September 28, 2022
RWJ Barnabas Field of Dreams
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.
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September 15, 2022
Promises, Promises
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.
Keep the faith.
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August 30, 2022
The Little Things
“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.
Don’t give up.
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August 10, 2022
The Bright Side
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.
Be gentle on yourself while you work.
And most importantly, don’t give up hope.
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July 26, 2022
Status Quo
I haven’t written about this in a while, but a few years ago I came up with the idea of getting a few of my autism mom friends together, women I’d known for more than a decade, to try and create a group residence down the road for our severely autistic kids. I’d mentioned it to all of them but was finally spurred on by one of the women with a “what are we waiting for,” and we all met and christened our endeavor “Homelife 21.”
It’s been over a year that we’ve been meeting monthly, and finally our 501(c)(3) status has come through. We are official.
It will be years before this comes to fruition, and I am okay with that, as things are going well with Justin at home. At this point we’re looking at seven or eight years down the road, which could potentially coincide with my youngest moving out, which for Jeff and I would mean an empty nest.
That’s a dream I would have imagined was impossible ten or fifteen years ago.
We have big plans for this residence. I won’t divulge everything now as we are just fleshing it all out, but we hope it will be an amazing experience for all these young men, filled with fun activities, an avenue to give them some measure of independence in a world where they will always have 24/7 caregivers.
I’d like to give my son that freedom.
I’ve written about this dream in the past, and have received some criticism for our project. I’ve had people intimate that I want to get rid of him, conveniently forgetting that at some point his father and I will die and no longer be able to care for him. My wish is to see him safely settled for years before we pass, so we can iron out the kinks, and still be able to visit him and have him spend time with us before we are too decrepit to travel.
His father and I will always be in his life to our last breaths. We just need the part we play to transition from caretaker to visitor.
When I get together with my friends I feel very optimistic about the future. It will be an incredible amount of work- finding a home, land, hiring staff, furnishing it, etc. There will be many challenges along the way.
But I know it will be worth it. And I know in my heart for my particular child it is kinder to do this sooner rather than later, while he is still young and more flexible.
I hope he loves it.
And after watching him embrace a week of sleepaway camp for the first time in nineteen years, I have hope.
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July 19, 2022
Ask for Help
It’s been six weeks since my fifteen-year-old son broke his hip at school in PE class, and the dust is just beginning to settle. Yesterday in physical therapy we were rewarded by watching his first tentative steps, and I have to say it was as thrilling as the first time around.
Looking for the bright side here.
Zach has been absolutely amazing with all the challenges he’s had to face, from managing pain to managing a flight of stairs. His freshman year will finally conclude this week, and except for his Sophomore year summer work I’m hoping he can rest and relax soon. He’s earned it. I’m happy to say our family is in a much better place than we were in early June.
We couldn’t have done it without the support of his teachers, his guidance counselor, his family and friends.
Zach’s accident has pretty much thrown me back to the days when both kids were toddlers in that his father and I are not comfortable leaving him alone until he can walk unassisted, which won’t be for a few months. It’s weird negotiating with my husband about when I can run errands, or on a rare occasion get out to see a friend. Although we can never leave Justin alone we’ve been spoiled for years with Zach’s independence, and it’s jarring to see that taken away. I don’t take much for granted in this world, but I appreciate what he had and what he’ll get back to even more than I did a month ago.
Spending an enormous amount of time at home has given me the opportunity to think, both about the ramifications of his accident, and the aftermath. We had a huge outpouring of support from multiple places, so much so that it was hard to keep track of everyone. I took a lot of people up on their offers and they came through- from food and wine (!) and medical equipment to “babysitting” Zach so Jeff and I could take Justin to Great Adventure. It’s been wonderful to weather this crisis with so much support.
And it made me realize through so many other crises in the past eighteen years since Justin’s diagnosis how I should have asked for similar support.
There have been so many different problems, both large and small since the day Justin’s pediatrician shoved a handful of badly printed articles with the word “autism” in the title into my shaking hands. There have been periods of sleep deprivation we thought would never end. Food refusals. A few attempts at elopement. Figuring out how to pay for services without insurance coverage. Issues with transportation and schools. Aggression. Finding friends. Justin’s tic disorder coming to call a few short years ago, and the loss of his words and personality.
The list can go on and on, but I don’t want to get too dramatic here.
The truth is we could have used this level of support throughout all of these incidents, but honestly we were just trying to make it through the day, and often I didn’t have the energy to reach out. It’s difficult to explain to people not raising a disabled child that your fear that what you’re dealing with may last forever is sadly very real.
Still, I should have reached out more.
So my advice is if your child has recently been diagnosed, start a tradition with the people in your life. Let them know what your facing, and let them know what you need. If it’s food ask, but be specific. If it’s a desperate need to get out with your significant other, put that out there too. If you need help taking your child to the doctor, find that person. Collect if you can a posse of people, all who will have different strengths and be able to help you in different ways, and start early.
I’ve always found the difficult times with our son to be cyclical. I’ve often felt that autism is like playing wacamole- you conquer something and eventually something else crops up. As each problem presents itself, don’t be shy about talking about it and asking for what you need. When my youngest broke his hip there was such an outpouring of support in part because people could relate to this accident- it could happen to them or someone they love. So many of the things that autism families live through are foreign to neurotypical families. People need to know what you’re all going through, and they need to know specifically how to help.
And I have truly found that people want to help, they just might not know how.
Ask.
And ask again.
Create assistance traditions. The worst someone can say is no.
Find your people.
And never stop reaching out when you’ve found them.
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July 7, 2022
Freedom
I know, it’s been forever. And I apologize.
So much has happened in the last few weeks that it will take several posts to recount it all. My youngest son fell and broke his hip, which has pretty much consumed us this last month. He is making progress, still finishing up his freshman year, and mostly has a great attitude about it all. My eldest is making strides at being able to handle our local boardwalks again, and most importantly, for the first time in nineteen years spent time away overnight from his family.
An entire week.
It’s this last pivotal event I want to write about today, because I frequently remind myself of it just to remember it’s true. We sent him to Rising Treetops at Oakhurst, a camp he went to for day camp once three years ago. It was closed in 2020 along with the world, and last year they were only doing two week sessions of sleepaway camp, and his father and I were just not ready to take the leap.
And a leap of faith it was.
We tried to prepare him as best we could. His teacher and I bought two calendars, one for home and one for school, and we wrote on each square “home” or “school” for several months. When it came to his camp week I pointed out all the squares that said “camp,” and sent the calendar with him in the hopes that staff would show it to him daily.
You see, one of the biggest fears my husband had was that he would think he’d be staying there forever, that we’d never go get him. This is the only way I could think of to let him know he’d come home again.
Apparently, it worked.
According to the staff member who worked with him the most, he ate well. He slept, although up at 5:00 AM a few times, but he slept.
They said he even smiled.
When I went to pick him up there was no mad rush to my arms, as befits a teenager. But when I called his name he walked up to me, leaned in, and rested his head on my shoulder.
No words needed.
I asked him if he had had fun, and he gave me the coveted nod. I asked if he’d like to go back again, and saw him nod again. For Justin, that is a rousing endorsement.
His father and I are thrilled. We are ecstatic that there is one more thing we can add to his leisure repertoire, which has scant few activities to accompany it as the years progress. And we are thrilled, as this camp does respite throughout the year.
It opens up the possibility for Jeff and I to get away for a weekend. It may let us attend friends’ children’s weddings. It enables the three of us to take Zach on college tours.
It will let me slip away with my girlfriends and know my husband is only left with one kid to care for.
It is a miracle.
It is freedom.
It is an accomplishment made by his family, teachers, therapists, and everyone else who’s helped him become his best self over almost two decades. It is an achievement forged in tiny steps, in avoiding short cuts, in sticking to demands made.
It is a milestone made in hope.
And despite all the help, it is mostly his. Because if he didn’t want this broadening of his life experiences, it never would have happened.
I can’t wait until next summer (or sooner).
I am so proud.
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June 3, 2022
At the Boardwalk
This week in the 90-something degree heat (I’m a glutton for punishment) I took my nineteen-year-old severely autistic son to our local boardwalk, something I’ve been doing for sixteen years, for the most part until recently without an issue. I won’t lie and tell you in the beginning it wasn’t rough. I have a few permanent bite marks on my shoulders from when he was little and I could still carry him, and in those days a trip might stop almost before it began. But I perservered with him because I knew in my heart it would be something he eventually loved, and equally important something he could do through adulthood.
And eventually he learned to love the rides and the pretzels and the long walk on the boards, and it was one more blessed thing I could do with him on my own.
Since Covid has struck, that ability to take him on my own has been sorely compromised. We didn’t go for about a year, and then last spring I went with my sister-in-law for the first time in twelve months and it was disastrous. Justin insisted on going in the Fun House which he hasn’t wanted to do in over a decade, which is not a great place for him. We did that, then he wanted to go back in through the exit, then wanted to explore a locked door that lead to the underbelly of the attraction, then completed the trifecta by refusing to leave after wanting to go in a second time. I had to call my husband and brother-in-law to come get us, and it took the four adults to get him back into our car.
Not a stellar outing for us.
I managed to get him there a few more times this past summer with help from our friend who is a strong young man, and I definitely needed his help from thwarting Justin from going on one ride that isn’t safe for him (a centrifuge that is the inner circle of hell) and from keeping him from trying to go on every ride in the park, even ones he’s too big for anymore. We pulled off these visits fairly successfully, but I was exhausted at the end. The boardwalk is supposed to be fun.
And it is my hope, with a wonderful behavior plan by his school’s BCBA, that it will one day be fun again.
We tackled Jenks in the heat the three of us, my boy, his BCBA, and myself. We started teaching him to use a long strip I created of pictures of rides, him eating a pretzel, and my car, to give him a sense of what comes next on these outings under the new rules. The goal is to get Justin to go on three to five rides (all appropriate ones for him), eat a pretzel, walk the length of the boardwalk, and go back to my car.
And that, our excellent BCBA reminded me, will take practice.
So over the next month I will harangue my husband and our family friend to get down there, and get Justin accustomed to the new rules (which aren’t really that much of a divergence from the old) so that eventually I can take my boy back, just him and me. I will let you all know how it goes.
The truth is I’ve had to let some things go as he reached adulthood, as I would with any child. But I’m not ready to give up on this. It’s too entwined with memories of him as a little boy, with the smells of the sea air and the pounding of the surf and the solid feel of the boards. Since he developed tic disorder five years ago he doesn’t display joy as he once did, but I know some is still in there.
This is a place of joy for him. And I am determined to win it back.
With fingers crossed, and a plan from ABA, I hope to do just that.
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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!
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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!
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