June 24, 2020

Father’s Day

Posted in AMT's Faves, Fun Stuff, Life's Little Moments tagged , , , at 10:50 am by autismmommytherapist

 

Dear Jeff,

It is seventeen years ago last month that you became a Dad. And while up until then I’d done most of the work, that dynamic changed the moment your first son came into the world.

My friends had told me to give you a couple of jobs (middle of the night feeding being a favorite), just so you had “ownership” of something related to our boy.

It wasn’t necessary. You’ve been there for him, and for me, every step of the way.

I know things haven’t turned out exactly how we planned. Somewhere in a parallel universe we still live in Washington, DC, we both work, and our two kids, two years apart, are a teen and a tween respectively and driving us crazy with their backtalk (okay, that still applies to one of our kids). Nowhere in “What to Expect When You’re Expecting” was there anything about sleepless nights for a year, reflux that just wouldn’t quit, a general extreme crankiness that defied all logic (that often extended to us too), and a penchant for spinning things that also defied logic (and often gravity).

I know there have been days with Justin that have just completely broken your heart.

And yet, you never give up trying to give our son, and our family, the best life possible.

When our boy was diagnosed at the tender age of seventeen months and we found out Early Intervention in Virginia is a travesty at best, you figured out a way for me to quit my job and do dozens of hours of therapy with him until he could start school. When we realized the school program wouldn’t be right for him (and I began to burn out on ABA) you figured out a way for us to move to Jersey, a chance to give our boy some amazing therapists, a great school program, and proximity to relatives and friends who could help.

I truly don’t know how we would have made it those first few years without that bold move.

We’ve had so many decisions to make over the years, some of them soul-suckingly hard. Where to live. What school placement to put him in. What ancillary therapies to provide him. What medications to try, and try again. Which doctors to take him to for first, second and third opinions. Whether or not to have another child (we did, and happy to say, it worked out). Hell, just for dealing with our insurance companies you deserve a medal.

You’ve been there to help me with all of them.

You have listened when I poured my heart out to you about my quandaries around inclusion, my desire to give him a hobby other than technology, my drive to take him out into the community even when it wasn’t pleasant. You have held my hand when I’ve had to let many of our dreams for Justin go, and helped me rally to remember all the good things he has in his limited, but generally happy life.

You have been my sounding board, my sanity, my friend.

Perhaps most importantly, you learned how to be a part of Justin’s world, meeting him on his terms, which has forged such a close bond between the two of you. He loves when you echo his favorite lines from “Up,” adores when you scratch his face with your five o’clock shadow, treasures those moments of “snuggle time” on the couch.

He loves you, truly and deeply, with a connection forged in your relentless pursuit to bond with him.

He is one lucky boy.

I am one lucky wife.

From Zach, Justin and myself, Happy Father’s Day my love.

 

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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!

 

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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.

 

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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.

 

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November 25, 2019

Coming Home

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 2:28 pm by autismmommytherapist

He steps off the bus and rushes to the sidewalk, making one of his trademark vocal stims as he goes. I am behind him (he is really fast!) and catch up quickly, have to halt as he stops dead in his tracks. “What is it Justin?” I ask, and he turns, looks at me, really looks at me, and plants a big kiss on my mouth. Mission accomplished he turns away, marches quickly to the front door and waits for me to afford him access to our home.

I am thrilled. After the last two years, I will never ever take signs of affection for granted again.

In the fall of 2017 Justin developed tic disorder, which for him would be called Tourette’s if he spoke. It took one agonizing year, eight doctors, and as many diagnoses, to figure out what he had, and more importantly, to figure out how to treat it. I was so grateful someone finally figured it out, and over the course of the past year we have seen many of the skills he lost start to return.

His speech has suffered drastically, specifically his pronunciation, but since he primarily uses an iPad for communication I’ve been able to make my peace with this, as he truly only had a few words to begin with (juice remains, his favorite!). The aggression which particularly reared its ugly head two summers ago has all but disappeared, and he transitioned beautifully to a new teacher this summer and has for the most part had stellar behavior. The terrible body movements are manageable, do not seem to distress him anymore, and are few and far between compared to what he was doing in 2017.

Truly, the one deficit that remained was his lack of affection.

Trust me, I am grateful for the return of so many of these things, am even attempting to get him back on track with chores and self-help skills as best I can. I know we’re lucky we figured this out. But I will tell you I greatly missed the hugs and kisses, as reciprocal affection was a staple of our relationship since the moment he was born. Justin is not one to hug most people in his life- he pretty much reserves that right for his parents, and that’s about it. I will tell you I missed those embraces, I missed them greatly.

Now, slowly, affection is making a comeback too.

And I’m so grateful, because I love him and we share this common need for hugs, and because he is wonderful but life with him is often difficult, stretches me to my limits and beyond. The fact that he’s spontaneously planting a kiss on me once in a while shows how much he’s healed, demonstrates the core of who my son is- a loving soul.

I knew he was still in there. And he’s coming home.

 

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November 15, 2019

Disney Fun

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 12:16 pm by autismmommytherapist

Last week I had the pleasure of spending a few days at Disney with my family during New Jersey’s NJEA break. We had perfect weather (ponchos never used), were able to get on many rides each day, and most importantly, my severely autistic sixteen-year-old slept well and was an angel on the plane both ways.

Trust me, both of those things could have been deal breakers for our trip.

This was our fourth trip to Disney in the last six years, and each time we’ve gotten it down better and had more fun. I’d like to take a moment to say this. I’m sure some parents of severely autistic children are rolling their eyes at even the thought of taking their child to Disney. Believe me, I was once in that group, and didn’t even attempt it until Justin was ten. Our first trip he was ill and the entire week was a bit dicey, but since then he seems excited about going, even whips out his Disney DVDs weeks prior to leaving. If you even think you can pull it off, it’s worth giving it a shot.

I’m sure some of you are wondering how we manage the lines when we’re down there, especially if you’re aware that the disability pass changed years ago. It used to be that you’d enter Guest Services either inside or outside of the park, ask for the pass, and would be given the pass with the understanding that you could walk up to any ride and enter the fast pass lane at that attraction. Unfortunately people were abusing the system, and Disney had to change the rules. Now one person in your party needs to walk up to the ride (it does not have to be the person with the disability) and get a return time for the attraction. When you return at the appropriate time you are able to go into the fast pass lane.

You can only add on a new disability pass ride after you’ve used your pass on the ride you’ve selected, and there is no expiration time like there is with the fast passes. One tip I’d like to pass on is that when you get the pass (it’s good your entire trip, you don’t need to go back) you can ask them to book your first disability pass ride, which saves a bit of running around.

As a family we developed a system where my husband would run ahead to a new ride as soon as we rode the disability ride and get a new time, then meet us back at our next fast pass ride. Since unlike me he has a fabulous sense of direction he was able to meet back up with us pretty quickly. Both days we spent at Magic Kingdom we were able to ride ten to twelve rides per day (it was not a highly trafficked week) and that includes a lunch break each day. It worked out beautifully for us, and my husband got lots of exercise to boot.

Always a silver lining if you look hard enough.

I am really proud that my son can handle so much change- a plane ride, a new bed to sleep in, tons of people (even on a traditionally not-so-busy week as the first week in November). I want anyone reading this to know that we have had many challenges with Justin in the past. There have been sleeping issues, aggression issues, eating issues, and toileting issues which combined kept us from taking him anywhere other than a beach vacation for a decade. I did try and prepare him before our first trip by showing him old Disney videos and telling him we were going there, and he seemed to get it.

Despite being ill he was really excited our very first day there, and for subsequent trips I made a scrapbook so I could prepare him each time we were going again. If possible I would recommend having your child sleep at another person’s house prior to the trip just to “practice,” and if they have any dietary considerations, research the restaurant’s menus before you go. There are supposed to be gluten-free options at many of the dining establishments, and we never had a problem ordering food for him. Another recommendation is eat an early lunch or dinner, the crowds will be less and you won’t waste so much time eating.

After all, Disney is all about the rides, right?

I consider Disney a “working vacation,” but with some planning (we create a potential ride itinerary in advance) Disney is possible even with a severely autistic child. I will mention that I read recently that an autistic person is suing Disney over the new disability pass changes, and it will be interesting to see what happens with that. I personally know some families who have not taken their kids back there since the changes as they don’t believe they’ll be able to handle not automatically walking onto the ride, so I’m hopeful for them that at least some disable people will have access to the old disability pass.

It is supposed to be the most magical place on earth after all.

 

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October 28, 2019

A Good Place

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 1:13 pm by autismmommytherapist

This past week I had Justin’s fourteenth (!) IEP meeting at his wonderful autism school, and as I looked around the table at the amazing practitioners who help my son five days a week it hit me that I would only come to this table four more times. I quickly pushed that thought away (after all, what autism parent really wants to contemplate graduation?) and focused on what all his teachers were saying about my boy.

It turns out, after a year or two fraught with trouble, Justin is doing really well.

Two years ago this fall Justin began displaying body movements that would ultimately be diagnosed as tic disorder, an event that would completely derail his life and our family’s as we tried desperately to help him. He was very challenging during that year, both in school and out. Of course his teachers handled it all beautifully, and eventually with a medication change we were able to get him out of the woods. Although he’s not where he once was, he is much improved, enjoying his life and able to go through his routine.

A year later, I can say he’s still in a good place.

And as I sat at the table and listened to what my boy was doing in the classroom, in OT, and in speech, it hit me.

All is good. I can exhale now.

I’ve written before that autism, at least in my house, is a cyclical event. Sometimes the wheel spins in our favor, and my son is happy, engaged, and productive in his life.

Sometimes, he is not. And that affects us all.

One thing I have learned over the years is that it is so important to grab onto those good times and truly appreciate them, because it is a guarantee that more difficult times will return down the road. I am really making a conscious effort to savor these moments that have luckily continued for an entire year, to revel in his happiness.

Because at the end of the day, my most important goal in life is to see both of my boys safe, happy, and productive.

There will be challenges in our future, of that I am certain. In the not too distant future we will be tackling guardianship, Medicaid/SSI, and hopefully finding a good day program for Justin where he will not only be safe, but enjoy himself. I know there will be struggles ahead.

But for now, all is good, we are at peace.

And I take it gladly.

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October 2, 2019

Make New Friends

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 10:51 am by autismmommytherapist

This past week I had Justin’s fourteenth (!) IEP meeting at his wonderful autism school, and as I looked around the table at the amazing practitioners who help my son five days a week it hit me that I would only come to this table four more times. I quickly pushed that thought away (after all, what autism parent really wants to contemplate graduation?) and focused on what all his teachers were saying about my boy.

It turns out, after a year or two fraught with trouble, Justin is doing really well.

Two years ago this fall Justin began displaying body movements that would ultimately be diagnosed as tic disorder, an event that would completely derail his life and his family’s as we tried desperately to help him. He was very challenging during that year, both in school and out. Of course his teachers handled it all beautifully, and eventually with a medication change we were able to get him out of the woods. Although he’s not where he once was, he is much improved, enjoying his life and able to go through his routine.

A year later, I can say he’s still in a good place.

And as I sat at the table and listened to what my boy was doing in the classroom, in OT, and in speech, it hit me.

All is good. I can exhale now.

I’ve written before that autism, at least in my house, is a cyclical event. Sometimes the wheel spins in our favor, and my son is happy, engaged, and productive in his life.

Sometimes, he is not. And that affects us all.

One thing I have learned over the years is that it is so important to grab onto those good times and truly appreciate them, because it is a guarantee that more difficult times will return down the road. I am really making a conscious effort to savor these moments that have luckily continued for an entire year, to revel in his happiness.

Because at the end of the day, my most important goal in life is to see both of my boys safe, happy, and productive.

There will be challenges in our future, of that I am certain. In the not too distant future we will be tackling guardianship, Medicaid/SSI, and hopefully finding a good day program for Justin where he will not only be safe, but enjoy himself. I know there will be struggles ahead.

But for now, all is good, we are at peace.

And I take it gladly.

 

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September 17, 2019

Respite

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 1:16 pm by autismmommytherapist

I almost missed the email regarding overnight respite as I was rushing around on a busy Saturday. It was from Justin’s new camp, a haven for developmentally disabled adults and children not too far from where we live. It is both a day and overnight camp, with specific weekends and weeks allocated throughout the year for autistic individuals. Justin has successfully attended day camp there this summer, with another stint coming up during his second summer school hiatus coming up at the end of August.

My heart soared as I read the email, thinking of the potential opportunity for Justin to someday sleep over at the camp. I don’t know if he’ll be able to handle it, but I know if he does well his last three days this summer that we’ll be looking into a weekend this school year, a decision we will make as much for us as for him.

My boy needs to learn to sleep somewhere other than his own bed.

Back in the day when he was little Justin slept over my mom’s house, but at a certain point he stopped wanting to do that, and we stopped trying. He does sleep in a different bed when we go to Disney every other year, but that is with me in the bed next to him, so in my mind it doesn’t really count. The truth is someday he’ll be sleeping in a home that isn’t his parents’, and I really feel we’ll be doing him a disservice if we don’t try to give him other opportunities to get used to sleeping away from home.

I could tell you that I think he’ll enjoy it, but that would be a lie.

I’ve always pushed Justin to try new things, even when he initially seemed like he hated the activity. Call it mother’s intuition, but when he was little I just knew that eventually he would like the boardwalk, Great Adventure, and our backyard pool, and I kept trying to help him acclimate to those activities. Eventually, by pairing them with food (who doesn’t like that as a reinforcer!) and gradually lengthening our stays at these locations, Justin got to the point where he loved going out, would unceremoniously drop his shoes at my feet and look at me as if to say “Where are we going today Mom?”

I know that he’s grown to enjoy these outings both due to the lack of behaviors when we go out, and also to his smiles when we reach our destination. He’s always ready to go home however, back to the sanctuary of his room, his DVD player, and his forays on YouTube. I know in my heart if we drop him off at camp with a suitcase and his pillow he is going to want to go home at the end of the day, but I think it’s time we pushed him past his comfort zone and gave it a try.

Believe me, it’s pushing me past my comfort zone as well.

Justin is sixteen now, just five years away from the conclusion of his school entitlement ending and impending adulthood. As much as a part of me wants to keep him safely cocooned here forever to protect him, I know that’s ultimately not his life trajectory. He won’t like sleeping away from us, but he needs to practice doing it so it will be easier for him to transition out of our home someday to his new one.

It’s time for me to push him to do something he may not like in an effort to make his transition easier for him down the road.

So keep your fingers crossed both for him and for me (I don’t know who will be more nervous that weekend), because it’s time to stretch my boy’s limits and see if he can fly.

And let’s see if his mom can too.

 

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September 3, 2019

Help Yourself

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 6:42 am by autismmommytherapist

Two years ago this fall my husband and I watched in horror as our non-verbal sixteen-year-old son with severe autism and OCD fell prey to a mysterious malady that would eventually take eight doctors, as many diagnoses, and almost a year to figure out. To say Justin suffered would be an understatement; frankly the rest of his family suffered too just by witnessing his discomfort.

After a number of false diagnoses he was eventually diagnosed with tic disorder, and would have had a full Tourette’s diagnosis if he could speak. For treatment, we simply tripled a medication he was already taking. Although within a few weeks his symptoms, freezing up and being rendered immobile for up to an hour at a time, were dissipated, they’ve never fully receded, and never will. Finally last fall we saw some relief for him. No longer was it a struggle to get him out of bed, get him on the toilet, dress him, get him to eat, get him into the car, etc.

No longer was every single second with him excruciatingly difficult.

My husband and I were immensely relieved to see his improvement, and I’m grateful every day he’s doing better, that we have been able to resume most of his activities with him, and that he’s once again compliant in school.

But the truth is, things weren’t really over in September. Justin’s limited speech declined drastically. His self-help skills, so hard-won, deteriorated.

And worst of all to me, his joy seemed to have disappeared.

Over time, the light has begun to come back to my boy. He is once more affectionate, cracking up more and more over the sounds emanating from a treasured toy or a favorite DVD. He still needs a firm hand to get him to move around sometimes, but he generally is compliant, and the aggression that had resurfaced has mostly retreated. Given that he’s also a teenager and just might not show as much joy as he previously had (my tween is a perfect example) I think we’re on the right track with him, and this is his new normal.

I don’t like it. But I have to accept it.

One thing I will not let go of however is his self-help skills. For Justin’s entire life myself, his father, his therapists and his teachers have worked tirelessly to give him the tools of semi-independence, tools he will need to be successful in an after-21 program one day, and ultimately in a residential program. Over the course of many months we mastered potty training, eating more than one thing, sleeping (that one took years), and going out into the community. We are thankfully back on track with all of those skills, but Justin’s self-help activities have fallen by the wayside, and it’s time for me to man up, and get him back on track.

Fortunately I have help, as his school sends out their BCBAs (Board Certified Behavior Analysts) to do house calls (!). I am hopeful he will once again be dressing himself, brushing his teeth, showering somewhat independently, and my favorite, using a fork.

That last one has remained elusive; I’m hopeful the third time’s the charm.

The BCBA will be coming out to us in the fall, and I think I finally have the mental and physical energy to address these issues. To be perfectly honest with all of you, the tic disorder, and the havoc it wreaked on all of us for the better part of a year, sucked the life out of me. I had anticipated something might strike as he entered his teenage years, but I had no idea how difficult things would be, that this latest disorder would derail our family for a time.

The truth is, I needed time to recharge before I geared up for the self-help fight, and I’m glad for once I didn’t barrel through and take this on immediately. I’ve had to remind myself that he is years away from graduating from his school, years away from when his independence, or what he can acquire of independence, is of paramount importance. We have time.

This will take time.

And it’s so important as we address these hurdles that I have patience, that I refuse to mourn what we have lost and instead focus on what we will gain.

Wish us luck.

 

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