May 10, 2020

Mother’s Day

Posted in Life's Little Moments, My Take on Autism tagged , , , at 10:36 am by autismmommytherapist

Oh, what an interesting Mother’s Day this will be.

Normally, there is a lot of pageantry surrounding Mother’s Day in this house, as I consider it to be a high holiday. In years past there have been scavenger hunts conducted by my youngest, and homemade cards galore. There is always at least one meal I don’t have to cook (yay!), a few gifts, and a general air that I am queen for a day. My youngest and I usually go to church, followed up by a family trip to Great Adventure. Top that off with a visit from Grandma to celebrate, and Mother’s Day has always been a special event chez McCafferty.

This year, of course, will be different.

Hopefully the not cooking one meal will stand (a girl must have her dreams). My youngest is now way too old for scavenger hunts, and Great Adventure along with everything else in the world is closed.

If there is a Grandma sighting, it will be with her masked and waving from the driveway.

No, Mother’s Day won’t resemble anything like our usual celebrations.

But cherish it I will.

Seventeen years ago this month my beautiful son Justin made me a mom. I hoped for healthy and happy, and secretly wished he’d love to read and go to the beach as much as I do.

For short periods, he likes to do both.

I can tell you that almost none of what I envisioned for his life trajectory has come to pass, nor will happen. I envisioned playdates and driver’s licenses. Prom, college, and maybe grandkids before I was ancient.

The truth is, absolutely none of this is going to happen.

I won’t tell you it doesn’t matter. But what I will tell you is that my boy and I have been able to forge an unbreakable bond of love and trust I wouldn’t trade for the world. He has taught me patience and tenacity in spades. I love him to the moon and back.

Thirteen years ago my incredible son Zach completed our family. He has taught me to look at the world in unique ways, to perservere, and to love Marvel movies with all my heart. My youngest will have more of a “traditional” life, whatever form that takes.

And I can’t wait to see what form that takes.

The truth is, I have many roles in this world, but the one of mom has been my calling. I couldn’t ask for better sons.

I will fight for your happiness with my last breath.

I will always be your champion and ally.

I love you both so much.

Thank you for making me a mom!

Follow me on Facebook at Autism Mommy-Therapist

May 2, 2020

Just Breathe

Posted in Life's Little Moments, My Take on Autism tagged , , , at 6:43 am by autismmommytherapist

Week Six of homeschooling complete. We have survived.

The weeks have gone smoothly with my middle schooler. He is so used to doing assignments in Google Classroom that there’s been barely a hitch all these weeks, and his schoolwork has kept him busy on average about four hours a day. This left me ample time to monitor my severely autistic teenager, who has been an absolute champ at rotating through stations in my house where we do work.

By the end of the first week of homeschooling I’d received lesson plans for Justin that went into full force. Doing ABA, speech, OT and PT has been a bit challenging, but has revived skills I used with Justin many years ago. Ironically we’ve gone “Circle of Life” here because sixteen years ago I spent almost a year-and-a-half as his ABA teacher. We lived in Virginia then, which offered me scant hours of speech and OT, and no hours of core autism therapy. I got trained in the practice of ABA and worked with him about six hours a day until we moved to New Jersey and within weeks had more than thirty hours of instruction weekly in our home. No matter how challenging the coming months may be instructing Justin, nothing will ever compare to that period where I daily felt desperate that I wasn’t doing enough or doing it right. Whatever Justin gets out of this, he will be fine.

And I will be fine too.

It is an understatement to say it is not easy to homeschool your own child (homeschooling moms and dads everywhere, I salute you!). The first week I saw posts on Facebook by incredibly strong moms who were brought to their knees by 10:00 on the second day. I taught fourth, fifth and sixth grade for twelve years in DC and Virginia, and I can honestly tell you that teaching thirty students who are not yours is often easier than teaching your own. Add in that some of these parents are still trying to work from home or have to work outside their houses, have multiple kids, not enough computers, have elementary school kids who are more hands-on, or might have children with special needs who need one-on-one instruction (plus the meals!), and posts about “suspending” their kids are completely understandable.

I just want you to know you’ll get through this too.

None of us knows as of this moment how long this will last. One thing I do know however is that you’re going to figure out how to give your children what they need, even if it takes a few weeks in the process. Especially for those of us with severely disabled kids, don’t make yourself crazy trying to get to every assignment. The teachers at your child’s school are trained in what to do with them- most likely you are not. I can guarantee they are not expecting you to deliver services like they do, and they will be happy to see your child is doing something to keep skills in place and stave off regression. Do what you can. They will be okay.

You will too.

Parents, make sure you take breaks too, whether it’s exercising, a stolen show on Netflix, or just some wine you hopefully stocked up on in case the liquor stores close (heaven forbid!). Do your best, but be good to yourselves too. You will figure it out.

Take care of yourselves.

Eat chocolate if you have some.

Just breathe.

 

Follow me on Facebook at Autism Mommy-Therapist

April 13, 2020

Moments

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 7:04 am by autismmommytherapist

The familiar notes of the Edmark Reading Program emanate from the computer, as my son lets out his elusive giggle and stares me straight in the eye. He is on this program often so I’m not certain what instigated his mirth, but perhaps it’s because his mom is sitting next to him this time. He continues to laugh as I choose programs for him, hoping to elongate his homeschooling just a bit longer. All too soon the laughing ceases as he gets back to the more serious business of learning, and the moment is gone.

The cool thing is, I am confident there will be more of those moments to come.

Please don’t think this is a rousing endorsement of sheltering in place. I desperately wish my severely autistic seventeen-year-old was in his beloved school. We worked so hard to get him this placement, and I have tried so hard to get him there every single day that was possible. I am so grateful this is not his last year, and feel so badly for those of his classmates who will probably never go back. I know I will be a mess when he graduates, and am grateful I am spared that sadness this year.

Justin has been absolutely amazing these last few weeks. When we first heard about the two week school quarantine, and I began to suspect it would last much longer, I wasn’t sure how this was going to go. In past years Justin would have been throwing his shoes at me every day and clamoring to go to the car. Our existence would have been a nightmare, as no explanation would have sufficed for a kid who could clearly see there was no snow outside, and no earthly reason why his mom couldn’t take him somewhere fun.

Just shy of two years ago Justin began terrible body movements that after nine months and seven different diagnoses was finally termed tic disorder, and I cannot imagine how that terrible almost-year of waiting and worrying would have played out could we not have left the house and met with the doctors. The timing for this, at least chez McCafferty, has been doable.

So far, he seems to have adjusted beautifully. There is a rhythm to our days now, which is important to him. We work together in the morning, he takes a technology break, and then we work together after lunch. It’s been smooth sailing thus far.

But what I didn’t anticipate would be those fleeting yet frequent moments of connection, the gift of eye contact, that elongated hug that is often all too short. One of the things the tic disorder seemed to deprive my boy of was the need for affection, once a staple in his life. I’ve missed that part of him as he was always my cuddly boy, which a lifetime ago had made his diagnosis seem impossible. I’m seeing some of that affectionate nature to return, and it makes these difficult times easier to bear.

It helps to get me through these days of worry and uncertainty, and for me the hardest part, not knowing when they’ll end.

He is a joy, and I love him.

And for now, that will have to be enough.

 

Follow me on Facebook at Autism Mommy-Therapist

April 2, 2020

World Autism Awareness Day 2020

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 6:20 am by autismmommytherapist

Today is World Autism Awareness Day, thinking of all families during this difficult time!

I walk into the kitchen area holding my Tupperware, material for one of the many activities I’ve been doing with Justin, my severely autistic teenager (he matches lids to bottoms better than I do). My eldest is now heading upstairs for some computer time well-earned, and my youngest is on hour three of virtual homeschooling. I take a moment to reflect upon how grateful I am that the last two weeks have gone so smoothly, and treat myself to a piece of chocolate.

My priorities are still intact.

There were a few glitches when I started homeschooling Justin, but the staff at his school have been wonderful with communication and I think I’ve figured them all out. I’ve been reaching out to my group of friends with autistic children, and there seems to be a unanimous consensus- everyone has adjusted and is doing really well. Autistic kids and adults are not really known for their capacity to adapt to change- many love their routines religiously, and the virus has completely disrupted that sense of continuity for them. Like many of my friends I’ve worried that Justin would have meltdowns when he realized he wasn’t going to school or anywhere- years ago, this would have completely been the case. Instead, like my friends’ children, he has completely gone with the flow, even complying to take walks around the neighborhood and not insisting on getting into my car.

I’m grateful for that too.

The truth is I’m not surprised by how well it’s gone for me and my friends. Being autism families, most of us have all spent a great deal of time in our houses at some point in our lives. There were years where there were only a handful of places I could take Justin due to his behaviors, and certainly we were not going out as often as most of my friends with neurotypical kids. I remember when we came up to Jersey from Virginia to house hunt I told my husband we’d better really love the house we chose because we’d be spending a lot of time in it, and that has proven to be true. And while my ability to get Justin out has increased over the years, his desire to go certain places has decreased. We are home a lot. We’ve had a lot of practice with self-quarantine.

We’ve also had a lot of experience with adversity.

While I am thrilled with our success and the success of my friends’ families, I am under no illusion that shelter in place has gone so well for all the families in our community. I have read many posts online of families who are really struggling. There are those with higher functioning children and adults who don’t understand why they’re not going to beloved schools and day programs. There are more challenged adults and children bereft at their inability to go to a favorite restaurant or movie theater. There are children who have begun to regress in skills, adults exhibiting aggressive or self-injurious behavior.

There are many families not posting pictures of their fabulous social distancing hikes.

I’m writing this post because there are families out there who are truly struggling, who are even more isolated than they were two weeks ago. There are many with children and adults who are truly suffering with these restrictions, who are unable to comprehend why mom and dad can’t tell them when this will be over.

I want you to know you are not forgotten.

I want you to know you are strong, and you will get through this.

I want you to remember that someday, while we will have a “new normal,” this will be over.

We see you.

We remember you.

Don’t give up.

 

Follow me on Facebook at Autism Mommy-Therapist

 

March 18, 2020

Homeschooling Galore!

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:24 am by autismmommytherapist

Today is day three of “education chez McCafferty.” To homeschooling moms and dads, it’s just Wednesday.

I’ve waited a few days to write just because I wanted to see how things played out. Virtual learning will start tomorrow with Justin, and Zach has been faithfully spending about three hours a day doing his work remotely. I admit on Monday morning I was worried about how this would go, but when I inquired I got “the hand” and an exasperated “Mom, I got this” and moved on.

Having a teenager has taught me to walk away (and fast).

I want to take this time to thank the teachers and administration at Veterans Memorial Middle School, who at least for my child have put together seamless instruction in about five minutes that has blissfully kept him occupied for hours. Speaking as a former veteran educator myself, I know this has not been easy. Like many of us, teachers now working remotely have children of their own at home who need access to computers and homeschooling. Many have small children who they need to keep alive while answering emails. Some may not have the strongest technological skills, and remote learning may be a challenge.

I’m certain many are validating something they already knew- that being a teacher is in no way a bonus when teaching your own progeny.

As I scroll Facebook for something to do I’ve seen numerous posts bemoaning the situation we’re all in. They range from hoping to expel their current students, to throwing schedules out the window, to my personal favorite, “now you know the teachers were right about your kid.”

So it is my great hope that something good will come out of this, namely that parents who are not educators will have a greater understanding of the complexities and sometimes arduous nature of this job. I’ve had two friends ask me “how did you do this for twelve years?” These are friends who are struggling just to get their kids out of their beds, not to mention monitoring them to see if they’re actually doing their work (yes, there IS a PE curriculum!).

I want to personally thank Mrs. Wnuk for her incredibly encouraging comments to all “her kids,” (I’ve shared them all with Zach and even got the hint of a smile, both sides of his mouth!). They mean a lot and I’m sure many teachers in the Brick Public Schools are doing the same. I know this because this town cares about its kids, its teachers work incredibly hard, and we are lucky to have them.

So to all my friends and parents out there thrown into something it takes years to perfect while trying to forage for food and keep your day jobs, hang in there. I am confident many bumpy roads will smooth out soon, and if not, there’s always Netflix. I wish you all the best, and thank you again to Veterans Memorial!

 

Follow me on Facebook at Autism Mommy-Therapist

March 9, 2020

Hope and Chicken Tikka Masala

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 12:58 pm by autismmommytherapist

Last week I had the good fortune to meet a dear friend for lunch (Indian food, my fave!) in a town halfway for both of us, which means a good forty-five minute drive for each. I am compulsively early to things (my mom is too, I come by it honestly), so of course after running errands I managed to get to the strip mall twenty minutes early. As I drove in I happened to look up to my left at the first building in the lineup (hoping I could compensate my compulsion with some shopping) and saw in big letters the sign “Disability Allies,” and knew I’d found a place to kill some time with a purpose.

I knew with a little luck I’d get my first tour of a day program for autistic adults.

Justin is just about to turn seventeen, so even though I’m a planner extraordinaire I will not start formally looking for about another three years. I thought to myself however that I could go in and try to talk to someone and most likely get turned away, or perhaps I could charm my way into an impromptu tour.

Lucky for me, the latter transpired.

I had a fifteen minute conversation with the director, Audrey, who told me all about her adult child who attended this day program (a plus in my book), how they were relatively new, and her dreams for the place. She could not have been lovelier, taking time out of her day for a fellow special needs parent who was most likely not going to send her child here due to distance, but wanted to “host” her anyway.

We had a lovely chat, and then I got the tour.

I really wasn’t sure what to expect as I’d never visited a day program before. Quite honestly I’ve been told by friends whose kids are in their twenties that my expectations should center around keeping him “happy and safe,” which has never exactly seemed like a rousing endorsement to me. I’ve kept those two goals in mind (including “clean”) and hoped frankly I wouldn’t walk out of these centers depressed that there is nothing out there which will ever come close to his amazing autism school where he’s been for ten years.

Honestly, nothing will ever come close to his amazing autism school.

The truth is however a day program he must one day attend, and I am devoted to finding one that’s a good fit for him, where he gets out into the community frequently, has some fun, and yes, is happy and safe.

After my brief tour I will tell you I have a lot more hope that I can accomplish this goal.

We began in a large, organized and well-lit room where several instructors were working with the disabled adults on theater. We then progressed into a clean kitchen where several other adults were whipping up something delicious (if it wasn’t for the forthcoming Indian food I would have been jealous), an activity which they do several times per week. We finished the tour by ending up in a conference room where the adults were working on life skills such as creating budgets and goals for their future.

In each room, every client looked happy.

Do I think Justin would get anything out of a program like this? No, I don’t. I will be looking for something with daily outings, access to computers and DVDs, maybe even a heated pool if possible. I know my boy’s likes and dislikes and his ability level, and this program would never match them.

But still, on a whim I got to see a place that was clean, and where the participants were happy and safe. I got to meet a director impassioned to deliver excellent services to her charges, who was excited about all the things she hoped to bring to her program in the years to come.

In one day I got chicken tikka masala and hope.

A good day for all.

 

Follow me on Facebook at Autism Mommy-Therapist

 Like Thank Reply

February 25, 2020

The Big Picture

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:45 am by autismmommytherapist

In the past several weeks I’ve been talking to parents of young autistic kids, and it has brought back memories of many of the struggles and triumphs I had with both my children back in the day. There were some dark years back then, and some resounding triumphs too. I remember having an overwhelming sense of urgency to “get it right,” that a certain diet or classroom or instructional methodology would make the difference between whether or not he ever ate a vegetable, spoke, or lived an independent life.

I can tell you now with complete honesty that except for the vegetables, none of those things came to or will ever come to pass.

The truth is despite excellent teachers, therapists, and a teacher mom who worked non-stop with him for almost two years before he went to school because Early Intervention in Virginia for autistic kids was a joke, he will never achieve the latter two goals. I can’t say I’m at peace with this. I will particularly never be reconciled with his lack of future independence due to the safety issues, but I will say I have accepted it.

Really, what else is there to do when you’ve tried everything.

Talking with parents about their young kids and their hopes and dreams for them often makes me take a look at the choices my husband and I made with both boys. There are definitely some things I would do differently.

But there is one thing I would not. And that is knowing when to let go.

Perhaps there are parents out there able to look at their toddlers and be at peace with the fact they’ll never have functional language, but I was not one of those parents. I read everything out there, and at the time a few studies showed that sign language seemed to encourage more verbal speech than other methods of communication. When we finally moved to New Jersey and had excellent Early Intervention services I remember being so adamant that the team sign with him for this reason. I did not take into account his lack of imitation skills, or his fine motor issues. We went on in this vein for months, with little or no progress.

And finally a member of the team pointed these deficits out to me, recommended the PECS system which could eventually lead to an iPad for communicating, and let me think about it.

Although it felt a little bit like I was giving up on speech, I had to look at the big picture- that my son needed a method of communicating or he would be deeply frustrated his entire life. Just because he was bright and I wanted him to talk didn’t mean he ever would. I had to do what was best for him with the skills he had.

Eventually he moved onto the iPad and Proloquo2go, and can communicate his needs beautifully. He had some words before he developed tic disorder, but they are mostly gone now. Thankfully due to his ability to read and type simple words he still has a means to tell the world what he wants.

If I had never listened to that therapist there might have been a different story.

Keeping the big picture in mind is crucial when you’re making the huge, and sometimes small, decisions about your child’s life. When Justin was younger we really wanted him in a public school setting where he’d have opportunities to engage with neurotypical peers. It eventually became obvious that the public school system would not be able to meet his needs, and his father and I had to consider private autism schools where there’d probably be no chance of immersion in the neurotypical world. We made the choice to move him, and it was without question the best decision we’ve ever made for him.

But once again I had to let a dream go and look at what would be best for him in the longterm, and I’m so glad I did.

Through many bumps in the road Justin is thriving now. I know this is in part to his father and I always keeping the big picture in mind when choices are presented to us. It’s so important to look at the skills your child has as well as the deficits and try to match those skills with a particular school program or a method of therapy. Keeping an open mind is key, and remembering it’s about where they’ll best succeed, not how you want them to succeed.

And as adulthood approaches I will try to take my own advice to heart.

 

Follow me on Facebook at Autism Mommy-Therapist

 Like Thank Reply

February 10, 2020

Self-Help

Posted in Life's Little Moments, My Take on Autism tagged , , at 1:59 pm by autismmommytherapist

He gently pushes my hand away but I remain firm, guiding his hand onto the top of his shorts. It’s a dance we do every morning now, he sometimes resisting putting on his clothes, sometimes acquiescing. I am determined he’ll regain the skills he lost when he developed tic disorder, adamant that he relearn so much of what was taken from him.

It’s my new mission.

Two years ago this fall Justin developed these horrible body movements; sometimes he was frozen for forty-five minutes at a time. We took him to many different specialists, and he received diagnoses ranging from catatonia to his final diagnosis of tic disorder. We saw a lot of regression during this time period- his speech suffered, he lost many self-help skills, and his daily joy seemed to have vanished.

With time, and the right medication, at least the last one has resurfaced.

Justin didn’t truly have spontaneous speech, but he was able to say words somewhat intelligibly on demand, and now he’s really reduced to two words, “help” and “juice.” We are however so happy to see his joy in life return, and with it the affectionate nature that makes him so special. What has not returned are his self-help skills. He was much better at dressing, brushing his teeth, and several other skills before the tic disorder struck, and I’m hoping to get him back to where he was, or somewhere close.

I’m also pushing chores. Why not put him to work?

At Justin’s school they are diligent about teaching him chores. In one of their buildings they have a mock apartment and a kitchen, and Justin has been able to learn chores such as folding towels, putting away silverware, setting the table, etc. We are trying to introduce those activities at home, and so far have been somewhat successful (he likes some chores better than others, but so do I). Some of the students at his school will parley these skills into some sort of job. At this point I don’t see a job in Justin’s future as it is much harder to get him to focus now, but it’s still important he learn these things so he can be a help at home.

And equally importantly, he seems to take pride in what he does, as sometimes we see the glimmer of a smile when he’s done.

I made myself a promise years ago with Justin that I would never try to push him to do things just for the sake of doing them. Truly my goal for Justin is that he be as happy as he can possibly be, and contribute what he can. I’ve seen progress at home these last few weeks- am gratified he’s not resisting, these changes, and is instead embracing them.

Despite having autism, he’s actually pretty good at change.

So we’ll keep at it with these skills, hope to keep achieving more and more until he’s close to independent.

And no matter how challenging it is, I will never give up.

 

Follow me on Facebook at Autism Mommy-Therapist

January 27, 2020

The Year it Begins

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:31 am by autismmommytherapist

This is the year it all begins.

My eldest son Justin, who is severely autistic and non-verbal, is turning seventeen in a few months. This is the year that the inevitable slide to adulthood really ramps up.

The year Jeff and I spend thousands to be his guardian when he turns eighteen.

The year we apply for Medicaid and SSI, which will be welcome benefits.

The year my boy is technically in his last twelve months of childhood.

I admit that sometimes I find milestone years to be hard. If his school went by traditional years he would be a junior in high school, and if he were typical he’d be gearing up to drive, preparing for the SATs, looking at colleges on road trips. I’ve watched my friends go through this right of passage for years, and know that instead we will be spending our time and money petitioning a court to grant us legal rights so when he hits adulthood we can continue to make medical decisions about him.

Sometimes I am okay with this. Sometimes I am really, really sad.

It’s funny, but the realization of the vast differences between his life and that of many of my friends’ kids doesn’t hit me when you think it might. I am generally fine on his actual birthday or at his family party, mostly just grateful we have family to celebrate with him, and thankful he usually enjoys opening his presents and scarfing down a chocolate cupcake.

No, the differences hit me when I see a “driving school car” tooling around the neighborhood with a cautious teen at the wheel. It hits me when I see bumper stickers of colleges on the back of cars at a stoplight. I notice it when I pass the Huntington prep school advertising SAT prep on my way to grab a hot chocolate at Barnes and Noble.

I still have my priorities.

And the thing is, having these thoughts is okay.

There are some who might say they are not okay, that I’m not accepting of my son as he is, not reveling in his personal accomplishments no matter how much they diverge from the mainstream. This couldn’t be farther from the truth. When he recently relearned how to take his shirt off before a shower, I literally did a dance (no, it will not be on YouTube). When he started using a fork about seventy-five per cent of the time I rejoiced, because it was a skill he once had before the tic disorder came calling, and it’s a skill he should have for his lifetime. I am as proud of his accomplishments, no matter how small they might seem to the world, as I am of his little brother’s more typically achieved milestones.

The truth is I also believe Justin is unaware that he will not drive or attend college. He is passionate about watching his DVDs on his player, committed to driving around Monmouth County on the computer using the Hertz Rent-a-Car site, and absolutely devoted to Philadelphia Pretzels. I am confident he thinks his life is good, that he loves his school, loves to go out to most places, and also craves being home.

This knowledge helps my heart immeasurably.

But I know there will always be a wistful component as to what might have been, and a passionate longing for my son to have been gifted with the ability for independence, to be able to take care of his needs when I’m dead. I know I will never let that one go as long as he takes breath.

And I’m okay with that permanent longing too.

In a few months I will gear up to take official lifetime responsibility for him, which is of course a mere formality. I will hopefully continue to watch him reacquire skills, and find joy in his routines. His father and I will continue to try to provide a happy and safe life for him, which in the end is all we want for him with all our hearts.

And no matter what we feel we will move forward, because that’s what we do.

I hope all of you can too.

 

Follow me on Facebook at Autism Mommy-Therapist

January 13, 2020

Get Out

Posted in Life's Little Moments, My Take on Autism tagged , , at 1:51 pm by autismmommytherapist

I pull up to a red light with my car rocking back and forth from the force of my eldest son’s slamming himself into his car seat in time to my eighties jam, and I notice the driver next to me staring toward the back of my car with a smile on his face. I am smiling too, because I know my severely autistic son is thrilled to be going to the pumpkin patch, an event we’ve been taking him to his whole life. My youngest decided he was “too old” for this now, but I know my eldest loves traditions, and I am happy I’m able to keep this one for him.

I’m happy we have traditions. Hell, I’m happy we can go out.

Back in the day when we lived in Virginia just the mere act of putting my son in his car seat was incredibly stressful, for both of us. The period of time when he rode backwards was the worst- some of his angst was alleviated when he could face forwards. There were still a myriad of issues to face when he was a baby and toddler, namely that he hated crowds, lights, and noise. There were often times however when we’d get to our destination and he’d be thrilled to be out of his house, and in those early days I clung to that joy, made it a goal to desensitize him to the world so he could enjoy all of it.

I was determined we would not remain hostages in our own home.

Slowly, over the years, things got better, but it was a tough road at first. I tried to work up to outings with him, which took time and patience but were well worth the effort. To get him accustomed to the mall I first just drove to the parking lot; on subsequent trips we’d take a short walk in the stroller, eventually made it through an elevator ride (particularly challenging), then finally we were able to spend some time motoring through the stores like we were old pros. He grew excited to go there, and frankly I needed those outings out of our house in winter just as much as he did.

I used this same desensitizing approach when we moved to New Jersey and started going to Great Adventure, the boardwalks, and the beach. I won’t say these trips were without mishap. I remember one time the stroller broke and I had to convince my autistic toddler to let me carry him while trying to drag the dead carcass of his chariot back to our car, and that change in routine was not to his liking. There were meltdowns in line for the rides at various venues, and my body to this day bears some of the tiny scars from his bitemarks of frustration.

But I will tell you this now, without hesitation, it was all worth it, because we have a life with our son.

Trust me, I haven’t done all of this on my own. Justin’s school has a program where a BCBA will come out to your home for an eight week session and help you in-house or in the community, and I have used that option many times, particularly when my boy seemed about to give up the beach and the boardwalk, two attractions I was loathe to relinquish because it’s good for him to get out. Just having an extra set of hands on an outing has been a huge help, and I’ve availed myself of that option whenever possible.

There are times however when we have to brave it together just the two of us, and sometimes to not-so-fun destinations like appointments. For the last few years I can say that almost all of our outings have been successful, and that is because of the help we had, but even more it’s because we stuck our trips even when it was difficult.

I can’t stress this enough. Put in the work when your child is young no matter how grueling, and hopefully it will pay off down the road.

Now Justin is even able to handle the two hour plane ride to Disney (which we will be undertaking again soon, so excited!), and last year greeted our newest destination, Universal Studios, with enthusiasm. I know, however, he never would have been able to deal with all the change if I hadn’t gotten him out of his comfort zone when he was little.

I am so grateful for that little voice in my head that told me not to give up, because it completely paid off.

And I deeply wish the same outcome for all of you who are struggling now.

 

Follow me on Facebook at Autism Mommy-Therapist

Previous page · Next page