December 1, 2021
Leaving Your Comfort Zone
Dear Justin,
A few weeks ago I wrote about an excellent IEP meeting I’d had with your school ( I know, don’t hate me), where I asked about the possibility of your having a job. I remember mentally crossing my fingers that Covid wouldn’t rob you of this anymore, as I’d hoped you’d have had the experience by now.
Apparently, crossing fingers works.
I was told that you would indeed have a job, and as of last week you were officially doing office work in a nearby municipal building. It’s only for an hour, although maybe they’ll increase your time there, but that’s good enough.
Last week, my boy, you went diligently to this new space and shredded papers and removed staples, things you have been doing faithfully for a long time at school.
I couldn’t be more proud.
In less than three short years you will be leaving your beloved school. I don’t know what kind of opportunities I will be able to provide for you. There will probably be a day program, and if my wish comes true, my friends and I will eventually be able to provide a wonderful place for you to live coupled with the outings you so enjoy.
A job, I am not so sure I’ll be able to provide for you.
So I’m thrilled for you for now, for whatever the next three years brings for you in the world of employment.
I’m proud you’re leaving your comfort zone at school to do this.
I’m proud you were able to transfer skills to a different location.
I’m proud that you seem to take pride in your work,
I’m just proud of you in general.
Keep up the good work my son, I love you!
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November 15, 2021
Disney Once Again!
It’s a “Disney year” chez McCafferty, and this year we once again had the opportunity to take our kids to Disney World (Magic Kingdom and Hollywood Studios), including our severely autistic eighteen-year-old son. The weather was fabulous, Justin did beautifully on the plane and in the airport, and the trip, as it has been the last four times, was a resounding success.
As I know many families with autistic children aren’t even going to the grocery store with their kids due to meltdowns, I know how lucky we are, trust me.
I consider Disney a working vacation. You can’t “wing it” at Disney with an autistic kid- it takes a lot of preparation. Every time we’ve gone to Disney there has been some alteration of the disability pass. First it was cards you had to carry, then it was running around the park getting return times for rides on our passcards. This year was once again different on several counts, and required a lot of planning on our parts.
Hence the “working vacation.”
Disney is now implementing an opportunity to get approved for the disability pass prior to your vacation (you can still do it the old-fashioned way by going to Guest Relations as soon as you enter the park.) This new system involved going to the Disney website and getting in a queue for a virtual chat with a cast member who would decide if Justin qualified for the pass, then sign us up for two disability pass rides each day we were going to a park. We had to have all our guests listed prior to doing this so everyone could be included in the pass. My husband and I thought this would be a great way to avoid the sometimes lengthy lines at Guest Relations, so we thought we’d give it a whirl.
Fourteen hours later (I kid you not) we were good to go.
Once you register for the disability pass you are put in a virtual queue to wait for a cast member to come on and “chat” with you. The first day we did this we got kicked out three times (once because I had the audacity to go to the bathroom and the cast member signed off), and the third time never made it to the second queue. So my husband and I strategized, and realized the next day my son had a half day (the disabled person has to appear for the chat), we timed it out that we needed to start the process about four hours before he got home, and that’s what we did.
We were in the first queue for about two hours, the next one waiting for a virtual chat with a cast member for three, and luckily Justin got home about a half hour before the cast member came on to assess him. She deemed him eligible, then put us into another queue where we waited about twenty minutes. The third cast member asked us what rides we wanted for each day. We were not allowed to ask for times. After a few minutes we received our two disability pass rides for each day we were in Disney. The process, when not getting booted out for neglect, took about five hours (this was the first week they were offering it).
Once we got the hang of it it was worth the wait. Our only concern was that our other son really wanted to ride “Rise of the Resistance” and we couldn’t get the disability pass initially for that ride, but were told that after we used our two rides we could go on the “My Disney Experience” app and try to book it. We got lucky. Our second ride wasn’t until the afternoon, but as soon as we rode it my husband went on the app and booked “Rise”, and since it was only a two hour wait (same as the standby line minus ten minutes) we then went on the Star Tours ride several times, got snacks, and blissfully fulfilled our Star Wars needs with joy.
Honestly, I’m not sure who was happier, our youngest son or his parents.
Just so you know, you can still walk up to an attraction and book a ride, but it is much easier to do it on the app. Also, and VERY important- the ride reservation now expires an hour after it’s booked, which is different than before. All in all we were able to get on about nine or ten rides each day, did wait on a few hour long lines but not many, and got to do everything we wanted to do while we were there.
A Disney miracle.
I will say that there was a lot of work prior to our trips to get Justin ready for this experience. Years ago we attended a program with American Airlines where Justin went to the airport and did everything but takeoff just to get him used to the experience. For years I took him out in public even when it wasn’t pretty, having him get used to rides and waiting in line. We waited until he was ten to take him because we figured a little maturity couldn’t hurt.
It turned out we made the right call to take him, and have been going every other year ever since.
Just a couple more tips- if your child is gluten free most restaurants have gluten-free options, you can research this before you go and pick a few in an area of the park you think you’ll be in around lunchtime. Eat early! We are only there at lunchtime but always try to eat around eleven. Always have a backup plan.
Although it was a pain (literally, my husband had neck fatigue from sitting on the computer so long) it was definitely worth the trouble to book our disability passes virtually. Who knows what the situation will be like in two years, but I would do it again.
I hope this helps any of you planning on heading down to Disney in the near future. Enjoy your trip!
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October 25, 2021
Off to Work You Go
Dear Justin,
This past week we had your annual IEP meeting, held virtually due to, of course, Covid. I have a confession to make.
I actually enjoy your IEP meetings.
For many people IEP meetings are a contentious experience akin to root canal or a trip to the DMV, but for me dear boy, it’s mostly been a chance to hear in greater depth all the wonderful things you’re doing, and see how much your teachers care about you.
It’s just a touch of a spa day for me.
This year I had questions. I wanted to know if your monthly outings will resume soon (they will), if in-person BCBAs will be reinstated (they will too), but mostly I wanted to ask if you, my boy, could have a job.
And the answer was a resounding yes.
I’m not sure what it will entail. It could be folding pizza boxes. It could be wiping down equipment in a gym. It might even entail light office work (not sure what that is, but it sounds fun).
I don’t really care what it is as long as you like it.
In three years you graduate, and although I’m going to do my best to have you continue living your best life, I’m not sure I can pull off a job or volunteering for you. So knowing you’ll have this experience until you’re twenty-one means a lot to me.
And I’m hoping it will mean a lot to you too.
Who knows. Maybe within the space of a few months every member of the McCafferty clan will be working except your little brother (I’ll have to look into that).
Perhaps you will go to an office, or a restaurant, or a gym and engage in an activity that will give you pride, or at least get you off-campus for a few hours, which I know you always think is fun.
I hope you love what you do.
I can’t wait to hear about it and see pictures. Know I will be rooting for you.
So proud of you, my son.
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October 13, 2021
Silence
Dear Justin,
It’s so quiet in the house this morning. Both you and your brother are off at school, your dad is out running errands, and for once I am alone.
I won’t lie to you. Especially after all the togetherness of Covid, it’s bliss.
On days I don’t work I have about an eight hour period of quiet, a time where I can recharge, get things done. It’s also a time to think.
And I have to tell you, I’ve been thinking about how in a different life I’d be missing you much more than eight hours daily.
You are eighteen, my boy. You won’t remember this of course, but nineteen years ago I was a teacher in Virginia, and there must have been something in the water that year because seven or eight of us got pregnant within months of each other. I am still on Facebook with many of those moms, have watched as their kids grew up, their development so different than yours. I think I’ve handled it quite well over the years, happy for them, with pride in your path as well.
It was the pics on Facebook of everyone’s “college reveal” (this is a thing now?) that got to me.
When I gave birth to you I figured about seventeen years later we’d be touring college campuses, filling out applications, waiting breathlessly for that letter (or now email) telling us whether or not you were accepted. This was a reasonable assumption on my part. Despite the fact that autism seems to be everywhere its incident rate is low. Your family is college educated. I assumed that would be the path you took.
I assumed wrong.
This year, instead of stressing out over FAFSA forms, your dad and I have been wading through various government agencies and lawyers trying to complete your version of college acceptances- acquiring guardianship over you, Medicaid benefits, Social Security payments, updating our will and trust to better accommodate you and your brother.
I will say definitively it has not been as much fun as touring a college campus.
The truth is Justin, your dad and I compartmentalize a lot of things in regards to you, but sometimes we can’t. I am sad you don’t have this choice. There are people who will vilify me for feeling this way, but these are my feelings.
Some days, my feelings were all I had left.
I just want to put this out there that it’s okay to be sad that you won’t have the option of college, or marriage, or kids, or a career. While I’m grateful you are mostly happy with your DVDs and the computer and outings, I wished for a bigger life for you.
It doesn’t mean I don’t love you. It doesn’t mean I’m not proud of you. It doesn’t mean you can’t live a life on your terms that makes you happy.
It’s okay to be sad and simultaneously grateful.
It’s okay to mourn things that cannot be.
Feelings are okay as long as they don’t paralyze me and prevent me from helping you live your best life.
Because at the end of the day, both of you boys fulfilling your dreams is what drives my every waking moment.
I love you.
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September 29, 2021
My Eagle Scout
I found out at a committee meeting that you were officially an Eagle Scout, and amidst the congratulations from the members I felt such a flush of pride that you were now “official” from National. You had had your Board of Review two months earlier, but you never know for sure, so we were good and didn’t tell tons of people.
I am so relieved. Now I can put this on Facebook.
On the way home I thought about how great it would be to tell you you got approved, and I remembered how excited you were the night of your Board of Review, how you hugged me so tight. One of the people conducting the board said they’d never seen a scout smile so large, or seem so happy.
That meant the world to me.
The last three years of your working toward this amazing goal have been both fun and arduous. Trying to advance in ranks and achieve merit badges during a worldwide pandemic is not the easiest thing in the world, but you did it. When we realized you’d have many more hours of free time than usual due to virtual half days you willingly dove into the work, and you accomplished so much. There were roadblocks along the way, but you surmounted them.
There were three intense weeks of virtual merit badges in the summer where I had to lie on your bedroom floor so you weren’t “alone” with your merit badge counselors (and I had to keep quiet!). There was rock climbing, camping, and a family hike at High Point where Justin left us in the dust. There was your Eagle Scout project which involved so much planning, and help from your beloved great-uncle, an Eagle Scout himself.
Through it all you were focused and enthusiastic. You made me proud.
Pretty soon we’ll have your Court of Honor, where I’ll get to thank the village that made this happen (and it was a large village), and I’ll get to brag a bit more about you. I just want you to know I’m proud of you, but I was proud of you long before this. You have met every challenge in your life with an “I can do it” attitude that never fails to amaze me. You are a kind, compassionate diligent scout and teen, and I know you will go on to do great things in scouting and beyond in your life.
I can’t wait to see how it all unfolds.
So proud of you Zach, and I love you so much!
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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.
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