July 28, 2014

Nineteen Words

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 11:04 am by autismmommytherapist

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“Come here Justin” I say quietly, and as always my towel-clad boy obeys, happily sliding into my lap for his post-bath cuddle.  We have a routine for our bed-time ritual that we adhere to religiously, and I can tell my son enjoys the familiarity, smiling at each step in our path to bed. Tonight however I’ve decided to deviate just slightly from our norm, as I want to try something different within our usual arsenal of me saying the coveted nineteen words he’s so recently acquired, then waiting eagerly for his response.

Tonight I simply hold up the word list, and wait.

He looks at my mouth curiously, waiting for those hard-won words to spill forth, but for once I just point at the list.  Justin regards my outstretched finger for a good thirty seconds, then I swear I see a slight grin slide across his face as I listen in amazement.

 

“Mama”

“Dada”

“Hop”

“Pop”

“Mop”

“Top”

“Zach”

 

Ten years ago we were told if he didn’t speak by the age of seven he probably never would.

We heard his first coherent utterances at ten.

 

He takes a deep breath and shifts slightly on my lap, then forges on.

 

“Help”

“Ball”

“Apple”

“Bubble”

“Eat”

“Door”

 

Ten years ago we were told there was a good chance he’d never read.

We watched him master his first sight words at three.

 

Justin seems to gear himself up for his finale, not the slightest bit daunted by the fact he’s facing new words he’s just learned this week.

 

“Bed” (a favorite)

“Boat”

“Bus”

“Boot”

“Bat”

“Bee”

I can feel his focus shift as his eyes slide away from the paper I’m clutching.  As I balance my boy I sense the display of his newfound skill is over, and I see him eyeing his toothbrush as he scoots off my lap.  It’s a momentous moment this, one I want to savor as I think of all the “can’ts” and “nevers” I was told or read about a decade ago, many that sent me hurtling toward despair.  Justin may never have conversational language, may never even use a technological device to solicit more than his basic wants and needs.

But no matter what, he has this.  He can read to his mama out loud.

And I have a reminder to always push him to be his best self.

Nineteen words.

 

 

 

 

 

July 21, 2014

The Little Things

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:00 am by autismmommytherapist

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I am, as they say, just a tad overwhelmed.

 

I always promised myself  I’d “tell it like it is” here, and I’m doing so today.  We’re into week six of summer chez McCafferty, and both kids have been experiencing some rather daunting issues.  Justin’s stomach has been plaguing him off and on for over a month, forcing us to consider diet changes and reinstitute scheduled potty breaks we haven’t had to do for years.  We’ve also had to witness tremors that aren’t seizure-related halt him in mid-stride, which are agonizing to watch.  His “people” are on the situation, and we’re exploring med changes and have had tests done to see if we can figure out what’s going on.

 

The truth is sometimes he’s suffering, and I hate it.

 

After a six-week stretch with Zach this spring that made me eternally grateful for the invention of wine we finally struck gold with a new medication, only to have it render him an insomniac and throw us back to the drawing board, which is where we now dwell.  Considering how boring I am in my need to sleep more than a few hours a night things have been challenging (and mommy has been very, very grumpy.)

 

And yet, it’s the little things that get me through.

 

In the midst of the chaos there is this.  My youngest son completed two weeks of acting camp with only one brief meltdown, enabling him to perform as a dinosaur, a dad, a cat and a “guido” respectively to a deeply appreciative audience.  He crawled into a hotel bed with my mom after their flight to Kentucky had been cancelled, and told her “it doesn’t get better than this,” accepting the drastic change in their itinerary with ease.

 

He’s mad at me if I don’t schedule multiple playdates for him a week.

 

Yesterday my eldest son got spruced up in his “fancy clothes” and performed in a horseback riding show with the air of an old pro, which was fabulous in and of itself.  Even more wonderful was the huge smile breaking out on his face as my mom and step-mom pulled into the space next to us, and his obvious pride afterwards as he gently held up his ribbon and beamed into the camera.  At our celebratory trip to Great Adventure afterwards he made it through a rainstorm and a twenty-five minute wait for a burger (just two more minutes Ma’am, really) with nary a complaint.

 

He kisses me at least a dozen times a day for no reason.

 

It’s so easy to get completely bogged down by the big things, the ones that claim a hold on your heart with a grip like a vise that will never let go.  I get tangled up in the detritus of their need, enmeshed in their suffering, and at times I lose the light.

 

But if I remember to look, there is almost always the light.

 

Sometimes it’s big and messy and glorious.

 

Sometimes it’s in the little things, the ones that tap gently on your shoulder that can be so easily missed.

 

I am so grateful there is still light here.

 

Grateful, as always, for the little things.

 

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#

 

July 7, 2014

Sensory Rebound at BounceU

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 10:25 am by autismmommytherapist

 

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I love (almost) nothing more than being able to tell you I’ve got a safe, fun, and inexpensive activity to share with you that meets the needs of autistic children.

 

Okay, maybe I love chocolate and wine more, but you get my gist.

 

I am always looking for ways to get out of my house (have been that way since I could walk, don’t think it’s going to change any time soon,) but have found that goal to be more difficult at times (understatement of the year) since having two autistic children, one on the severe end of the spectrum.

 

I believe my kids’ issues with going places often stemmed from sensory overload, which I’d try to ameliorate as best I could.  Often (especially with my oldest) I’m convinced Justin simply didn’t want to leave the house, which is fine once in a while, but not every single day.  Slowly but surely over the years I’ve learned how best to take my kids places, and the world has opened up to us.

 

I won’t lie when I tell you it’s been hard work.

 

Traditionally however there’s been one place that always worked for Justin, and that’s been places like House of Bounce and BounceU.  Fortunately we live in close proximity to both, and have taken advantage of “open bounces” periodically throughout the years.  I’ve found he often wants to leave after half an hour however, a time period I’ve felt is not commensurate with the amount of energy and packing up I had to do to get him there.  At times I’ve wondered if it’s just too much sensory overload for him, and have always dreamed of a bounce session more tailored to autistic children just to give it a try.

 

And now, that dream has come true.

 

BounceU of Eatontown is launching a new Sensory Rebound Bounce, great for autistic children.  BounceU was originated with a primary goal of providing all children with special needs a safe, fun place to have open play and/or host their birthday parties. Sensory Rebound bounce is limited to children with special needs and is hosted in a vast indoor environment, giving children and their family members plenty of room to bounce & play safely.  Eventually the goal of BounceU is to get this sensory rebound session to include an occupational therapist. My friend Francine Banick is helping run it and has asked for my input to make it the best it can be, and I’m looking forward to checking it out in the next few weeks.

 

Trust me, this is a woman who will make sure it fits our needs.

 

Sensory Rebound starts in Eatontown on Wednesday July 2nd at 3:30-4:30 and will run bi-weekly for only $9 per bouncer. Marlboro location starts Wednesday, July 9th at 3:30-4:30 and will run bi-weekly throughout the summer as well.  Parents bounce for free & siblings may also bounce for only $9.

 

Reservations are recommended, so call (732) 935-0010 for the Eatontown location, and (732) 972-6862 for the Marlboro location.

 

I’ll be checking it out soon, hope to see you there, and have a safe and fun summer!

 

 

July 1, 2014

One Hundred Hours

Posted in Life's Little Moments, My Take on Autism tagged , , at 9:51 am by autismmommytherapist

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Zach smiles up and me and gifts me his typical “I love you Mom” before he boards the bus, and I smile too and return the words in kind.  I walk up to his window and blow him a kiss (another part of our daily routine,) and he quickly sends one my way as he buckles himself in and his driver resumes his route.  I take a deep breath and send my wishes out to the universe, as Zach has some big challenges coming up, and I wish with all my heart he’ll be up to the tasks ahead.

 

I’ll know in one hundred hours.

 

It’s been a stressful two months with my youngest chez McCafferty.  In respect for his privacy I won’t go into great detail, but he’s been affected across the board, at home, at school and in after-school activities as well.  In typical fashion I’ve thrown all our resources at trying to help him, and just within the last week I’ve felt a shift back to the honeymoon days of September to April, have finally let myself relax a bit as my happy Zach returned.  It’s been awful to watch him suffer, to feel that I’ve exhausted my bag of tricks and know that in the end his return to “happyland” will be up to him.

 

Truly, for all children with or without autism, dwelling in “happy” is ultimately up to them.

 

I remember to be grateful for this respite, while silently hoping our peaceful oasis remains for the duration.  I think about the important events he has ahead of him this weekend- a crucial karate class, a Cub Scout “crossover” which will likely include a great deal of down time, two parties, and a performance in front of the entire congregation at church on Sunday.

 

Nothing like ending the school year with a bang.

 

We walk a fine line with Zach, encouraging him to be his wonderful autistic self let allowing him to engage in activities with mostly neurotypical peers, and most of the time he handles things beautifully.  It’s when the hiccups occur that I begin to doubt my choices, have to remind myself that these are things he’s asked me to do, and has subsequently reveled in his participation.  When things were at their roughest I had asked him if he wanted to quit anything and his answer had been a resounding “no,” and I’ve honored his desires.  At the same time however I want him to be successful at his activities, to be a full participant, to feel good about himself.

 

And despite a harrowing eight weeks preceding this weekend he sails through every event with flying colors.  He’s happy, but trust me, his mother is thrilled.

 

As I listen to him recite his speech perfectly before the congregation on Sunday I literally feel relief wash over my entire body, feel a sigh escape me as I watch my boy head back to his appointed pew.  I realize I’ve been metaphorically holding my breath for two months, but something was different this time.  There was a subtle shift in my perspective, nothing anyone would notice, but a shift nonetheless that has become glaringly apparent to me.  You see, this time I let myself believe that everything would be okay.

 

And it was.

 

I look at the back of my son’s blond head far ahead of me and think of his progress this year, how his karate teachers have praised him, the growth his church school teachers have seen in him since the beginning of kindergarten.  But as I sit and let our minister’s words wash over me I think of my progress too, how even six months ago I would have been a complete mess anticipating the events of this weekend following his crisis period, how I might have chosen to keep him from attending some or all of them.

 

Despite the difficulties that autism often presents us I’ve learned to take more risks with Zach, to let him stretch his wings, even to let him learn how to fail.  I’ve learned to take more chances with harboring hope as well, to have faith that one bad patch doesn’t mean a permanent path of bad.  I’ve also learned that at least in our house, challenges are cyclical.  At least right now we’re on an upswing, and by God I’m going to enjoy it, not just for my boys, but for me too.

 

One hundred hours.  It’s a victory, and I couldn’t be more proud of my boy.

June 22, 2014

The View From Here- A Call to Action

Posted in My Take on Autism tagged , , , , , , , , at 9:42 am by autismmommytherapist

I’d like to take a moment to thank my readers for their responses to last week’s piece, “The View From Here,” about the closing of two New Jersey developmental centers for disabled adults.  I’ve had many inquiries as to how to help, so I am posting a link below from the VOR.  It is time sensitive and action must be taken by Monday, June 23rd.  If you have a few moments and can write or call your legislators regarding New Jersey Assembly Bill A1110 or New Jersey Senate Bill S2198, I would greatly appreciate your help.  These two bills will slow the proposed closures of the Woodbridge and North Jersey Developmental Centers and the transition of disabled individuals back to New Jersey who now live in specialized out-of-state settings.

 

http://salsa4.salsalabs.com/o/50829/p/dia/action3/common/public/?action_KEY=11190

Thank you so much for your time, I truly appreciate it!

June 16, 2014

The View From Here

Posted in AMT's Faves tagged , , , , , , , , , , , at 8:32 am by autismmommytherapist

 

I didn’t want to write about this today.  I’ve been following the story for months, and truth be told it makes me feel raw.  It hits too close to home, takes me out of my comfort zone.

 

Which is why I have to write about it.

 

In the past few months two men with severe mental and physical disabilities died from choking after their transfer from the North Jersey Developmental Center in Totowa New Jersey to privately run group homes.  The move is part of a massive restructuring of care for disabled adults.

 

Their names were Richard Fornarotto, 54, and Steven Cortes, 65.

 

The state is closing the North Jersey Developmental Center and the Woodbridge Developmental Center in an effort to help improve the lives of thousands of disabled adults because this will help integrate them into their communitities.  Advocates for the disabled say the plans will unnecessarily disrupt lives, and many of the families are fighting the closures.

 

Nicole Brossoie, a spokeswoman for the State Department of Human Services, was quoted in an article by Stephanie Akin in NorthJersey.com as saying “there was no causal connection between deaths of residents and transfers from community centers.”  She also is quoted as saying that “the administration firmly believes that all individuals deserve to be cared for in the least restrictive environment available.”

 

Richard Fornarotto and Steven Cortes were under the care of state-appointed guardians as they had no living relatives to handle their affairs.  The two men had lived in state institutions since they were children.

 

They were two of the 639 residents in the centers scheduled to be moved from these centers to privately run group homes.

 

Cortes had lived in developmental centers since he was eight.  His care was supposed to include ground up food and constant supervision.  He choked on a sandwich while sitting alone in an office. By the time paramedics were summoned to the scene and discovered food lodged in his throat, it was too late.

 

Mr. Cortes died on May 17th.

 

Fornarotto grabbed a cupcake at Shoprite from a shelf and shoved it in his mouth while on an excursion.  When he started choking the group home staff members ran to get water and asked the store customers to watch him. State law requires staff must immediately perform CPR and call 911.

 

Mr. Fornarotto died on February 19th.

 

I didn’t want to write about all this today because the subject plays to my deepest fear- that for the thirty to forty years Justin will grace this earth without me something terrible will happen to him, and neither his father nor I will be there to help.

 

The quote that struck me the most from the article was from my friend Geoff Dubrowsky, a member of the New Jersey Council on Developmental Disabilities and a guardian of three people with disabilities, who said “These deaths sadden me but they do not shock me.”  He also commented that “When you move somebody from a facility where they have been most of their lives, surrounded by the people who know what kind of care they need, these results must be expected.”

 

He was saddened, not shocked.  That alone is horrifying in and of itself.

 

I wish I had the answers to the state budget issues and a way to ensure each autistic individual’s personal care requirements.  I don’t.  But it strikes me that when contemplating closures of this magnitude each person must be looked at on a case-by-case basis, with strict precautions put in place to prevent injury and deaths such as these if they are relocated.

 

I am left with questions.

 

Why did Cortes have access to solid food?

 

Why was he alone?

 

Why did staff members not perform CPR on Fornarotto in the store?

 

Why was he left unattended even for a brief time with total strangers?

 

My son with severe autism graduates in ten years.  Just a decade to go until Justin’s parents, who will be pushing sixty, have some difficult decisions to make.

 

As usual, I want to remain hopeful.

 

I admit however, when I contemplate his post-twenty-one future, the view from here leaves me scared.

 

Scared on a good day.

 

Steven Cortes.

 

Richard Fornarotto.

 

To both men and any remaining family members, I am so, so sorry.

 

Link to article in NorthJersey.com:

http://www.northjersey.com/news/two-deaths-in-privately-run-group-homes-stir-concern-in-n-j-1.1028426?page=all

 

 

June 9, 2014

Gratitude

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 1:43 pm by autismmommytherapist

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It seemed like an ordinary morning, Justin running excitedly to his bus, turning to give me his signature smile as he eagerly climbed aboard.  I walk around to the other side to blow him a kiss goodbye and I see his usual hint of a grin, and step back to let his personal chariot wend its way to school.  Usually I’m happy to send him on his way.  Today however my heart is heavy, as it’s the last day he will ever have his beloved teacher of four consecutive years.

My son will be deeply sad by this monumental change.  I am certain I will require therapy.

My eldest son Justin, who has severe autism, has had a private school placement since he was seven years old.  It was a difficult decision for me and his father to make as we knew this would preclude him from having interaction with neurotypical peers.  In the end however the small teacher/student ratio, the consummately trained professionals and intensely devoted staff helped tip the balance for us to pursue a private placement.

Jusitn has grown and thrived in this environment. He has begun to master simple math problems, reads beautifully, and he spells like a bee champion.  Most importantly however many of the behaviors he began with years ago have abated, predominantly the pinching, pushing and crying that signified his deep frustration with the world around him, or his dismay at not getting his way.  Justin is now a willing and eager student, and works hard to please all the staff who tend to him.  He is beloved at the school, always quick with a hug or kiss of gratitude.  He is happy, safe and successful, all the things I wished for him when he was in my womb and I had no idea how his life would unfurl.

And I owe so much of Justin’s joyful ebullient soul to one woman and the bevy of paras who have worked so diligently with him since he was seven years old.

I am confident that in two weeks when the new school term commences in July he’ll have an equally fabulous educator, one whose passion is helping autistic individuals reach their full potential.  I am certain I’ll be writing positive posts about his future accomplishments, his successes and great strides.

But right now I’d just like to give thanks for my son’s teacher and staff.

Thank you for seeing Justin’s potential, and for always pushing him to do a little bit more.

Thank you for always treating him with profound dignity and respect.

Thank you for appreciating how hard he works at everything.

Thank you for making his school a place he loves.

Thank you for recognizing his sense of humor and reveling in it.

Thank you for “getting” him.

Thank you for sharing his strengths, not just his weaknesses.

Thank you for your constant willingness to work with me.

Thank you for loving him.

To Justin’s teacher and all the paras who’ve worked with him:

There are not adequate words to express my gratitude for your caring and compassion over the past four years.  Collectively you have Justin’s heart and mine.

Thank you.

June 2, 2014

Sleep Study/Children’s Hospital of Philadelphia (CHOP)

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , at 2:09 pm by autismmommytherapist

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Sleep, glorious sleep (or the lack thereof.)

 

I will share with all of you that for a long time I was in pursuit of this elusive dream, first with my eldest son who is severely autistic, and then with my youngest son, who is on the mild end of the spectrum.  There were many years I never thought any of us would see eight consecutive hours again, until finally both boys through a tenacious adherence to routine (and probably just plain old maturity) did learn to sleep through the night, for which their parents are eternally grateful.

 

At least, that’s what we thought.

 

I have to admit I wasn’t entirely certain how many z’s each boy was getting, so when I was approached by Dr. Amanda Bennett at CHOP through the Autism Treatment Network about participating in a sleep study, I was thrilled.  It seemed there was a way to find out for sure if all our hard work was really paying off for the boys, and I couldn’t wait to participate.

 

Our “investigator” is Dr. Margaret Souders, PhD and CRNP, who called me about participating in a study funded by the DOD whose goal was to see if kids with ASD sleep better with a home-based program adjusted to their individual needs.

 

It sounded like heaven to me.

 

Dr. Souders told me that studies have shown that up to 66% of autistic individuals have sleep problems, and that those problems are often linked with anxiety and hyperarousal issues.  Apparently we all need a relaxed heart rate to sleep, and people on the spectrum often have a difficult time bringing down their heartrate.  By measuring how much a participant slept the hope was to create a sleep protocol tailored to them, so they (and their tired families) would eventually sleep longer and better.

 

Forty families are participating in the study along with ours, and the study itself will take approximately eleven weeks to conduct.  Participation involves filling out a medical sleep history, several questionnaires, an interview with Dr. Souders,  several home visits, and a daily sleep diary for both kids.  The really cool part was that each child wore an actigraph, or a small watch-sized computer that measured their movements at night for several weeks so that we knew down to the minute how much they were sleeping, and how long it took for them to put themselves back to sleep if they awoke.

 

If you’re thinking “my child will never wear it,” trust me, that was my first reaction too.  The actigraph was sewn into my one son’s pjs, and into a t-shirt for my other, and neither complained a bit.  According to Dr. Souders 97% of the kids in the study have worn the actigraph without issue.

 

To my absolute delight we found that Justin, my eldest, was sleeping almost ten hours a night, with infrequent wakings after which he always went back to sleep.

 

After years of struggle, that knowledge felt like winning the lottery.

 

I did discover however that my youngest son was having enough trouble falling asleep at night to qualify as having insomnia, so we needed to take action with him.  We have now changed up his routine.  We put him to bed later now, give him a hotter bath and a massage (I know, there is nothing we won’t do for our kids,) and rock him for a while before he attempts slumber.  I got back the results from the actigraph the other day, and our work paid off.  While Zach still isn’t getting as much sleep as Justin the quantity has increased, and he no longer fits the criteria for insomnia.

 

Victory is sweet.

 

Dr. Souders’s ultimate goal is to train occupational therapists, nurses, and BCBAs to go into the home to help create individualized sleep protocols, and I am certain with the findings from this study she will be able to realize her dream for families.  She strongly feels that while parents need to do some work to help their kids, that practitioners must meet families more than halfway.

 

And in this community which is so devoted to its kids, I’m certain she will find many willing participants.

 

 

If you’re interested in participating in a sleep study, please contact Dr. Margaret Souders at (215) 898-1935

 

 

 

 

May 28, 2014

Just Horsin’ Around

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

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Six years ago this fall I took my then five-year-old severely autistic son to a POAC (Parents of Autistic Children) event at Rein Dancer, a farm which provides a therapeutic horseback riding program for riders of all disabilities.  I confess I mostly attended to support POAC, as Justin had never shown any evidence of liking animals, and I had a sneaking suspicion he would view riding a horse with as much excitement as eating vegetables (it turns out I was right.)

 

So despite his disinterest in furry friends my mom and I got him in the car and took him out to western Jersey one fall afternoon, and sat him on the gentlest horse of all time with a good deal of cajoling and prodding.

 

The entire ride lasted eight minutes and he tried to dismount three times. I sensed “jockey” was not in his immediate future.

 

Still, some instinct inside of me told me to try again with him, a gut reaction to this day I’m grateful I pursued.  I signed him up for lessons, schlepped him out there, and within a month or two he was enraptured with riding, “eeeing” his little heart out on his steed for a day.  He liked it so much I even found him a therapeutic riding camp he’s attended most summers since, where I discovered something shocking about my son.

 

It turns out my boy loves to perform.  Frankly, he’s quite the ham.

 

On the last day of camp every summer the riders put on a show, the duration of which my son beamed, laughed, and made intense eye contact with me and my mother the entire time.  I had rarely seen him this happy for so long a period, and decided to pursue opportunities for him to perform in other venues throughout the year.  After much research we ended up at Copper Hills Farms in their therapeutic division (Happy Tails run by Lauren Sgroi,) and this past weekend he was able to perform in his first show, all decked out in his brand new riding attire, ready to go.

 

At first, I thought it was going to be a disaster.

 

Justin was agitated from the get-go, sensing that today would be radically different from his general lesson days.  When it was time for him to mount he first rejected his helmet, then finally acquiesced and allowed me to lead him up the stairs to his ride.  He thankfully got on, then proceeded to make his displeasure known for about a third of the show by whining profusely.

 

Then, about ten minutes in, he simply stopped.

 

My aunt and I watched as my boy straightened up in his saddle, took a new interest in his surroundings, witnessed the slightest smile spread across his face.  He did all his trainer asked as she put him through his paces, even answering a question from the judge (Can you say “hi,” yes my son certainly can) that eventually earned him a blue ribbon in one of the three categories.  I saw my son slowly take pleasure in the event, watched as yet another new world opened up to us, one outside of the confines of our home.

 

I admit, by the end I was already thinking ahead to the next event.

 

Eventually the show ended and the riders were led up to the fence for their photo opp (you know I wouldn’t miss that,) and I could see my son was eager to conclude his participation in the program, so we quickly led him back to the barn and freedom.  As we walked back to the car I asked him if he had fun and he shook his head in a slight “yes,” a response for which on many levels I was grateful.

 

I smiled at my aunt as I put him in the car, then backed carefully into the dirt road leading us home.  I looked in my rearview mirror to see Justin rocking out to Stevie Nicks (he is so my child,) and made a mental note I knew for once I’d remember.

 

Justin’s made such progress.  Don’t be afraid to try new things.

 

Hell, just don’t be afraid.

 

And as we pulled into the driveway to conclude part one of our day I let the gratitude wash over me, coupled with a never-ending sense of pride for my son.

 

 

 

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