Although it’s been seventeen years since my family began their autism journey, I remember the sense of both relief and panic that assailed me after my eldest son’s diagnosis. There was so much to accomplish. Finding and training therapists because Virginia’s Early Intervention system was a joke for autistic kids; teaching him how to eat; how to sleep; and at the time, our hope we would be able to elicit functional speech. I was so overwhelmed in those early days and months, but I recall that one of his therapists said something to me that stuck even in those sleep-deprived days.
Don’t forget to teach him how to have fun.
I know it sounds ridiculous to have to teach a child to enjoy himself, but with Justin, we did. He could spend hours amusing himself by spinning objects, and he loved his Baby Einstein videos, but that was about all that enticed my son from a pervasive crankiness I was desperate to alleviate. When he was little Justin hated the car (we later had respite from this when we could turn his car seat around), so most of our outings were relegated to the stroller and neighborhood walks. I knew that I would have to encourage Justin to like leaving the house and doing things, both for my sanity, and for his future.
Even then I knew if he ended up living in a group home one day, he’d have to leave it eventually.
Slowly, I taught my son to tolerate the mall by taking longer and longer trips there- eventually, especially after we were able to turn around his car seat, he began to get excited when I put him in the car. We conquered the sounds of the parking lot, elevators (that took a while), and the general noisiness of the mall itself. Later, when we moved to New Jersey, we began taking outings to our local boardwalks, Great Adventure, our pool, and the beach. At all of these venues we had to build up both longevity and tolerance. In the beginning I sometimes bore the marks of his discontent with waiting on line, but in the end it was worth it.
Trust me, it would have been so easy to give up. All of this acclimation took years. Sometimes, it felt hopeless.
But it wasn’t. And now, at seventeen, there are a multitude of places we can take him, including Disney and Universal Studios. And I am convinced he would never have been able to tolerate the plane ride or the parks if we hadn’t accustomed him to venues when he was very young.
Leisure skills inside the home are important too. We are fortunate in that Justin enjoys the computer, his DVDs, and even will occasionally watch a feature movie on tv. We tried many activities over the years; many did not stick. The important thing however is that we tried, so we could cross some things off the list with at least knowing we’d given them a shot.
If you’re just receiving a diagnosis for your child fun is probably the last thing on your mind- there are more immediate needs to attend to. One outlook however that has served me well over the years when I’m confronted with an issue with Justin is to ask myself if this will be a problem for his caregivers when his dad and I are gone. If it’s not, I can drop it. If it is, I do my best to come up with a solution.
The truth is, Justin will reside with caregivers for going on forty years of his life. They will want to leave their group home on occasion; by exposing Justin consistently and repeatedly to experiences outside the home he came to love outings, which will help him later on.
Yes, I’m a planner. But whether I want it to or not that future where I’m not there for him will one day come- my plan is to leave him as happy and accommodating to other people’s plans as humanly possible.
Leisure skills are key. When the dust has settled and more pressing concerns are addressed, give an outing a shot, even if it only lasts five minutes. Try to find that one thing your child is passionate about that can be a sustaining interest for his lifetime.
It is with great delight that I will announce to all of you that I have some news. No, I haven’t won the lottery or cleaned out my garage (hopefully done before I move someday). I have yet to open my new pressure cooker I got for Christmas, and my “losing the Christmas pounds” regimen has yet to really take off (fingers crossed on that one).
No friends, my news is this. I have a new project.
I’m going to try to help create a group home for autistic adults.
No, I’m not doing this on my own, and I expect it to take years. I will be working with some wonderful parents from SSNY (Someone Special Needs You) (ssny.org) to raise money for the home and get land donated by developers for the project.
Do I know how to do any of this? Nope. It will be a learning curve for me, but a really important one.
My eldest son Justin is seventeen, non-verbal and severely autistic. Someday he will need to reside in a group home, as I do not anticipate for many reasons he will live with my other son one day. I am confident at some point Zach will work and have a family of his own, and it would be very daunting for him to have his big brother reside with him. Plus, in my “plan for everything” mindset I would worry about what would happen to Justin if something were to happen to Zach that would prevent him taking care of his sibling, so this seems the logical plan.
Oh, were it that easy.
I have to admit I am conflicted about the group home plan, and probably always will be. I worry about him being abused, although to tell you the truth that could happen if I kept him home with me until the bitter end and had in-home care for him.
Hi being hurt is one of my worst nightmares.
The other reason I am conflicted is that if I’m brutally honest with myself, I will admit that I’m confident if Justin had a choice, he would stay with us until the last possible moment. How do I know this from a kid who can’t talk? Honestly, I just know. I have a child who loves his routines, who loves his home, his bed, and is always happy to come back from vacation and just be home.
So you see my conundrum.
If I thought for a minute Justin would want to be more independent in his twenties I would still worry about the potential for abuse, but I would be more at peace with the decision. Of course the reality is, his father and I will die, and since we had him late he’ll have about forty potential years on this planet without us. He needs to live somewhere. And I am left to ponder, is it kinder to try and place him in his twenties when he’s younger and ostensibly more open to change, or keep him until he’s in his forties and his parents are doddering old farts who physically can’t take care of him anymore?
I will probably go to my grave not knowing the answer to this.
The reality is he most likely won’t come up to the top of the waiting list for a budget for residential care until he’s in his mid-thirties, so the decision may be made for us. The other truth is when the budget is available I may not be enamored of his residential options either, so the wait may continue.
Ah, uncertainty, my favorite.
Regardless, I am looking forward to finding out about this process with good people, most of whom have children a few years older than mine so I have a lot to learn. I will be learning about fundraising, and networking to find developers, and learning about all the myriad regulations associated with starting a home of this nature, of which I’m assured there are many.
Despite all the potential roadblocks, I am excited to learn.
I will be writing about the process along the way. Wish us luck!
It is seventeen years ago last month that you became a Dad. And while up until then I’d done most of the work, that dynamic changed the moment your first son came into the world.
My friends had told me to give you a couple of jobs (middle of the night feeding being a favorite), just so you had “ownership” of something related to our boy.
It wasn’t necessary. You’ve been there for him, and for me, every step of the way.
I know things haven’t turned out exactly how we planned. Somewhere in a parallel universe we still live in Washington, DC, we both work, and our two kids, two years apart, are a teen and a tween respectively and driving us crazy with their backtalk (okay, that still applies to one of our kids). Nowhere in “What to Expect When You’re Expecting” was there anything about sleepless nights for a year, reflux that just wouldn’t quit, a general extreme crankiness that defied all logic (that often extended to us too), and a penchant for spinning things that also defied logic (and often gravity).
I know there have been days with Justin that have just completely broken your heart.
And yet, you never give up trying to give our son, and our family, the best life possible.
When our boy was diagnosed at the tender age of seventeen months and we found out Early Intervention in Virginia is a travesty at best, you figured out a way for me to quit my job and do dozens of hours of therapy with him until he could start school. When we realized the school program wouldn’t be right for him (and I began to burn out on ABA) you figured out a way for us to move to Jersey, a chance to give our boy some amazing therapists, a great school program, and proximity to relatives and friends who could help.
I truly don’t know how we would have made it those first few years without that bold move.
We’ve had so many decisions to make over the years, some of them soul-suckingly hard. Where to live. What school placement to put him in. What ancillary therapies to provide him. What medications to try, and try again. Which doctors to take him to for first, second and third opinions. Whether or not to have another child (we did, and happy to say, it worked out). Hell, just for dealing with our insurance companies you deserve a medal.
You’ve been there to help me with all of them.
You have listened when I poured my heart out to you about my quandaries around inclusion, my desire to give him a hobby other than technology, my drive to take him out into the community even when it wasn’t pleasant. You have held my hand when I’ve had to let many of our dreams for Justin go, and helped me rally to remember all the good things he has in his limited, but generally happy life.
You have been my sounding board, my sanity, my friend.
Perhaps most importantly, you learned how to be a part of Justin’s world, meeting him on his terms, which has forged such a close bond between the two of you. He loves when you echo his favorite lines from “Up,” adores when you scratch his face with your five o’clock shadow, treasures those moments of “snuggle time” on the couch.
He loves you, truly and deeply, with a connection forged in your relentless pursuit to bond with him.
He is one lucky boy.
I am one lucky wife.
From Zach, Justin and myself, Happy Father’s Day my love.
Today is day three of “education chez McCafferty.” To homeschooling moms and dads, it’s just Wednesday.
I’ve waited a few days to write just because I wanted to see how things played out. Virtual learning will start tomorrow with Justin, and Zach has been faithfully spending about three hours a day doing his work remotely. I admit on Monday morning I was worried about how this would go, but when I inquired I got “the hand” and an exasperated “Mom, I got this” and moved on.
Having a teenager has taught me to walk away (and fast).
I want to take this time to thank the teachers and administration at Veterans Memorial Middle School, who at least for my child have put together seamless instruction in about five minutes that has blissfully kept him occupied for hours. Speaking as a former veteran educator myself, I know this has not been easy. Like many of us, teachers now working remotely have children of their own at home who need access to computers and homeschooling. Many have small children who they need to keep alive while answering emails. Some may not have the strongest technological skills, and remote learning may be a challenge.
I’m certain many are validating something they already knew- that being a teacher is in no way a bonus when teaching your own progeny.
As I scroll Facebook for something to do I’ve seen numerous posts bemoaning the situation we’re all in. They range from hoping to expel their current students, to throwing schedules out the window, to my personal favorite, “now you know the teachers were right about your kid.”
So it is my great hope that something good will come out of this, namely that parents who are not educators will have a greater understanding of the complexities and sometimes arduous nature of this job. I’ve had two friends ask me “how did you do this for twelve years?” These are friends who are struggling just to get their kids out of their beds, not to mention monitoring them to see if they’re actually doing their work (yes, there IS a PE curriculum!).
I want to personally thank Mrs. Wnuk for her incredibly encouraging comments to all “her kids,” (I’ve shared them all with Zach and even got the hint of a smile, both sides of his mouth!). They mean a lot and I’m sure many teachers in the Brick Public Schools are doing the same. I know this because this town cares about its kids, its teachers work incredibly hard, and we are lucky to have them.
So to all my friends and parents out there thrown into something it takes years to perfect while trying to forage for food and keep your day jobs, hang in there. I am confident many bumpy roads will smooth out soon, and if not, there’s always Netflix. I wish you all the best, and thank you again to Veterans Memorial!
Last week I had the good fortune to meet a dear friend for lunch (Indian food, my fave!) in a town halfway for both of us, which means a good forty-five minute drive for each. I am compulsively early to things (my mom is too, I come by it honestly), so of course after running errands I managed to get to the strip mall twenty minutes early. As I drove in I happened to look up to my left at the first building in the lineup (hoping I could compensate my compulsion with some shopping) and saw in big letters the sign “Disability Allies,” and knew I’d found a place to kill some time with a purpose.
I knew with a little luck I’d get my first tour of a day program for autistic adults.
Justin is just about to turn seventeen, so even though I’m a planner extraordinaire I will not start formally looking for about another three years. I thought to myself however that I could go in and try to talk to someone and most likely get turned away, or perhaps I could charm my way into an impromptu tour.
Lucky for me, the latter transpired.
I had a fifteen minute conversation with the director, Audrey, who told me all about her adult child who attended this day program (a plus in my book), how they were relatively new, and her dreams for the place. She could not have been lovelier, taking time out of her day for a fellow special needs parent who was most likely not going to send her child here due to distance, but wanted to “host” her anyway.
We had a lovely chat, and then I got the tour.
I really wasn’t sure what to expect as I’d never visited a day program before. Quite honestly I’ve been told by friends whose kids are in their twenties that my expectations should center around keeping him “happy and safe,” which has never exactly seemed like a rousing endorsement to me. I’ve kept those two goals in mind (including “clean”) and hoped frankly I wouldn’t walk out of these centers depressed that there is nothing out there which will ever come close to his amazing autism school where he’s been for ten years.
Honestly, nothing will ever come close to his amazing autism school.
The truth is however a day program he must one day attend, and I am devoted to finding one that’s a good fit for him, where he gets out into the community frequently, has some fun, and yes, is happy and safe.
After my brief tour I will tell you I have a lot more hope that I can accomplish this goal.
We began in a large, organized and well-lit room where several instructors were working with the disabled adults on theater. We then progressed into a clean kitchen where several other adults were whipping up something delicious (if it wasn’t for the forthcoming Indian food I would have been jealous), an activity which they do several times per week. We finished the tour by ending up in a conference room where the adults were working on life skills such as creating budgets and goals for their future.
In each room, every client looked happy.
Do I think Justin would get anything out of a program like this? No, I don’t. I will be looking for something with daily outings, access to computers and DVDs, maybe even a heated pool if possible. I know my boy’s likes and dislikes and his ability level, and this program would never match them.
But still, on a whim I got to see a place that was clean, and where the participants were happy and safe. I got to meet a director impassioned to deliver excellent services to her charges, who was excited about all the things she hoped to bring to her program in the years to come.
In the past several weeks I’ve been talking to parents of young autistic kids, and it has brought back memories of many of the struggles and triumphs I had with both my children back in the day. There were some dark years back then, and some resounding triumphs too. I remember having an overwhelming sense of urgency to “get it right,” that a certain diet or classroom or instructional methodology would make the difference between whether or not he ever ate a vegetable, spoke, or lived an independent life.
I can tell you now with complete honesty that except for the vegetables, none of those things came to or will ever come to pass.
The truth is despite excellent teachers, therapists, and a teacher mom who worked non-stop with him for almost two years before he went to school because Early Intervention in Virginia for autistic kids was a joke, he will never achieve the latter two goals. I can’t say I’m at peace with this. I will particularly never be reconciled with his lack of future independence due to the safety issues, but I will say I have accepted it.
Really, what else is there to do when you’ve tried everything.
Talking with parents about their young kids and their hopes and dreams for them often makes me take a look at the choices my husband and I made with both boys. There are definitely some things I would do differently.
But there is one thing I would not. And that is knowing when to let go.
Perhaps there are parents out there able to look at their toddlers and be at peace with the fact they’ll never have functional language, but I was not one of those parents. I read everything out there, and at the time a few studies showed that sign language seemed to encourage more verbal speech than other methods of communication. When we finally moved to New Jersey and had excellent Early Intervention services I remember being so adamant that the team sign with him for this reason. I did not take into account his lack of imitation skills, or his fine motor issues. We went on in this vein for months, with little or no progress.
And finally a member of the team pointed these deficits out to me, recommended the PECS system which could eventually lead to an iPad for communicating, and let me think about it.
Although it felt a little bit like I was giving up on speech, I had to look at the big picture- that my son needed a method of communicating or he would be deeply frustrated his entire life. Just because he was bright and I wanted him to talk didn’t mean he ever would. I had to do what was best for him with the skills he had.
Eventually he moved onto the iPad and Proloquo2go, and can communicate his needs beautifully. He had some words before he developed tic disorder, but they are mostly gone now. Thankfully due to his ability to read and type simple words he still has a means to tell the world what he wants.
If I had never listened to that therapist there might have been a different story.
Keeping the big picture in mind is crucial when you’re making the huge, and sometimes small, decisions about your child’s life. When Justin was younger we really wanted him in a public school setting where he’d have opportunities to engage with neurotypical peers. It eventually became obvious that the public school system would not be able to meet his needs, and his father and I had to consider private autism schools where there’d probably be no chance of immersion in the neurotypical world. We made the choice to move him, and it was without question the best decision we’ve ever made for him.
But once again I had to let a dream go and look at what would be best for him in the longterm, and I’m so glad I did.
Through many bumps in the road Justin is thriving now. I know this is in part to his father and I always keeping the big picture in mind when choices are presented to us. It’s so important to look at the skills your child has as well as the deficits and try to match those skills with a particular school program or a method of therapy. Keeping an open mind is key, and remembering it’s about where they’ll best succeed, not how you want them to succeed.
And as adulthood approaches I will try to take my own advice to heart.
He steps off the bus and rushes to the sidewalk, making one of his trademark vocal stims as he goes. I am behind him (he is really fast!) and catch up quickly, have to halt as he stops dead in his tracks. “What is it Justin?” I ask, and he turns, looks at me, really looks at me, and plants a big kiss on my mouth. Mission accomplished he turns away, marches quickly to the front door and waits for me to afford him access to our home.
I am thrilled. After the last two years, I will never ever take signs of affection for granted again.
In the fall of 2017 Justin developed tic disorder, which for him would be called Tourette’s if he spoke. It took one agonizing year, eight doctors, and as many diagnoses, to figure out what he had, and more importantly, to figure out how to treat it. I was so grateful someone finally figured it out, and over the course of the past year we have seen many of the skills he lost start to return.
His speech has suffered drastically, specifically his pronunciation, but since he primarily uses an iPad for communication I’ve been able to make my peace with this, as he truly only had a few words to begin with (juice remains, his favorite!). The aggression which particularly reared its ugly head two summers ago has all but disappeared, and he transitioned beautifully to a new teacher this summer and has for the most part had stellar behavior. The terrible body movements are manageable, do not seem to distress him anymore, and are few and far between compared to what he was doing in 2017.
Truly, the one deficit that remained was his lack of affection.
Trust me, I am grateful for the return of so many of these things, am even attempting to get him back on track with chores and self-help skills as best I can. I know we’re lucky we figured this out. But I will tell you I greatly missed the hugs and kisses, as reciprocal affection was a staple of our relationship since the moment he was born. Justin is not one to hug most people in his life- he pretty much reserves that right for his parents, and that’s about it. I will tell you I missed those embraces, I missed them greatly.
Now, slowly, affection is making a comeback too.
And I’m so grateful, because I love him and we share this common need for hugs, and because he is wonderful but life with him is often difficult, stretches me to my limits and beyond. The fact that he’s spontaneously planting a kiss on me once in a while shows how much he’s healed, demonstrates the core of who my son is- a loving soul.
I knew he was still in there. And he’s coming home.
Last week I had the pleasure of spending a few days at Disney with my family during New Jersey’s NJEA break. We had perfect weather (ponchos never used), were able to get on many rides each day, and most importantly, my severely autistic sixteen-year-old slept well and was an angel on the plane both ways.
Trust me, both of those things could have been deal breakers for our trip.
This was our fourth trip to Disney in the last six years, and each time we’ve gotten it down better and had more fun. I’d like to take a moment to say this. I’m sure some parents of severely autistic children are rolling their eyes at even the thought of taking their child to Disney. Believe me, I was once in that group, and didn’t even attempt it until Justin was ten. Our first trip he was ill and the entire week was a bit dicey, but since then he seems excited about going, even whips out his Disney DVDs weeks prior to leaving. If you even think you can pull it off, it’s worth giving it a shot.
I’m sure some of you are wondering how we manage the lines when we’re down there, especially if you’re aware that the disability pass changed years ago. It used to be that you’d enter Guest Services either inside or outside of the park, ask for the pass, and would be given the pass with the understanding that you could walk up to any ride and enter the fast pass lane at that attraction. Unfortunately people were abusing the system, and Disney had to change the rules. Now one person in your party needs to walk up to the ride (it does not have to be the person with the disability) and get a return time for the attraction. When you return at the appropriate time you are able to go into the fast pass lane.
You can only add on a new disability pass ride after you’ve used your pass on the ride you’ve selected, and there is no expiration time like there is with the fast passes. One tip I’d like to pass on is that when you get the pass (it’s good your entire trip, you don’t need to go back) you can ask them to book your first disability pass ride, which saves a bit of running around.
As a family we developed a system where my husband would run ahead to a new ride as soon as we rode the disability ride and get a new time, then meet us back at our next fast pass ride. Since unlike me he has a fabulous sense of direction he was able to meet back up with us pretty quickly. Both days we spent at Magic Kingdom we were able to ride ten to twelve rides per day (it was not a highly trafficked week) and that includes a lunch break each day. It worked out beautifully for us, and my husband got lots of exercise to boot.
Always a silver lining if you look hard enough.
I am really proud that my son can handle so much change- a plane ride, a new bed to sleep in, tons of people (even on a traditionally not-so-busy week as the first week in November). I want anyone reading this to know that we have had many challenges with Justin in the past. There have been sleeping issues, aggression issues, eating issues, and toileting issues which combined kept us from taking him anywhere other than a beach vacation for a decade. I did try and prepare him before our first trip by showing him old Disney videos and telling him we were going there, and he seemed to get it.
Despite being ill he was really excited our very first day there, and for subsequent trips I made a scrapbook so I could prepare him each time we were going again. If possible I would recommend having your child sleep at another person’s house prior to the trip just to “practice,” and if they have any dietary considerations, research the restaurant’s menus before you go. There are supposed to be gluten-free options at many of the dining establishments, and we never had a problem ordering food for him. Another recommendation is eat an early lunch or dinner, the crowds will be less and you won’t waste so much time eating.
After all, Disney is all about the rides, right?
I consider Disney a “working vacation,” but with some planning (we create a potential ride itinerary in advance) Disney is possible even with a severely autistic child. I will mention that I read recently that an autistic person is suing Disney over the new disability pass changes, and it will be interesting to see what happens with that. I personally know some families who have not taken their kids back there since the changes as they don’t believe they’ll be able to handle not automatically walking onto the ride, so I’m hopeful for them that at least some disabled people will have access to the old disability pass.
It is supposed to be the most magical place on earth after all.
This past week I had Justin’s fourteenth (!) IEP meeting at his wonderful autism school, and as I looked around the table at the amazing practitioners who help my son five days a week it hit me that I would only come to this table four more times. I quickly pushed that thought away (after all, what autism parent really wants to contemplate graduation?) and focused on what all his teachers were saying about my boy.
It turns out, after a year or two fraught with trouble, Justin is doing really well.
Two years ago this fall Justin began displaying body movements that would ultimately be diagnosed as tic disorder, an event that would completely derail his life and our family’s as we tried desperately to help him. He was very challenging during that year, both in school and out. Of course his teachers handled it all beautifully, and eventually with a medication change we were able to get him out of the woods. Although he’s not where he once was, he is much improved, enjoying his life and able to go through his routine.
A year later, I can say he’s still in a good place.
And as I sat at the table and listened to what my boy was doing in the classroom, in OT, and in speech, it hit me.
All is good. I can exhale now.
I’ve written before that autism, at least in my house, is a cyclical event. Sometimes the wheel spins in our favor, and my son is happy, engaged, and productive in his life.
Sometimes, he is not. And that affects us all.
One thing I have learned over the years is that it is so important to grab onto those good times and truly appreciate them, because it is a guarantee that more difficult times will return down the road. I am really making a conscious effort to savor these moments that have luckily continued for an entire year, to revel in his happiness.
Because at the end of the day, my most important goal in life is to see both of my boys safe, happy, and productive.
There will be challenges in our future, of that I am certain. In the not too distant future we will be tackling guardianship, Medicaid/SSI, and hopefully finding a good day program for Justin where he will not only be safe, but enjoy himself. I know there will be struggles ahead.
But for now, all is good, we are at peace.
And I take it gladly.
For more on my family visit my blog at autismmommytherapist.wordpress.com
This past week I had Justin’s fourteenth (!) IEP meeting at his wonderful autism school, and as I looked around the table at the amazing practitioners who help my son five days a week it hit me that I would only come to this table four more times. I quickly pushed that thought away (after all, what autism parent really wants to contemplate graduation?) and focused on what all his teachers were saying about my boy.
It turns out, after a year or two fraught with trouble, Justin is doing really well.
Two years ago this fall Justin began displaying body movements that would ultimately be diagnosed as tic disorder, an event that would completely derail his life and his family’s as we tried desperately to help him. He was very challenging during that year, both in school and out. Of course his teachers handled it all beautifully, and eventually with a medication change we were able to get him out of the woods. Although he’s not where he once was, he is much improved, enjoying his life and able to go through his routine.
A year later, I can say he’s still in a good place.
And as I sat at the table and listened to what my boy was doing in the classroom, in OT, and in speech, it hit me.
All is good. I can exhale now.
I’ve written before that autism, at least in my house, is a cyclical event. Sometimes the wheel spins in our favor, and my son is happy, engaged, and productive in his life.
Sometimes, he is not. And that affects us all.
One thing I have learned over the years is that it is so important to grab onto those good times and truly appreciate them, because it is a guarantee that more difficult times will return down the road. I am really making a conscious effort to savor these moments that have luckily continued for an entire year, to revel in his happiness.
Because at the end of the day, my most important goal in life is to see both of my boys safe, happy, and productive.
There will be challenges in our future, of that I am certain. In the not too distant future we will be tackling guardianship, Medicaid/SSI, and hopefully finding a good day program for Justin where he will not only be safe, but enjoy himself. I know there will be struggles ahead.
Autism Mommy-Therapist 