November 28, 2018

Go with Your Gut

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 9:42 am by autismmommytherapist

It all started so slowly, so insidiously, I barely noticed.

In late October of 2017, there was the repetitive movement of a slight bending of the head and neck of Justin, my severely autistic teenager. This followed with a twitch of the mouth here and there. Neither were a constant, but both occurred enough that I made a mental note to tell his neurologist when we returned from Disney in early November.

Disney must be magic because I witnessed nary a twitch the entire five days we were there. I remember thinking on the plane home this must be one of those “autism things,” events that he usually cycles through and which eventually stop.

Within seconds of entering our home he is bent over at the waist, eyes closed, moving up and down, sitting on the floor, rising. He does this for thirty minutes straight. Something tells me the magic of Disney has worn off, and we are in trouble.

Thus began a year-long odyssey to diagnose and treat my son.

I notice that he is now doing some eye rolling when he’s in these strange postures, and when I contact our neurologist I mention my concern about seizures. We are able to schedule an EEG for ten days later, where the activity is captured, and seizures are ruled out. Our neurologist then recommends an MRI which will require sedation because we could never keep Justin still for that long, an appointment which requires a two month wait and will hopefully rule out tumor. We take him, he is a trooper. The MRI is fine.

Justin is not. The movements are getting worse and worse. At times he is engaged in them for ten, twenty, thirty minutes at a time. He has them at school, at home, in the community. My once mostly compliant child’s movements make it a struggle to get him out of bed, on the bus, to the dinner table, out of the bath tub. My previously joyous child is devoid of delight, lacking in the smiles and laughter that were his trademark.

Despite how difficult his behavior has become, it is the latter issue that breaks my heart.

My husband and I know the value of garnering second, third, and even fourth opinions after fifteen years of doing the autism dance with both of our boys. Justin goes to CHOP to see a developmental pediatrician annually just to keep him in their system. That December we end up seeing doctors who are not our “regulars,” and they suggest he might have mitochondrial disorder, and recommend we see a physician within their Mitochondrial Disorder Program.

The following month, we do. Our doctor states unequivocally he does not have the disorder, but he might have catatonia.

My heart literally skips a beat.

I don’t know much about autism-related catatonia, but what I do know is not promising. Of course my husband and I do our Google research, and the prognosis for this disorder is not good. If it becomes malignant catatonia there is a chance he could die. The treatment is benzos, and in difficult cases, electric shock therapy.

We are sickened, and distraught.

At about this time our neurologist contacts one of his colleagues who is a movement disorder specialist. He sends him videos of Justin and comes back with a possible diagnosis of tardive movement disorder, a result of a medication we’d put him on years ago for aggression. We don’t rule it out, but what’s he’s doing doesn’t look like videos we’ve seen of the disorder, and we feel we want another opinion. I contact Kennedy Krieger (where ironically Justin received his actual autism diagnosis thirteen years earlier), and am rewarded with an email from a psychiatrist who specializes in catatonia. She won’t take him on as a patient but will see him for a one-time consult. While we wait for the appointment we put him on medication to help him, and for two weeks he seems to turn a corner.

It works for a while, until it doesn’t anymore.

We meet with the specialist at Kennedy Krieger, who sees him do the movements and pronounces it slam-dunk catatonia. Jeff and I are somewhat relieved to at least have a diagnosis, but sobered by the implications. I am always the “big picture” one in the relationship, and all I could think was, what if this gets worse? Who will help him when he’s seventy?

He was doing so well even with severe autism and OCD, why this too?

We monitor Justin closely, and he doesn’t get worse, but he doesn’t get any better either. His neurologist consults with a colleague in Israel who after viewing his videos suggests drug-related dystonia, different than tardive dyskinesia but also in the movement disorder family. We wean him off the potentially offending drug, see a recurrence of the aggression it had quelled, see very little improvement off the medication.

I feel like we are missing something. None of the myriad diagnoses he’s had seem to completely fit. The movements completely disrupt his life. He has to stop the horseback riding lessons he’s loved since he was five. He is asked to leave a camp for the first time in his life. His personality has changed drastically. His father and I are overwhelmed.

I can’t even imagine what it feels like now to be my son.

One night my husband decides to do some more searching, and he finds a neurologist who specializes in movement disorders at UPenn. We miraculously get an appointment for three weeks later. We expect he will corroborate the diagnosis of either tardive or dystonia as we no longer believe he has catatonia, and are hoping for some other treatment alternatives and a fresh look. That day we have to battle Justin to get him out of the parking garage. I recall thinking I hope this visit is worth the fresh bruises on my husband’s arm.

It turns out, it is.

After a very thorough examination our movement disorder specialist lets us know that both from the videos and what he’s seen in his office he believes Justin does not have tardive or dystonia, but instead tics. He doesn’t qualify for a Tourette’s diagnosis as he doesn’t have the verbal piece, but he is confident in his diagnosis, and both outlines a treatment plan and a referral to a doctor at CHOP for a second opinion with a colleague he works closely with.

This is the first diagnosis he receives that feels like it fits.

We are to start by increasing a medication he is already taking, and within a week we see improvement that has been consistent now for three months. We follow through and make an appointment with our UPenn’s doctor’s referral at CHOP, and he corroborates the diagnosis, and says it is common in autistic patients with the onset of puberty. He agrees with us that he is doing well and does not recommend any changes medically from the medication we put him on in September.

It’s now been thirteen months since hell descended on our son. He is improved, but we still see the movements, mostly in his face, neck and arms. He is however infinitely better at school, at home, and when we take him out in the community. We’ve seen some of his joy return, although the smiles and laughter are somewhat fleeting. He seems more at peace with himself.

He wants me to hug him again.

I don’t know how this will all turn out- of course I can easily say this about autism in general, and that this is just one more added degree of difficulty. I will, however, say this. As a community, our parental gut instincts are invaluable. I believe we finally have the correct diagnosis for Justin, but had we stopped asking for opinions months earlier we would never have gotten to this point, and he might have received the wrong treatment which could have had lasting consequences. I learned a lot from this odyssey- if a diagnosis doesn’t feel right, keep asking questions. Don’t worry about hurting your child’s primary doctor’s feelings if you seek a second opinion- a good doctor will advocate you do that, as ours did. Finally, especially with non-verbal, severe autism, it can be extremely difficult to diagnose things as they come up since our children can’t self-advocate. We have to do our research. We have to be relentless.

We have to never give up.

 

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July 3, 2018

Dear Universe

Posted in My Take on Autism tagged , at 10:13 am by autismmommytherapist

Dear Universe,

 

Okay. You win.

Here’s the thing Universe. Whether you acknowledge it or not it’s time to cut this family a break. We have remained collectively upbeat this past twelve months despite some really nasty life changes I won’t go into here, plus the chaos of our house almost burning down and the four months of repairs that ensued.

We have been really, really mature.

I probably brought this on us by allowing myself to breathe a sigh of relief this fall when things were looking up. You see, I relaxed my vigilance with autism and its never-ending surprises, and that’s when catatonia came to call.

You got me universe. With the onset of puberty I was gearing up for seizures and renewed aggression. I’d never even heard of autism-related catatonia.

Again. You win.

But here’s the thing universe. This family has weathered Justin’s aggression, insomnia, refusal to eat, eating too much, extreme OCD, refusal to potty train, and probably a host of other issues my very tired brain has blocked out to survive. Each time, Jeff and I sucked it up and went at each issue with a many-pronged approach, employing behavioral techniques, using medicine when necessary and being vigilant in our efforts to help our boy. The truth is universe, it gets more difficult for us every time because we’re older, which doesn’t bode well for us since we’re looking at at least another decade of full-time care of our son, and probably much longer than that.

I guess what I’m saying is I’m reaching my “sucking it up limit.”

It’s been eight months since Justin’s symptoms started, and the irony of it all is we’ve consulted four different practitioners, and there have been five different diagnoses trotted out for him (yes, I said five). Of course, just to keep things fun, these five different diagnoses all have completely different treatments, so I anticipate if things don’t improve for Justin, trying everything out could take until he’s twenty-five.

Okay, maybe another year, but it will FEEL like he’s twenty-five.

It’s been a long eight months, universe. The thing is this thing he has, whatever it is, is a game changer. I’m not sure he won’t get kicked out of camp because of it. I worry no twenty-one plus program will take him with it. If his symptoms progress I worry about his residential care, because at some point dear universe, Jeff and I will need someone to take care of us, and I can tell you right now that someone won’t be our eldest boy.

In other words universe, this is a big freakin’ deal.

We’re making some changes with him medically, and I’ve been told both that the symptoms can go away or at least go into remission, so we do have hope. We’re doing every suggestion that’s been made to us (like we always do), so universe, I’m asking you to come to the table and do your part.

Help my son. It just can’t be that hard.

I hate whatever the hell it is that he has. When he’s in an episode, he is robbed of all joy in his life. When he’s not in an episode, he is the happiest, loveliest child ever.

Bring back that child.

I want him happy, healthy and whole. I want him to be able to enjoy the summer, this season that he loves so much.

I want to see him smile.

Pony it up universe.

I’m waiting.

 

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June 11, 2018

The Shift

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:30 am by autismmommytherapist

It’s June, time for another round of “endings.”

I know most people view December as “the big cahuna.” This is the time where New Years resolutions are made (and subsequently broken), and people look back on the year that has just passed and figure out what they can do to make the next year a better one. I have to admit the optimism I always have for the impending year usually outweighs my sadness at leaving the current one behind, the knowing that I’m twelve months closer to the “great beyond” no matter how much kale I consume.

I’ll tell you a secret. Kale won’t help my longevity. I don’t eat it very much.

The June endings are of course tempered by the knowledge of an imminent summer, and I am a summer girl. One of the many glories of being a teacher was having those summers off (now I work harder in the summer schlepping my kids everywhere than I do when I actually work during the school year), and I reveled in that time to recharge, kick back and relax. When I taught there was (usually) some sadness as I said goodbye to my students, particularly when I taught sixth grade and knew they would be scattering all over Fairfax County. I’ve never been really good at goodbyes, and some years I admit to some collective tears being shed amongst me and my students (okay, just the girls) at our impending separation. Still, I knew there would always be another year of connections to be made, and I knew “my kids” were moving on which was a good thing.

Did I mention also how much I love summer?

Zach and I have a big ending coming up next week as he moves on to middle school. Over the past few weeks I’ve chatted with other moms saying goodbye to Midstreams as their last child moves on, and we are all having a hard time with it (one mom and I decided we’d probably have to be escorted out of the school after graduation). Since I’m not the “transition queen” I will probably be a mess next Wednesday, with my husband offering me tissues and not completely getting what all the fuss is about (but honey, it’s about all the friends I made while volunteering too!), but I will get through it.

As I mentioned in my last post, it’s time to man up and be brave.

The truth is, however ambivalent I’ll be at leaving the Midstreams cocoon next week there are threads of joy woven throughout this sadness, my sense of loss tempered by the knowledge that my boy is growing up well, that for him every ending is just a new beginning. My youngest has done well at school, has friends, has participated in clubs and activities that held meaning for him. My fingers are crossed that his next seven years will entail more of the same, and I have every hope he’ll weather any hurdles, will continue to stretch himself both academically and socially. The world is literally that kid’s Jersey shore oyster.

And I can tell you all now I want exactly the same for my severely disabled son too.

My son Justin is fifteen years old, has severe autism, OCD, and just recently landed himself a diagnosis of autism-related catatonia, which quite honestly has been a game-changer for a family who thought (hah!) we had the disability thing somewhat under control. He is in a wonderful school placement, one I will literally do anything (yes I mean it) to keep him in for the next few years until he graduates at twenty-one. Hopefully his big ending won’t occur for the next six years, because truthfully his mama needs that much time to deal with it, and I’m hoping to have a plan in place for him that will somewhat echo the previous fourteen years (my nickname for his school is “Disney,” they’re just that good).

What happens after twenty-one you might ask? Well, I’ll tell you readers, that is literally the million dollar question.

Justin’s school actually has an after twenty-one program housed on their campus, set in a building Justin’s been going to for years to work out in and learn life skills. My boy loves his routines, and I know in my heart we have a greater chance of him making the transition from school to adult program if he is familiar with his surroundings. I’m envisioning the possibility he might try to “escape” to his old haunting grounds if he’s so lucky to be accepted, but in the end Justin is a rule follower, and I know he’ll eventually get that that part of his life is over, that a new chapter has begun. There are many factors that will go into deciding whether he goes there- what kind of budget I’ll get from the DDD, whether or not there are any openings, how Justin is behaving at that time in his life. Nothing in life is guaranteed, but I know without a doubt that he would love their program, that it is his best chance at having an adult life outside of our home, which I deeply wish for him.

And being totally honest, I wish it for me as well.

Years ago I made a mental shift regarding Justin. I stopped wanting the trappings of what I considered a “normal life” for him, and made the adjustment to wishing he’d simply lead the best life to suit his needs. I let go of wanting the things I expect will take place in Zachary’s life- college, a job (yes please!), his wedding (can’t wait I will be a nice MIL), and hopefully a lovely social network for my boy. Instead I focused on getting Justin what he actually needs and wants in his life, which are not any of the things his brother will want for himself. That shift, that realization that Justin could lead a happy life completely different from that of his sibling profoundly changed my outlook on his life.

It made Justin’s endings and beginnings seem as potentially bright as his brother’s.

I can’t wait to see what will enfold for both of them. I know until my dying breath I’ll be plotting and planning for Justin ( I once mentioned something about his “eighty years on earth” in an IEP meeting and was met with a few blank stares),and I hope I can craft as fulfilling a life for him as the life my youngest will undoubtedly craft for himself.

So here’s to endings, and the burgeoning possibilities they bring with them.

And here’s to new beginnings- may they be bright for all our children as well.

 

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May 29, 2018

One More Try

Posted in AMT's Faves, Fun Stuff, My Take on Autism tagged , , , , at 11:42 am by autismmommytherapist

Your “eeees” resound throughout the farm, and I smile to know how excited you are to show off your horseback riding prowess, how thrilled you are that your parents and brother and grandmas are here to watch you revel in your favorite pastime. I also smile because those “eeees” mean the catatonia is at bay, that what’s started off as a good morning may continue while you strut your stuff.

Today, my smile will be vindicated.

You are always so calm on a horse, have been so since you began therapeutic horseback riding at the tender age of five. You weren’t so thrilled about it at the start (you let us know in no uncertain terms that horses were the devil), but something inside me said to keep at this, and I’m so glad I did. You grew to love your weekly sessions, rocking back and forth with anticipation each week in the car, walking so quickly ahead of me to the barn I had to run to catch up with you.

Your joy was, and is, palpable.

Part of why I pushed you was because I was bound and determined to find something, some hobby or pastime that you would like other than your DVDs and driving around New Jersey on Rent-a-Car websites (while entertaining, it’s not exactly aerobic). Truth be told if I could host a horse in our backyard I would (hubbie, if you’re reading this, don’t freak out), but for now I have to settle for a once-a-week ride. I love the fact that you can do this for decades, can even get your equestrian fix after I’m gone (yes, I’m always thinking ahead).

Somehow, I will find a way for you to ride when you’re seventy-five. I’m just that much of a planner.

If some of you are thinking “no way, no how” could you ever get your son or daughter on a tall animal, perhaps you’re right. The first time we tried when Justin was in kindergarten he needed two people flanking him to keep him on the horse. He started off desperately trying to escape, and by the end of the twenty minute session he was calm and I even saw the ghost of a smile on his face. He certainly wasn’t as enamored of the saddle as he is now, but it was enough for me to see the burgeoning possibilities of an actual sport for my son, something he could do that would stretch him and get him out of the house.

Trust me, it wasn’t always easy to get him out of our home, but that’s another thing we’ve perservered in, and it’s opened up the world to him.

When Justin was little he was so much more difficult to deal with than he is now, even though he’s newly diagnosed with catatonia which brings its own challenges. His sensory issues were much more pronounced back in the day which I’m sure contributed to his angst, but somehow I knew if I started early getting him to go to places and doing activities these locations would become part of his routine, and eventually he would accept them. We pushed the beach, the boardwalks, Great Adventure and even Hurricane Harbor. We eventually even got brave and when he was ten we took him on a plane to Disney, where for a first trip away from home he did remarkably well. The truth is, I kept at it when he was young also because I could still physically remove him from any situation at the time, which at fifteen, is quite beyond me now.

Mommy’s tough, but not tough enough to budge a teenager.

Honestly, it doesn’t matter what the activity or outing is, and you may have to kiss a lot of frogs before you find your proverbial prince. I want you to know I am well aware this isn’t easy. I’ve had trips where I’ve returned with bitemarks all over my shoulders from having to remove my child from a situation. I’ve had bruises on my shins where I’ve been kicked repeatedly for trying to leave a place, been drenched in sweat as I’ve wondered if I was tough enough to get him in the car before someone called the police on me for abducting a child. Often our outings were baptism by fire, with me swearing to myself “never again.”

I’ll tell you a secret. There was always “just one more try.”

Justin has his limits as to where he’ll go, and more importantly, how long he’ll stay. The kid who we used to have to drag off the beach will now only make it an hour (and sometimes it’s work to get him there that long), but he always has a smile on his face when we’re done. I know we wouldn’t be able to have these expeditions if I hadn’t braved his meltdowns when he was little.

Not sure about a lot of things with autism, but of this one I’m certain.

Finally, warm weather is coming, and we’ve managed to slough off a tenacious winter during which it’s easy to stay inside. My advice to anyone starting out with an autistic child is to take errands and outings as seriously as the latest ABA therapy technique your child’s therapist has suggested to you. Start early; start young. Know that sometimes your efforts will be for naught, and your trip will absolutely suck. Regroup, ask for help if you can, and try again.

Never give up. Never give in.

Always give it one more try.

 

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May 23, 2018

In the Moment

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:41 am by autismmommytherapist

As you speedily unwrap and liberate the toy from its imprisoning box your smile bursts forth followed by a deep-throated, fifteen-year-old chuckle (your laugh slays me every time), and your face simply radiates joy. This toy’s predecessor went to “toy heaven” a few months ago after serving us well for thirteen years, had been one of your favorites on and off for over a decade. Your dad diligently found it on eBay which was a miracle, and clearly it was well worth his effort. You follow up this toy with two books you haven’t owned in years because you’ve destroyed the poor things too many times, but since it’s been a while we thought to give you another chance. You quickly turn to the back pages of each and light up Eric Carle’s firefly and let his crickets sing, and once again I revel in your giggle, your ability to live totally in the moment at hand.

Mommy could learn a lesson or two from you.

You are fifteen. You are not talking about driving (thank God!), or a new cell phone, or why your iPad is hopelessly out-of-date. You are definitely thinking about girls as evidenced by your frequent pointing to a pretty babysitter-of-yore in a photo album, a huge grin making it very clear you would like to see her again. You still love your Eric Carle books, Baby Einstein videos, and every once in a while when our guard is down we buy you an old Wiggles DVD that has been (intentionally) lost in the shuffle. You were joyous at your party, even more so the day after when opening your presents from your parents (I believe in stretching out birthdays as long as possible). You were, in those moments, profoundly happy.

Truth be told, I cling to these moments when the going gets tough, and I’m always greedy for more.

Sometimes, the beautiful boy who made me a mom is extremely difficult to deal with. My boy has severe autism, OCD, and lately a diagnosis of catatonia which honestly threw his parents for a loop (we knew puberty would bring something else to the table, we just didn’t think it would be that). We’ve been struggling lately with bedtime which may purely be a function of advancing age, or could be something else. Since the catatonia diagnosis we’ve had regression in several areas of development, which is disheartening to say the least. To tell the truth we’ve gotten used to the stimming and the OCD over the years- watching him disappear in a catatonia episode has been distressing to say the least. We are so grateful with the proper diagnosis he has improved, although I’m told this will never go away.

Kind of like autism. We’re familiar.

Storing up these moments of joy whenever possible has been a trick I’ve used over the years, one that has helped me cope immeasurably. When things get difficult chez McCafferty and I get a moment to breathe I try to recall these times, his elation, the absence of dread. I have found over the years I’ve dealt in dread as much as I’ve dealt in joy with Justin, and I am diligently trying to change that (it’s even one of my New Year’s Eve resolutions!). Stockpiling those moments of joy and trotting them out in trying times restores my sanity, because it reminds me of this- everything with Justin is cyclical. Yes, we are often putting out fires, but there is an ebb and flow to the difficult times, and to date, peace has always returned.

May it always continue to do so.

Recently I celebrated my anniversary, my son’s birthday, and Mother’s Day (yes, I am quite tired). I’ve got good memories for the “bank,” and a reminder to myself that when things fall apart, and they invariably well, they will come together once again. Eventually there will be peace.

And when there is, I plan on being in the moment enough to enjoy it.

 

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May 14, 2018

Happy Birthday Boy

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:44 am by autismmommytherapist

Last week you turned fifteen. It happened to be field day at your school, and your smile when you saw me waiting for you to perform was magnificent.

That smile carries me many days.

I usually have a variety of emotions on your birthday. I always take time to remember the first moment I heard you cry and held you in my arms- my firstborn, bright with promise. It took about three years and a lot of doctors to get you here, and your dad and I were beyond ecstatic. Your arrival made us a family.

It launched me into the role I was born into, if you believe in such a thing.

The reason I’m ambivalent on your birthday has nothing to do with your label, or even the dreams I had for you when I was still hosting you. I’m mostly past feeling sad that you will never go to college, marry, or enjoy the trappings of a more “conventional” life, because in my mother’s heart I know you don’t miss these things. You are truly happy with your DVDs, your YouTube videos and your hits of Baby Einstein. When not in the throes of a catatonia episode you are blissfully happy. It is more than enough.

It is almost everything.

No, I’m not ambivalent on your birthdays because of you “now.” I’m ambivalent because of your future. You see birthday boy, your mom reads a lot and talks to many people about what’s coming down the pike as you enter your transition years.

By the way just yesterday you were snuggled into a perfect fit in my arms, so how did this happen?

Some people call post-21 the cliff (or the abyss, it depends who you talk to).

Some say they’ve been able to create fulfilling lives for their adult children.

I want you to know with every inch of my soul I’m shooting for the latter.

I also want you to know that last week I did something different- I pushed that ambivalence down, lived in the moment (!) and just reveled in who you are, did not imagine who you will be.

I’m very proud of myself.

You’re strong, mercurial, funny, kind, smart and abundantly affectionate.

Your hugs are the best thing in the universe.

I love you with every core of my being, and I will fight for you with my last breath.

You are my heart.

Happy birthday to my not-so-much–a-boy anymore.

I love you.

 

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May 7, 2018

The Space Between

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 10:05 am by autismmommytherapist

Dear Moms,

If you’re reading this in your voluminous amounts of spare time, perhaps your son has just been diagnosed at the tender age of two and you’re overwhelmed by where to go next. Maybe your teenaged daughter, whom everyone assured you was just shy, is now sporting the ASD label. Perhaps after years of therapy and (literally) your blood, sweat and tears you are realizing your little boy is destined for the more severe end of the spectrum, despite all your efforts. Maybe your son is aging out of his school entitlement, and your world is now consumed with SSI and guardianship and praying like hell that day program down the road will not only take him so you can work, but that your boy be willing to stay. Perhaps your child has just hit puberty- enough said.

A lot of “maybes” here, but I’m certain of one thing- you are very, very tired.

Maybe you’re not going through a major milestone, but instead trying to figure out how to get him to eat, to sleep, to leave the house without screaming, to stop pinching you every time you need him to make a transition. Perhaps you’re trying to figure out how you can convince a sitter to stay with your five-year-old so you and your significant other can remember why you got married in the first place. Maybe on top of autism and OCD and anxiety your girl has just received another co-morbid diagnosis, and you’re trying and failing to summon up the strength to educate yourself once again on yet another disorder.

Perhaps you just want to scream every time someone tells you they don’t know how you do it, as if you had a choice.

Fifteen years ago this week my husband and I began our own “autism rollercoaster” when our beautiful son Justin was born, a much-wanted and longed for baby. I would start to have concerns about his development when he was just six months old (he hit his milestones but spun everything in sight), would have those concerns validated at seventeen months when he received his PDD diagnosis which would morph a few months later into a plain old ASD label. Five years later our eighteen-month-old son, who unlike his brother had developed typically until then, would regress before our eyes after two back-to-back illnesses, losing his speech, developing a rash all over his body, and most significantly losing the very spark that made him who he was. Over the last decade-and-a-half we have seen our boys labeled with autism, OCD, ADHD, and most recently for our eldest, catatonia. We have endured insomnia, refusals to eat, binge eating, anxiety, and aggression.

Here, it has not always been “good times.”

Having been in the trenches so to speak for the last decade-and-a-half I will share with you that at times I have been depressed because my boys suffered, have been angry at their suffering, and riddled with anxiety over whether I’d ever figure out how to help them be happy. For years at a time I put my own needs on the back burner, living from one potty training incident to the next, measuring my happiness based on how much each child had slept the night before. I had given up my much-loved career when our eldest was diagnosed, and subsequently the boys became “my job.” Quite honestly, their needs consumed me.

I lost myself.

It took me many years to realize that sometimes I needed to put my needs first.

Finally, one day I realized that with both boys our challenges came in cycles. Often we would have periods where things were calm, the boys were happy, and our home life resembled some sort of normalcy that I’d never thought we’d achieve. Of course, you’d think I’d be able to revel in those periods, “the space between” I’d come to call them.

Often, I didn’t. I’d be filled with dread waiting for the “other shoe.”

What I eventually realized was this. This autism gig was here to stay. These cycles would be my constant companions until my dying breath, which hopefully was many, many decades away. No matter how educated I was, how diligent I was, and how good a mother I was, I could not change this incontrovertible fact.

The only thing I could change was me.

It’s been about three or four years since I stopped “dealing in dread.” When one of my kids is suffering, I admit I am not good at compartmentalizing their suffering- I don’t think I ever will be. What I have learned to do is in those calm, quiet periods (and I can’t promise you, but I believe you will have them) is to grab onto life with a tenacious grasp, to take care of myself, to actually have fun. I make those doctor appointments I’ve been putting off for six months. I have lunch with a friend I haven’t seen in a year. I troll everyone I know to help me find a sitter competent enough to stay with my boys so my husband and I can get some relief.

As much as I can, whenever I can, I try to relegate anxiety over the boys’ collective happiness to a shelf somewhere in the remote recesses of my brain. I do this for them, because a happy mom is a more competent mom, and they need me to be that for them.

But I do this for me as well, because I deserve to have a life too.

So this Mother’s Day, and every single day that you possibly can, carve out some time that’s just for you, for your happiness. Perhaps it’s a night out with the girls. Maybe it’s fifteen minutes in the tub while your husband handles the kids.

Maybe it’s just a really good and well-deserved glass of wine in a quiet place. Chocolate helps too.

Try, as much as you can, to find happiness in the space between.

 

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April 23, 2018

The Other Shoe

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 10:09 am by autismmommytherapist

His “eees” resound throughout the living room, punctuated by small silences that make me look anxiously toward him and gratefully away as I realize they are just silences, not episodes of catatonia which invade his happiness and enjoyment of life. Since we started a new medication eight weeks ago we have seen a vast improvement in quelling his disorder, starting with near-miraculous eradication of the spells for two weeks, a plateau where they resumed but not with their initial ferocity, and a leveling out that both his school and family can live with on a daily basis. It has been an incredibly stressful six months of first having to diagnose him, choosing between conflicting diagnoses, and then holding our collective breaths and hoping we picked correctly and treatment would help him.

It did. And a half a year and two very tired parents later, we are profoundly grateful.

Justin is almost fifteen, and to tell you the truth I anticipated that going into puberty there would be something (all my friends’ kids have experienced some additional challenge to their severe autism), but honestly, I never thought it would be this. I anticipated aggression, or seizures, or even self-injurious behaviors which he had never exhibited previously, but not catatonia. Frankly the only time I’d ever heard of it was in relation to the movie “Awakenings,” which was a total tear-jerker and sad as hell. I read a lot about autism on various websites, and I was stunned I’d never heard of this disorder that affects between 12-18% of all individuals on the spectrum.

Live and learn.

Although I was prepared for future challenges, I have to admit I was (and am) angry my boy has one more thing to deal with in his life. Quite honestly I feel that dealing with severe autism and OCD are enough to handle, but the universe has mocked me and has other plans, so now we’ve added catatonia to the mix. Since I was anticipating something would rock our world and we’ve now identified it and are treating it you’d think the drama would be over, and it is somewhat. We have a name for what ails him. There are several treatment possibilities should what we’re doing now fail. It should be life back to “our normal.”

You’d think I could say the other shoe has dropped. But with autism, and especially with severe autism or any severe disability, it ain’t over ’til it’s over.

This year I’ve dedicated my writing for Autism Awareness Month to helping caregivers. I’ve spoken about getting the help you need, whatever that may be. I’ve written about the importance of making friends with parents of children with your child’s level of severity. Today I want to talk about how important it is to let the people in your life know the big picture, especially if your child will never live independently and will always need your care, or that of a caregiver.

For years my husband and I didn’t talk about the long-term implications of Justin’s severe disability. I think we kept things close in part to not worry people, and perhaps somewhat out of a fear that if we were “Debbie Downers” people would abandon us. I’m not a big believer in regrets, but if I could go back and change a few things I would have spoken more about the potential and likely trajectory of Justin’s life, just so the people who are important to us could get a glimpse of what his forties, fifties, and beyond will probably entail. For once I recently took my own advice (a miracle!) and wrote a long email detailing Justin’s newest disorder, the various treatments he might have to endure, and even worst-case scenarios. I even explained how having catatonia could severely affect not only his post-twenty-one life, but his parents’ lives as well. I laid it all out there, held nothing back.

And damned if almost everyone responded with kindness and concern.

Of course this response rate is a testimony to having understanding families and my choosing good friends, but this disclosure helps in a myriad of ways. It’s also a dozen or so less times I have to spill my guts and try to make people with no direct contact with severe disability understand how profoundly this affects my family both now and in the future. If I have to cancel a get-together I don’t have to explain what’s going on, or discuss why perhaps I’m just completely overwhelmed and can’t make it that day. This understanding of our situation can help prevent relationships from disintegrating, and help others understand why my stress levels the last six month have been through the roof (my new blood pressure medication can bear witness to that). Quite honestly, it makes it easier for me to ask for help if I need it, as once people get the huge ramifications of what Justin’s experiencing they will probably come to our aide more often if we ask.

And God knows, we can all use a little help sometimes.

I don’t tell everyone the full story. I am careful in who I choose, selecting individuals I know will care and be genuinely interested in what’s going on. Good friends, yes. My dental hygienist in my thirty seconds of speech- not so much. I try to avoid people whom I know will get that glazed look in their eye when I speak about my son. It’s not worth the trouble.

You will find probably find however that a number of people in your life are genuinely interested in your family’s story, and I recommend you divulge away. Let people know what autism means for you on a daily basis, not just how it affects your hopes for your child, but your daily routine as well. If disclosure leads to them asking if they can help, give it a try and let them. Honestly, if they drop you like a hot potato after you disclose they would have abandoned ship eventually anyway. It’s better to cut ties sooner than later.

With many types of autism, there exists the perennial “other shoe.” For my family, the worry will never be over as I strive to outlive my son and know I never can (but I’ll give it my best attempt). If I’ve learned one thing in my decade-and-a-half living with an autistic child it’s that there will always be something, and it may not be pretty. Lighten your load if you can. Speak up when it’s appropriate.

Try to loosen your grip a bit on that other shoe.

 

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April 9, 2018

Just Get Help

Posted in Life's Little Moments, My Take on Autism tagged , , , at 9:54 am by autismmommytherapist

Ah, the silence.

It is the first day back after spring break, and I am reveling in the absence of sound, the dearth of requests for juice/snack/world peace (okay, maybe not the last one, but it felt that way sometimes). Both kids are healthy and safely at school, and maybe their mommy can begin to dig out after the last three weeks.

Spoiler alert- if I put the last twenty-one days on a tv drama it would be canceled for its absurdity.

My trials began two weeks before break with my husband traveling, during which of course we had a snowstorm (thank God for good neighbors with snow blowers!). After a calm weekend I got a call on Monday from my youngest son’s school saying he had stomach pains, forty-eight hours before he was supposed to perform three times as Gaston in the school play. There ensued two trips to the ER in six hours (no, not appendicitis, which I think they could have checked for the damn first time), and an emergency call to my mom to sleep over and take care of Zach the next day. Six hours after my husband got home from the ER we were in a car to Baltimore for a round trip to see a catatonia expert we’d waited two months to meet. The next day my boy rallied and performed his heart out several times, and the following day his elder brother and I took a seven hour round trip to see his neurologist. We capped it all off by starting spring break with Justin catching a stomach flu and living in the bathroom for three days, with a spectacularly violent episode (I’ll spare you the details) on Easter morning.

I know. I couldn’t make this all up if I tried.

After Justin lost about five pounds and finally rallied we had our first “healthy/calm” day in almost a month, and my body rebelled. I haven’t been able to nap since my thirties (more than a few years ago), but the day after Easter I found myself stretched out on our couch almost all the way into slumber, to the point where Zach felt he had to hold his hand up to my nose to see if I was still breathing.

There’s not a lot of “alone time” when the kids are around.

The truth is my body just collapsed, and it took me several days to recover. I find this to be immensely annoying, as for decades I was always the girl who if she got a half-decent night’s sleep could keep going indefinitely.

I know, welcome to aging.

For once, I listened to my annoyed body and took care of my needs. The kids spent most of their vacation at home, Justin on the computer and Zach reading and watching movies with me. Of course the weather sucked which helped in my decision, but we probably could have squeezed out a day at the boardwalk or at Great Adventure. We didn’t. They were fine with it. I got (most) of my mojo back.

And it all reminded me how important it is for all of us caregivers to take care of ourselves, not just our kids.

This sentiment is not just limited to caregivers of autistic children by any means. We are a generation of parents burning the candles constantly at both ends, ever accessible to everyone with our smart phones, with a lot of pressure to do more and more for our kids. Often I’m simply overwhelmed by the sheer logistics of it all, and don’t have time to even contemplate the more daunting aspects of our lives with a severely autistic teenager. Sometimes I forget to recharge, and it always comes back to bite me, either with my falling sick or lacking patience or losing sleep over thinking about what I have to do the next day.

And for those of us contemplating lifetime care for a child or children, the stakes are even higher and much more complicated.

This is autism awareness month, and as much as I am utterly and completely aware of autism and how it affects my kids, I am also aware of how it affects me and my husband. It is imperative that we take breaks sometimes, recharge, remember who we were before autism and children came to call. I know some of you are probably thinking “how the hell can I do that when I can’t leave him/her with a sitter”. I was at that point many years ago when Justin was younger and so intensely difficult, but we kept persevering, and eventually our hard work paid off. We did find one or two brave beings willing to watch our boy no matter how challenging he became, and my husband and I would get out and have a few hours of normalcy together where we could reconnect, and oh my God, have fun.

Getting help is imperative to your physical, mental, and emotional health. Don’t stop trying until you find someone who can give you that break.

Whether your child is just getting diagnosed or is approaching puberty, caretakers’ needs are the same. Sometimes dealing with an autistic child is absolutely grueling. We caretakers have to attend to our needs so we can be the best parents possible for our children, but also, and I feel this message often gets lost, because we deserve to be happy and live our best possible lives too. Keep trying to find that person who can handle your kid for a few hours. Any time someone offers to help take them up on it, even if you’re nervous about it. At the worst you’ll get a few hours off from parenting, and at best, you might have found someone willing to come back.

Keep trying. You and your sanity are worth it.

Don’t give up.

 

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March 20, 2018

Practice What You Preach

Posted in Life's Little Moments, My Take on Autism tagged , , , at 10:27 am by autismmommytherapist

For the last five months we’ve been watching our severely autistic son have “episodes,” interludes in which he bends over at the waist or sits staring, still able to hear us, thumbs tucked into his palms. He can endure these spells for seconds or minutes. Sometimes we can get him out of them, sometimes not. After soliciting four different opinions we’ve narrowed his symptoms down to autism-related catatonia, which affects 12-18% of individuals with autism. If he does not respond to treatment the condition will worsen. The more time that passes, the harder it is to alleviate the symptoms.

And trust me, the harder it is to watch.

We started Justin on a medicine for catatonia a little over two weeks ago, and he responded almost immediately. Within twenty-four hours we did not see the eradication of the disorder but did note a lessoning of episodes, a shorter duration of episodes, and equally important, the ability to get him out of them much easier. This period lasted both at home and at school for twelve glorious days.

Then, on the thirteenth the data came back from school, and it wasn’t good.

Over the last week there have been more episodes at school, but thankfully not to the extent that he was having them prior to being on the medication. Over the last few days we’ve again seen a lessening of spells, and I hope he’s working his way back to that glorious period where our boy was back, his happy self shining through. I admit, my hopes plummeted on that first “iffy data day,” and I was not a happy camper.

But one thing I have learned in almost fifteen years of being a caretaker of a severely autistic child is that there are no quick fixes with autism.

If you’ve heard of any let me know.

When he was younger, I often rode the roller coaster of emotions related to how my boy was doing. I strapped myself in when he had insomnia, stopped eating, became aggressive at home, and his OCD ramped up so much that we were following him around the house 24/7 to halt his aberrant behavior. In his younger years I took it all to heart, losing sleep, making myself sick sometimes.

About five or six years ago I knew I had to stop. Be worried about my boy’s safety and happiness? Sure. Work myself into a frenzy ever time some new fun autistic twist occurred? No more. I need to be a whole, sane mother for this child. I need to be a whole, sane mom for my other child.

I need to be a whole, sane, calm person for me.

So I am practicing what I preach, taking each day, sometimes each hour, at a time. We see a specialist in catatonia next week, and we may have more answers then. We could be in an entirely different place a week from now, either good or bad. The appointment may go well, or may raise even more questions than I had prior to schlepping to Baltimore.

I can’t control my son’s neurology. But I can control how I react to it.

And for my sons and myself, I’m going to do just that.

 

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