Posted in Uncategorized at 11:23 am by autismmommytherapist
Well, 2023 is off to an interesting start…
Unfortunately my family was in a car accident on Christmas night coming home from Pennsylvania. Happily no one was hurt, but of course getting the car fixed will take months and has become one of our immediate tasks for 2023. I was injured at work a few weeks ago and am following up on that with my company, which is a lot of waiting around for things to happen. And although I started the process of getting in-home ABA help with my oldest and severely autistic son in July, we are still waiting for insurance approval to get started on assisting him with his self-help skills.
I am not good at waiting.
However, I have learned this over the years. Sometimes it is difficult not to get frustrated with all the details associated with getting help, whether it’s with a car repair or getting assistance with an autistic child. A few years ago I came up with a mantra that has served me well not only with all things autism-associated, but in life as well.
If it’s not permanent, don’t sweat it.
I’m not saying I don’t have a good rant when I’m met with “I don’t know whens,” because that is my least favorite response in the universe. I do. And then I try really hard to let it go so I can focus on what I can change.
My car will be fixed. My shoulder will heal. Eventually ABA practitioners will be in my home.
It will all happen.
The truth is, if you’re raising a profoundly autistic child, there will be many very difficult issues you will not be able to change. Despite identifying his autism and getting him into therapy at an incredibly early age for a 2003-born baby, my son will never have mastery over the spoken word. Despite getting in-home ABA help, he will never be completely independent with his self-help skills. He will always need constant supervision.
He will always be at-risk for harm. This is the one that kills me.
There are so very many complex and distressing issues surrounding profound autism that we as parents must deal with every day, that trying not to waste energy stressing about the small, temporary “stuff” is a healthy way to approach things. I’m not saying I always approach the “big things” in a healthy way, but I try. In order to function I have to compartmentalize some things, like who will love him after his father and I die, or on a lesser note, how I will survive his graduation from his beloved school in seventeen months without melting into a blubbering mess (odds are against me on that one).
I do a lot of self-care. I meditate. I limit the wine (but not the chocolate, working on that one). I know how important it is to take care of me so I can function, and thrive, for him.
So if 2023 has not begun on a positive note, try hard to figure out what’s temporary, and what’s permanent, and most importantly, how you’ll deal healthily with both. If there’s any new year’s resolution worth making it’s figuring out what you have to do for you to stay healthy emotionally, mentally, and physically.
You are the most important person in your autistic child’s life and they need you, but equally important, you deserve to be happy and healthy just for you. Do whatever it takes to find that peace.
Don’t give up.
Here’s wishing you a 2023 with those goals in mind!
Posted in Uncategorized at 10:17 am by autismmommytherapist
I am, by nature, a planner.
Over the years as my severely autistic non-verbal son has grown into manhood I am always thinking about his future, and how I can make it a safer and happier place for him. One of the obstacles I kept coming up against was that it had been at least fifteen years since he had spent the night somewhere other than his own bed without a parent sleeping in the room next to him. His father and I know he will be living in a group residence some day, and I just couldn’t let that be his first time ever sleeping without us.
For a few years I had been lobbying my husband for us to let him try sleepaway camp, and my husband was always adamantly opposed. He felt, and understandably so, that our son, who was in his late teens, would think we had abandoned him because we’d always taken him home before. I knew in my heart Justin would never think that, but couldn’t convince my husband.
Then Covid struck, and after its first year was over I knew we had to get serious and take a chance.
Both Justin’s school and I bought him calendars, and every day we’d write “school” or “home” in the big blocks. We did this for months before camp started. I also pulled out his scrapbook from three years prior and showed him pictures of him at the camp, and told him he’d be sleeping there, but that Mom would get him at the end of the week.
I had no idea if he understood anything I said, but I had to hope.
Eventually the day came to take him to camp, and we packed up all his gear for the week and went. I saw him staring at the suitcases as I put him in the car, and noticed him gently rocking back and forth in the back seat, which usually means he is excited about where we’re going. I showed him the calendar again, and pointed out the coming week, with “camp” written in most of the blocks and then “home” at the end. The counselors had promised me they would hang up the calendar next to his bed and show him every morning.
I had to have faith they would.
We got to camp, his luggage was whisked away, I registered him, and then we were told to make our goodbyes. I whispered “have fun Justin, I love you, see you Saturday,” and then he was gone.
Leaving me both replete with hope, and with a giant lump in my throat I hoped I’d eventually swallow.
I made it until the next morning before calling the camp.
One of the lovely workers got on the line, said she’d seen him in his cabin that morning and he’d seemed fine, and they would only be in touch if there was a problem.
It was my cue to relax. We never did get another call the rest of the week.
Finally, Saturday came, and I drove up in the morning to collect Justin. I parked the car, told an administrator who I was here for, and waited to see my son arrive.
Within a few minutes he walked out with his assigned camper and stopped dead in his tracks, just looking at me. I said his name softly, and he slowly shuffled forward, with just the hint of a grin on his face. He came up to me, looked me in the eyes, and laid his head on my shoulder for a moment.
Then he made a loud exclamation and headed for the car. Moment over.
His “person” told me he’d been great all week, only a minor grab or two, and best yet, he’d seemed to have fun. Before we drove off I asked Justin if he’d had fun and would like to go back next year, and he gave me his gentle nod “yes,” which was enough for me. I admit, I drove home feeling ecstatic, knowing my boy could not only tolerate but thrive in a different environment than home or school, could potentially be happy living elsewhere than his mom, dad and brother.
It was the best moment of 2022 for me, and most importantly for Justin. I am so grateful to the employees at his camp and his school for helping to make it happen.
Happy New Year to all, and may 2023 bring all of us much to be grateful for!
Posted in Uncategorized at 9:16 am by autismmommytherapist
This past weekend I watched “Charlie Brown Christmas” with my family, which is no mean feat. Corralling my husband and two teenagers, my oldest of whom is on the severe end of the spectrum, can be challenging. It’s a tradition with the McCaffertys, and eventually I prevailed. My youngest paced around the living room, my husband got up three times to check on things, and my oldest at one point put a pillow over his face, but we watched the damn show.
I’ll take victory where I can get it.
I got to thinking about Christmases past, and how what is supposed to be a joyous holiday had at times been grueling. There was the year Justin showed absolutely zero interest in any of his gifts; we couldn’t even get him to open half of them. Then there was the year I was overwhelmed by my kids’ behavior at my in-laws Christmas celebration and ended up crying, and I’m a girl who generally now only cries at Hallmark commercials and Toy Story 4. All in all, there have been some tough holidays, celebrations where at times the only thing we seemed to be celebrating was when it was over.
The truth is, chez McCafferty, we are done with that, and I am eternally grateful.
My nineteen-year-old, non-verbal, profoundly autistic son now comes happily downstairs on Christmas morning, opens everything, immediately attaches himself to one gift, and we’re thrilled. My other son still shows enthusiasm for his stash even at the ripe old age of fifteen, and for that we are grateful. For years there have been holidays with no tears, just joy.
If you had told me that would be the case ten years ago I would never have believed it.
So if you’re just starting out on your autism journey with your kid or kids, just know, it can get better even when it seems impossible that it will get better. While you’re getting through the difficult years try these strategies. Go for a shortened period of time that will get you through gift opening and a meal, skip dessert (or take it home with you) and get out. Bring your kid’s favorite foods with you and tell the host in advance whatever you’ll need to do so they can eat. Take a favorite toy with you and hide it until you see if it’s necessary to bring it out in case your child doesn’t warm to his or her presents. Tell everyone in advance you won’t be staying long so there won’t be any disappointments. Find out if there’s a quiet place your child can go in case he or she gets overwhelmed.
Find out if there’s a quiet place you can go if you get overwhelmed, and make sure wine is involved.
We all have huge expectations for the holidays. Sometimes it’s good to just bring them down a notch, and hope for a good hour or two and call it a day.
Eventually, I learned to do that. And it made for much happier holidays.
And if all else fails and it’s just miserable, hang in there and remember there’s always the chance it will be better next year. It has gotten significantly better for my family, and for many others that I know.
Posted in Uncategorized at 12:41 pm by autismmommytherapist
Three weeks ago I had the opportunity to take my son Zach, who is a sophomore in high school, to look at colleges with my husband. Prior to the trip he was decidedly unenthusiastic to say the least. Apparently none of his friends were going (not true), he would forget all the schools (also not true because his mom photographed every building), and it would take up his whole vacation.
Also not true. Only four days out of nine. My math is rusty, but that’s not even half (I think).
There are other more compelling reasons he pretty much chose to ignore, like the fact that the four days we were gone his severely autistic brother was in school, so minimal child care was necessary, or that our next NJEA break we’ll be in Disney.
I offered to take him on college tours instead that week next year. He was not amused.
At the end of the first day when we’d seen two colleges in PA (and he’d gleefully told the admissions officer at the second that her presentation had just blown away his dad’s alma mater) I asked him if this had been a good idea.
I was met with an enthusiastic “Yes, this is great!”
Victory. With a teen I will take it whenever I can get it.
I loved every minute of this tour, even when the GPS got us hopelessly lost on a mountain and I wondered if Jeff and I were still smart enough to take our son on college tours.
The jury is still out.
I loved it because I am really proud of my kid, who has conquered many obstacles, most recently breaking his hip at fifteen, losing an entire summer, and being faced with the potential of a lifetime of surgeries. I truly meant the word “victory” in the paragraph above- it felt victorious to see him walking unattended, soaking up the college life, and exuding enthusiasm for something that was previously unimaginable to him.
I also love it because for once I was solely focused on him, not his brother’s needs for the future.
Many of you who know me will not be shocked when I tell you I have a plan for Justin too, one I hope will rival what I believe will be a fabulous life trajectory for Zach. I will write more about my plans for Justin at a later date, but I realized on this trip I am excited about both boys’ futures. One who may follow a more traditional path of college, career and love, and one who will hopefully be placed in an exciting and safe residential setting, with a great day program and lots of trips to Great Adventure.
Posted in Uncategorized at 11:34 am by autismmommytherapist
The other night I had the opportunity to take my eldest son Justin, who is nineteen and profoundly autistic, to Town Square at the Jersey Shore, which is an organization in Brick that has a lovely day program for elderly adults, some of whom have memory issues. It was an evening event held after the seniors went home and it was a wonderful gathering of disabled adults, many with Down Syndrome or higher functioning autism than my son, and some as disabled either physically or mentally as my son is. I registered for the event knowing that Justin at best would stay willingly for the hot pretzels (he loved them!) and the costume parade, and then we would be a hard out prior to Bingo.He did beautifully with both.
I wasn’t sure how this would go as a few months prior we had tried another event and things hadn’t gone so well. He loved the dinner they provided, but was so loud with his vocalizations during the movie that after fifteen minutes of trying to quiet him down we had to leave. Not that I was asked to leave, but I felt it wasn’t fair to the rest of the guests, so we called it a day.
Which is why going back last week and having it be a success meant so much to me.
I had so many thoughts as I drove home with Justin rocking out to my Sirius radio on the way. The first is that even within the disabled community at large, profound autism is a special piece of the pie. So many of the adults there were interacting with one another, some had parents in a room without a visual of their kids, and some were drop-offs (!), a concept so alien to me it took a minute for it to sink in.
Justin will never be a drop-off in his eighty years on earth. Not even for a minute.
What I came away with however was hope, because before I left I had a great conversation with one of the proprietors who mentioned she had a severely autistic son herself, and he had not been able to attend either of their events because they would have been too difficult for him. She told me how much they wanted to do some events just for severely autistic adults, as they truly seem to have their own niche, and are underserved in this area. She asked me for ideas, and I promised to get back to her, and I will. She couldn’t have been lovelier or more receptive to my concerns.
And this is what helps make a community great.
I will write more down the road if any of these events transpire.
I fully believe in second chances, and am so grateful Justin had his.
Posted in Uncategorized at 12:35 pm by autismmommytherapist
The thought occurred to me as I was taking my daily walk, scrolling through pictures on my phone instead of paying attention to the road ahead of me as I should have been doing. There were so many photos of my kids at Halloween, some trick-or-treating, some just posing in costumes as their mom clicked away. I realized so many of the pictures were not completely representative of Halloweens past, as particularly with my eldest son there were many meltdowns along the way.
But we persevered, and now at nineteen he gets excited to get into his costume, hit a bunch of houses, go home and not eat the candy.
More for me.
When he was about seventeen months old and we were living in Virginia I dressed him up as a bumblebee, and me and my mom, who was visiting, attempted to take him through our neighborhood in his stroller.
It was a disaster.
By house two we were up to a slow whine. By house four there were tears and we headed for home, where as soon as we crossed the threshold he immediately perked up and made his happy sounds. I remember thinking “how can I have conceived a child who doesn’t like Halloween?” My mom chalked it up to his being tired, and together we hoped for better luck the next year.
By the next year he had his autism diagnosis, and we were firmly entrenched in many hours of ABA a week. Halloween was no longer a priority.
By the time he was three we had moved back to New Jersey for better services and schools, and once again I attempted trick-or-treating with my pre-schooler. Over the years he slowly began to get into it, but we took baby steps. At first it was just a few houses. Over time, more and more houses and farther distances. Eventually he began to get excited, showing enthusiasm when I’d get his costume out of his closet, eagerly grasping the cloth bag he’d use for his loot.
Today he is an adult who I believe mirrors his mom’s passion for Halloween.
And we would never have gotten there if I had given up.
Autism is cyclical in many respects. I have found over the decades that Justin will embrace something and then down the road it will be dead to him, or the reverse. But in truth, the most important thing is not deciding not to give up.
It’s knowing when to let something go, and knowing if and when to revisit it later.
The other important thing to know is that there’s not a window on skills. I am still teaching Justin self-help skills at nineteen, and he is still mastering them. When he developed tic disorder at seventeen he lost most of his words, and some skills. We are patiently reintroducing them to him over time, and seeing some successes.
In other words, know when to call it quits, and trust your gut as to when to revisit a goal. Your child is on his or her own timeline, not those of the early intervention therapists in your home, or his teachers, or even yours. Be patient, don’t stress about when milestones are met, and listen to what your child is telling you even if he or she isn’t telling you in words.
I am officially wishing all of you a very Happy Halloween!
Posted in Uncategorized at 12:09 pm by autismmommytherapist
I pull up to a mostly empty parking lot, my nineteen-year-old severely autistic son rocking out in the backseat with anticipation. We have been to this location once before but I had yet to register for access to the Toms River RWJ Barnabas Field of Dreams, and I had wanted to take a look at it first before I went to the trouble. Justin had sat patiently in my car that day as the volunteers actually let me register in person and quickly look around so I could make my decision.
It was awesome. I found myself wishing it had been around years ago.
Even though Justin is nineteen he is developmentally around six years of age, and the time when he “should” have outgrown playground had been extended for many years due to his developmental disabilities. His desire for playgrounds had waned however about five years ago, and we stopped going as he only wanted to be there for a few minutes and it wasn’t worth the effort.
As I quickly looked around at the space I was really impressed how they had designed it with special needs kids in mind. There were a variety of different kinds of swings throughout the park. A huge climbing apparatus with slides and a rock wall offered other opportunities for gross motor activity. There was a large enclosed seat that acted as a zip line, and a cool musical arch that when a button was pushed gave directions to dance on a variety of painted numbers. There were bathrooms and a basketball court, special see-saws, and it was all completely enclosed.
I remember at the time thinking Justin would have loved it ten years ago. I was interested to see if he’d love it now.
We got to the locked gate, and sure enough the app that I downloaded worked, and we were admitted. Justin hesitated a moment then ran directly to the apparatus with the slides, and gave them a whirl. I was able to convince him to go on the zipline a few times, which he seemed to like. Swings were out. Then he discovered the arch and the one thing it’s possible to perseverate on in the entire playground- the button.
He went to town on that, but eventually I was able to redirect him to check out the bathrooms. Again the app worked to unlock the door, and afterwards we worked our way back to the arch again and back to our car.
I will definitely bring Justin back again, but I would do what I did this Saturday, which was go about when it opened so it wouldn’t be that crowded. Although he is skinny he is still an adult, and I’d rather not have him around a ton of little kids, plus if he pushed that arch button when someone was trying to follow the directions they could get upset.
I checked out the website: https://rwjbhfieldofdreams.com/ that morning before I went and found out this year it was only open from 6/27-12/4, and closed on Sundays. The hours are listed there as well. It also seems that events are held there that all members can attend but that might draw large crowds, so it’s a good idea to check the website before you go. There are volunteers there at certain hours each day. If you’re interested in joining, go to the “become a member” tab on the website.
All in all it was an awesome venue, one which I will try again with Justin in the future. I saw some very happy little kids there, and I’m certain many families will take advantage of this playground again and again. One of the volunteers said it does get very crowded on nice days especially later in the day, so keep that in mind.
As an autism mom, I’m always looking for things to do with Justin, and it’s gotten more and more difficult as he’s grown older and his interest in things has waned. I think this may be something he will enjoy on occasion, even if it’s not for an extended period of time.
A lovely idea that will bring joy to many. Hope it works out for all of you.
Posted in Uncategorized at 8:20 am by autismmommytherapist
Promises, promises.
I see them on a number of blogs and Facebook posts. Promises that your autistic child will get better. Promises that it will get easier.
The words “I promise you” set in ink.
As a nineteen year veteran autism mom I can tell you that most of the time, this is true. I’ve now met dozens of autistic children and their parents, and I can honestly say in only one case have I not seen things get better, seen a child turn into an adult without any semblance of joy in his life.
But that is not to say there are not constant challenges along the way.
I’ve often said this- autism is like wacamole. When you conquer one problem, often another one pops up. I also say that sometimes autism is cyclical. Back in the day when Justin was four we tried to potty train him, and it was an unmitigated disaster. We tried six months later and eventually we met with success. He did great for years, and now there are issues again that we hope we’ll once more conquer.
I know it will take patience and time, just like it did sixteen years ago.
I think it’s important for parents to know that as your child grows most likely issues will continue to occur, and sometimes things you thought were in the books come back for a visit. We were blindsided five years ago when Justin developed tic disorder, including horrible body movements that it took seven doctors in almost as many states to diagnose. We were fortunately able to alleviate many of his symptoms with an increase in a medication he was already on, but I will tell you those months were harrowing for him and our family. There have been lasting repercussions, and we have had to adjust to our new normal with him- loss of the little speech he had, loss of some of his affectionate nature, the smiles that were so frequent.
Adjustment has been difficult for all.
But still, Justin has come through this and so has his family. I have a nineteen-year-old severely autistic non-verbal son who still seems to be mostly happy with his life, who we can take many places in the community and is able to entertain himself at home most of the time. He eats fairly well, and is a great sleeper.
He still out of the blue grabs me and plants a big kiss on me, looking into my eyes and grinning.
I just think as a parent I am better when I am prepared, and it’s good to know that things can happen.
It’s also good to know that often, it turns out alright.
Posted in Uncategorized at 10:13 am by autismmommytherapist
“Wow, he spent an entire week at sleepaway camp without you, that’s amazing!” said a dear friend.
It is. Truly, it is.
It’s a very big thing. And I have to tell you, it’s not as the result of major choices we made, or large milestones met.
It’s due in large measure to the fact that he wanted to be there.
It’s also due to the fact I miraculously remembered to pack everything.
But mostly, it’s due to the little things.
There are so many major milestones most parents hope they’ll achieve with their autistic children. We long to hear them speak, or at least have functional communication. We desperately want to see them potty train, and sleep. On occasion, we dream big, and hope one day they’ll eat vegetables instead of an all-carb diet.
And none of these milestones are ever met overnight.
Back when Justin was little and still in Early Intervention therapy, I remember one of his therapists talking to me when I was feeling overwhelmed. She said that the clients she saw make the most progress had parents and teachers and therapists who did the work- the often grueling, repetitive work of teaching a skill over and over and over, until it’s mastered. She told me that day that the kids whose instructors didn’t give up often got the best results.
I know, it sounds obvious. But when you’ve put your child on the potty for the one thousandth time it often seems like this will be forever, and will never work.
Sometimes, it doesn’t. More often than not, eventually something will click.
Justin didn’t just waltz into sleepaway camp for the first time at nineteen completely ready to sleep in a cabin with a number of other people. He was successful because we took baby steps. A few nights at his grandma’s. Every other year trips to Disney, where although he’d be in the room with one of his parents, he’d also be in a strange bed.
He was successful because his mom, teacher and camp counselor showed him a calendar every day for months with the word “school” or “home” and “camp” in the squares so he’d know how long he’d be there.
He was successful because we’ve taken him places all his life even when it was hard, sometimes for just a few minutes before we’d leave, so he could learn that going out was fun.
He loved this week at camp because all the helpers in his life did the little steps to see him potty trained, able to sleep, able to eat, and able most importantly to adapt to new circumstances.
His ability to sleep away from us was truly a nineteen year work in progress.
So if you’re exhausted right now with trying a new skill, you may decide to put it on the back burner for a while. But if it’s important, come back to it. All of these skills I mentioned were integral to his ability to leave us for an entire week, will be integral to his ultimate success of being able to live away from us permanently. So whatever you’ve chosen to work at, keep at it. Ask for help when you can. See if other people can help as well. Because this one skill may just make your child happier and your life easier- but it might also lead to something big down the road.
Something big like a severely autistic non-verbal adult thriving at sleepaway summer camp.
Posted in Uncategorized at 9:31 am by autismmommytherapist
Crunch.
I am briefly slammed forward, my purse thrown to the floor of my car. I look quickly behind me but Justin is already leaning back against his seat, seemingly no worse for wear. I slowly drive far enough away from the merging traffic to the side of the road where I won’t get hit, then pull over. In my rear view mirror I see a woman in an SUV stop behind me. I tell Justin we’re okay, leave the motor running because it literally feels like 102′ outside, and walk back to her car after assessing the damage to mine.
She is visibly shaking, probably in her seventies, profusely apologetic. She sees Justin rocking back and forth in my car and shaking it, and asks if he’s okay. I tell her he’s fine and he’s autistic, that’s why he’s rocking, and her face crumbles and she says she’s sorry one more time. I tell her we’re all fine and that’s what matters, and to get back in the car and call the police while I call my husband.
All I can think as I walk back to my damaged car is the line from Monty Python, “’tis but a scratch”.
I walk back to her car a few minutes later and find her too flustered to figure out how to call the police, so I dial 911 and we wait. Two lovely officers come within minutes, we write reports, they check my information (even got to trot out Justin’s non-driver license). I am asked to go to the woman’s car so she can apologize again, and after making sure the police will keep an eye on my son I do. Within twenty minutes everyone pulls away as I wait for my husband to come.
I put everything back in its place, call our Subaru dealer and tell them we’re coming in, and sink into my seat. When bad things happen in our family I try to find the bright side when I can, and here it’s fairly easy. Nobody was injured. I didn’t hit the car in front of me. It will be a big inconvenience but not cost us anything.
And with a huge sigh of relief, I acknowledge the most important part- Justin did not have a meltdown.
Even a few years ago I would have been terrified after that crunch, because like many autistic people Justin is not a big fan of a change in routine, and the aftermath of the crash could have been dicey. Instead, my severely autistic boy of nineteen years just sat back in his seat and chilled for about an hour from start to finish, shaking his head no when I asked him if he wanted juice, gently rocking out to classic vinyl on the radio. He was amazing at the dealer, not protesting when he had to change cars, seemingly unfazed that his trip to Seaside was dead in the water.
He was patient. He was chill. Not too long ago these things would have been completely out of his grasp.
My point is this. Those of you especially with young autistic kids, might think all the challenges you’re facing are permanent. I won’t lie to you- some of them might be.
But the truth is your son or daughter will probably conquer many of them over time, with patience and hard work. I could never have imagined five years ago I could be in a car accident with my son, and all would go smoothly. I would have scoffed at anyone who suggested it.
And I would have been wrong.
Ask for help with challenges when you need it, from your child’s Early Intervention therapists, from their school, from a BCBA through insurance if you can. Do the work. Be patient. Know it may take months or years to change whatever behavior you want to change.
Autism Mommy-Therapist 