June 8, 2021
Thanks to Veterans Memorial Middle School
To Mrs. Butler, Mr. Carr, Mr. Filippone, Ms. Damken, Mrs. Dunne, Mrs. Reilly, Mrs. Hayes, Mrs. Marvin, Mr. Connelly, Mr. Rizzitello, Mr. Clancy, Mrs. Rizzitello, Mr. Lafferty, Mrs. Bauer, and Mrs. Mullarkey:
Every year for the last two years I have written a missive praising Zach’s Veterans Memorial Middle School’s teachers, and I am happy to say this year I will make it a trifecta.
I can’t begin to tell you how impressed I am with how well they made this year work with the hybrid of virtual and in-person school. As a former veteran teacher I can tell you that one of the keys to success in the classroom is knowing your students- that is not easy to do when they’re all virtual, or only in school a few hours a week. Despite the scarcity of time in the physical classroom Zach’s teachers managed to pull off excellent instruction, provided comprehensive communication, and did it all with a deep commitment and a sense of humor.
They were truly phenomenal.
Somehow, despite limited time together, this creative group of teachers managed to make eighth grade fun, were willing and able to answer any questions, treated Zach with compassion and respect, and most importantly, made my son want to learn.
And I can truly say this about every teacher Zach has had in the entirety of his middle school career.
Zach attended Midstreams Elementary back in the day, a wonderful elementary school and comfortable haven. I have to admit I was very nervous about Zach leaving this safe cocoon for the rigors of middle school, and there were some bumps in the road along the way. My son was able to weather the storms, make friends and thrive, with all of his teachers willing to help at any time. Just the other day Zach told me he will actually miss middle school (!), and I know this is mostly due to the dedication of the teachers and staff to make it a place of both learning and fun.
I can tell you I am honestly so grateful to each and every one of his educators.
In just three short months Zach will be embarking upon high school, and I am happy to say I feel he will be prepared. In his three years at Veterans he has learned patience, perserverance, and reaped the benefits of having compassionate teachers who encouraged him always to be his best self.
Thanks to your commitment to excellence, your creativity, and your kindness toward those you teach I have no doubt my son will be ready for the rigors of high school, and the life lessons that will accompany the next four years of his journey.
Thank you to all of you for all your efforts with my son. We truly appreciate you!
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May 27, 2021
Adulthood
Dear Justin,
My dear boy, you’ve recently rounded the corner into adulthood, which is still a difficult concept for me to grasp. It was just yesterday that I held you tightly as we danced around to your favorite tunes in your nursery in our little house in northern VA, oblivious to the world. To say there have been ups and downs in your childhood would be the understatement of the century, but I feel in my soul there has been mostly good there. You have grown into a loving and predominantly happy adult, and for that I am eternally grateful.
There were months, no years, I thought we’d never get to this place.
Eighteen is a real reckoning, just like twenty-one will be years from now. Your dad and I are in the process of acquiring guardianship over you so we can make important decisions on your behalf, and we are wading through the morass of Social Security, the DDD, and Medicaid to make sure you receive all the benefits you are entitled to. Several years from now we will be choosing a day program for you, an agency and a coordinator, and eventually a residential placement where you will live not too far from us.
It’s this latter decision that gets me every time.
You see my son, I know in my heart that someday you will live apart from us, that this is a necessary and even a good thing. Myself and a few of my friends are trying very hard to secure a safe place for you, one where you will have good caregivers and maybe the opportunity to work, and hopefully lots of fun. I know your dad and I have to place you there because try though I might I won’t live forever, and I certainly don’t want my demise to be what precipitates a drastic change in residence for you. No, I’d see you settled earlier rather than later, have the kinks of placement worked out, make sure you’re thriving before I depart this world.
One thing before I go however my son- I just desperately wish you could tell me how you feel about all of this.
You see, when I contemplate your future away from your family there is both a feeling of peace and of guilt that co-exist. I don’t know if you’d like to live out your burgeoning adulthood with us, or if you want more independence without us. I can ask you many questions and get the “yes or no nod,” but not this question. This is too complex a topic to be able to rely on that subtle shift of your head, and I know I’ll never know the answer. To be honest, the hardest part of placing you for me is the worry you won’t understand why, that you won’t comprehend that your dad and I won’t be here forever.
It hurts my heart to think you won’t understand.
And yet, I have to remind myself of how many things you’ve adapted to brilliantly over the years. New teachers, and a new school building. Losing seeing your favorite people for over a year. Not being able to frequent your favorite haunts.
This past year there has been a ton of change for you, and you have conquered it all.
So in the end I know we simply have to continue to move forward. I know I have to do my best to create a continuation of the good life you’ve had at home and at your school, continue to find things that delight and challenge you in the years to come.
I need to let you go, just a little.
I have to hope the choices I make for you are those you’d want too.
I’ll always wish I knew for sure.
I love you.
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May 12, 2021
Birthday Boy
It’s hard for me to believe but today, you, my firstborn severely autistic son, are eighteen years old.
It seems like yesterday I was holding you so tightly in your bedroom in northern VA, swirling around and moving to the beat of your favorite children’s CD, secure and content.
I had dreams for you then. Dreams that despite your autism you would one day speak in conversant sentences, drive, go to college, have a friend.
None of those things have come to pass.
They never will.
Instead of posting college acceptances on Facebook, I’m writing of other milestones with this significant birthday. I’m posting about dealing with Social Security and Medicaid, registering you with the DDD, becoming your guardian so we can protect and shepherd you through adulthood. There were no prom pics, no photos of driver’s licenses. There are none of the traditional accomplishments I’m seeing my bevy of friends who all had kids the same year as you were born are sharing.
I would be lying if I said it didn’t make me sad.
And despite what a vocal but loud minority of the autism community might tell me, it is okay to be sad about this.
It’s just not okay to be forever paralyzed by it.
Truthfully, I can say I’m not. You are generally a happy child, for which I am eternally grateful. You love your routine of school, DVDs, the computer, and the occasional Disney movie on Netflix. I know you’re content both from your occasional smiles and elusive laugh, but mostly from the absence of your angst. We worked hard as a family to get you to this place.
You worked hardest of all.
I am constantly thinking of your future, and with a few of my friends we are trying to create a fabulous one for you and their children. I refuse to accept the “cliff.” You’ve been able to have a pretty great life so far and I won’t accept that this will end at 21.
If I could orchestrate this for you from beyond the grave as well, you know I would do it.
I’m working on it.
In a few days you will be an official adult. Your day will still revolve around your beloved school, but will include cupcakes, pizza, and some gifts we hope you’ll enjoy. We will blow out your candle for you, singing “happy birthday” to you which I sense you tolerate only because you know chocolate is coming.
I don’t know if you will make any wishes. But I know I will.
I will wish you remain as enthusiastic about your life for decades to come as you are now.
I will wish your future caretakers will respect you and like you, and keep you safe.
I will wish you laughter and peace, and always, an abundance of love.
I love you with all my heart, my birthday boy.
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May 7, 2021
Happy Mother’s Day
What a difference a year makes.
I am happy to say that this Mother’s Day will be very different than last year’s. On that high holy day we were all still in hibernation- I saw my own mother from behind a closed door, masked and distanced. This year I am happy to say we will all be vaccinated except for my youngest who is not yet eligible. Once again, there will be a day at Great Adventure, and a lovely meal spent with family.
I know I will appreciate the time together like never before.
Mother’s Day has always been a day of reckoning for me as well as fun. I like to take stock of where I am with the kids, what’s going well, what’s not, and what I can do better.
Okay, I spend about ten minutes on that, the rest is fun.
This year I am thrilled to say both boys are doing really well, and this coming off a year of semi-quarantine. Both boys adapted to full and part-time virtual school, and Justin in particular acclimated to not participating in his beloved outings he worked so hard to be able to do. The boys’ schools were amazing with their instructional support, and I am happy to say as they’ve slowly gone back to more traditional schooling there have been very few outbreaks at their respective schools, so our family has felt safe in sending them back. All in all, since last Mother’s Day things have gone as well as could be expected.
Given the circumstances, I can’t ask for anything more than that.
This Mother’s Day will once again feel more “normal,” albeit our new normal. I know I will spend a few moments thinking about the days they were born, and will share those moments with both boys as my youngest rolls his eyes. I will share with them that being their mom is the most important thing I will ever do. I will tell them I’m so proud of both of them, for their inherent kindness and tenacity of spirit and the way they never give up when it comes to achieving a goal that’s important to them.
I will tell my boys I hope the world gives them everything they wish for, but that they truly earn it.
For my eldest I wish for a safe and fun place for him to eventually live, days filled with some kind of work or volunteering and the outings he so enjoys.
For my youngest I wish all “typical” milestones of college, love and independence, not because I wish them for him, but because he desires those things for himself.
I will tell them until my dying breath they will always have my support, my understanding, and my love.
I will do anything in my power to see them both happy, and safe.
Thank you for making me a Mom, I love you both so much!
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April 15, 2021
Big Shot
On Monday, my husband, Justin, and I had an experience that I can only describe as the equivalent of what passes for a spa day during Covid.
No, it wasn’t an elegant meal, or a show. It was simply a teenaged boy getting his first vaccination in Atlantic City.
And it was fabulous.
My son Justin is almost 18 (!) years old, and is non-verbal and severely autistic. He is absolutely amazing with the medical community at large, patiently sitting through vaccines and blood draws, even overnight EEGs with aplomb. When we scheduled his appointment after my husband and I had had our shots and been impressed with how well-run the entire operation was, I wasn’t actually worried about how he’d handle the shot itself. I was more concerned as to how he’d handle waiting at the various checkpoints; if he’d see something that interested him in the large room where vaccines were dispensed and that he’d make a run for it; how I’d handle him alone if they only allowed one person in with him; and how on earth I’d contain him for fifteen minutes afterwards on a folding chair.
It turns out I kvetched for nothing.
While Justin is non-verbal, with his tic disorder, he is really, really loud. After we parked our car we headed over to the entrance and saw a long, albeit spaced-out line to get into the facility, and my husband and I girded our loins. As we approached, each with a hand on one of Justin’s arms, we got to about ten feet away from the entrance and a lovely man in a national guard uniform made eye contact with us and waved us over to him at the front of the line. We walked over with no idea what he would say, figuring we’d have to choose who would accompany him, and he simply said “Come with me,” while moving the barrier for us to get through.
The merest trickle of elation began to course through me.
We followed our vaccine angel past two checkpoints (got the side-eye from one woman but it failed to phase me), and after giving his information quickly at the third were escorted up the elevator, and I figured we were about to enter the massive room where me and my husband had received our shots.
Happily, I was totally wrong.
Instead we were ushered into a large tent strewn with comfy chairs, sensory toys, and a psychedelic light I knew would capture Justin’s attention. Our personal national guard stepped out and a new one came in, telling us the nurse would be in to see to us shortly.
Yes, our own personal nurse.
Within a minute or two she came in and told us right off the bat that she and her co-workers who were working this shift all had experience with autistic patients, and not to worry. She asked the requisite questions about his health, and then asked if we needed more guards to help him get his shot, and if I were comfortable with that. I knew if we could get Justin to sit down, which we did, he’d comply beautifully (clutching one of the sensory toys as if it was a newfound friend).
It was all over in five minutes.
He didn’t get too antsy during the fifteen minute wait, and it gave us time to talk to our lovely escort and nurse. She told us to just ask for the sensory room when we came back in three weeks, and we would get the same treatment. Very quickly our waiting time was up, and we gathered our things, managed to pry a sensory toy out of Justin’s eager hands so it would be there for the next child, and left our personal tent.
The entire experience from parking to exiting was concluded in under half an hour.
If we’d had to wait like my husband and I did, do I think Justin could have handled it? Yes, I do. The fifteen minute wait would have been dicey, but I’d brought some favorite toys with me and I think I could have pulled it off. However, was it nirvana not to have to worry about any of it? Absolutely. It was amazing to know that our second trip back would be the same, that helping our son not to get sick and to stay alive would not be stressful in the least. To be honest with you I almost had tears in my eyes when they led us to that tent, and I’m really only a “This is Us” crier these days.
I teared up because autism is hard. Severe autism is really, really hard. I got emotional because for once, finally, the playing field was leveled and my son had the experience he needed, not the one the other 98% of the population needed to get vaccinated. I felt my eyes well up because some unknown individuals had planned this, had gotten it, had understood our lives.
It felt amazing. And I wish this happened all the time- and I don’t mean that my son would get special treatment. It would just be incredible if the world around him could accommodate to him once in a while, instead of it always being the other way around.
We head back to Atlantic City (the other bonus is, it brings back fun childless days to me and Jeff) in three weeks, and this time I won’t be headed down with any expectations other than non-stressful success.
It will definitely be another Covid spa-day equivalent.
And I am so eternally grateful to the powers that be for coming up with this.
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April 2, 2021
World Autism Day
And yet again, it’s World Autism Awareness Day.
I’ve written many different types of posts surrounding this event over the years. Some posts have focused on the progress made by my kids. Others have centered on the community at large, and the strides we need to take to have more acceptance of each other. Some have just been a plea for better acceptance of autistic people in general.
But this year I’m going to follow up on commentary I’ve seen in the community questioning the title of this day, specifically on the National Council on Severe Autism Facebook page. A suggestion was made that we, instead, need to call this Autism Action Day.
And I couldn’t agree more.
Of course, we still need acceptance and awareness always. Just in my own town in the burbs of Jersey I have seen so much more acceptance of my son over the fifteen years we’ve lived here, mostly by people out in the community. It has been so gratifying to witness more smiles than stares when we go out, and while I’ve really become immune to the latter, it is still great to see that kindness radiating from people we don’t even know.
But Justin is getting older, will be a ripe old eighteen years old in a matter of weeks. In three years his beloved school will no longer be an option for him. The “cliff,” that reference to the cessation of services for autistic individuals after the age of twenty-one fast approaches. I will tell you that I am planning and plotting already, have formed a group of women who along with myself are dedicated to creating a great life for our sons beyond twenty-one. I know I need to take action for this dream to come true.
He deserves to have a great life too, one on his own terms.
There is so much contention in the autism community, and I fear that we are getting bogged down in arguments over whether or not parents are ableist, whether high-functioning autistics know better than parents what’s best for their severely autistic brethren. I read arguments between autistics and neurotypical parents, and yet to date I’ve haven’t seen one mind changed, one perspective altered. And while we all need to voice our opinions, I believe it’s time to focus our emphasis on action, not words.
There needs to be better day programs for our autistic adults.
With 500,000 autistic children becoming autistic adults in the next decade we need safe, affordable housing for them all.
We need meaningful employment for those who can work.
We need better trained and better paid caretakers for our children.
All of these things and more will require action- laws to be passed, work to be done to achieve our goals.
It’s time for all of us to do whatever we can, to take action to bring about these dreams. I know I’ll be doing my own small part, not only on World Autism Awareness Day, but until my son’s dying breath.
I vote for a change to World Autism Action Day, and I plan to live up to it.
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March 10, 2021
The Light at the End of the tunnel
I’m beginning to see a light at the end of the tunnel.
This past week we got the welcome news that our youngest will be going back to school four half days a week, and our eldest will be returning to full days, eventually four days per week. I am especially thrilled for our firstborn, as it is so apparent that he is bored out of his mind in our home, and is always happiest on in-person school days.
To be perfectly honest, I am always happiest on in-person school days.
I know there’s a risk of sending them back more, and I would feel more confident knowing they were vaccinated, but it will be a while until my kids are eligible for that, hopefully before the start of the next school year. My husband and I have had to weigh the benefits versus the risks, and as both of the kids’ schools have taken excellent precautions, we feel it’s worth it to give them some sense of normalcy.
We could all use a sense of normalcy.
As we embark on this next phase of their schooling I just hope they stay safe. It’s so difficult to strike the balance between caution and social interaction. I know both boys have suffered from the lack of the latter this past year (can’t believe it’s been an entire year already!). I know their parents have suffered too. As the good weather returns hopefully we’ll all have the chance for a little more “normal”- I know just getting them to the beach and to our pool last summer helped immeasurably.
Trust me, I am so envious of my Florida friends it’s painful.
We’ve been really lucky this past year with Justin, our severely autistic teenager. He really adapted quickly with very few meltdowns over his restricted life- I was so impressed how he took to wearing masks so quickly and easily. I also know that many other families in our position have not been so lucky. I have friends whose children have been very unhappy with their changed circumstances and have let their families know in no uncertain terms. I can explain to Justin why he can’t go anywhere, but I have no idea how much he understands of what I tell him, and honestly, even if he did understand I don’t think it would affect his behavior all that much. Some autistic kids and adults have really struggled this past year, and I truly feel for all families who have been in this situation.
We’ve all been there at one point or another.
For all the families out there still struggling, hang in there, I believe some respite is around the corner. You’ve all done an amazing job in difficult circumstances for a year, and hopefully some of the stress is going to alleviate itself soon. Try to take care of yourselves as best you can, and ask for help whenever possible.
And remember to look for that light.
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February 10, 2021
We’ve Got This
He eagerly stands by the door as I assure him his bus has come, and my lanky seventeen-year-old with severe autism bounds across the threshold to his waiting ride. I think he’s been at school three days in the last three weeks, due to his school closing for Covid and some inclement weather. He doesn’t smile nearly as much now as he did before he developed tic disorder four years ago (or perhaps it’s because he’s a teenager and doesn’t smile that much anyway), but he’s vocally stimming and steps right up into the bus, so I have to believe he’s happy to go.
As much as I love him, he needs this and I do too.
It will be a year next month that Justin’s school schedule will have been radically altered, and I have to say we are in a better place now than we were eleven months ago. For five out of the six first months of Covid, Justin was home with me being his teacher, both instructing him and doing Zoom calls with his teachers. The home instruction went and is going pretty well, as I still do it with him once or twice a week. The Zoom calls, not so well, and we have chosen not to participate in them as he isn’t getting anything out of them. He is an in-person instruction type of guy.
And as a former teacher who can’t even imagine doing virtual instruction, I so get it.
Justin can’t talk, and really only uses his iPad in school for academics and to communicate his basic needs, so most of the time we have to guess what he’s feeling. He really has had limited behaviors since all this struck, for which I am eternally grateful, but it’s difficult not to know what he’s thinking. I tell him every morning whether or not he has “home school” or “in-person school,” but I never know whether or not he understands, or how he feels. I know ten years ago he would have been throwing his sneakers at me to take him somewhere every day- he’s matured, and seems to get that right now, there’s nowhere to go.
I am truly grateful that he seems to get it.
Only once has he really asked to go anywhere, and that was when he threw the Jenks boardwalk tickets in my lap and stood there expectantly, waiting for me to tell him we could go. I told him it was closed and he seemed okay with it, walking over to one of his toys and engaging in play.
Trust me, I would have loved to have taken him.
I’d like to think we’re in the home stretch now, and soon a more normal life will resume. I have a feeling both of my boys will emerge from this relatively unscathed, but at this point it’s difficult to know. I do know that there are other families with autistic children who are not faring nearly as well, and my heart goes out to them.
All I can say to all of us, is hang in there, we’ve got this.
And as I see my boy take his seat on the bus, I’m grateful he’s done so well so far.
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January 22, 2021
Guardianship
In just a few short months my eldest son, who is severely autistic, will turn eighteen.
I’m having trouble wrapping my head around this, that I will be a parent to someone who is an adult.
Because he is severely autistic my husband and I began the guardianship process this week with our lawyer. We felt ourselves to be pretty well-informed, and even so, it was daunting. In the next few months in addition to applying for guardianship, which allows us to make important life decisions for Justin after he turns eighteen, we will also apply for SSI, Medicaid, and begin the application process for the DDD, the entity from which he will receive services after he turns twenty-one.
The years turning eighteen and twenty-one are critical in the disability world for many young adults. Jeff and I want to make sure we do everything right, and the lists of what to do are long. That part is a bit overwhelming, but also thinking about Justin’s future is overwhelming too. We’ve been told we’ll be old enough to get him on the list for residential care next year, and that the waiting list for a residential budget is about twelve years, which puts us pushing seventy when he will probably go into residential care. We’re nowhere near ready for him to leave us so that is fine, and frankly it’s difficult to think about all the decisions that will have to be made to make that shift.
I just want him to have a good life even after we’re gone.
I’m hopeful we can come up with something that works for Justin. I have several friends with adult children older than my boy, and I’m sure I’ll learn a lot from them as they make these choices. I’m hopeful there will be good options as we’re probably going to continue to reside in the Garden State, and since there’s so many autistic people here I figure good residential options will continue to be created to meet the demand.
I’d like him to be somewhere where he’s safe, and happy. I hope he has a day program he enjoys, and lives close enough to us that we can continue to take him to the beach, Great Adventure, and the boardwalks that he loves. We worked so hard to give him activities and leisure skills that he likes, and I don’t want him to lose those opportunities.
So as we dive into this next chapter of his life I remind myself that we need to take this one hurdle at a time, and we have people who can help us. Back in the day when Justin was really difficult I tried to tackle each issue separately so as to not get overwhelmed, and we need to remember to do this now.
I’m taking a deep breth a I plunge into phone calls, forms and paperwork. I have hope that it will all turn out well.
It has to, because he deserves that.
And I have faith that it will.
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January 7, 2021
This Too Shall Pass
When Covid first began nine long months ago, I remember thinking about what impact this disease would have on the autism community. My kids were 13 and almost 17 when it began, my oldest being severely autistic and non-verbal. I recall thanking my stars that this pandemic had not taken place years ago when Justin, my eldest was younger. Back in the day he would throw his shoes at me every single day so I would take him someplace. It didn’t matter if it was a holiday or a raging snowstorm, he wanted to go out.
With age he has mellowed considerably, and he has taken his semi and full quarantines in stride. I’ve even been able to get him out for walks around the neighborhood which I hadn’t tried in years, which is good for both son and mama. Overall he has done really well during Covid- the only time I’ve known he was missing something was when he thrust Jenks boardwalk tickets into my hands and looked at me like “Woman, why don’t we go there anymore?” He has handled everything as well as can be expected, and so has my other son.
I think things are beginning to wear a little thin now however.
The few times I’ve had to take him to an in-person doctor’s appointment his enthusiasm knew no bounds. I felt kind of guilty not going anywhere fun, but he seemed okay with the excursion.
Maybe, after all, it’s just his mama who’s over all of it.
While my family has been lucky with the way my kids have handled the pandemic, I am certain there are other autistic families in the community who have not been as fortunate. I have friends with kids on the spectrum who not only love traditions around the holidays but have been quite vocal about wanting to continue them, even if they aren’t allowed to at this point. A few of my friends just had to quarantine their kids for two weeks, which basically means with winter break their kids are home for a month. Explaining why to an autistic child does not always translate well. It can be very stressful having any change in routine or any omission of a favored tradition.
I just want families to know many people are going through this- you are not alone.
I hope some relief is on the horizon, although four to six months seems like a long time away particularly with the next four months or so being winter. I hope all of you are coping as well as possible, and that somehow you’re able to carve out a little time for yourselves if you don’t have your kids home 24/7.
As my grandma would always say, “this too shall pass.”
And my wish for all of us is that it passes very soon.
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