planned to come yesterday. Your kindness means the world to all of us.
Thank you, and see you in the spring!
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October 1, 2023
First Lasts
Call this the summer of “first lasts.”
My son Justin, who is twenty, profoundly autistic and non-verbal, will graduate from his beloved private autism school on June 14th, 2024.
It will be a day of joy, and on my part, many tears.
Also, much wine and chocolate.
This summer I went to his last swim day observation, which entailed me watching him enjoying his school’s pool as I struggle every summer to get my son in mine. Today, I sent him off to his last day of summer school ever.
Yes, ever.
There will be many “first lasts” this year. Last Fall Fun Day. Last birthday party. Last IEP meeting.
I actually enjoy the latter.
Yes, I know this is weird.
I hope I will manage my emotions through all these milestones with grace, but I’m not making any promises.
Justin will do beautifully. Much better than his Mama.
My solace is I’ve already visited his adult day program options, made my connections, ranked my choices. The reality is I will be fortunate to get an offer, and it may not be until months after he graduates.
I’m mentally gearing up for that too, and grateful my other kid will be driving independently by then.
At the end of the day, things have always eventually worked out for this family. Perhaps not in the way I would have wanted with my insane amounts of planning, but they have worked out.
I’m keeping my fingers crossed our luck continues.
I know Justin is not aware of what is coming down the pike. He does not know this is his last day of summer school, that the days of what I consider to be his extended childhood are in countdown mode.
I am grateful for that.
I will start preparing him as best I can, with pictures and stories and an explanation that he will be going to a new program. I will not convey my profound sadness that after fourteen years, time is up.
I will just hope he welcomes the change, and understands it’s not just a brief sojourn somewhere else, and that he will not eventually return to school.
I will never know if he will understand this or not. His comprehension cannot be conveyed by a nod.
But I will continue to have faith in this kid’s remarkable ability to adapt, to transition, his desire to be happy.
I will always have faith in him.
And today, as I hug him when he gets off his bus from his first/last day of summer school, I’ll remind myself of exactly that.
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September 17, 2023
HomeLife 21, Autism MVP, HabCore fundraiser at Dublin House
Nineteen years ago this fall, I took my toddler to his pediatrician for a scrip for reflux.
I walked out of the appointment with a referral to a developmental pediatrician for an autism evaluation, alone, overwhelmed, and terrified.
It was 2004. He was seventeen months old. I drove back home with him to our house in northern Virginia, and didn’t know where to begin to help him.
Over the next eighteen months I received training in ABA and delivered thirty-five hours a week to my son, because Virginia didn’t recognize an autism diagnosis through their Early Intervention practices. We hired a BCBA whose job was to create the programs, but also to give me hope.
Hope that because we identified him so early, he might talk.
Hope that because he was obviously bright, he might learn.
Hope that with quality and quantity intervention, he might end up on the milder end of the spectrum.
Hope that he might one day have a chance at some kind of independent life.
In his younger years, I worried about everything. Would he be able to communicate with us one day in any meaningful way? Would he read? Would he eat anything other than carbs the rest of his life? Would he potty train? Would he sleep?
I mostly avoided my biggest fears.
Would he need lifetime care and supervision?
Would his residence after my death be a place of love, safety, and caring support?
By the time he was six, his father and I knew that although he’d made so many gains- using a communication device to convey his needs, learning to read and type short sentences, a desire to enjoy and be part of the world- it was apparent he would never navigate our world on his own.
Despite all his progress, he would need 24/7 supervision until the day he died.
The thought of him being here for thirty or more years after my death haunted me.
And from this fear and anxiety about his future was born the desire to create a loving, supportive, safe forever home for my boy.
It has become the driving force of my life.
Throughout the years I have made many wonderful friends with other parents of autistic kids, especially a few with profoundly autistic kids like mine. I have nurtured these friendships, shared some of our darkest moments and fears only with them, because only they could truly understand. These friendships are forged in fire, bonds formed by exchanging doctor’s names, school recommendations, accommodating camps, and wine and hugs. They are my core.
I do not know where I’d be without them.
And somewhere along the way, this gift of friendship evolved into a desire to avoid our sons falling off the proverbial autism “cliff” when they hit adulthood. Somewhere along the way we decided we wanted a say in who our sons lived with, and who will care for them when they can no longer live with us. We came up with the idea to create our own version of a group home, with potential activities for other families with profoundly autistic children, as a way to care for our sons and simultaneously give back to a community who desperately needs these outlets. We want our boys’ collective adulthoods to be safe, happy, and dare we say it, fun.
A life that is different, yes. But never one that is less.
I am proud to say that our creation, born of our mutual desire to provide our sons with a safe, stimulating, and enjoyable residential life, is our 501(c)3, Homelife21. We will soon be fortunate enough to be the recipients of a wonderful fundraiser which will be held at the Dublin House in Red Bank, NJ, on June 1st, 2024 from 1:00 to 5:00. The proceeds from that night will be split between Homelife21 and two other autism charities, Autism MVP and HabCore; and the Arato Brothers and the Black Ties, among others, will be the entertainment. We are at the beginning stages of the our journey to create the best adult lives possible for our children, and would love it so much if you could attend and celebrate with us; and/or if the spirit moves you, donate to the cause:
Here is the link to our website: https://www.homelife21.org
Our plan is not just to benefit our boys alone.
We also hope to eventually provide much needed hope and reassurance for other families with profoundly autistic children.
We will continue to work diligently toward our dream so that when we as parents can no longer be with our sons, we will know that they will be cared for, engaged in the community, content.
Because it should be the right of every parent or guardian of a disabled child to have the peace of mind and promise that their child will have a safe, happy and productive environment in which to live after they are gone.
And one of our deepest desires is that we can also be the model for other parents down the road, for all those who believe there has to be something more out there, that the best years of their children’s lives simply cannot be before their sons and daughters cross the threshold of twenty-one.
Please help in any way you can. Thank you!
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July 18, 2023
The Long Goodbye
He sits casually on a couch in the hot, humid lounge area of his dormitory, my sixteen-year-old son with mild autism who is about to embark on a two week coding class at Tufts University. He is immersed in his phone, quite relaxed since we have checked him in, made his bed, and most importantly turned on the air conditioner, which I am confident his roommate will be grateful for when he arrives. It is almost 11:00, and although the dining hall is opening soon I have a train to catch back to Jersey, and I think it would be better for him to approach some students in a few minutes and ask them to accompany him to brunch, rather than to eat with his mom.
I marvel for a moment that I can actually get up and leave one of my children for thirteen days, unaccompanied by a parent. I will never be able to leave his twenty-year-old brother with severe autism alone for five minutes. This freedom never ceases to amaze me.
I will always be profoundly grateful.
I touch his shoulder and mention my plan to him, and he says he wants to go up to his room one more time. I offer to accompany him, to make sure his ID actually works and gains him access, and to have a more private goodbye. We return to his room, and in the empty hallway I suggest we say our real goodbye here. He gives me a massive hug, says “thank you,” and I respond with how proud I am of him, and to make good choices (I’m a teacher, I can never resist that one). I get the standard eye roll and “of course” as we make our way downstairs, and I am out the door into the muck of an untraditionally hotter-than-normal Boston, and wend my way to a street I’m more confident Uber will be able to find.
This is a dry run for college two years from now. He is fine. And although I know this is not the “real thing,” I expected more of an onslaught of feelings, for although he’s been away from us before it’s never been in a situation that mimics the more permanent separation of college. As I anticipated this scene I wasn’t sure how I’d react as I wait, sweltering, for my ride.
It turns out, I am fine too.
It will remain the mystery of the universe why two children with the same biological parents had two completely different types of autism, with two completely different types of outcomes. My eldest who showed signs right out of the womb, is completely non-verbal, due to a severe regression six years ago at fourteen, and requires round-the-clock lifetime care. His father and I are fortunate that he is mostly compliant, happy, and to my profound relief years after said regression, has reconnected to us, although he is profoundly altered.
His little brother progressed normally until an illness at eighteen months (his pediatrician had done the M-CHAT and CARS on him throughout his toddlerhood and pronounced him as passing with flying colors, with just the slightest of speech delays like almost every male relative on both sides of his family). Over the course of several weeks proceeding his illness he lost the speech he had, regressed twelve months in all developmental domains according to his Early Intervention providers, and even more upsetting, lost the spark in his soul.
We thought we’d lost him. And yet, within six months he was again speaking, regaining his personality, mainstreamed completely by the first grade, and at sixteen, attending Coding Academy at an elite university.
I am confident I will go to my grave never knowing why.
I am also confident I will always want to know.
As my phone heralds the approach of my driver I think back to a saying favored by my grandmother, “it is what it is.” And although the simplicity of that message has been infuriating to me at times in my life, it resonates as a profound truth.
This is where we are.
I love them both for who they are.
I will never stop reveling in my youngest’s burgeoning independence.
I will never stop yearning for the same for my eldest.
I will always attempt to meet them where they are, and enjoy the moment when I can.
For me, there is no other way to be where I can fully encourage their personal growth, help them achieve their fullest capacity, and hopefully set them up for a lifetime of safety, purpose, and happiness.
And as my Uber finally approaches, for the moment, it is enough.
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June 17, 2023
Autistic Adult Day Programs
J
June 12th, 2023.
Not an important date for the world, just graduation day for my then twenty-one-year-old, profoundly autistic son.
The last day I have the security of knowing he is cared for, and kept active.
The last day I know for certain he will have somewhere to go.
For the last few months I have been researching day programs for Justin for 2024. Yes, it’s a year early, but I’m a planner, and there will be so much to do for both of my children in the next two years that I decided to get something off my plate much sooner. Getting appointments was grueling. The programs are understaffed, they don’t have ample time for tours, and he’s not eligible for a year.
However, I am nothing if not persistent. Today, I see my last one.
I know nothing will ever come close to the last thirteen years at his beloved private school for autistic children. I am mentally prepared for that. I will still require wine, chocolate and perhaps therapy after his graduation, but I am, in theory, prepared.
The truth is, the places I’ve seen so far seem to have caring staff; the one place I saw with actual clients had adults who looked engaged and happy; every facility I’ve looked at has safety protocols, and schedules.
Some even have snacks.
However, with the exception of one facility that is relatively new, there are waitlists, which for boring reasons I won’t entail here I won’t be able to put Justin on until at least February; or they have informed me that due to lack of staff they may not be taking on new clients next year. Could Justin possibly have in-home care instead? If people are willing to do it, potentially yes. Will we have to kiss a lot of toads to find our caregiver? Most definitely. Will they work more than three consecutive weeks?
That remains to be seen.
For profoundly autistic adults graduating in the next year, there is the extra challenge that all those who qualified for the extra year at school (Justin missed it by a year) are graduating next year, so there are three to four times the amount of graduates as in a normal year.
Three to four times as many autistic adults as usual, all looking for a place to go.
Something has to give. There are thousands of families faced with the daunting prospect of 24/7 care for their adult child, while trying to work, keep them engaged, and get their mammograms.
Something has to change.
In the meantime, I will go to my last facility with a smile on my face, and the truth. That my son is a good candidate for their day hab because due to his inherent nature, hard work, and a lot of luck, he is compliant, loves to go places, and happy.
I will be pleasant.
I may imply a frequent influx of homemade chocolate chip cookies.
And I will keep fingers, toes, and every other appendage crossed that next July he will have a place to go, five days a week, all day, where he will be safe, engaged, and happy.
A place where hopefully they will like him, not just a little, but a lot.
I will be profoundly grateful if you all wish us luck.
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