January 5, 2015

Free

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 12:39 pm by autismmommytherapist

XMAS 2014 019

This past summer my family and I spent a day at Great Adventure. It’s the only place Justin, my severely autistic son, willingly stays for more than an hour (I have often joked with my husband that wherever we live has to be within a thirty minute radius of a Six Flags parks.) It’s usually a very fun excursion for us, mostly free of angst, and something I truly enjoy doing as a family.

On our last trip there however, things got a little bit interesting.

We were all safely ensconced on the Runaway Train roller coaster, rushing precariously along to our first hill, when I looked ahead and saw a man in the front row waving his camera. I heard one of the employees scream “You can’t have that on the ride!” and immediately had the feeling all of us were going to pay for that jerk’s need to have a selfie.

Was I ever right.

Halfway up the first hill we came to a jerking halt. I was seated next to Justin, and I immediately took his hand and squeezed it, reassuring him we’d be okay. Within a minute one of the employees was climbing up the side stairs, and I turned to grab her sleeve as she passed by so I could get some information. I told her my boy was severely autistic and that our unscheduled stop would be hard for him, and asked her how long we’d have to sit there.

She told me even when they took the camera from Mr. Important that we’d have to wait for a supervisor to come restart the ride, which would take up to fifteen minutes. I thanked her, and as she recommenced walking, I heard the slow whine of my son’s discontent begin.

I knew this was going to be a very long fifteen minutes.

When you’re a writer metaphors seem to fall into your lap, and as my son fumed next to me (and trust me, so did the rest of the people on the train) I had time to think about being stuck, both literally and figuratively. I looked at my son who was agitated, but not pinching me, crying, or trying to get off the ride as he would have done only a few years before. I was so proud of him as he went with the flow, hopefully reassured by my constant flow of “it will start soon.” I praised him and squeezed his hand and made a mental note of how much progress he’d made.

Then I realized he wasn’t the only one on the ride who’d made progress too.

We all have our demons. Mine involve over-consumption of chocolate (a fun one!), and anxiety. I’m not going to blame autism for this, as even before my kids were born I could be a worrier (I’m fourth generation, as my mom says I come by it honestly.) Before the kids were diagnosed I could talk myself down from any anxiety ledge, and I can truly say it was just a part of my life I didn’t like but had learned to work around.

Then not one but two of my kids were diagnosed on the spectrum, and anxiety became my new best friend.

To be fair, when my kids were in their early years they were plagued by sleeplessness, gastrointestinal disorders, and a general unhappiness that was both exhausting and depressing. I worried they’d never sleep (hell, I worried I’d never sleep again either.) I worried they’d never eat. I mostly worried they’d never experience more than a few fleeting moments of happiness, which is all I ever got in those dark days. My worries became a mantra of “what if this is permanent” which I carried around with me everywhere. I couldn’t shed my fear for more than a few hours at a time. I was literally stuck.

And now, and I realized this on that damn roller coaster, I’m not. Most of the time, I’m free.

I’m not free of everything. My fears of what will happen to my boys when their dad and I are no longer around are permanent. I’ve accepted this, and learned to live with it (somewhat.) To me it’s the great divide between me and parents who have kids who will safely live independently one day. I don’t think it’s a bridge I’ll ever cross, although I’ll wave longingly to the other side from time to time.

But ten years after my first son was diagnosed with autism, I realized I am free of these things.

I’m free of worrying about what other people think if my son’s loud in a movie theater (it happened over break, it was three minutes, I figure the rest of the audience will live.)

I’m free of what other people think period.

I’m free of worrying over whether I’ll ever hear my severely autistic son’s voice (I did, and did so at great length when he read his first book to me at age eleven.)

I’m free of trying to do everything right, because nobody can whether they have kids on the spectrum or not.

I’m free of trying to maintain friendships where people don’t understand my life and logistics are usually more challenging than theirs, and I need their flexibility and understanding.

I’m free of worrying every single day about my boys’ futures. The time for that will come- it’s not here yet. I’ve learned to live more in the present.

I’m free of guilt over what caused their autism, and what I have and have not been able to do for them since their diagnoses.

I’m free of worrying whether or not they’d ever be happy, because sometimes my boys are by far the happiest people in our house.

And even on that roller coaster, as small a thing as it seems, that day I was free of panic over how Justin would handle our interruption. He was fine. So was his mama. It was huge, monumental progress for us both.

And as a new year begins, and resolutions fade with that first of many bites of chocolate, I resolve that remaining free is the one I will carry with me.

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July 14, 2014

The Future is Bright

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 11:23 am by autismmommytherapist

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Today I’m going to share with you a tidbit about me that will surprise no one who actually knows me.

 

I am a worrier (and a warrior too in case you read that quickly, but mostly a worrier.)

 

As my mother says I come by my anxiety issues honestly (four generations worth,) and even in my youth although I wasn’t plagued with worries, no one would have mistaken me for a bohemian.

 

Hippy was not in my genetic legacy.

 

I would have to say anxiety did not become an issue for me however until after my first son was diagnosed with severe autism, after which said anxiety reared its ugly head on a daily basis and made mine its permanent residence.  In the early days of Justin’s diagnosis it raised such questions as “Will my son ever talk?” (yes).  “Will I ever sleep again?” (eventually and sometimes).  “Will he ever stop crying and become what I believe to be his true, happy self?” (Yes, yes, a grateful and resounding yes).

 

These worries were also coupled with fears that he would never go to college, be fully employed, or live independently, and those fears have been realized.  Justin won’t go to college.  He won’t hold a full-time job.  He will never live without full-time assistance.

 

I spent hours every day for years agonizing that those fears would come true.  They have.  He’s still okay.  Our family is okay.  In fact, on many days, Justin’s the happiest one in our house.

 

Recently, a friend sent me an article which I actually read (generally these helpful pieces from friends sadly languish in my inbox waiting for me to peruse them,) and I found it so helpful I have to share.  The article was on the “Empowering Parents” website and was about “futurizing.”

 

Futurizing is described as “taking a present action or behavior and imagining a much worse outcome in the future,” and it describes me to a “t.”  I do this constantly.  Zach will have a meltdown and I immediately leave my happy place and imagine he’ll never have friends/hate me/never go to college/get bad grades, etc.  Justin will have a tantrum or get a bad report from school and I envision a return to months of pinches and crankiness, a place we have dwelled many times but have not fully visited (thankfully) for years.  It’s like a switch goes off in my brain- anything bad portends a terrible future.

 

And when I do this, when I allow myself to go there, I am robbing myself and my child of the chance to make a plan and create a better situation.

 

The article goes on to talk about remembering that kids change, and promoted meditation and mindfulness as ways to keep calm when dealing with our children, and I found the suggestions listed there very helpful.  What struck me most however was the realization that every time I “futurize” I cheat myself and my child of any chance to reconcile the situation and create a better outcome.

 

So, yesterday I got the opportunity to practice what I preach.

 

Justin came off the bus in a “mood,” was crying as he entered the house and flung himself onto the couch, which is not his normal entrance.  I brought him his iPad in the hopes he’d tell me what he wanted, but he just pushed it away. So after offering him hugs, juice and popcorn and woefully striking out on all of his “faves” I took a deep breath, removed myself from the room, and thought.

 

His teacher had emailed me that part of his lunch had fallen on the floor and had to be scrapped, and although obviously not full he had refused all snacks as compensation.  I knew he was hungry, and defeating that low blood sugar moment was my goal.  I told myself to think.

 

And then I remembered the glories of the gluten-free bagel.

 

We’d recently had a rough few days with Zach not sleeping well, and I had dragged myself to the store Sunday morning to find him the GF bagel he was requesting, as I thought that would help us get through the day.  I remembered that Justin had eyed it curiously, but I had hidden it quickly as his therapist was coming, and I wanted to delay his mid-morning snack until her arrival.

 

Somehow, in my sleep-deprived brain, this memory surfaced.

 

I quickly took a bagel from the fridge and presented it to him.  Justin sat up, tears still streaming down his face, and looked at it longingly.  I asked him if he wanted it.  He shook his head yes (I’m still so grateful he can do this now.)  I hugged him, and made a beeline for the toaster.

 

If I hadn’t cleared my mind and remained in the present I never would have thought of that fabulous carb.

 

Trust me, this will take practice on my part.  I’ve got almost fifty years of futurizing under my belt, so this tendency won’t be eradicated overnight (although I’m certain my husband wishes it could be.)  It will take work, patience, and on some days a herculean effort to remain in the now.

 

But I’m up to the challenge.

 

I’m listing the link to the website below in case any of you want to take a look, and if you do, I hope it helps.  I have a feeling I’ll have many more opportunities to put this new strategy into play, and my wish is that over time employing it becomes easier.

 

And in the meantime, I sincerely hope that things become easier for you and your family too.

http://www.empoweringparents.com/worried-sick-about-your-childs-future-how-to-stop-the-anxiety.php#

 

September 6, 2011

The “I” of the Storm

Posted in If You Need a Good Cry, My Take on Autism tagged , , , , at 10:25 am by autismmommytherapist

Perhaps the hundredth or the thousandth hiccupping sob escapes from Justin’s lips, and I attempt once more to comfort him, but to no avail. We are stretched out together on my friend’s amply cushioned king-sized bed, me attempting to explain to my son that we can’t drive home in a hurricane, he imploring me with his eyes to try anyway. This is our second night in what I’ve come to call “captivity”, and despite having recreated his room as much as humanly possible with drawn shades, white noise, and his own sleeping bag and pillow, my eldest is having nothing to do with my choice of sleeping arrangements. I wipe away his tears once more and he pushes away my hand vehemently, and I take a hint, cover him up once more with his fishy throw, and quietly leave the room.

As I cross the threshold into the lighted hallway I recall how I’d wondered a few weeks ago if Justin’s aborted sleepover at Grandma’s was due to his routine being changed, or that fact that his mother wasn’t in residence with him. I shuffle slowly into the living room, dead on my feet from not having slept much the night before, fingers crossed. I no sooner reclaim my perch on the sofa when I see the blur of my son running past, with pillow and sleeping bag in tow. He clutches his treasures with one hand, and with the other shoves me toward his shoes, utterly indifferent to the pelting rain and strong winds buffeting the house from all sides. I gently redirect him back to the bedroom, and he sobs again in despair as we return once more to do battle. This time I don’t permit him to push me away and he finally relents, allowing me to rub his back and sing to him as his sleep medication finally takes hold, granting him release from his torment. I kiss him gently on the forehead and ease myself off the bed, and after slowly slipping the door back into its frame I once again return to the relative comfort of The Good Wife.

At least I have an answer to my question. He wasn’t missing his mommy at Grandma’s.

The decision to escape Irene with my children came with some trepidation, particularly as it seemed prudent to leave my husband here to hold down the fort, which meant I’d be traveling solo with the boys. Jeff and I went back and forth about what would be best. Finally, the inherent threat of flooding, coupled with the thought of a prolonged power loss, made me decide to flee. Justin doesn’t do “Amish” well, and the batteries in those DVD players would only last so long. Seeing as this situation could result in a bored autistic child being trapped without electricity for the better part of a week, we gratefully took family friends up on their offer to stay with them. We were very fortunate in that we had several offers to accommodate us. The one including the generator won.

The adventure started out well enough. The people we stayed with are family without the actual blood connection, and we’ve raised our kids to consider each other cousins, and the adults are viewed as aunts and uncles. Despite a large age difference all three of my friend’s children pitched in to keep Zach occupied, and he reveled in the attention he doesn’t get from his brother at home. Over the course of our stay my smallest son was able to attend his first Bar Mitzvah bash (Mazeltov!), sleep in a bed other than his own for the first time in his young life, and even find out what it’s like to have a roommate. He ran around that house and bonded with those boys perfectly, so much so that he would later declare he’d prefer to live there, and that my presence wasn’t required. Zach was enthralled with the concept of “big brothers” who played with him, and reveled in every minute of our stay.

And then, there was Justin.

I’ve gotten better over the years at somewhat disconnecting from his angst at times, because if I hadn’t, I might have drowned in it. I’ve learned to identify which reactions are an offshoot of autism for Justin, and which are simply the kvetching of a boy who’s bored and would prefer to do something else. The latter, and sometimes the former, are generally not tragic. I’ve figured out how to redirect him most of the time, to cajole him to stay at the beach more than seventeen minutes, or convince him he must indeed stay at my sister-in-law’s for Thanksgiving dinner. As he’s grown older it’s become easier to witness his unhappiness, particularly as with maturity (his, not mine), more options to rectify each situation have been unveiled.

But what I witnessed with my son this past weekend was no cousin to kvetching. It was pure, and unadulterated, suffering.

I should mention at this point that the home where we stayed could not be more welcoming to children. It was important to my friend to create a haven through which her kids could entertain, and they do this very well. Their house has been a sort of sanctuary for us, an “anything goes” locale, which is a treasure in a home where autism does not rule. If there was anywhere on earth Justin could have felt comfortable to reside other than my mother’s, this was it. And no matter what we tried, it simply wasn’t enough.

For the twenty-odd hours we were there that he was conscious (I counted) he cried, exhibited OCD-like behavior I hadn’t seen since his last serious illness, and he paced. His was a body in perpetual motion, unable to self-regulate, frantic for escape. I literally watched my son retreat into himself, with sporadic attempts at connection with those around him. He was completely and utterly bereft at having to relinquish his routine.

I couldn’t help but be struck by the dichotomy of the situation. One boy being cared for mostly by other children, out of my sight for hours (!), and perfectly safe. One boy who would literally have done anything for a room with carpet the color of sand, and stars shining from the ceiling. Often I find I’m immersed so much in our version of “normal”, that I forget just how different Justin’s childhood experience truly is from other kids.

This weekend, I was not-so-gently reminded.

Of course, it all worked out in the end, because truly, there was no other option. Justin woke once in the middle of the second night, but as I held my breath he heaved his body up, saw that his mother was next to him, and thankfully immediately slid back into slumber. We were able to make the trip home on Monday, a three-and-a-half hour journey that included my first ever solo pit stop with both of my children. Through sheer boredom and a desire to banish children’s tunes from my CD player I even began teaching Zachary French, and I now believe he is more fluent than I’ll ever be again. After inching through the streets of Princeton I learned that Zach would like to attend that institution (“it looks like a castle, Mom!”) and made a mental note to add calculus and Mandarin to his curriculum. It was a trying voyage but we made it home, and Justin’s joy was beautiful to behold.

Of course Zach immediately threw a semi-tantrum and demanded to return. Seeing as how my friends had once contemplated a fourth child, it was tempting.

We’ve all recovered by now, but I realize I have some planning to do. Through hard work and sheer tenacity (infused with a healthy dose of desperation) we’ve conquered Justin’s aversions to eating, sleeping, potty training, and refraining from expressing his displeasure with teeth marks. I’ve got my sights on Disney for next year, and of course that whole “he needs to live somewhere else someday” issue forever looms over my head. We’re going to have to teach my boy that no matter where he rests his head at night, at least for now, he’ll eventually return home again. It seems my next battle is at hand. Thankfully, with things going so well here, I think I’m actually up for trying another sleepover, someday.

As long as it’s not tonight.

November 5, 2010

Fear of Flying

Posted in My Take on Autism tagged , , at 6:11 am by autismmommytherapist

“GET IT OUT!!  GET THE FLY OUT!!!  GET IT OUT OF THE CAR!!”  I could hear his screams from the barn, know even though he is intensely close to his father that my youngest needs my embrace to feel safe, requires his mommy’s hug to save him from his demons. I won’t be able to protect him this time however, as Justin’s horse back riding lesson has just concluded, and I need to pay, get my eldest child on the potty one more time, and usher him out of there. I rush things a bit, and Justin graces me with an annoyed look as if to say “where’s the fire?”, but I continue to hurry him along anyway.

We finally conclude our chores, but in the last few minutes Zachary’s pleading cries have ramped up considerably. I imagine my husband has released him from the bondage of his car seat, and is trying unsuccessfully to calm him down. Justin and I finally make it to the car, and before me I see my three-year-old, trembling, completely in the throes of a total meltdown. Tears are running down his face, snot snaking into his mouth, and his entire body is wrapped so tightly around my husband’s large frame I’m not certain how Jeff is still breathing. Zach sees me and launches into my arms as I drop our bags into the dust, and I urge Jeff to make sure Justin doesn’t run into the middle of the parking lot. He is shaking, my son. He is terrified. Five minutes into what I’d hoped would be the sanctuary of my arms, he is still inconsolable.

I know, with utter certainty, we have entered a new era with Zachary’s breed of autism.

Two years ago this month, my husband and I watched in horror as our youngest son’s words, personality, and the essential essence of who he was vanished before our eyes, simply disappeared following two back-to-back illnesses over the course of a few weeks. We were terrified, uncertain whether or not he’d lose all capacity for speech, whether he’d ever resume saying “mama” or “dada” again. More importantly, we feared the permanent absence of his spirit, the light in his eyes that let us know he loved us, and allowed him to know he was loved in return. For months he was completely devoid of personality save for a few remnants of his former self, the last vestiges of what made him Zach. We didn’t know if he would get better. We didn’t know if he would get worse.

All we knew for sure was we would have to wait.

Wait we did, and in the end, we were rewarded for our time, although I cannot say we were patient. Over the course of the next year we watched him regain his vocabulary and expand it, transition from one word commands to two-word phrases, and eventually regain the absolute luxury of full sentences. We rejoiced as he remastered lost skills, pointing to desired objects, summoning us with words not with cries, clapping in delight at a game or mere eye contact with a loved-one. He was altered, yes. He struggled at times with basic concepts. His easy-going personality was replaced by a far more cantankerous one, which his father and I had to accept. He was, a good part of the time, challenging.

But he was back.

And I’ve known, in the year since we regained the core self of our son that the battle may have been won, but the war wasn’t over. I knew the myriad symptoms of autism could still display themselves in our child, that rejoicing in his happiness, that letting down the gauntlet of worry, was premature. I took pleasure in the return of his joy, but somewhere in my soul I hunkered down for what was to come, what I knew inevitably would arrive.

It’s here. My son is riddled with anxiety, held captive by fear. And I’m afraid our presence, our tenacious adherence to routine, our collective love, will not be enough.

The past few months I’ve watched him develop an almost pathological fear of flies, bees, and insects of any kind. For most of September he was too afraid to exit our house and attempt a trip to a playground, much less blow bubbles in our backyard. He has shown his newfound fear of the dark, certain foods, and his brother, the latter who while not really interactive with him consistently, at the very least rarely bothers him. Despite the purchase of Thomas and Lightening McQueen potty seats the toilet terrifies him, and I fear a long and extended battle with potty training will ensue. For a good part of each day now, he’s just scared.

Frankly, it breaks my heart.

And I admit that I’m scared too. I’m worried that our son, who’s returned from an abyss of sadness, will be crippled by this fear. I’m concerned that all the progress he’s made will be overshadowed by being afraid, that this emotion will be his constant companion in life, will prevent him from sampling some of the pleasures his parents have been so fortunate enough to enjoy. I am afraid for him because I’ve seen it happen in children I know, heard the stories of how it limits their lives, and at least for one of my children, I wish unlimited frontier. I want him to have choices. I want him to walk through his day confident, receptive to the surprises with which life will ultimately gift him. I just want him to be happy.

And I wish, for the millionth, trillionth time, that somebody would please just tell me how this all ends.