September 15, 2021
Seen
Dear Justin,
A few weeks ago your dad and I took you to your uncle’s house, where you entertained yourself for hours with toys and let your parents talk to people we haven’t seen since Covid. You did great until the very end when you wanted to go down into the basement where you really shouldn’t go, and it took three of us to “escort” you out.
I put that one on me. I got greedy for conversation and we stayed a bit too long. I forgot your limits.
On the ride home your dad and I commented on how great you’d been and how we’d actually finished conversations with people, and I thought about what this day had meant for you. I know you were content because you weren’t trying to go inside, were happy to play with your toys outside on the patio. I remembered how people took the time to say hello to you, and how you didn’t acknowledge anyone, simply kept your hands and eyes glued to your toys.
I thought about how you were in your own little world.
The truth is, I think a lot about how people, from strangers to your own family, see you. You don’t interact with people much. A “hello Justin” does not elicit a response from you. When asked for a hug, you will often ignore the request, or do what your dad and I call “the presentation of the forehead,” where you will ever so slightly lean forward to be hugged or kissed.
It could seem to all around you that you have no emotions, no connection to the world around you.
And that’s why I write about you.
I want people both in your life and at the perimeter to also see the boy who on every other walk with me stops dead in his tracks, looks me right in the eye, and plants at least four or five kisses on me.
I want people to know that when your brother’s best friend came to our house you cupped her face and smiled into her eyes, letting her know she was welcome, was one of us.
I want people to see the boy who at one of his last horseback riding lessons walked up to two random women, put your hands on their cheeks, and smiled at them to let you know this is one of your favorite places, and all is right with your world.
I want people to know the man who sees his aunt only once every other year, but still draped his lanky frame over hers at Disney when he was tired.
I want people to see that you care. That you can connect.
I want people to see that you love.
I have always had that bond with you, since you were an infant and perenially curled up on my right side, as you still do every morning, our bodies leaning into each other in an A frame so your height doesn’t overpower me.
I am eternally grateful for it.
I hope people truly see you, especially your caregivers to come. Because you, my boy, my beautiful boy, have a soul worth knowing.
And I’m so lucky that you’re mine.
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August 30, 2021
Turning 18
Dear Justin,
Yesterday, your lawyer went to a courtroom and convinced a judge that it would be in your own best interest to have your parents be your guardians and caretakers until we no longer can.
Apparently, it all went without a hitch, and for that I am grateful.
I have to admit, this transition to adulthood has been more difficult than I anticipated. Maybe it’s the enormity of knowing I’m still raising an adult who’s severely disabled. Perhaps it’s the questions on the forms, all of which proclaim you unable to do so much.
There are no questions on those forms requiring answers regarding how your smile lights up a room, and how you give the best hugs.
I think your father and I spend a lot of time in the here and now, which is not a bad thing. This paperwork forces us to look to the future. Some of it is good, some of it I will never make my peace with.
I’m still working on how you can live a normal lifespan, yet I outlive you.
There’s so much still coming down the road as well. Your second big transition time will come in two years, as we navigate the years after your beloved schooling ends, finding a day program for you, an agency to coordinate it all, and if we can pull it off, a fabulous place for you to live.
I just want you to know I will be working tirelessly so you can live your best life.
I look at you at the amazing age of eighteen, and I see a man who struggled mightily over the years to conquer all the impediments to your happiness. There were sensory issues, sleep issues, eating issues, and behavioral issues as well. What kept me going in even the darkest times was my gut instinct that inside of you was a boy who wanted to be happy, who wished to let his affectionate nature dominate your waking hours. I knew, with time, you could have a good life.
And as I gazed at you yesterday on the beach and watched your smile spread across your face as you discovered a favorite toy in your bag, I knew we’d won.
I will always fight for you. I will always love you.
You have my heart, my happy boy.
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August 11, 2021
Tic Disorder and Autism
Dear Justin,
Yesterday I was scrolling through my phone as I waited for water to boil (thinking how this always takes forever) and I came across an old video of you when you were perhaps ten years old. You are sitting in the conference room of your school, customized book in hand, slowly reading it to your mom, speech teacher, principal, and other teachers.
Your pride in yourself is palpable.
I admit it took my breath away to see that clip, because unbeknownst to everyone at that table seven years later tic disorder would come to call, robbing you of your limited speech, and leaving what must be to you incredibly annoying body movements in its wake.
It’s been four years, and I’m still not over it.
You see, I had thought we were past losing things, milestones and such. You never really regressed as an infant or toddler- the signs of autism in you were strong at the getgo, and instead of a relinquishing of speech there was simply an absence. You were spinning things relentlessly by six months of age, mostly unhappy with the world around you as you faced your sensory challenges. If we’d known how to look, autism was there when you entered this world, not lurking around a corner to manifest eighteen months later.
In some ways for me, having signs along the way made it easier to accept your diagnosis- there was no cliff you fell off of, just a slow accumulation of differences.
I think this made it so much harder for me and your dad when over a period of a few months you lost so much.
I will always mourn the words. What I am eternally grateful for is your affectionate nature came back in spades, which had gone on hiatus when you first showed symptoms. There isn’t a week that goes by without a mighty hug, kiss, and glorious eye contact from you. Your inner personality prevailed.
We are all so lucky.
But I won’t lie Justin- it’s hard. These unwelcome body movements may preclude your having any type of job or volunteer work, two things I’d always hoped you’d be able to do and find enjoyment with. It’s not that you need to earn your keep- it’s just that I thought you might find these things fun.
And you know your mom has always wanted you to have fun.
I’m sorry this happened to you, my boy. Fortunately, I think your days are more punctuated with joy than with sorrow, and for that I will always be grateful.
I will always do my best for you.
I love you, my son.
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July 28, 2021
Letting Go
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
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.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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June 21, 2021
Father’s Day
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
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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