September 12, 2017

Dear Readers

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

A few weeks ago I was fortunate enough to have a piece I wrote, a letter to Justin’s future caregiver in a group home, published on the Autism Speaks blog and highlighted in their social media. In it I wrote about my boy’s strengths, weaknesses, and his general adorableness (making that a word). I thanked his future caregivers for their patience and compassion, let them know how much he had been loved during my lifetime. I sent it to my contact at Autism Speaks with the hope that they would choose to publish it, as I think talking about the future for our more severely autistic kids is really important. The truth is though, I almost didn’t send it, and I’ll tell you why. You see, every single time I write about my son’s life after my death, which I believe will transpire in some sort of group home, I get the comments.

And I will tell you readers, some of them are not kindness personified.

I could tell you how this mean commentary about putting my son in a group home (which they never seem to get hasn’t happened yet, he’s only fourteen) ruins my day, or brings me to tears, or sends me downstairs for more chocolate (that last part is always true). But honestly, I’ve been writing this blog for seven years, and I’ve developed a thick skin. I’ve survived a comment about how I could possibly think to “out” my mildly autistic son by bringing him to an autism surfing event. I’ve been told I’m awful for predicting my non-verbal, severely autistic teenaged son will never marry or live independently (please, prove me wrong there, I’d be thrilled).

I was also asked recently if I’d ever heard of Temple Grandin and I shouldn’t give up hope my son wouldn’t eventually end up like her.

Okay, not mean, just incredibly annoying.

I can honestly tell you at this point I don’t care if perfect strangers choose to judge me about where my son will live after his parents’ deaths, and quite possibly, years before that. Most of the time the “judgers” don’t even have a severely autistic child, or are the parents of a “Waltonesque” family where their child’s seven siblings will share in taking care of their brother or sister after their parents’ demise.

And in that instance, I say more power to you, and you should count yourself fortunate. Many of us don’t have that pretty option. I can tell you I don’t.

My severely autistic son will never live with my youngest son, but not because he’s autistic too. Zach, like his brother, is doing beautifully out in the world, but I can you he’s already told me he wants to visit Justin but not live with him, and I know I need to respect his wishes. I’m sure some of you are thinking he’s young (ten) and will eventually change his mind, but I can tell you he won’t. He’s a bright boy and can tell his big brother is a lot of work, and doesn’t see how caring for him full-time will play into his desire to have five kids. Quite honestly, I don’t see how that would work either. We need to know where he is at any given moment in our house, and he needs frequent supervision. He is still on a potty schedule. He has gotten out of our house alone twice, so we need to constantly know his whereabouts.

Justin is a full-time gig. Logistically, I don’t see how living with Zach and the family he’s wanted since he was five would work.

For many of us parents of severely autistic children, a residence for them outside of our homes will eventually be our only option. While I respect everyone’s right to comment as they see fit on either my blog or the Autism Speaks blog, I’m hoping people will read this and think for a moment before they write something derisive about group homes. Truly, I’m not asking this for me. Rail away at me on my blog, get out your aggressions if you choose.

I’m not going anywhere.

But please, before you write a derogatory comment on the Autism Speaks blog about a parent’s choice of living arrangements for the child they desperately love and perhaps wish they could care for until he or she dies, stop and think. Deciding how your severely affected child will live out their last three or four decades without you is difficult (okay, excruciating) as it is. Someone reading a commentary on group home living may just be coming to that point where they can no longer care for their child. Perhaps they’re a single parent, or ill, or just too old to do it anymore. More than likely it is a heartwrenching decision, made with more than a few sleepless nights. Please, think before you write and don’t make it even more difficult for them.

We parents of autistic children need to spend our time building each other up, not breaking each other down.

Thank you.

 

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April 2, 2016

World Autism Awareness Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 7:21 am by autismmommytherapist

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Today is the tenth official World Autism Awareness Day, and as I watch my eldest son with severe autism rearrange his bucket of toys for the zillionth time I can assure you, I am very aware of autism.

The great thing is though, the rest of the world is now too.

In past years I’ve written about my youngest son’s burgeoning awareness to his own form of autism, and about moving from awareness to acceptance, and yes even to celebration of certain aspects of my boys’ disorders.  I’ve also written about amazing advocates in our area, and talked about my own advocacy, and what it means to me to “light it up blue.”  I’ve talked about how far the boys have come in the twelve years since my eldest was diagnosed with severe autism, discussed their progress as well as the fact that despite two autism diagnoses in our household, we do indeed have a happy family.

But I’ve never spoken about one entity that helped us get to that peaceful place.  And that entity would be Autism Speaks.

Many years ago we were desperately searching for a practitioner who could help us with our eldest son’s aggression, and failing miserably in this endeavor.  One day my mom came across an article about Autism Speaks’ ATN, or Autism Treatment Network, a program affiliated with CHOP (Children’s Hospital of Philadelphia) not far from where we live.  Within minutes of meeting Dr. Amanda Bennett we knew we were home, and we’ve been using her services (and those of Lindsey Widmer) ever since.  It was the first place we’d been to since our visit to Kennedy Krieger years ago where we felt our concerns were listened to, were validated, and where we actually walked out with a plan of what to do next for our boy.

Needless to say, our gratitude toward Autism Speaks began that day.

We were again beholden to the ATN a few years later when our youngest son decided sleep was for sissies, and we were able to engage the services of an ATN nurse, Margaret Souder, who made house calls (!) and helped us to get our boy’s sleep schedule back on track.  We’ve followed her instructions for years, and now our boy gets ten hours of shut-eye about 85% of the time (yes, I’ve tracked it, I’m that A-type,) which has benefitted both him and the rest of his family greatly.

His momma needs her shut-eye too.

Autism Speaks has helped us financially too.  Their initiative to mandate that insurance companies must cover autism therapies like ABA helped us when we relocated to New Jersey from Virginia.  During Justin’s early years we had spent thousands of dollars on his in-home program because Virginia only offered us six hours of occupational therapy and two hours of speech a month, all with more than a year to go before Justin would be eligible for a school program. We were on the hook for all of his ABA services, most of which I delivered myself so we wouldn’t go bankrupt.  Since we moved up north all of his therapies have been either fully or partially covered, a fact for which we are grateful too.

Autism is expensive.  Having coverage for necessary therapies is invaluable.

And last, but definitely not least, Autism Speaks is a large part of a movement that has made autism a household word, which has opened worlds of awareness and acceptance, has made navigating the often difficult waters of autism easier for this family.  I saw the tide start to change ten years ago when I began talking about our son’s diagnosis, saw without fail the compassion and understanding in people’s eyes when I sometimes had to explain our boy’s behavior in public.  I am certain some of that comprehension came from Autism Speak’s global approach.

So today, as I make sure my blue porchlight is still working, I just want to take a moment to say thanks to Autism Speaks for all they’ve done for my boys.  We have our struggles here still, and I anticipate we always will.  But in general my two sons are safe, happy, and productive, three things I made a priority for them before they were even born.  I am grateful to Autism Speaks for helping this family get to a place of peace.

And my wish for you is that you get there too.

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June 22, 2015

Ten Things to Do After Your Child is Diagnosed with Autism

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 6:47 pm by autismmommytherapist

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Last Friday I had the honor of being interviewed by Kerry Magro of Autism Speaks for his cable television show, “Different is Beautiful.” It was wonderful meeting Kerry, whom I’ve long admired, and I truly enjoyed the opportunity to talk about my writing and my life with the boys.

I love talking about them every chance I get.

Kerry asked me a variety of questions that day, ranging from how I got started with blogging to what were some of my initial reactions when my eldest son was diagnosed with autism. I enjoyed speaking about both topics, but it was the latter query that had me thinking as I navigated my way out of Jersey City and tried desperately not to end up in Manhattan.

Yes, I have a GPS. Yes, my home is in the opposite direction of New York City. No, none of that makes a difference.

After I found my way cheerfully back to the Jersey Turnpike South I allowed myself to think back over the interview, and that last question stayed with me. Frankly, by the time Justin was diagnosed I’d noticed his differences for almost a year- putting a label to them was almost a relief.

Eleven years ago nobody was diagnosing children under eighteen months- the fact that Justin got the autism label at seventeen months was an anomaly. Today however, some children are given a suspected diagnosis as early as six months; many parents won’t have a year to ease into their suspicions that their children are developing differently than neurotypical children. For many parents this label will come as a shock- perhaps their first reactions will be denial, anger, fear, and finally wondering if somehow they caused autism their child.

At the very least, most parents will probably feel overwhelmed.

There are things parents of newly diagnosed children can do in the first weeks and months that can truly help those overwhelmed feelings. Here are my top ten that I did eleven years ago, and recommend to all of you:

1) Ask for help. It may take you a while to figure out what you need, but ask for it. People will generally want to do something for your family but won’t know exactly what to do.
2) Make friends with other parents of autistic children. They will turn out to be wonderful resources, and will also provide invaluable support.

3) Find an autism support group. It may take a while to find the right fit; don’t get discouraged, keep trying!

4) If you are married or in a relationship, make time for it. You will need to support each other a lot in the first few months after a diagnosis. Make sure you get out and take some childless time for yourselves.

5) If you know you’re going to need to see various professionals for your child, make the appointments immediately. Sometimes it takes six months to get into an office. Further diagnoses may help your child get treatments or therapy.

6) If it’s too hard to tell people ask a friend or relative to share your child’s autism diagnosis with others. I did this with our second child on the spectrum, and it made life a lot easier.

7) Check out the Autism Speaks website and take a look at their tool kits. There’s a lot of valuable information there!

8) You will probably feel overwhelmed. Make lists of what you need to do and perhaps purchase a separate calendar for appointments, due dates on paperwork, etc. This will help you feel more organized.

9) If you’re ready to talk about your child but you don’t want opinions, tell people you just want them to listen. People mean well, but unless they have an autistic child they haven’t walked in your shoes. Telling them up front that you just need to vent can help.

10) Take care of yourself. Keep doctor appointments you’ve made for yourself, and carve out alone time if at all possible. You will need a break once in a while!


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June 9, 2015

Not Enough

Posted in AMT's Faves, My Take on Autism tagged , , , , , at 1:19 pm by autismmommytherapist

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A month or so ago I posted a piece on the Autism Speaks website for Mother’s Day entitled “Ten Things I’ve Learned as an Autism Mom.” The piece got a great response, with many people commenting that the fourth item on my list truly hit home. It reads as follows: “You will worry about what happens to them when you’re gone. This one you will never conquer.”

All I can say is, truth.

This next statement may surprise or anger some of my readers, but it’s my truth too. I wouldn’t change that my kids have autism. I believe at least in our case the reasons are genetic, since all of my kids have the disorder. I believe it’s a fundamental part of who they are. I’m not sure I have the right to change it.

But if I could somehow alter the severity of my eldest son’s disorder, I would.

My youngest son Zach, who is high-functioning, has mild challenges with sleep and anxiety, and moderate challenges with focus and impulsivity. I currently feel (and ask me this again down the road) that the gifts of his autism mitigate the challenges- his ability to read at three, that fact that he remembers everything, his insatiable curiosity, and his hyper-focus when fascinated by a subject. Zach has learned to embrace his differences, at present feels good about them. We focus on the positive aspects of his autism here, and so far, so good.

With Justin however, his type of autism precludes him from living an independent life. And I know I will go to my grave wishing things were different.

Over the past eleven years since Justin was diagnosed I’ve done a lot of soul-searching. When he first received the “a” label I was set on total “recovery” for him, wished for college, love, friends and a career for my boy. I wanted nothing less than an eradication of his disorder. When it quickly became clear this was not in the cards for us I shifted gears and strove for him to be at least independent, able to take care of himself after his father and I are gone.

It’s clear now that wish won’t be granted either.

Still, as time has passed I’ve come to see that Justin is happy as he is, is often the happiest person in our house. I don’t believe he wants the aforementioned things in his life- I am confident he does not know what they are. I’ve accepted he won’t have all of my pretty life options.

I’ve also accepted he doesn’t need them to be happy.

What I haven’t accepted is that the severity of his disability renders him unable to care for himself, which puts him at risk for up to forty years after his father and I are dead. This truth remains, and will always be, unacceptable to me.

In fact, it haunts me.

I shelve these thoughts most days for my sanity. The worries are always there, just looming below the surface, ready to rear their ugly heads when I least expect them. If someone were to hand me a pill that would lesson his symptoms and enable him to take care of himself one day, I’d be first in line at my pharmacy.

And I run fast.

I know some readers will think I’m horrible for wanted to change him in any way. But of my three wishes for him, namely that he spends his eighty years on earth happy, productive, and safe, the last wish trumps all.

I don’t believe even with the few medical advances that autism research has brought about that I’ll ever have the option of lessening his autism. The truth is if I want a modicum of happiness for myself, I’ll have to focus on what we have now- a happy, bright, loving child who at this moment in time is wondrously safe.

I will continue to have to learn to live with that much.

But some days, many days, it’s simply not enough.


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May 27, 2015

Autism Speaks Housing Initiative

Posted in AMT's Faves, My Take on Autism tagged , , , , at 10:49 am by autismmommytherapist

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I have a son. A beautiful, smart, kind and severely autistic son. A boy who emits volumes with his eyes, but only a few unprompted words with his mouth. A son for whom I hope to plan a future where he is cared for when we’re gone- a future where he is safe, productive, and most of all, happy.

For years I have worried about his future living arrangements. The current waiting list for residential services in my home state of New Jersey is lengthy. Where he will one day reside is something I perseverate over; I have even begun to research options in other states, and found the landscape of choices for autistic adults to be extremely limited.

Still, I refuse to give up hope. Because while I adore my son, his father and I literally can’t live with him forever. And as I watch my boy’s increasing desire for independence grow daily, I’d like to see his needs realized in a residence apart (but close) from ours.

And with Autism Speaks’ new housing initiative, I just may see our collective dream realized.

Autism Speaks has recently launched a plan to focus on adult services in several states, namely Florida, Illinois, and my personal favorite, New Jersey. These three states were selected in large part due to their respective grass roots advocacy, their budgets, and unfortunately, their long waiting lists for residential services for adults. Through Autism Speaks I found out that the focus on the adult housing component of this initiative is comprised of three parts- namely finding the funding, acquiring the right physical structure itself, and of course hiring quality service providers to care for the autistic adults themselves.

All of these goals are difficult to achieve. But I am convinced Autism Speaks is up to the challenge.

Although our family is at least a decade away from seeing Justin potentially reside apart from us, there are steps Autism Speaks recommends we and families in our situation take now to help build a positive future for our children. First is access the Autism Speaks Transition Tool Kit, a document which outlines the steps necessary to plan for an autistic child’s future after school ends. As the time for independent living draws near Autism Speaks also recommends families become familiar with service providers in their respective areas, and encourages families to ask tough questions such as what plans have providers put in place to make sure they stay in business for the long-term.

From speaking with parents who are already at this juncture in their lives I’ve been told that the families most successful in securing residential services for their child created a team. The team should consist of the parents, potentially the child’s school, and the autism agency (like the ARC or Easter Seals) providing current services for the child. Parents have recommended to me that it is helpful to become familiar with local legislators, and it is a good idea to establish a relationship with the people in local government who make the big decisions. And last, it’s been suggested to me that parents should contact other parents who have been successful in finding safe housing for their children.

As with so much in our community, parents are always one of our most valuable resources.

There is a lot of hard work for Autism Speaks ahead, but hopefully through their initiative they will be able to give families some real and positive choices. One of their goals is to chip away at the waiting lists in the above-mentioned states, an endeavor in which I am especially interested. My son is almost twelve, will be graduating in nine short years. The current waiting list for residential services in New Jersey is about a decade, which means his father and I will be pushing sixty when he graduates from high school. I’d like to see him well-settled as he emerges into adulthood, see his life continue to unfurl as one that is happy, productive, and safe.

And I believe with a lot of planning and support from Autism Speaks we can make this dream come true.

 

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March 2, 2015

Never Give Up

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 3:01 pm by autismmommytherapist

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A few weeks ago I posted a piece called “Love Letter to my Autistic Son for When I’m Gone” on the Autism Speaks website. It clearly resonated with many people, and I read every single comment on their website and Facebook page, and responded to as many as I could. The comments were both lovely, and in some instances, heartbreaking.

Many recounted their fears of what their son’s or daughter’s life would be like when they were elderly, and they themselves had passed away. One comment I read in the myriad places I posted the piece stuck out to me in particular the day the piece went “viral.” In it, the reader blessed me. Then she intimated that perhaps my son’s fate would differ from what I imagined it would be, that perhaps one day he would become more independent than I thought, which to my mind equated to “don’t give up.” I let her words roll around in my brain for a while as I tried to construct a response. Eventually, I quit.

The truth is my son is almost twelve years old. He has two words he uses independently, namely “popcorn” and “mama,” and sometimes to acquire those things he uses means other than words. He still needs help with toileting, and minimal assistance with dressing and grooming. He is one of the lights of my life, but he yet requires the almost constant supervision he needed as an infant and toddler.

One day when his father and I are gone, unless he lives with his brother, he will be in the care of people not yet born. He will never live independently.

And to me, accepting this does not mean giving up.

Eleven years ago when he was first diagnosed with autism, I completely wanted an independent outcome for him. At the time I lived in a state that only offered us eight hours of Early Intervention a month rather than the one hundred and twenty studies showed he needed if we were to attain the holy grail of independence. For almost a year-and-a-half we labored together, me and my small son, as I desperately attempted to elicit sounds from my seventeen-month-old, then two-year-old, then child approaching three. I still read those “What to Expect” books and religiously studied their milestones, often feeling despair at how much he’d fallen behind.

I don’t remember when I finally realized he wouldn’t be one of those kids who shed his diagnosis or moved to the milder end of the spectrum. It was more of a gentle dawning for me, a realization that marriage, college, and independent living were not in the cards for my eldest boy. I know I grieved for those choices he would never have, but even then I acknowledged that these were life choices I had needed to be happy. My boy didn’t. This realization helped me shelved my grief and move on to accepting his probable life trajectory- school until he turned twenty-one, hopefully some sort of meaningful employment, and a life spent living with constant support.

And I realized that shedding these more “typical” dreams is not giving up. Instead, I’m being realistic about my son’s future, and planning for it in the best way possible.

I understand what the woman in the comment probably meant. I don’t know exactly what the future holds for my child- none of us does. But the best gift I can give to him is to value him for what he can do, and plan to put the appropriate supports in place as best I can. I will always regret that I won’t be here to see him draw his last breath. In my fantasy world I live to be one hundred and twenty, and Justin passes at eighty-four, with me holding his hand as he is ushered into the great unknown.

It’s good to have goals.

Control freak that I am, I can’t make that happen. But what I can do is accept what lies before him, and try to construct for him the best life possible. A life where he remains the joyful, ebullient soul that he is. A life where he is productive, and safe. A life where he is loved the way he deserves.

A life that never means giving up.

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December 17, 2014

Kerry Magro’s “Autism and Falling in Love”

Posted in Fun Stuff tagged , , , , , at 2:44 pm by autismmommytherapist

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Today I am happy to promote a new book by Kerry Magro, author and autism advocate extraordinaire.  Kerry is an adult with high-functioning autism who has written two books to date about his experiences, and is also an award-winning autism advocate and public speaker.  I’ve had the good fortune to get to know Kerry a bit through email exchanges, and I can honestly say he is as wonderful in “person” as he is on the written page.  I can’t wait to read my copy, and recommend this book unequivocally.  I’ve included below both a “book blurb” and an “author blurb” for your perusal.  Thanks for reading, and best of luck to you Kerry!

“We are happy to share with you all that my next book ‘Autism and Falling in Love’ will be available on Amazon on Monday, December 15th! Would love for you to share and spread the word about the book this holiday season! 🙂 Thanks everyone!” Best, Kerry

Book Description: “Autism and Falling in Love” is the story of Kerry Magro, a once non-verbal autistic child who has become a successful and motivational speaker. Kerry in his last book “Defining Autism From The Heart” wrote about that autism couldn’t define him but only he could define autism. In this book, Kerry shares his experiences trying to find love on the autism spectrum and how he is now is trying define being a better partner for the people he cares for.

About The Author: Award Winning, and Breakthrough Autism Self-Advocate Kerry Magro knew early on that he wanted to make a difference in the lives of others. Kerry was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) at age 4. Growing up, he dealt with many difficulties in regards to sensory integration, motor problems, overall social interaction and communication delays. After being re-diagnosed at 5, Kerry’s future was very uncertain.

Today however, after countless hours of therapy and the support of a loving family, Kerry has conquered many of his challenges. Now 26 years old, he has completed his Masters in Strategic Communications and Leadership at Seton Hall University. Along with this Kerry is also a columnist for Autism After 16, a life coach, and motivational speaker.

Kerry has also become a tireless advocate for students with disabilities around the state and nationally. He has appeared on Emmy-winner Steve Adubato’s Caucus Education Show, “One-on-One with Steve Adubato,”, has been published in the San Francisco Chronicle and served as an advisor on the movie Joyful Noise starring Queen Latifah and Dolly Parton. Kerry who serves as a youth delegate for The United Nations, two years ago met with Senator Robert Menendez to discuss the reauthorization of The Combating Autism Act.

October 7, 2014

Sleep, Glorious Sleep

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 2:07 pm by autismmommytherapist

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Today’s post should come with a warning- it’s messy, there are no pretty vocabulary words, just truth.

My boy is struggling, and by extension his family is too.

Today, I’m just done.

Zach’s been plagued by insomnia for the better part of four months now, and since sleeplessness with a child is a family affair, his mom and dad have experienced it too. We were on top of it from the start- I enrolled him in a sleep study through the Autism Treatment Network/ Autism Speaks at CHOP (the nurse made house calls, it was fabulous.) We cut off technology after 7:00 PM.

We made his room as dark as he could stand it. We’ve upped melatonin, given warmer baths, used massage, yoga and breathing techniques to relax (all of which have worked to make me sleepy, not him.) In an act of desperation I even tried aromatherapy, which sadly my boy finds disgusting (but hell, at least I like it.)

Truly, we have left no stone unturned (and I know because I’m the one turning them.)

And I’m trying not to go to my dark place (it’s where the awful thing is PERMANENT AND WILL NEVER GO AWAY, anybody else ever visited there in their autism journey?) as it’s obviously counterproductive. Hopefully, it’s not true either. Today, as I hauled my tired middle-aged ass out of bed at an ungodly hour to deal with a tangled blanket I reminded myself that we kicked this demon once this summer, enjoyed a two month respite from seeing our child 24/7.

Today I am really up for a respite repeat.

Short of that I’m going to remind myself that so much that happens with autism is cyclical, that we’ve been through periods of aggression and insomnia and extreme OCD with Justin and have come out the other side. We will with Zachary too.

At least I’m telling myself this, because I’ve already eaten three days worth of chocolate to “wake up,” and the situation’s getting serious. The holidays are approaching after all.

The truth is I just feel so badly for him, because he’s a wreck after these nights, and I know his little body wants and needs the sleep. And since the “sleep spell” I made up for him no longer seems to be working, I’m throwing this out to the universe.

Let this boy sleep. Let his mom and dad sleep too.

And hurry up about it because I’m running out of chocolate.

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September 29, 2014

A Better Place

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 1:46 pm by autismmommytherapist

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A few weeks ago I had the honor of speaking at the kickoff for the Autism Speaks Philadelphia walk, and I thought I’d share my words from that evening with all of you. It was a great night and I met many amazing families. Thanks and enjoy!

Good evening, my name is Kimberlee McCafferty and I’m so honored Autism Speaks invited me to talk to you tonight. As a teacher I’m used to speaking to classrooms of ten-year-olds, so if I seem a bit nervous, please bear with me.

My husband Jeff and I are parents to two beautiful boys, both of whom have autism. Our youngest, Zachary, is seven and has informed me he’d like to be president one day, so please vote for him around 2048. Our oldest, Justin, is eleven and has just started speaking his first words, and forgive me for bragging, but his is one of the most affectionate souls to ever grace this earth, plus he gives the best hugs ever. Jeff and I consider ourselves the luckiest parents on the planet.

Our autism odyssey officially began in Washington DC ten years ago when Justin was diagnosed at seventeen months, but I feel it truly began when he was half a year old and started spinning everything he could get his hands upon. We were initially told his language delays just mirrored those of his father and frankly every male relative he has on both sides of his family tree, but in my soul I knew there was more.

I knew he was different. Different, but never less.

Eventually my concerns were realized when our pediatrician informed me my child had a neurological disorder by thrusting several miscopied articles with “autism” in the title into my shaking hands, then ushered me out of the room with a grim “good luck” and a hastily scrawled phone number for a developmental pediatrician.

I went home, put my son in his exersaucer, called my husband and mother, and cried. Over the next few months I shelved my grief for the “typical life” I thought we’d lead and began to embrace the one we have today.

To say this was both the most difficult and most important choice of my life would be the understatement of the last century.

Even though I’d been a teacher for a dozen years I knew very little about autism, so I did what most parents do in our situation. I went on the internet.

Big mistake.

The internet, and chat groups, told me a lot of things about autism. At the time, the concensus among many parents, professionals, and autism organizations was that if my son didn’t speak by age seven he never would. They told me my second son’s regressive autism would likely end up more severe than my first son’s type. The web told me my youngest might never regain the light in his eyes that seemed permanently extinguished following two back-to-back illnesses which seemed to claim his soul at twenty months. I was told I was only a good mother if I searched exhaustively for a cure. I was told I was only a good mother if I completely accepted my child for who he was and didn’t try to change a thing. The internet spoke of isolation, of the loss of friends. It regaled me with stories of tantrums and insomnia.

Okay, over the past decade we have battled with those last two.

Finally, stubborn woman that I am, I decided I no longer wanted to be told anything, that instead I wanted to learn.

And since ABA was not provided under Virginia’s Early Intervention program in 2004 I got trained to deliver thirty hours a week of therapy to my son for eighteen months.

By the way, I do not recommend being your child’s primary therapist if you want him to like you or you wish to retain any last vestiges of your sanity.
But far more than the dance of reward and demand of ABA, I learned how to reframe my life.

I learned, perhaps most importantly, to take care of myself and to thank God for Grandma’s babysitting stints which kept my marriage alive (hi honey!).

I learned the web was right about losing some friends; I also learned to shamelessly replace them by making friends with all of my sons’ therapists.

I learned to revel in the timbre of Justin’s “EEE” resounding throughout his school when he sees me on days I pick him up early.

I learned to overcome my kitchen phobia to make gluten-free chicken nuggets from scratch (and hated every minute of it).

I learned Zach’s bravery has no bounds, for when his dad and I told him he and a lot of very famous and bright people had autism he simply jumped up and down and was so proud to be autistic.

Then he asked for more Cheetos.

I learned that autistic people not feeling empathy is, well, crap, as evidenced by Zach wanting to save every bug no matter how small that lands in our pool.

I learned that not only were the professionals wrong about Justin not talking, but that my eldest, severely autistic son would be reading aloud his first words to me at eleven (and he’s so proud of himself).

I learned that my beautiful, brilliant often messy children shatter my expectations of them daily.

I learned never to give up trying to give them the best lives, of their own unique design, possible.

I learned, and this one was a big one for me, how to ask for help. Autism Speaks has personally played a huge role in assisting my family. They’ve helped get legislation passed in our state for autism services so Jeff and I wouldn’t go broke, and I’ve often turned to their wonderful tool kits in moments of semi or full desperation.

My two favorite ways they’ve assisted us are how we found a developmental pediatrician through the Autism Speaks/Autism Treatment Network at CHOP who could finally help us with medications, and my personal favorite, the nurse who made house calls in the study we enrolled in through the ATN to help quell Zach’s insomnia.

Did I mention that last one was my favorite?

My husband, and by extension my boys, are so grateful Autism Speaks exists. In an effort to give back tonight I’ll be donating 100% of the money raised from sales of my memoir, Raising Autism, a book about the boys and our life together. Even if you don’t want to buy the book, please stop by and say hi. We have bookmarks and they’re free.

Finally, our family, initially forged in fire, has come to a place of acceptance, and gratitude. We truly love our lives. I want to thank you for your time tonight, and wish all of you and yours happiness and peace, and a successful walk on November 2nd.

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September 17, 2014

A Speech for Autism Speaks

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 12:58 pm by autismmommytherapist

Autism Speaks Philly2

For me, last night was a little bit of magic.

Not Disney magic, or those fabulous nights when both my children sleep through the night until dawn, but magic just the same.

Last night I got to speak to autistic people and families of autistic children about my experiences with the boys, plus I got to use my book as a fundraising vehicle, which is pretty much why I wrote the thing in the first place.

Okay, the other reason was it was a cheaper catharsis than shopping, but that’s beside the point.

Last evening I had the honor of speaking at the Philadelphia kick-off for the Autism Speaks walk. About three hundred people were in attendance (since I’m used to speaking to about thirty kids at a time I frankly was in a cold sweat prior to “performing,” but I got through it), including people with autism, their families, and individuals just out to support the upcoming walk.

Melissa Zavorksi was my contact for the event, and the night ran seamlessly. Participants moved from informative station to informative station, and ultimately the night culminated in free food (yay!) and several speeches by parents and Autism Speaks employees. They were all moving and eloquent, and I was struck once again by the magnitude of Autism Speak’s commitment to the autism community, their dedication and drive to help families realize their best lives. I enjoyed every single minute of their stories.

But the person who stole the show was without question Sam, an autistic adult.

I listened, captivated by the story of Cathy Kanefsky, Vice President of Chapter Development and most importantly (according to her) mother of adult autistic twins. She shared her journey eloquently, one I felt was a great deal more difficult than mine as her sons are twelve years older than Justin, and I believe the autism landscape to have been a bleak and inhospitable place almost a quarter century ago. Cathy spoke with pride of her boys, and was able to have her son Sam come up and talk a little bit about his excitement for the upcoming walk (I’ll share with you there was some “roof raising” involved.)

It was so powerful to witness his enthusiasm, to watch him connect with the audience, to hear him speak with such grace.

And trust me, the audience loved him back.

I have to admit the best part of the evening for me was connecting with the families, hearing them share their stories about their children, and having them ask questions of me regarding mine. If I’m being totally honest my favorite encounter was with my new best friend Lakisha, who informed me “I didn’t look like I’d been through what I’d been through,” which I chalk up to a great wrinkle cream and even better genes inherited from my mother’s side.

Between her kind commentary and seeing Sam speak my night was made.

After talking at two different sessions the night wrapped up, and as my husband Jeff and I collected our gear I had a moment before sneaking one last pig in a blanket to reflect on the evening. I am so honored to have been a participant, to have contributed my story and some funding to this organization. What struck me as I met all the employees involved in putting this event together was both their zeal to better the lives of all autistic individuals and their families, and the magnitude with which Autism Speaks has accomplished just that. I am proud to have been just a tiny part of their efforts, and confident that with time they will realize their goals.

And I know this truth- than when things get tough with my eldest son, I’ll think about Sam. Sam, who connected with his peers, who has a job he’s paid for, who quite obviously delights in every aspect of his life.

This one’s for you Sam. Thank you.

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