May 9, 2022
Birthday Boy
Dear Justin,
How is it possible in a few days you will be nineteen? Not a huge birthday like eighteen was with all the hullaballoo around guardianship and social security, and not a landmark birthday like twenty-one where you will cease attending your beloved school and hopefully enter a good day program. Significant none-the-less, with this summer being the time I fill out the NJCAT on you to help determine your after twenty-one budget. The time where I have to be honest about all the things you can’t do (even if it kills me) because I want you to have the appropriate funds so you can live your best life possible.
Here, chez McCafferty, it’s always been about your living your best possible life.
We will get through this milestone as we’ve gotten through all the others, and will get through all the ones to come. I’d rather concentrate on how lucky I am to have you as a son.
At the end of the day, that’s much more fun.
I am so proud of you for so many things. For your hours at the municipal center where you work once a week. How you work so hard in your individualized program at school without complaint. Your behavior on school field trips, and your ability to walk away from desired toys in Target without a fuss. How you eat broccoli and lettuce like a champ.
I have to say I am super proud of the latter. I want it on my tombstone.
But I’m also proud of you for the little things, the intangibles that make up a life. For your patience when we don’t immediately fulfill your hundredth request for juice as quickly as you would like. For your ability to wait as Mom figures out what you want to see on Disney plus. For that affection you show me (mostly in the bathroom, everything important in this family seems to occur there) that fills my heart.
The little things matter.
Nineteen years ago you made me a mom, and you were such a wanted baby. I have to say the years we’ve had together definitely did not go as planned, as autism, OCD, tic disorder and intellectual disability often made you struggle for even a pretense of happiness in this world. If I could I would have spared you so much of these struggles, but you have come through the other side and grown into such a loving young man, of whom I’m eternally proud.
And one who will soon get to eat cupcakes on his birthday as his brother blows out his candle for him and makes a wish on his behalf (one of the best parts of your day).
I love you Justin. Your dad and brother and I will always try to do right by you. You deserve that in spades.
Happy birthday my oldest love!
Follow me on Facebook at Autism Mommy-Therapist
April 27, 2022
Off to Camp We Go!
The letter was stuck amongst a bunch of bills, but as soon as I saw the name on the envelope I eagerly dropped the less exciting mail on the counter and ripped open the top. After quickly scanning I saw that my eldest son Justin, who is almost nineteen and profoundly autistic, was accepted for the first time to sleep away camp.
I wasn’t sure he’d get in, but he made it, my boy.
This will be a big deal for Justin, and yes I’m worried that it’s too much of a stretch for him, but I feel we have to try. The only place Justin has slept outside of his bed in the last few years is a condo at Disney, and even then a parent was in the bed next to him. He’s enjoyed this camp before as a day camper, and since it’s the only way he can enjoy the camp as right now they’re not doing day camp, his dad and I felt like we had to give it a shot.
To say I’m nervous is a gross understatement.
The truth is, with a few of my friends we are in the process of trying to create a residential placement for Justin and their sons, and I just can’t see my boy being successful sleeping in a new environment if all he’s ever known is his own bedroom. We’ve started working on trying to teach him where he goes each day- his teacher has a calendar at school, and we are using one at home (it’s Trolls, he loves it). Justin is non-verbal, but he can nod yes or no, and when I point to the space and ask him for that day if he’s going to school or staying home so far he’s gotten it right all week, so I’m hoping he understands.
I think the thing my husband and I worry about the most is that he’ll think he’s never coming home, and that would break our hearts.
I’ve got pictures of him at this camp from years past, so I’ll create a social story for him that ends up with him coming home, so hopefully he’ll get it. Hopefully he’ll sleep there- he’s a great sleeper at home, so fingers are crossed.
And while I’m fully prepared that we’ll get a phone call the first night around 9:00 telling us to come get him, I’m also embracing the possibility that we won’t- that he likes this camp enough that he’ll comply. Justin is going to have a lot of changes coming up in the next two years, like graduating from his beloved school and starting a day program. These are huge detours in his life- I’m hoping that by starting with little changes he’ll be more ready for the life- altering ones.
We have a few months to prepare him, and I’m hoping the camp lets me bring him up beforehand to see where he’ll sleep, as he hasn’t been there in three years and it would be nice to familiarize him with the place again. I’m nervous and excited for him all at the same time.
It’s time to try something new. Wish us luck!
Follow me on Facebook at Autism Mommy-Therapist
April 14, 2022
Autism Awareness Month
Recently I had the good fortune to be contacted by a freelance producer for the Fox and ABC news affiliate in the Johnstown/Altoona/State College PA region to speak about tips for parents whose children have been diagnosed with autism. The producer saw my blog post on the Autism Speaks website and thought it would be relevant for Autism Awareness month and helpful to parents as well. As I reread what I wrote I felt the post had held up to the test of time, so I’m reprinting the highlights here. Hope this helps somebody!
1) No matter how exhausted you are, get your child out in the community. It was a struggle with us with Justin, but getting him out so he could have a repertoire of leisure activities was crucial to his happiness and to our family’s. It set him up for a lifetime of being able to try different things, which will set him in good stead when I’m no longer here to take him places. Yes, I’m always planning.
2) If you haven’t already done so, join a parent group and/or your school district’s special education PTA. You will make invaluable connections at both. Try to find parents of kids with your kid’s level of autism as you’re making friends. These people will be a wealth of information for you and a lifeline.
3) When your child’s Early Intervention or school program is set tackle the big issues one at a time- perhaps it’s sleeping, or eating, or potty training. If your child is in a private school there may be a BCBA on staff who can help you. If not and you can afford it, consider hiring a BCBA from an agency. Pick an issue and prioritize.
4) Educate your friends and family as to what’s going on in your household. Perhaps you’ve been too tired up to this point to talk to people not in the “tribe” about what raising an autistic child is really like. It’s time to tell them and ask for the support you need, even if it’s just an ear to listen. My husband and I kept too much to ourselves, and if I could go back in time I’d be more open with everyone in our lives.
5) I can’t stress this one enough- take care of yourself, not just your kid. Autism is a marathon, not a sprint. You owe it to yourself and your child to be whole, healthy, and happy. Do whatever it takes to get there.
Hope these tips help!
Follow me on Facebook at Autism Mommy-Therapist
April 1, 2022
Autism Awareness Month
It happened so quickly if I hadn’t been paying attention I would have missed it.
This week I took my eighteen-year-old profoundly autistic son to the dentist, where he is reliably wonderful. He waits appropriately for the appointment, gets right into the chair, and lets the professionals do all sorts of uncomfortable things to him for a good twenty minutes. Part of his compliance I’m sure is maturity, and part of it is that this is just part of his twice yearly routine, and he knows he has to get through it. Sometimes the waiting room is the hardest part because it’s small, and perhaps he just wants to get the dentist over with.
Don’t we all.
Several days ago my boy and I sat in our respective chairs, and he started with his loud vocals and rocking back and forth in his chair. Three kids who looked to be middle school age were doing homework, and I noticed all were flat out staring at him. Sometimes I let things go (if I’m really tired), but more often than not I like to address the issue, spread some awareness around. So I chose who I thought was probably the oldest one, looked him in the eyes and said, “he’s okay, he’s autistic.” Without skipping a beat he replied “cool,” and all three kids resumed their homework.
Justin got a “cool.”
It’s Autism Awareness Month, and I can honestly tell you at least in my home state of NJ where everyone knows someone with autism, we are aware. There’s been a trajectory of awareness though- many years ago I would probably not have been greeted with “cool” by a middle schooler, but rather a blank stare. When Justin was little people thought he was adorable no matter what he was doing, but by the time he was a “big” kid some of the looks were not so kind. I haven’t seen any of that in years, and as an adult if anything he’s become more vocal and stimmy as he’s gotten older. Nobody seems to mind.
A huge win, especially for parents just trying to get through the day.
I’ve said this before, but I think we need to move on from awareness to acceptance. Not only acceptance of autistics as a valued part of society, but all the degrees of autism as well. Some autistics grow up to attend college, find love, have kids and careers, and that’s wonderful. Some however have lifelong struggles with even the most basic forms of communication and have behaviors, and are profoundly affected. There are many degrees of autism.
It’s called a spectrum for a reason.
So if we’re moving forward to acceptance, then I say this. I want acceptance for all autistics, no matter how mild or severe. I want to see the entire community, autistics and parents of autistics alike, accept my son’s challenges and acknowledge his worth. I want them to know that he has value equal to any individual not following a neurodivergent path, and equal value to any of his mildly autistic peers.
I want him to be seen.
And this week he was seen and accepted by the future generation, and I couldn’t be happier about that.
Follow me on Facebook at Autism Mommy-Therapist
March 21, 2022
Keep an Open Mind
Sixteen years ago this winter my husband and I and our then two-and-a-half year old severely autistic son moved from Northern Virginia to the Jersey Shore in search of better Early Intervention services and to be closer to family (okay, and the beach too). Despite the fact that I am originally from the area and had friends and family here it was wrenching to leave DC- we had fifteen years of friendship, careers and the city itself to miss and we honestly thought we’d be retiring down there. It was however the best call we could have made- we needed the help from family, Justin finally got some excellent services and the options for his schooling were much better as well.
As much as I miss our life down there, I don’t regret our decision.
When we moved up here I was constantly doing research about how best to help our son, and some of it was conflicting. Should we do ABA or Floortime? Sign language or PECS? Try the gluten-free casein-free diet? There were so many things to consider, and I tried to educate myself about all of them. I often consulted our very knowledgeable Early Intervention therapists on different topics, but I recall one I was very stubborn about, which if I had adhered to it would have truly set my son back.
I questioned whether or not we should do sign language or use the PECS system.
Much of the research I had done indicated that kids who do sign language have a better chance at speech, and I clung to that research like a life raft. Justin never really had speech- just “ma” and “ba” prior to his first birthday, sounds which disappeared after that milestone. I wanted to do everything I could to facilitate the spoken word, and had been working with him diligently on trying to elicit sounds through sign language. By the time we moved to New Jersey Justin was signing, but only doing about three signs with accuracy, and sometimes not even those. I remember being adamant at one of our team meetings that sticking with this method would be best for him, even though his team disagreed.
Thank goodness I finally listened to what the lead therapist was saying about his poor gross and fine motor skills, and agreed to try PECS with him.
PECS is a communication system where a student takes a velcroed picture off of a book and presents it to an adult as a mand (demand) for that item. I remember my trepidation when one of his therapists tried it out with him for the first time, but he took to it like a duck to water. Using this book helped reduce his meltdowns because he wasn’t so frustrated all of the time, and eventually he was able to transfer to Proloquo2go on his iPad and type Google searches as well. The truth is he never developed “spoken speech”, but he wouldn’t have developed it if I had kept on trying sign language, and instead he would have become more and more frustrated with his inability to communicate.
I learned a lesson that sometimes my gut is wrong, and I have to listen to the experts.
That lesson has kept me in good stead all these years, especially when his school has suggested we try something with him that seemed counterintuitive at the time. I’ve found they are usually right, and I’ve learned to keep an open mind with any of their suggestions.
So if you’re just starting your autism journey and the research I know you’re conducting conflicts with a therapist or specialist you trust, give it consideration. I’m so glad I did sixteen years ago, and will continue to do that with his therapists, doctors and teachers down the road. You never know what could be the key to unlocking more progress in your child.
Always keep an open mind.
Follow me on Facebook at Autism Mommy-Therapist
March 9, 2022
Trust Your Gut
Last night, my son Justin, who is eighteen and severely autistic, reached over at the dinner table and pulled me in for a kiss. Nothing precipitated it (I was eating wings and solely interacting with them) and he took me by surprise. These are moments of clarity with Justin- he looks straight at me in all seriousness, and usually has a hint of a smile on his face. I treasure these moments, because compared to when he was much younger, they are few and far between.
And I am grateful for every single one.
Five years ago we went through a terrible period with Justin. He began having some all-consuming body movements we thought might be the result of a medication he was on, but turned out after seven different doctors and almost as many diagnoses to be tic disorder. We got him on the proper medication and he improved greatly, but it was a harrowing time for him and for our family. Thankfully we have gotten things under control and he is back to his mostly happy affectionate self, although he doesn’t express emotion nearly as much as he once did.
Honestly, we had thought we were out of the woods, but you never really are with autism.
Autism often comes with co-morbid disorders such as OCD, epilepsy, ADHD, and many others. My husband and I were completely caught off guard when he developed symptoms, as we had never heard of autistic people developing tic disorder before. It was so frustrating to hear diagnoses we just didn’t think fit the bill, and exhausting trying to find the right practitioners who took our insurance. Fortunately we straightened things out and he is doing well again.
But if we hadn’t kept pushing he might not have gotten the right diagnosis, and might be still suffering as he was back then.
My husband and I listened to our gut and did our own research on what we thought was happening to our son, and it all paid off. There are so many different choices to make when you have an autistic child- to do or not do ABA, gluten or dairy-free diets, to medicate or not medicate, etc. It’s really important to listen to many different opinions, but don’t forget to trust your gut too. Most importantly, be honest about how you feel something is working for your child, and don’t be afraid to speak up if you have concerns. Nobody knows your child like you do.
You will always be his or her strongest advocate if they can’t advocate for themselves.
We are fortunate in that we were able to help our son, and that he seems content with his world. This would not be the case if we had stopped listening at his first diagnosis, which was wrong. Try to keep an open mind to suggestions, but remember your opinion is valid too.
And never give up.
Follow me on Facebook at Autism Mommy-Therapist
February 22, 2022
Eagle Scout Court of Honor
Recently I had the profound joy of watching my youngest son Zach, who was fourteen, receive honors and accolades for achieving the rank of Eagle Scout at his Court of Honor. For those of you who don’t know, a Court of Honor is filled with various dignitaries making speeches (we had the Marines!), the giving of many citations, medals, and plaques, and speeches by the boys. It was a very emotional day for me- Zach worked so incredibly hard for three years to achieve this status, from advancing through six ranks to earning over twenty-one merit badges to planning and executing his Eagle Scout project. Towards the end of the ceremony Zach honored my husband and myself with pins to thank us for our efforts, but I really have to say this kid did it mostly on his own.
And we couldn’t be more proud.
Zach is a sibling of a brother with profound autism, and life isn’t always easy for him. My husband and I have tried very hard not to let his brother’s disability preclude him from things he wants to do in life. Sometimes it’s been difficult to handle the logistics, but I can honestly say with lots (and lots) of support we’ve been able to pull off a good childhood for Zach.
The best part is he agrees.
It hasn’t always been smooth sailing. When they were little it was difficult for Zach to understand why Justin didn’t interact with him most of the time, and eventually he just gravitated towards his mom and dad for his needs or to share something of the world with us. They did interact somewhat as young children, but when Justin developed tic disorder five years ago his personality changed, and he was no longer as interactive. It was difficult explaining to a ten-year-old why his brother no longer really even looked at him.
It was difficult for his parents too.
But even though they don’t interact much I can always count on Zach to help us out with his brother if we need it. We had no hesitation making him one of Justin’s guardians should his father and I pass on. He’s also very good at telling us when he thinks we should do better (his favorite thing is to tell us Justin is walking too far ahead of us).
I think he’ll be a good dad someday.
I’m so proud of Zach, not just for being an Eagle Scout, but for the young man he is and is becoming. As I watched him receive his awards I thought about all that he has had to work for in life, including trying to carve out some type of relationship with his brother. Just like in the Scout Law, he is trustworthy and helpful to his family. I am certain that all the values Scouting helped instill in him over the past nine years will continue to express themselves with his relations with his family, even his often challenging brother. He will persevere with that just like he persevered with the hundreds of requirements necessary to achieve the rank of Eagle.
Sometimes the siblings of autistic children don’t get the recognition they deserve. I always want Zach to know how proud we are of him both overall and as Justin’s brother. I am so happy he has years left to be a scout, and I can’t wait to watch him continue to develop into the kind and thoughtful young man he is becoming.
We love you and are so proud of you Zach!
Follow me on Facebook at Autism Mommy-Therapist
February 7, 2022
Small Steps
Justin looks at me quizzically from the confines of the shower as I hand him a new washcloth, one he is supposed to insert his hand into. I put it on him with some accompanying soap, take his hand and rub it on his alternate arm. He doesn’t move at first but then begins to slowly rub the cloth up and down to his elbow. I tap different body parts and manually move his hand, but by the end he responds just to the taps and moves his hand to his legs on his own.
It is these little triumphs that keep me going.
Over the years I’ve tried again and again to get Justin to wash himself, generally to no avail. He would drop the cloth or just not respond to my hand-over-hand manipulations, and over time I stopped trying, chalking this up to a life-skill he would never master.
Until my mom had a stroke of genius.
She happened to be in a store that sold the slip-on washcloths, picked up a few and sent them to me. I wasn’t sure how it all would go, but we’re several weeks in now and he is doing a great job. I still need to wash the places he misses, but it is a far cry from the days of halfhearted attempts and dropped cloths on the shower floor.
I say this a lot- never give up.
But know when to ask for help too.
With time and practice Justin has been able to master a number of life skills and chores, many of which he completes at school. I’m still struggling to get him to use a fork (I seem to be able to get him to use it with one food on his plate, then he’s done), but he can partially dress and undress himself, and partially brush his teeth. His teachers at school and a family friend well-versed in autism have been instrumental in helping him master these small objectives, and he would not be where he is without them. I’ve been so grateful over the years because I am the “big picture” girl- always thinking of ways to make the lives easier of the people who will care for him when I’m gone. The more he can do, the less they have to do for him.
And in reaching those goals, I’ve learned to ask for help.
If you have a young child with autism (or older too) and you’re struggling with life skills and chores, don’t hesitate to reach out to your child’s school and see if any of his or her teachers has suggestions. We are lucky enough to have had BCBAs from Justin’s school come to the home, and their recommendations have been so helpful. I reached out to my mom for this particular skill, and he’s improved greatly.
It’s so important to push them as far as they can go.
Now that we’re doing better in the shower I’ll be focusing more on using those utensils and washing dishes (nice for me too!). The important thing is to target one skill you feel is important, check with your resources, and try your best.
Your child may just surprise you.
Follow me on Facebook at Autism Mommy-Therapist
January 24, 2022
I Wish I’d Known
Eighteen years ago my then seventeen-month-old son went for a sick pediatrician’s visit, and I came out with several misprinted articles with “autism” in the title, shoved in my hand by an unfeeling doctor who clearly wanted us out of his office.
At the time I was devastated.
I remember walking in a fog to the car, stroller in tow, not even making it to our home before I had to call my husband with the news. I recall heading to the pharmacy with scrip in hand for my son’s malady, in shock. Our well visit a month prior hadn’t raised any alarm signals, and although I’d had some concerns for a while our boy was so connected to us I couldn’t imagine he had a developmental disorder of the magnitude of autism.
I, of course, was wrong.
Once my husband I and I got over our initial shock we dove into helping him. Virginia had a pitiful Early Intervention system, providing us with only a handful of speech and occupational therapy hours monthly, and no ABA even though he had an official diagnosis. We hired a BCBA, trained two therapists to work with him, and I got trained myself. We ran a program for him for almost a year-and-a-half before we moved to New Jersey, both for the services and to be closer to family. He had six months of excellent Early Intervention services before he started his pre-school program, and I was grateful for every minute (and it pretty much was every minute of our days).
And I will tell you that all that time, and until he was much older, I harbored hope he’d move to the mild end of the spectrum.
I had reason to think he would. He was obviously bright, reading sight words at three and complete sentences at four. He could work his way around a computer (and a tv remote!) like a champ, and retained what he learned. He connected with people, and many of them not just for what he could do for them.
I had hope.
I don’t remember exactly when it was that I let the dreams of the quirky but talkative boy die. It was a slow, gradual dawning, realizing that all my efforts and those of the many therapists who’d worked with him would not get him to talk or even communicate beyond basic wants. It was a gradual release, delayed by his brightness and connection to us.
It was a slow burn of devastation this time.
In part I was crushed by the choices he would never have- college, career, spouse, children. Over time I realized those were my dreams, not his, that he didn’t know what he was missing, and that has been some comfort.
It’s the leaving him without me on this earth that is so brutally hard.
I wish I’d known when he was younger that mere intelligence would not be enough to slough away the walls of profound autism and bring him to the milder side. Therapists, and understandably so, do not talk prognosis, and I really spent years hoping for this shift, this slide to high-functioning.
I will tell you this though. That hope sustained me in those early days when it was just me and a few hours of respite from therapists a week, and we were just trying to get through the day. Without that hope I don’t know how I would have gotten up to another day of trying to elicit sounds, to teach colors and letters and shapes, to work all day with my son.
But I do wish I’d known that intelligence wasn’t the only factor in how things would turn out for my son. I truly feel that all the excellent therapy in the world will only work if your child has the ability to match it. In some ways the outcome is out of our hands, which is both scary and a relief at the same time.
If your child is just diagnosed or you’re having concerns, get them the best help that you can as quickly as you can. Make every day count. Keep hope alive.
Always remember that ultimately their progress is up to them.
Follow me on Facebook at Autism Mommy-Therapist
January 14, 2022
Get Out
As I scrolled through my photo gallery looking for a perfect photo of my youngest son in his Boy Scout attire I got sidetracked, and started looking at older photos of my eldest son. In them he is always smiling, as I liked to capture those moments, even in times when they were few and far between. I stumbled upon one from his toddler days, a moment memorialized when he was grinning in his stroller, and all was right with his world.
There were some months, perhaps years, when those moments were few and far between.
I thought about how difficult it had been to take him anywhere when he was younger, beginning with his aversion to riding in a car (which we later learned was due to his facing backwards in his car seat). I recalled how almost any outing usually ended in tears and a meltdown, no matter how briefly we stayed at a location. I remembered how exhausted I’d be after these journeys, wondering if they’d ever get better.
And thank the universe, they did.
It would have been so much easier to stay at home, but I knew in my mother’s soul that this child needed to go places, and I felt eventually he would even desire to go places. While I wanted to remain sensitive to his cognitive issues, I knew he had to get used to interacting with the world, so we started small. I remember the winter before he turned two about the only place we could go was our local mall, a destination which had ended in disaster after a trip or two. I decided to gradually get him used to this new locale over multiple outings.
First we just drove to the parking lot, and I put him in his stroller and we walked around a little bit. The next few trips we practiced riding on the elevator to get inside the structure, and after a few trips he seemed eager for what came next. Then we actually walked around the mall, staying a few minutes longer with each excursion, never overdoing it. Eventually his little body wriggled eagerly when I put him in the car, and I would get smiles after we reached our destination.
I was so grateful we had somewhere to go.
I also used this approach with our local boardwalk. There is a lot going on at a boardwalk, many smells, sights and sounds, and at first it was a bit much for my boy. We started slowly and worked our way up from just walking on the boardwalk to trying a ride or two, and eventually were able to ride on multiple attractions with him. As he grew older he would go to the drawer in our kitchen, get out the tickets and hand them to me, which clearly meant he enjoyed going. The boardwalk grew to be a favorite haunt of his.
And none of this would have happened if I hadn’t kept on trying.
If you’re reading this and you’re struggling to get out with your autistic child, you may just be so exhausted from your attempts that it doesn’t seem worth it to make the effort. Believe me, it is so much easier to start when they’re younger than when they’re older and more set in their ways. Establishing a routine of going out will hopefully become ingrained in them, and eventually outings may become pleasant. Try to get people to help you when you go out at first, and have a backup plan if things go sour. Try a social story if that is something that helps your child understand what they’ll be doing next. Know when enough is enough. Keep trying. I now have an eighteen-year-old severely autistic child who loves to go places and is well-behaved at 99% of them.
And most of all, never give up.
Follow me on Facebook at Autism Mommy-Therapist
Autism Mommy-Therapist 