July 28, 2021

Letting Go

Posted in Uncategorized at 8:37 am by autismmommytherapist

Dear Justin,

This past week I took you to the Point Pleasant boardwalk with a friend, hoping we’d harken back to times of “yore” when everything went smoothly and we both enjoyed ourselves. You see, my son, our last few trips there have been quite stressful, and despite using my “bag of tricks” with you I’m not comfortable taking you there alone anymore. There are just certain attractions that your aging mother can no longer tolerate, but sometimes there is no reasoning with you and your implacable will. When you want something, you want it.

And all the social stories in the world aren’t going to change that.

We’d had two bad experiences there recently but I was hoping the third time would be the charm, plus your mom is ridiculously stubborn. I am loathe to give up a pastime that we’ve been able to do just the two of us for fifteen years, and I was hoping your behavior was just a blip on the radar, nothing permanent.

I quickly found out that despite my own implacable will to get you out in the community, you had other ideas my son.

I had help with me so it wasn’t that difficult to get you back to the car when things went south, yet I was still left sweating and filled with regret. This used to be one of our easy trips, occasions where if I said “no” to a ride you’d listen without complaint; you were just happy to be out of our house.

I’ve noticed since we’ve been going out into the world post- Covid you are asserting your wants more now, and I understand. We had fifteen months of pretty much being in lockdown chez McCafferty, and there are things you want to do, things you want to see. I get it.

The only problem is, you can’t have your way every single time.

We’ve been in this situation before. I remember taking you and your brother on the Great Adventure safari years ago, and listening to your low-grade whine throughout the ride in our car. I recall that for perhaps the first time I wasn’t kvetching that you were annoyed. You were safe, hydrated, and inconvenienced for an hour so your brother could do something he loved. For once, I wasn’t upset that you were unhappy.

I remember feeling liberated.

Now you are bigger than me- taller, and you outweigh me by a few pounds (if I haven’t had too much ice cream recently). I can no longer negotiate or block you from your chosen path by myself. I simply don’t have the strength.

But I do have the strength to learn to let go.

The truth is, it is no longer feasible to take you back there alone. There may be more trips in the future with our family friend and perhaps the BCBAs from your school when that program starts up again. I’m not ruling out the boardwalk entirely.

I am, however, letting it go for just the two of us. I’m acknowledging that now that you’re older I may be letting go of other things too.

And letting go is okay.

I will always help you live your best life. The landscape of that life will change, and I need to be on board with that.

I am trying.

I love you, my boy.

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July 12, 2021

Hugs

Posted in Uncategorized at 9:17 am by autismmommytherapist

Dear Justin,

It happened in the blink of an eye, and then it was over. We were walking near the “big kid” rides at Great Adventure, and out of the blue you grabbed me, spun me around, and with full eye contact kissed me twice.

I saw a mom smile as she walked by.

In those moments I wish I knew what you were thinking. Are you happy the rain is over and we finally got you out of the house? Are you just feeling Mommy love? I will never know.

Some moments like that continue to make me sad. This one, I’m just grateful for the kisses.

There are still so many moments of joy and affection that you express. I worry sometimes (because I always worry, I think you’ve figured that out by now) that I am the only witness to these spontaneous instances of joy, these moments that make you so much more relatable to others. They are few and far between as you’ve entered your teens, but they are beautiful.

I think of the day you cupped your little brother’s best friend’s cheek, looked her in the eye, and didn’t need to be able to say “you belong here.”

I remember the time at horseback riding where you walked out of the barn and put your hands on the faces of the women waiting there and smiled into their eyes, much to their delight.

I recall the time you were tired and hugged your aunt so tightly in Disney, with a look upon your face of pure peace.

I think of the way we start almost every morning with the two of us in an inverted “V” as you drape your much taller frame over mine, and I hold you until you’re ready to begin the day.

There are periods where your affectionate nature is dormant, and I miss these moments then; but I have to remember that most of my friends’ kids are embarrassed by their parents now, and hugs are few and far between. You are being developmentally appropriate, and I have to respect that.

But I love when your inner nature breaks through and I get to hug you once again.

I love you, my boy.

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June 21, 2021

Father’s Day

Posted in Uncategorized at 7:05 am by autismmommytherapist

Dear Jeff,

Almost eighteen years ago to the day you became a Dad for the first time. I’m having a hard time grasping that we’ve been on the parenthood/autism journey for that long, because it seems like just yesterday our nurse handed our squalling bundle of joy to me.

Actually, it’s both the blink of an eye, and feels like centuries ago too.

We had our kids late and had watched our siblings and friends cross the parenthood chasm, and we thought we were somewhat prepared.

Ah, how the universe must have been laughing at us.

We weren’t prepared. Not for the years of sleepless nights, the first eighteen months of denial that something was very different about our son, nor the sixteen years afterwards where we’ve done our best to provide him with a safe and happy life.

And at this, you have excelled.

To say this hasn’t always been easy would be the understatement of the millennium. From navigating the labryrinth of insurance hurdles to getting our son to realize food is fun, you have been there for him and for me through it all. Somehow you have managed to balance work and parenting so that both boys have always felt you to be there for them, have always been able to show them how much you love them.

And even though Justin is not often outwardly demonstrative I know he feels that love, returns it to you in spades, and Zach does too.

I can’t thank you enough for all the years of being my sanity, the voice of reason, the person that calms me down when all I can see is the cliff.

I can’t thank you enough for providing for our family, especially those years I was home working with Justin.

I can’t thank you enough for all the myriad ways you try to connect with the boys, from tickling Justin and imitating his favorite toy to talking with Zach about things I will never understand.

I can’t thank you enough for helping me to move on from my initial dreams for Justin to accepting his future, for showing me how to revel in the fact that our profoundly autistic son is happy with his life.

I can’t thank you enough for always being there for all of us.

For all of these reasons and more, thank you for being such a great Dad.

We love you, happy Father’s Day!

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June 8, 2021

Thanks to Veterans Memorial Middle School

Posted in Uncategorized at 11:08 am by autismmommytherapist

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

Posted in Uncategorized at 9:12 am by autismmommytherapist

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

Posted in Uncategorized at 1:35 pm by autismmommytherapist

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

Posted in Uncategorized at 9:36 am by autismmommytherapist

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

Posted in Uncategorized at 11:33 am by autismmommytherapist

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

Posted in Uncategorized at 6:20 am by autismmommytherapist

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

Posted in Uncategorized at 10:10 am by autismmommytherapist

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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