January 14, 2019

Taking a Chance

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:50 am by autismmommytherapist

“He sounds like such a man,” my friend said after hearing some deep guttural stims over the phone as we caught up on each other’s lives and vented about our extra holiday pounds. “I know, he has the beginnings of a mustache” I replied, thinking happily that at least this would be my husband’s domain.

I have my limits when it comes to child care.

The truth is, I’ve been in a little bit of denial over my eldest son’s (who has severe autism, OCD and tics) impending manhood, in part because he is now bigger than I am, which can be problematic for a host of reasons.

The other reason is that each step closer to adulthood is one step closer to my not being here for him, and that’s just not a place I like to visit often.

Trust me, it’s not a pretty place.

Despite my reluctance to contemplate this the reality is that in five short years my son will be twenty-one, and will age out of his school entitlement.

I’m not sure who will be the most unhappy about this. I believe it will be a tie.

I’ve heard the post twenty-one autism world described as a “cliff,” but to tell you the truth I’ve seen my friends with older kids on the spectrum make it work for them, so to me, there’s still hope.

Of course the next five to seven years is when the “autism bubble” bursts, so not as sure we’ll be as successful.

The truth is I’ve got to start thinking about what the landscape of Justin’s life will look like, whether I want to or not. I’m hoping it includes a day program. It would be lovely if he worked a few hours a week or volunteered somewhere too. And one day, eventually, he will reside somewhere other than his mom, dad and his sibling.

His brother has made it clear he’s not taking him on full-time. And while I get that he’s eleven and that taking care of his severely autistic brother doesn’t sound as fun as time on Xbox, I’m pretty sure his opinion won’t change with maturity.

Call it a mother’s instinct.

Someday, Justin will live in some type of group home placement, will have to relinquish his routine and the ocean mural on the bedroom wall of the only house he’ll ever remember, and make his way in a group living situation.

I have read and spoken to so many parents who are keeping their kids until the very last second.

I have read and spoken to so many parents who want their kids in a residential placement as soon as possible both for their ability to be as independent as possible, and for their own freedom as well.

I don’t believe the first group are martyrs.

I don’t believe the second group are callous parents.

I think in some cases it’s easy to see what’s best for both the adult child, and the parents.

I think in some cases it’s near impossible.

Impossible for us because I know in my heart he wouldn’t want to change a thing over his eighty-something years, and that is just not an option.

Despite the fact that I’ve been told my choices (short of winning the big lottery) are ridiculously limited, I know I have to start thinking about these issues and how best I can prepare Justin for such a tremendous move.

Given that he’s only spent about a dozen nights out of his own bed in the last ten years (yay Disney!) I’m pretty sure I need to step up my game and address this first.

Since one of the biggest challenges for Justin living away from us will be sleeping in a new environment, I know I’ve got to create other opportunities for him. A lovely fellow autism mommy mentioned a local camp that does both day camp and sleepovers, and trusts them implicitly.

I can tell you when we spoke about it my heart both lurched and soared simultaneously. Would he sleep at all? Would he find it even the tiniest bit fun? Would I get to go out?

Would he understand that I’d come back for him?

To say that I’m not sure how this will go would be a massive understatement, but I’ve decided I’ve got to give it a try, and for as long as the camp is willing, keep trying. I’ve got to expand his horizons. He has to try new experiences that will set him up for success in adulthood.

He’s got to see that as long as I’m able, I’ll always see him again.

Summer camp is just a few short months away, but it will be here before we know it. Wish us luck. And if you’re like me, in a situation where you’re child’s adulthood is on the horizon and you want to start preparing him or her, now’s the time to push the envelope. Take some risks. See how far you can stretch them.

Who knows. Maybe we’ll all be happily surprised.

My fingers are crossed.

 

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January 7, 2019

A Helping Hand

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:39 am by autismmommytherapist

“Can I help you?” she said quietly, standing respectfully behind me as I tried to maneuver Justin off the ride at Great Adventure. I turned to make sure she was talking to me, saw her smile, and knew she was there to help. I was confident in another second or two I’d have him out (he’s big now, I wouldn’t want anyone to hurt themselves), so I responded “Thank you, but I’ve got this.” She wished us a good night, and moved toward the exit.

It was freezing there that day, but her offer warmed my heart.

In the last two years particularly I’ve had some issues with Justin when we’ve been out and about in the community, and as he’s gotten older and bigger it’s at times been more and more difficult to contain him when I’m alone with him. The last year until this past fall was especially grueling- we struggled at Jenks, at Great Adventure, at the movies, etc. You might wonder why I still kept taking him out. The truth is there were still many instances where he behaved beautifully, coupled with the fact that I’ll be damned if his world becomes smaller than it already is.

I have my limits.

The times he’s fought me have always been for a reason. Perhaps it was that he wanted to go on a ride he’s been too tall to ride for five years. It might have been for a trip to a water fountain I couldn’t see and thought he was just trying to leave. Perhaps he did just want to leave the venue just minutes after we’d arrived.

Sometimes I know the “why,” and sometimes I’d pay big money for those answers.

But truthfully in the moment I just want him to stop, and sometimes our “wrestling” can be intense. I’ve had a few instances where I’ve been soaked in sweat from the encounter, and I can’t blame it on perimenopause.

We all have to find the humor somewhere.

Those episodes with him are physically and emotionally wrenching. I can honestly say in all the years we’ve had this struggle I’ve only had two offers of help with my son.

Yes, two, and one was a Jenks “cop,” so I’m not sure that really counts.

Justin is bigger than me now. I’m sure an autistic teenager in the throes of a meltdown is a scary sight for some. I completely understand why moms and dads with small children steered clear of us. I get it, I wouldn’t put my kid at risk either.

The truth is I’ve watched some strapping young men glance our way and then give us wide berth. Honestly, I think this community can do better.

It can’t be from lack of awareness, for everywhere you turn in Jersey there’s an autistic kid, so I’m confident people knew what my son had. To be honest most of the time I can figure out a solution to his angst and work him through it.

But there may come a day where I can’t, and I would love it if someone simply offered to help.

I’m not asking anyone to get physical with my kid. Perhaps you could just hold my purse, or his pretzel, or make a phone call home for me if things really get bad.

Just knowing someone else gave a damn would have helped.

I am far from the only person in this area who has gone through this. I’ve seen other families struggle, and once on the boardwalk I was able to comfort the young sibling of an autistic boy in a gigantic meltdown while his mom worked to calm him down. I felt lucky to be there that day. She told me I helped her.

It took five minutes of my life, and made that family have a better day.

So I’m writing this to our community, a community I have often written about as particularly caring and compassionate where my son is concerned. If you see a mom or dad struggling and you are able, please offer to help. Nine times out of ten they’ll probably refuse, but maybe that one time you can really do something to ease that family’s strife. And while there may be nothing you can physically do for them in that moment, trust me, just by asking them you’ve already helped.

From my community to the greater community at large, I thank you.

 

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January 3, 2019

Resolution Evolution

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 12:19 pm by autismmommytherapist

It’s only January 3rd, and I’m already wavering on my “reduce chocolate” resolution.

Maybe some things are for the best.

Generally I am a person who takes New Year’s Resolutions seriously. The holiday reminds me of my teaching days, when the end of August usually found me setting up my classroom, excited about a clean slate with my incoming students. Most of the time that enthusiasm, that drive to make this an even better year than the one before, lasted until June.

There were a few years however when my charges brought me to my knees by October.

I usually find my January resolutions last for at least a few months, sometimes longer. This is the first year in many, many years losing weight is not one of them (stress is a bitch but great for my BMI). I still have my resolutions for 2018 written on a scrap of paper on my desk, mostly for the boys. I had half a dozen for each, and got to three and two respectively for each kid.

Not a bad haul after all.

But this year I decided to change things up a bit. Most years I am very specific in my “improvement desires,” but this year I went old school.

My resolution for 2019 for this family, and for me, is just to be happy.

I know, it probably sounds like I’m slacking a bit (and maybe I am, but frankly the last two years have been hell, and I’m finding I don’t rebound as easily between disasters as I used to in my youth). So this year, I’m keeping it simple- bliss, in whatever form that takes for every member of my clan, is the goal.

And although I’m writing this for my brothers and sisters who have been in the autism game as long as I have, or much longer, I’m also writing this for my brethren who are just starting out, or any of you in crisis with your child.

Those of you who have just received a diagnosis for your child, or are realizing they will probably reside on the more severe end of the spectrum, or are just thinking about reaching out to Early Intervention to have your son evaluated, this is for you. If your kid is taller than you now and aggressive or self-injurious and you often contemplate how to get through the hour, not the day, this is for you.

No matter what is going on with your child, you have to take care of yourself, and find some “happy.”

For years, I didn’t do this. I threw myself headlong into being my eldest son’s ABA therapist when he was eighteen months old because Early Intervention barely exists in Virginia, and I kept up a grueling pace for two years before we moved back to NJ, no fun in sight. When my son has moved through what I call his “relentless cycles” of insomnia, aggression, extreme OCD, etc. I focused entirely on him, never thinking of my needs. Doctors visits got postponed; exercise was a thing of the past.

Fun, of any kind, was not on my radar.

I have people new to the autism journey ask me often if I could go back and change things, what would I alter. Aside from firing a few therapists a lot sooner than I did, I can honestly say the one big thing I would change is the fact I didn’t take care of myself, and allowed myself very few opportunities for respite.

That choice has affected my health, some friendships, and my overall outlook on life, which has generally been disgustingly positive.

I have vowed never to let that happen again.

So please, whatever is going on with your child at this moment, do whatever it takes to create some “happy” for yourself. Go beyond that daily run or that gynecologist exam- figure out what brings you joy, and move mountains to allow yourself those hours just for you. If a neighbor, friend, or relative has offered to babysit, take them up on it (even if it’s a disaster you’ll get out once!). Remember, your family and partner need a whole, happy, and healthy person in their lives- do whatever it takes to get there, and leave those other resolutions in the dust. They’ll be there waiting for you down the road, but you are the priority- you come first.

Do whatever it takes to find your happy.

 

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December 14, 2018

The Future

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

If you are just beginning your autism journey with your son or daughter, I imagine you are feeling at least a bit (understatement of the year) overwhelmed.

Perhaps you’ve been able to secure that elusive appointment to get your child a proper diagnosis. Maybe you have passed through that gauntlet and are already lining up meetings with Early Intervention for both you and your kid. Perhaps you’re at a later stage and are in the midst of evaluations with your child’s school district to get him or her enrolled in what you hope will be an appropriate (and excellent) program.

I imagine that wherever you are in this process, whether during it or after it, you are very, very tired.

I am fifteen years into our autism journey with two children on the spectrum, but I can remember those days like they were yesterday. It seemed for years we were living from one doctor’s visit to the next, one evaluation/meeting to the next. It was a relentless round of hurry up and wait, until finally we moved and got our son, Justin, into his local school district.

And yes, I too was very, very tired.

We were fortunate in that most of Justin’s therapists and teachers were wonderful, however most people do not deal with dozens of practitioners without having at least one bad apple in the bunch.

For us, it was an Early Intervention provider who informed me with absolute certainty that my twenty-month-old would never speak or live independently. In truth, she turned out to be right.

But that’s not the point.

I will tell you this. At the tender age of eighteen months my eldest son was diagnosed with moderate to severe autism. He had no words, had frequent meltdowns, relentless insomnia, gastrointestinal issues, sensory issues, and was the pickiest eater on the planet. This was 2004, and a diagnosis at this age was generally unheard of, but we were fortunate that a developmental pediatrician was able to recognize his issues for what they were so we were able to start various therapies with him. He was not even two when he started with ABA and speech therapy, barely walking when this particular therapist graced our doorstep.

She had no right to say what she said. There is absolutely no way anyone can predict the trajectory of your child’s future when they’re this young. And while my gut instincts told me Justin might remain at the more severe end of the spectrum, the elusive possibility of him having some semblance of functional speech and some measure of independence kept me going in those dark days when I was my son’s primary therapist. With that one sentence his therapist robbed me of hope and plunged me into days of despair before I was able to realize that she wasn’t omniscient, and was far from having all the answers.

She never should have said what she did. And I wish I’d had the energy to tell her that to her face.

Fourteen years after that chilling moment my son does have a few words, but more importantly he can communicate beautifully with his iPad. He will never live independently, but is wonderful at getting his needs met by himself, excellent at the execution of completing a task. He eats (even a few veggies!), sleeps, and no longer has many sensory issues.

Most importantly, he’s one of the happiest children I know.

Ten years ago our second child was diagnosed with regressive autism, and at first his trajectory seemed to mirror his brother’s. Zach was eighteen months when he experienced two back-to-back illnesses which seemed to rob him of speech, appetite, and extinguish the light in his eyes that made him our boy. I remember thinking at the time that one of his therapists could have said the same thing about him that they did about our older boy, but fortunately all held their tongues.

And ten years later he no longer has special education status, has friends, made the distinguished honor roll in his first marking period of middle school, and most importantly, loves his life.

To this day, both of my sons still surprise me with their skill acquisition, their ability to adapt to different environments, and their ebullient souls. Fifteen years ago I could never had predicted I’d be at this point with my two boys, and my hopes for their happy, safe and productive futures were what kept me going during our darkest days. Nobody can predict your child’s future when they’re very young, not even the most brilliant doctor or the most experienced therapist. Don’t ever let anyone rob you of hope that your child will one day be happy too.

And never, ever give up in that pursuit.

 

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December 4, 2018

Not Home for the Holidays

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:23 am by autismmommytherapist

The holiday season is upon us, and as usual I try to take time (usually a few seconds at this time of year!) to reflect on how my two boys with autism are doing, and what steps I can take to make the holidays go more smoothly than in years past. My severely autistic boy is fifteen, my youngest son on the milder end of the spectrum is eleven. Quite frankly, we have had some Thanksgivings and Christmases in the past that brought me to my knees (while fervently wishing the eggnog had a little something extra in it).

I am happy to say that as of this past Thanksgiving, we have left those days behind.

I would love to tell you that my brilliant parenting brought on this eighth wonder of the world, and I do like to think that a little strategic planning helped. I have to share with you however that the biggest factor in my boys’ (and thus their parents’) collective happiness this past holiday is frankly due to maturity. My boys, especially my severely affected one, have simply grown up, and in the process lost a great deal of their sensory issues, which I feel greatly contributed to some of the fiascos of “days of yore.”

Trust me, there were some “good times.”

Looking back at past holidays there were definitely some tips I got from other parents and autism websites that worked for my family, and I’d like to share them with you today.

1) Prepare, prepare and overprepare. If you are travelling for the holidays bring every toy, DVD, and book you can possibly cram in your car or on public transportation to bring as much of “home” as you can wherever you’re going. Sometimes just seeing a familiar toy calmed my son down over the years. Bringing the favorite “du jour” is key.

2) Find out what time your hosts are serving, and initially keep visits short. There have been years we’ve arrived at my family’s or my husband’s family’s abode half an hour before we ate, and left before dessert. It wasn’t ideal but we were able to keep my son reasonably happy, get out for the holiday, and even have time for an appetizer or too. Over the years we’ve been able to expand our visits for up to three hours, but it took time. Try to have patience.

3) Educate your hosts about your child’s particular take on autism. As much as you can, have conversations with the people you’ll be spending time with about your child before the big day- how they may act, why they would be acting that way, what they can do to help. Often if people feel they can contribute in some way they are sometimes more receptive to our kids’ quirks. If not, at least they were prepared for what could happen.

4) Keep your expectations reasonable. I know this is supposed to be a magical time of year, but often it’s very stressful for children on the autism spectrum. If your child seems rude when being presented a coloring book from Great-Aunt Janice rather then something that lights up and spins, it’s okay. Not every moment will be perfect, the important part is to have some positive moments and have every outing improve over the last one.

5) If appropriate, create a social story about the event for your child. While these stories didn’t seem to help much with my son, I have friends who swear by them. Also, sometimes having a schedule, even one that diverts from the norm, can be incredibly soothing to an autistic child. I have friends who have created schedules where major moments of the day are velcroed so that their child can rip them off and see how close they are to going home. It’s worth a try!

6) Finally, even if things go south, there were probably a few good moments you can build on for next time, and you probably learned a thing or two about what to do differently. Every year I’ve been able to tweak my holiday prep for the best outcome, and after fifteen years I can finally say we’ve come to a place where I truly enjoy the holidays with our extended family, and most importantly, with my sons.

Wishing you the best this holiday season, hang in there and good luck!

 

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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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November 13, 2018

Keeping an Open Mind

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:24 am by autismmommytherapist

I remember it like yesterday. An eighteen-month-old Justin and I were sitting having lunch in a restaurant in the mall, and a lovely elderly lady approached us to say hi to him. Despite lots of attempts and funny faces my son remained unmoved by her antics, and I apologetically blamed it on hunger and his need to eat. “Is he talking yet?” she asked, and as I swallowed past the lump in my throat I replied “no, not yet.” She smiled at me, said “soon,” waved again at Justin and walked away.

I’m not claiming I can foretell the future (okay, maybe a little), but I knew in that moment that “not yet” was a lie.

Fourteen years later, my prediction was correct.

Maybe you’re reading this and your son or daughter is two and has just been diagnosed, and you despair of your child ever talking, of saying “mom” or “I love you,” words and phrases you took for granted when your little one was still in the womb. Trust me, two is still too little to know if they will grace you with words. Autistic children as old as eight and even older have been known to start speaking at a late age.

Talking is much more convenient than any other type of communication. If they can speak, they will.

When Justin was little I was hellbent that he would speak. Before he went to school we ran trials throughout the day, me urging him on for any syllable he could muster, and rewarding him with whatever his favorite thing was at the time. I had read a study where sign language supposedly encouraged speech more than other forms of communication, and I remember dutifully practicing those signs with my boy dozens of times a day in the hopes that this method would catch on. It didn’t. In addition to apraxia he also has fine motor control issues.

I clung to that study. And if I hadn’t finally opened my mind to Justin’s Early Intervention providers who assured me that sign language was not the way to go with Justin and we should try PECS, a picture-oriented communication board, I would have been doing my son a grave disservice.

It turns out that what my son lacks in fine motor control he makes up for in technological know-how. He graduated from PECS to an iPad and the Proloquo to go program, learning to read and to type simple phrases. He is the master of any Google search, and has learned to communicate any needs we can’t figure out just by him knowing how to use technology.

I’d swear he’s better at it than I am, but that’s not saying much.

The truth is, his method of communicating was just one of a number of issues I had to learn to open my mind about. When he was two I moved our family back to New Jersey for better Early Intervention services and school programs, and I was determined we’d find a great public school district where my bright boy could potentially mainstream part of the day. Inclusion and receiving a public education where this would be possible was my priority- my boy would have access to his neurotypical peers.

In the end, his need for a private autism school to address his educational and behavioral needs far superseded his mingling with NT peers. Fortunately, I was able to let that dream go and be intensely grateful for the fact that our district agreed, that we found the appropriate school, and miraculously they had an opening.

For eight years this school has been his second home. And he never would have enrolled there if I hadn’t kept an open mind.

If you’re just starting out on the autism path with your child there will be so many choices to make in the next few years. You may have to make decisions about which program your child should enter in your school district, where they’ll attend school, what is the best method for them to communicate. Don’t be afraid to garner multiple opinions, and if you feel something isn’t working, insist that therapists and school personnel try something else.

You may encounter resistance. Keep on pushing. Never give up.

You will make mistakes- we all do. Sometimes figuring out what’s best can be a Herculean task for our kids- often there’s no clear path to a solution for whatever challenges they’re facing. Be strong. Reach out to other autism parents, professionals, and do your research.

And remember to keep an open mind.

 

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October 24, 2018

Celebrate the Small Stuff

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 8:47 am by autismmommytherapist

He hesitates at the threshold of the tub, looking concerned that the water is spraying down rather than collected for his bath at the bottom. He vocalizes loudly and frequently, and it’s difficult to tell if he’s excited or dismayed that he won’t be taking a bath this evening. I gently encourage him by putting pressure on the small of his back and telling him it’s alright to get in, and after a slight pause, he does.

We’ve tried this numerous times over the years to no avail, but finally, my fifteen-year-old autistic son is taking a shower.

This might not seem like such a momentous occasion, but it is. I’m always thinking about down the road for Justin, not only how we can facilitate some semblance of independence, but also how we can make his care simpler for the dozens of caretakers who will get him from adulthood to death. It takes a lot of patience to care for our boy, and anything I can do now which will make that task easier for others down the road is a priority for me.

One more skill down, just about a thousand left to go.

If someone had told me fifteen years ago when I held Justin for the first time in my arms that I’d be excited he finally learned to shower a decade-and-a-half later, I would have understandably been upset. The truth is Justin’s development diverged from “typical” as early as his first year, and every year after that I witnessed the gap widening. I will never forget being out to lunch with him just after his first birthday and having a stranger ask me if he was talking yet, and assuring me he would. I can recall a sinking sensation in the pit of my stomach, somehow knowing this well-meaning stranger would be wrong.

Score 1 for mom, zero for stranger.

At first I thought with intense therapy coupled with his innate intelligence we’d be able to move him toward the less severe end of the spectrum, and that was my focus his first few years. I didn’t believe we’d “cure” him, but thought we’d be able to give him some semblance of a more “typical” life than that experienced by individuals on the more severe end of the spectrum. After a few years it became obvious that Justin’s severity was not budging despite our interventions.

I admit, I mourned that prognosis more than I mourned his initial diagnosis.

His world got smaller. His achievements got smaller. I threw away my child development books and thought about what realistic goals I wanted for my son. Communication- an absolute necessity. Sleeping through the night- another necessity, and this one for his mother too. Eating more than carbs each day- a must. Quelling the aggression that popped up from sensory overload or frustration or both- crucial to his happiness and ours.

Slowly, I began to focus on what he could do, not what he was supposed to do.

Once I made that shift the world changed. The panic I’d felt about “catching him up” disappeared. I was able to revel more in each of his small accomplishments and not feel so defeated when a skill just couldn’t be acquired. It was easier to work with him all day, easier to be his mother as well as his therapist.

And that shift was crucial to our relationship too.

Over the years I have learned the importance of celebrating the small stuff, of being as excited that Justin learned to drink from an open cup at ten as when my other son’s school team came in fifth in the Math Olympiad. I’ve learned to listen to friends with teenagers talk about their children’s accomplishments without feeling deeply saddened, and instead learned to focus on all Justin has achieved, and how happy he is with his life.

I’ve learned to focus on giving him the best life possible on his terms, not mine.

And I never forget to celebrate the small stuff.

 

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September 24, 2018

Be Good to Yourself

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:33 am by autismmommytherapist

I am a glass half full girl (most of the time).

I try to adhere to that perspective when I can, but I admit I’m not always successful when one of my kids is suffering. This summer we had a dual whammy of a disheartening diagnosis for my son’s movement disorder, coupled with the knowledge that his affliction was from a medication we put him on years ago.

Not good times.

For two months I was just not my usual optimistic self. Along with this movement disorder came regression in several areas of his life, making him very difficult to deal with, plus a lack of appetite that made him drop twenty pounds over the course of the season, this from a kid who always wanted to eat. Most disturbing to me however was a notable absence of joy, limited laughs and smiles from a kid who worked so hard all these years to break through to his core, his generally happy self. I mourned that former self. And the guilt of thinking his father and I “did” this to him from a medication he’d taken was devastating.

Of course, if you read last week’s blog, we took him to an expert at UPenn in what he supposedly had, and he has tics/stereotopy instead, not from medication, possibly from puberty.

And possibly just because he’s severely autistic.

I’m still distraught that he has yet one more challenge to live with in his life. I thought severe autism and OCD were enough (apparently not!), but we have a course of treatment for him and have seen some improvement, so his father and I are guardedly optimistic. I am relieved this isn’t from a medication, and hopeful that although we won’t be able to eradicate the tics we can hopefully ameliorate their significance in his life.

We’ve already seen a few smiles break through in the last few weeks. They are glorious to behold.

I beat myself up throughout the entire summer, even though the medication we put him on years ago was absolutely necessary at the time. It helped him stay in his private school. It maintained peace and a healthy household. It made him less irritable, more able to contain his frustrations with life and not take them out on his family or teachers. I know we made the right decision all those years ago.

And yet, my brain kept saying to me we should have made a different choice, despite every family member, personnel from his school, and BCBA we’ve known since he was a toddler telling us differently.

Years ago I made a promise to myself that if we made a decision that ended up being a mistake, I wouldn’t beat myself up over it. Autism doesn’t come with a handbook; sometimes the options surrounding an issue are just different shades of terrible. Couple that with knowing we’re making all his choices for him for fifty years, and everyone is bound to make some mistakes.

And it is absolutely critical to your mental health, the welfare of your autistic child, and your other children that if you make the wrong choice, you forgive yourself.

I didn’t hold to my promise, the promise I’d remained faithful to for years. I’m back to it now, am able to think more clearly and focus on helping my boy, not on how I thought we’d inadvertently hurt him. So many of us who dwell in the world of severe disability are so hard on ourselves, second guessing every decision, regretting every wrong turn made.

And I’m telling you this as a fifteen year veteran of the “autism” life- you simply must stop.

Be kind to yourself. You can only do the best you can at the time in every situation you encounter. Remember that. Learn from your mistakes. Know that this life is sometimes impossible, and all you can do is try to give your child, and your family, the best life possible.

The most important thing is you have to be whole and healthy for your child.

And you can only do that if you’re gentle with yourself.

 

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July 18, 2018

I Can Never Die

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 1:10 pm by autismmommytherapist

I can never die.

Now listen, I know the reality is that eventually I will, despite the running and the elliptical machine I love and the yoga and the 32 ounces of water I (sometimes) dutifully consume daily. At some point, my heart will cease to beat, those aged neurons will stop firing in my brain, and it will no longer matter how much broccoli I ate that week (probably a lot). Death comes to all of us eventually, and while I’m pushing for that centenarian age that many of my relatives have come close to achieving, intellectually I know it will come.

Emotionally I’m not so cool with it. You see, I have a severely disabled son.

He needs me until the last moment his tender heart ceases to beat.

I would be lying to you if I told you I thought about this all the time. I have tried to relegate this reality to a back shelf in my brain, knowing that if I thought about it all the time I’d be permanently ensconced in the fetal position, which won’t get the laundry done. There’s no point in torturing myself, and quite honestly I can go days before his sobering reality crosses my mind.

With autism there are plenty of other things to occupy my brain.

At some point down the road we will have to make some big decisions regarding Justin’s adult life. Eventually my husband and I will be too decrepit to handle my someday close-to-six-foot son and his needs, and since his little brother has stated for years he’ll visit his sibling but doesn’t want to take care of him (he gets how much work it is) we will be looking for a residential placement for him. I have ambivalent feelings about this impending decision. On the one hand, since I know it’s inevitable that he will need to sleep somewhere other than his under-the-sea room I have a certain acceptance level about his relocation. I could even tell myself that in theory, (although I wonder about this generation) most adults usually leave the nest, so why should he be any different?

The problem with that line of thinking is that while his chronological age may be in his thirties, I can bet you some really good chocolate that he’ll still like Baby Einstein videos and want his caretakers to read him an Eric Carle book before he goes to bed, which I’m not entirely sure will fly with his staff.

In his soul, he will remain forever young.

On the other hand, I worry about the possibility of abuse, neglect, and perhaps him not having someone in his daily life just to love him, which since he’ll be without me for a good forty years simply breaks my already fragile heart.

Honestly, I can’t begin to fathom how it will work without my being with him, how someone will know inherently what he needs even when he can’t express it on his iPad or with his limited words.

How will dozens of caretakers over the years know that he’s not being resistant to putting on his shoes, he simply needs the left one on first?

Who will cajole him with puzzles, dancing, and sometimes a simple good old-fashioned hug?

Who will understand his word approximation for “juice,” or understand he’s putting his dirty hands on the refrigerator not to make a mess but just to get more of the lettuce his mom was so proud he ate?

Who will navigate the myriad of medicines and supplements he takes, taking the time to tweak and adjust as he ages?

Who will comfort him when he gets sick?

Who will foster his affectionate nature when he craves the contact that centers his soul?

Who will love him when I die?

I’ve been told to have faith, to keep hope alive that dozens and dozens of caretakers whose grandparents have just been born will treat my boy with the kindness he deserves. I know there are good group homes with men in their seventies, eighties and beyond who’ve carved out a life without their families, some who’ve even gained a measure of independence.

I believe there are some autistic adults who lead good, full lives.

All of this circles around in my brain when I allow it to contemplate his future. I know there are success stories out there, and I comfort myself with those.

But still, it seems impossible that someday I won’t be there for him, to guide him, to make life choices for him, to love him even when he is difficult.

I need to live to 132, just in case he inherited the genes from my mom’s side of the family.

I can never leave him.

I have to leave him.

The situation is impossible.

I can never die.

 

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