July 27, 2015

Lucy’s Amazing Friend

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 11:51 am by autismmommytherapist

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I don’t read a lot of books about autism.

This may shock some of you as I write about autism, and live and breathe it at home. The truth is I did read a lot of books about the subject when Justin was first diagnosed, then gradually turned to the internet for articles. It wasn’t until my second son, Zachary, was diagnosed with high-functioning autism that I started to look for appropriate literature for him that portrayed autism in a positive light. I found a few books (I Am Utterly Unique by Elaine Marie Larson comes to mind.) Yet I am always on the look-out for another piece of writing that celebrates the positive elements of autism, as well as the ways knowing an autistic individual can have a positive effect on a child or adult.

Last week I found just that piece of writing.

Stephanie Workman, the author of Lucy’s Amazing Friend, contacted me about reviewing her work, and after communicating with her via email I admit I was looking forward to a read-through, despite the craziness of summer schedules chez McCafferty.

I am happy to say I was not disappointed.

Lucy’s Amazing Friend is about a young girl who is curious as to why Daniel (an eight-year-old boy in her class) appears not to like her, and seeks out her teacher to find out why. She is told the boy has autism, and with her query as to what exactly constitutes autism, Lucy’s journey to both understanding and embracing the disorder begins.

The story was very realistic to me, and in no way suggests that Daniel is typical of every child with autism. The book presents several scenarios which address the hallmark characteristics of autism in a non-sterotypical way, and progresses through a variety of events where we see both Lucy and Daniel grow as individuals and within their relationship. I came to like both Lucy and Daniel very much by the conclusion, and am confident my own eight-year-old with high-functioning autism will feel the same way.

The beautiful illustrations draw the reader even farther into the story, which I feel could be a perfect introduction to autism whether or not someone is familiar with autism spectrum disorders. I feel my son can learn even more about individuals who dwell on the more severe end of the spectrum through this book, and he lives with his elder brother who has autism also.

I believe this work is a must for all libraries, and schools as well. I’m looking forward to owning my copy and sharing it with Zach.

And I commend Ms. Workman for creating one more tool that helps demystify autism.

Lucy’s Amazing Friend can be found for $10.99 in paperback and for $3.99 in Kindle. Copies can be purchased through Amazon, Barnes and Noble and Piscataqua Press.
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July 20, 2015

Happy

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:50 am by autismmommytherapist

Summer 06 008

The conversation swirls around me, the ebb and flow gifting me snapshots into families’ lives as I sip my frappacino. I’ve taken ten minutes to breathe at our neighborhood Starbucks, kept my phone in my purse, determined to take an unplugged time-out. The end-of-year fracas always seems to take me by surprise even after almost a decade of school-aged children, and I need to recharge.

Thank God for whipped cream and caffeine.

I’m seated next to two women, and their words wash over me as I unintentionally eavesdrop. There is discussion about their crazy baseball schedules, summer camps, moving on to middle school. As I listen it is apparent their children are typical kids for even “friend drama” is a topic, and I smile as I remember my experiences with my fifth grade students, the make-or-break friendships that so often caused elation or despair. Everything they speak of is “normal” for most tweens, a staple of a typical child’s life.

And none of it applies to my son Justin.

My twelve-year-old boy has severe autism. There are no organized sports for him, not because they don’t exist, but because he’s shown as much interest in sports as I do for spending a day at the DMV. Although there are local camps for him, this year they could not open due to low enrollment, so my boy will have his fun in summer school.

There isn’t any friend drama because he doesn’t have friends. Trust me, we’ve given playdates a try. They’re just not his thing.

Justin won’t have the “normal trappings” of an average tween. As he moves into adulthood he won’t drive a car, or go to a prom. College is not in the cards, nor a spouse or partner. He will always be dependent on others’ care, from birth until he draws his last breath. He will never have a typical life- if such a thing even exists.

But here is what Justin will have.

An incomparable education from dedicated professionals whose greatest delights are to see him meet his goals and smile.

Parents who champion him every step of the way, eager to attack each new challenge and watch him succeed.

A little brother who considers him his best friend.

An extended family who “gets” him.

A thirst for knowledge.

Irrepressible joy most days, from the moment he wakes until the moment he snuggles into my lap at night for his story.

And it’s that last thought that stays with me as I sip longingly at my rapidly disappearing beverage. After years of insomnia, meltdowns, sensory issues, feeding issues, and a general discontent with the world at large, we have come out from the darkness into the light. My son, my severely autistic, mostly non-verbal son, is happy. On most days he is genuinely, utterly, filled with joy. A joy of his making, devoid of my narrow parameters of what constitutes a good life.

My boy is happy. It’s not everything.

But God, it helps.


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July 13, 2015

Progress

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:48 am by autismmommytherapist

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A seagull swoops down in an arc too close for comfort, and I automatically step closer to Justin as we make our way down the boardwalk, ready to fight the bird for the pretzel piece he has in his hand. The “airborn rat” as I like to call them leaves my son alone and flies off to brighter conquests, and I relax my pace a bit to allow Justin’s two “on-call BCBAs” to catch up to us.

Yes, his private autism school has Board Certified Behavior Analysts who make free house calls. Have I mentioned lately how much I love his school?

As always our conversation steers toward Justin and his progress, and I admit to our companions that I almost felt guilty booking them in this four week arc, as my son is doing so well at so many of the excursions that used to be so challenging for us. They remind me there is always room for improvement, and I smile, because in the world of ABA there always is.

Justin pulls ahead of us and I scramble to catch up, leaving our two therapists to talk amongst themselves. It is one of those gourgeous days at the Jersey shore, cerulean blue skies with just a powder puff of clouds, and a strong enough breeze so that I don’t sweat. I’m trying more and more lately to live in the present, so I relegate thoughts of laundry and dinner to that shelf in the back of my mind where unpleasant things like chores reside. I think back to when we first walked these boards nine years ago with a stroller and then three-year-old Justin, and I marvel at how much has changed.

He has grown up, my boy. I have a twinge of both regret, and honestly relief as well, at how fast it’s all gone.

Nine years ago I’d come laden with both dread and a stubborn optimism to this Jersey shore enclave, adamant that my son get out of the house. I harbored hope he’d eventually love the beach as much as I do, knew in my soul we had to try these trips while he was still small enough for me to manage him by myself. Our first summers here were frankly, just work. My small son abhorred lines, and let me know this with his frequent pinches and bites, the scars of which I still bear today. It was so much effort for so little joy, but instinctively I knew we had to persevere both here and other places, establish a precedent so Justin would not spend his entire childhood in our home watching Baby Einstein videos.

Yes, I know every one of them by heart.

We eventually conquered his antipathy toward waiting, but in the last few years the reinforcing call of the pretzel I always buy him took precedent over the allure of the rides, and we battled over his desire to avoid anything that twirled and replace it with a carb. I worked hard with our ABA friends over three separate summers, trying different protocols and sticking to them with stubborn tenacity. Last summer we finally got to the point where Justin will go on three or four rides first, and ingest his prize while going on a half-hour walk with his mom. My son now shows abundant delight during the rides, displaying a joy I knew he’d have if he could just relax his routine enough to try them.

I just want to say to anyone starting out on this autism journey, anyone wading in days of therapy and outings that should be fun but are just plain work, that we didn’t start out this way, me and my boy. We kept at it for years he and I, to the point where my son gladly goes to places most families take for granted their children will find amusing. I no longer have that vise clutching my chest when we go out, the worry that he’ll tantrum and I won’t make it back to our car, the fear that I won’t be able to handle him alone. Those angst-ridden days have vanished, swept up in the gentle breeze of the cerulean sky we walk through, together.

My advice to those of you just starting out with autism is to identify those things that are “musts” for you and your family, persevere with those wishes, and jettison whatever isn’t important. Ask for help. I’ll say it again- ask for help.

Keep trying, even if it seems impossible, even if your first attempt is grueling and ends badly. I will never promise anyone that things will get better, because every situation is different. But I have found over the years that even with a severely autistic kid things do eventually get easier, but not if we don’t lay the groundwork for success.

I’ll say it a third time- ask for help if you need it. Make a plan with a plan B, C, and D for any outing you want to try.

Most importantly, never give up.

 

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July 6, 2015

Permission

Posted in Life's Little Moments, My Take on Autism tagged , , at 10:19 am by autismmommytherapist

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I admit, when it comes to Justin’s childhood, I tend to go overboard.

The truth is I never want him to miss out on anything, seeing as I’m not overwhelmed by the landscape of choices he’ll likely have as an autistic adult. I like to push him a bit to at least try something new, always hoping something will click.

And so, the invitation to a birthday pool party came to pass.

My gut told me we’d drive an hour out to that army base, he’d dunk his head in once, and immediately want to leave.

My instincts told me I’d stress out about finding the pool on that vast army base (and I did.) I knew inherently that just as I have to work to keep him at our own pool, he’d probably show the same level of disinterest at this one. But in this race between my heart and my gut, my heart won, because Justin’s classmates come from all over New Jersey, and there are no birthday party invitations.

So we went. And he dunked once. And then he wanted to leave. The hostess couldn’t have been more solicitous, but when my boy wants to go, he wants to go.

And finally, in the future, I am giving myself permission to listen to my gut, not always my heart.

We’ve been doing this autism gig for twelve years now, me and my boy. Despite the fact that he only has a few words I understand his needs, can anticipate what DVD he’s requesting as if by reading his mind. I know what he’s asking for even when he can’t articulate the words well. I get my boy.

And from now on, when I know in my soul he just won’t want to do something, I’m giving myself permission to just say no.

 

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June 29, 2015

Lean In

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 8:10 pm by autismmommytherapist

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A few months ago a dear friend of mine lent me “Lean In” by Sheryl Sandberg. On the off chance you live under a rock and haven’t heard of the book, in her writing Ms. Sandberg used research to explore gender differences and offer practical advice to help women achieve their goals. The friend who lent me the book, the one who left a successful full-time career to work part-time and be home more with her children, said at one point she wanted to throw it across the room.

And while I enjoyed reading most of it, I understand that impulse too.

I worked as a full-time educator for a dozen years before I had my first child. At the time I planned on taking two years off to be with him (I was guaranteed my job back, have to love education) and then planned to return to work, after which I’d hopefully crank out another child a year or two later.

Ah, plans.

After six months of being a stay-at-home mom I began to realize something was very different about Justin’s development. We didn’t receive an autism diagnosis for another eleven months, but that entire year it was blatantly apparent to me that his differences outweighed his similarities to my other friends’ kids. I ended up resigning my position, and because Early Intervention in Virginia in 2004 was quite frankly pathetic, I ended up being trained in ABA and delivering thirty hours of services a week to my own autistic toddler for the next fifteen months.

I consider that “leaning in.”

I only work part-time now, will probably never use my M.Ed and become a school administrator as I’d once hoped. In our family my husband is the one who brings home the proverbial bacon, and since he travels often for work someone needs to be home to get the kids to school, etc. That someone is me, and due to his work schedule I often say we’re channeling 1950 here, with traditional roles that harken back to my grandmother’s day. And while I will always wonder what might have been, I’m okay with it.

And eleven years after my eldest son’s diagnosis, I am still leaning in.

Me and all the “special ed moms” I know (hell, all the moms I know) are leaning in. Whether we work or not we’re leaning in to IEPS and annual reviews. We’re leaning in to being class moms and serving on committees at school.

We’re leaning in when we take on the herculean task to find an appropriate social skills group for our high-functioning autistic children. We lean in every time we help another family with advice or a connection. We lean in with our writing, and with our public speaking to demystify autism and hopefully inspire other families. We lean in every time we come up with an educational strategy that helps level the playing field for our kids. We lean in with our late nights reading everything we can about autism. We lean in with our trips to hospitals for overnight EKGs, for seizures, for feeding issues.

Hell, we lean in with the amount of laundry our kids generate.

In all the years I’ve been home I have yet to meet a “slacker mom,” whether these women work outside of the home or within. I’ve found the women of my generation to be more accepting of each other’s choices than articles I’ve read on the subject, and that makes me glad, because what we really need from each other is support and acceptance.

We’re all leaning in- it just may look a little different from mom to mom, just as our autistic children’s outlooks may be different than ours.

And as I finish my writing today, it’s time to put that book back on the shelf and get to work.

 

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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 15, 2015

Extreme Travel and Autism

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 10:52 am by autismmommytherapist

Spring 2015 089

Every once in a while I get asked to write a piece which highlights the accomplishments of families with autistic kids.

This week I had the opportunity to do an interview for the Travel Channel about a family with an autistic son who journeyed 13,000 miles by canoe, container ship, ferry, pony, and their own eight feet (among other methods of transportation.)

They are my new travel heroes.

Bruce and Christine Kirby, a photojournalist and psychologist respectively, decided never to let having small children or autism in their family dampen their wander lust. Bruce has traveled to over eighty countries, and logged more than 2,000 days of expedition travel. Christine has explored over sixty countries with Bruce and is determined to share these memories with her children. They informed me that each journey has brought its own struggles and rewards. Their biggest adventure yet was to take their two young children, a neurotypical three-year-old named Taj, and their high-functioning autistic son named Bodi, from their home in British Columbia to Ladakh, India.

They didn’t just survive the trip. They thrived.

Being a mom of two autistic sons myself, one severely affected and one high-functioning, I had many questions. The thought of this kind of travel with a child on the spectrum seemed impossible to me. Often we struggle to keep our son Justin at our relatives’ home past the appetizers at Thanksgiving. The thought of such difficult travel was unimaginable. Christine and Bruce shared that if Bodi was severe they would not have been able to undertake their journey.

Fortunately for the Kirby family Bodi has turned out to be very adaptable, although he still underwent many of the challenges myself and many parents of severely and mildly autistic kids face. I asked Christine how they tackled changes in routine, and she replied every day although different had its own rhythm, and they tried to stick to that rhythm as much as possible. When I spoke of my son’s aversion to crowds she told me they always spent part of each day in a safe and quiet space, and brought headphones for Bodi when he needed them. When their kids had meltdowns (and trust me, their neurotypical three-year-old had them too) they made certain to find that quiet space and wait for each child to calm down.

Given that for years my severely autistic son ate three things (and they weren’t fruits and vegetables) I queried Bruce regarding the kids’ diets. He assured me Bodi was actually game to try very exotic delights, including scorpion (this would have been a deal-breaker for Justin.) After I brought up my son’s sleeping difficulties Christine and Bruce told me their sons had been sleeping in tents since they were infants and were just used to it.

Justin didn’t sleep through the night until he turned one. Perhaps I should have tried camping.

After discussing the challenges of their journey I asked them to share the surprises. One was Bodi’s penchant for being photographed while on their trip. Bruce also told me that his biggest surprise was how extreme travel taught his kids to be flexible, from the exotic foods to the missed trains. Flexibility remains one of my sons’ greatest challenges, and I suspect that’s true for many autism families. Bruce said their newfound flexibility has translated into their everyday lives.

I might have to break out that camping gear yet.

I asked what Bruce would like other autism families to know about travel, and he felt it important to say that all worthwhile travel does not have to be on such a grand scale. Not everyone can trek to the Himalayas after all.

However, Bruce strongly felt that families should not limit themselves- try to travel if you can, be open to whatever happens.

Although I haven’t applied those words as exclusively to travel as the Kirby family has done I found this sentiment to have the ring of truth. We’ve pushed both our kids’ limits, and often have been rewarded with incredible growth.

Sometimes challenging them works- sometimes not.

But at least we know we’ve tried.

The Kirbys shared their goals for their next voyage with me. Christine indicated they might next attempt Antarctica by way of South America (apparently they have great wine there,) and while I don’t envision checking out the frozen tundra with Justin any time soon, I admit after speaking with both Kirbys I felt quite inspired to venture out of our comfort zone. Our family is attempting Disney again in the fall, and I must remind myself to let go of travel-associated fears and enjoy the moment. Justin needs to be brought out of his safe cocoon- he will be asked to do that many times when I’m no longer here. In the end, many of our excursions may not work, from a turkey dinner to the most magical place on earth. But we’ll never know unless we try.

And I can’t wait to see where the Kirbys go next.

“Big Crazy Family Adventure,” premieres Sunday, June 21 with back-to-back episodes at 9:00 p.m. & 10:00 p.m. ET/PT on the Travel Channel. The series is comprised of nine hour-long episodes.

http://www.multivu.com/players/English/70380510-travel-channel-big-crazy-family-adventure/


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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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June 1, 2015

Birthday Joy

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 1:04 pm by autismmommytherapist

Spring 2015 100

It’s a pretty tableau. My son sits among strewn tissue and wrapping paper, claiming his prize, his birthday presents. I watch as my husband places his gifts into outstretched arms, see my son eagerly tear apart the carefully taped paper I so lovingly adhered for him. He frees the toy from its constraints, and I sit back in my chair to take a picture and capture the moment for all eternity. I look through the lens and prepare to click.

Then I see him smile.

It sounds silly to devote a post to a child smiling at his birthday presents. But for more than a decade my son has approached his birthday, and almost everything typical people deem “fun,” as a solemn ritual, a task to be organized.

Generally it is difficult to even get him to finish unwrapping his take- I’m usually going up against his OCD, his need to organize rather than unwrap.

But tonight is different. Tonight, he shows joy.

And as I watch him exuberantly rip off paper and dive into bags I allow myself a moment to revel in his glee, and put the camera to the side. I think about how grateful I am that he’s demonstrating his joy, because so often in situations I think will make him happy I’m left guessing, wondering if he’s truly enjoying himself.

Tonight I don’t have to guess.

He treats each gift with a mixture of awe and amazement, then wraps up his endeavor with his lyrical laugh, and bestows a huge hug and kiss on his mama.

He loved tonight. For once, I got to know that he adored a timeless ritual that most people take for granted their children will love.

And I join him in being happy.

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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

Spring 2015 150

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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