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

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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.

December 23, 2013

And the Winners Are…

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 2:14 pm by autismmommytherapist

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I’ve been writing this blog for almost four years now, and I’ve come a long way from the days where I swore my husband made up the word “blogosphere” just to tease me. It’s been a great source of comfort to me to write about our lives with the boys, has often clarified conflicts for me, or reminded me how much progress each of my sons has made.

There was a time in the initial days I didn’t think I’d have enough to say to write one (that little thought was quickly disproved), and on most days, the writing has been a joy. My wish is that my words have brought comfort, hope, and perhaps a new perspective on autism to both my readers at Patch, and on my blog.

At the very least, I hope on occasion I’ve made you laugh.

Last week I had the good fortune of being chosen as one of 2013’s Ten Inspiring and Informative Blogs by Autism Speaks, an honor which led me to ponder what I believe my top posts are for our soon to be passing year. I’ve realized I need to look at my “best of” every December, as it’s wonderful to see how far we’ve come both as individuals and as a family in the quick passing of twelve months. I’ve selected my top five for you (I’ve saved the best for last), and hope you enjoy reading them as much as I enjoyed writing them.

As always, I want to say a huge thank-you to my readers, and wish all of you a wonderful holiday season and a happy new year!

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November 20, 2013

Disney Revisited

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

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Last week I wrote about my family’s first vacation ever, which happened to take place in Disney World. I spoke briefly about our experiences there, and talked mostly about Disney’s new Disability Service Access Card (DAS card), and how the system needs to be improved to accommodate all families with children with special needs. As I indicated last week, the new program worked for us. I am certain however it would now preclude some families with autistic children from taking a trip to Disney, or would simply make it prohibitively difficult to attend.

I’d like to share with you that I did eventually get off “hold” with the corporation and was able to speak to a live person, who actually listened to my concerns, took my suggestions, and indicated the possibility (again, I stress the possibility) of accommodations being made in the new year on a case by case basis. I’m not sure if this will come to pass, but my fingers are crossed, and yes, I’ll be calling them back down the road (squeaky wheel and all that jazz…).

So, while I wrote a lot about the new disability program last week I didn’t tell all of you much about our trip or share photos (trying to keep the kids alive is not conducive to picture-taking, had to wait for my sister-in-law’s fabulous zip file). I just want to go on record as saying I have never been more proud of my eldest son, who unfortunately caught a bug the day we left for Florida, but was a trooper none-the-less.

This same ten-year-old child who had never flown before and has spent a total of three nights away from his bed in the last seven years flew the friendly skies like a champ, and slept through four consecutive nights (a fact for which his mother is eternally grateful). Although it was quite clear he wanted to go home (grabbing my face frequently and saying his approximation of the word was a good clue) he hung in there, and when he began to feel better he clearly liked the rides, and even enjoyed a few of the attractions.

I’ll admit, he seemed the happiest on the morning I started packing, but I’m hopeful that now he has Disney in his “repertoire” he may enjoy it more when we go back, which I hope to do in a year or two. Justin was basically out of his comfort zone for five straight days, which for him is an incredibly stressful situation. He was so brave, and I’m so grateful he was, for this enabled our family to truly partake in the magic that is Disney.

I’m including a few photos of our trip. I hope you enjoy them, and if you are a family with a special needs child and are considering Disney as a vacation spot, I truly hope you can make the new system work for you, and that you have a fabulous time!
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My boy was such a trooper…

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Could I be any happier?!

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Zach seeing the castle up close and personal for the first time

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Can’t wait to go back!

November 13, 2013

Disney World, “Autism- style”

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 10:22 am by autismmommytherapist

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It’s dawn, and I can already hear my ten-year-old son with severe autism’s “eeee” reverberate throughout the house, so I hustle faster to quell his enthusiasm just a bit so my six-year-old son with mild autism can get a bit more sleep. I haven’t rested well myself and am already anxious, as this is a day of many “firsts” for the McCafferty clan. Within the next twenty-four hours my eldest son will take his first plane ride, sleep in a bed other than his own (which he has done only three times in the last seven years), and will hopefully be able to break out of his daily routine enough to learn to like Disney World.

I would be lying to you if I didn’t tell you my fingers, toes, and any extremity possible weren’t crossed on all counts.

I will share with you that I’m also worried about the two-and-a-half hour plane rides (and worried all of us, mother, father, brother and entourage) won’t sleep for one hundred consecutive hours. However, I’m mostly concerned about the new program for guests with disabilities, which I’ve heard is fraught with issues for our community.

From what I understand from representatives at Disney, as well as friends with autistic children who have previously visited the park, in the past children with autism and their families were able to gain access to any ride, any time, as often as desired, through the fast pass lane. Unfortunately, this program has since been discontinued due to widespread abuse. I have heard that some families hired individuals with disabilities to accompany them into the park in order to have access to this program. The actions of those individuals was reprehensible, and my only solace is that they hopefully are no longer able to “fake their way” into any of Disney’s rides or attractions.

Amen to that.

Overall I have to say we found success with the new plan, which required us to attain a Disability Access Service Card (DAS card) at the beginning of our trip, a card which would last for up to fourteen days, and work in any of Disney’s theme parks. We were told we could acquire the pass at Guest Relations prior to entering the park, but the line at 8:45 in the morning was reminiscent of a combination of the post office and the DMV, so we chose to circumvent that option. Instead we entered the Magic Kingdom and went immediately to City Hall, where a cute Frenchman immediately accosted us and asked how he could be of assistance.

I admit, the accent threw me for a bit.

Once I got past the “cute factor” I quickly explained that we had a child with severe autism in our family, and presented Justin for inspection. No medical documents were required (in fact, don’t bother bringing any, Disney won’t look at them due to legal restrictions). I held my breath a bit as I wondered briefly exactly how much training Pierre had in recognizing disabilities in children (no, his name wasn’t Pierre, it’s just my favorite French name, bear with me). Our Disney representative literally looked him up and down with what appeared to be quite a discerning eye, then revealed our fate- we too could be the bearers of a crisp green and white Disability Access Card. Justin was asked to pose for a picture (his disdain for this photo opp was readily apparent on the card), then Pierre filled me in on the details.

So here’s the scoop on the new card, some of which my Frenchman shared with me, and some I picked up from Disney employees at various attractions and during a customer service call. The way it works is that one member of the group physically goes up to the ride attraction (they do not have to have the person with the disability with them), and if there is a wait of twenty minutes or less, their entire entourage is granted access to the fast pass lane, with the caveat that the person with the disability must be in attendance.

If the wait is twenty minutes or greater the Disney employee took our card, wrote the name of the ride on the card, and gave us a time to return. The time we received was ten minutes less than than guests waiting in the “regular line” would have to wait. The card worked for every member of our group of seven, although I’ve been told that a larger group might not receive the same courtesy. Disney employees told us that we had up to an hour after our written time to claim our spot, although the website said “times are valid until redeemed by the DAS customer,” and since we were faithfully within the hour I can’t speak to the legitimacy of the website rule. We also were not able to “load up” on times, we had to wait until our chosen attraction was completed before we could be assigned a new one.

Finally, I was also told by the customer representative on the phone that if this hadn’t worked for our family at this time there were “no unique circumstances,” which conflicts with Disney’s website statement that “Disney… will continue to work individually with guests with disabilities to provide assistance that is responsive to their unique circumstances.”

I have to say that the system did work for our family, in part because Justin was under the weather for the first two days of our trip, and as a result was more compliant than usual. Not having to wait in actual lines was a godsend, as it enabled us to feed the boys snacks or hit the restrooms during what generally were twenty to forty minute waits for rides. Justin’s village (comprised of family, therapists, teachers, and aides) have worked very hard with him over the last eight years or so regarding waiting, and between our diligence and Justin’s own maturation process, we did not have any issues between attractions. My mom also downloaded an app where she could see the wait times for any ride in the park at any given moment, so we chose carefully where to apply our next DAS card assignment, and always had a plan.

Let’s just say we’re an A-type family.

Despite Justin’s illness we had a great time. Although he kept saying his approximation of “home” over and over throughout our time there (there’s no place like home) I feel when he was actually on the rides or watching an event he enjoyed himself, and I’m eager to take him back when he’s well and has already had the lay of the land. I consider our trip a success, and I could end this post here.

Except, I can’t.

I can’t end it here, because that would be doing a disservice to many families with autistic children on various ends of the spectrum, because many of our kids (and adults) simply cannot wait. Can Justin make it a half an hour if he’s not actually waiting in a line and is otherwise amused? Absolutely. Could he potentially even make it through waiting a half hour on an actual line? Yes. We all worked hard for him to attain these skills, and we’ve reaped the rewards. But the fact is I know many families who have worked just as hard if not harder than we have, and have not met with the same success.

The truth is, with Justin, we got lucky.

With these changes to the disability program there will be families for whom the magic of Disney now cannot be attained. There are individuals with autism who cannot watch a member of their party walk up to a ride and not be given immediate access to the attraction. There are autistic people who have followed a “Disney routine” for over a decade, a ritual which brings them comfort, which due to the new program will now be denied to them. Regarding this last sentence, I will go out on a limb here and say that some autistic individuals have as much difficulty breaking routine and waiting as other individuals with disabilities have seeing or hearing. These children and adults are not coddled brats. Many have worked on these skills for years, even decades.

Some simply cannot wait. And now that Disney has altered their program so momentously, for some the dream of Disney will now be denied.

I’m a “fix-it” girl, and those of you who have been following the adventures of the McCafferty clan will not be surprised that I have suggestions for Disney, which I will be imparting to a representative just as soon as I’m no longer on hold. I have two ideas which might conform to Disney standards. First, for families who believe they won’t be enjoying any given park for more than three to four hours, create a program which allows families access to the fast pass lane for that short period of time. Second, issue the DAS card, but enable families to also choose a handful of rides each day where they can simply walk into the fast pass lane at any given time, in any given order. This may enable a certain autistic individual to adhere more strongly to a prior routine, or allow families to choose the rides with the traditionally longest lines throughout the park. Either program gives the families the power to tailor their experience to their child’s needs, which at the end of the day, is what living successfully with autism is all about.

There will be people reading this post both within and without the autism community who will think it’s ridiculous to be this fired up about a vacation, particularly when there are so many more pressing problems in the autism world to be addressed. And yes, we still need tremendous reform when it comes to insurance issues, Early Intervention, education, housing, and employment, just to name a few. I concur with anyone who feels these issues should garner our focus and take priority.

But I will finish this post by saying this. Sometimes, autism is not a lot of fun. Many families are struggling on a daily basis with sleep deprivation, eating disorders, medical issues, and behavioral problems, just to scratch the surface. Disney has traditionally been a place where magic abounds, a “respite from life,” a place where dreams come true for many special needs families, even if it’s for a few days or just a few hours.

So my plea to the Disney Corporation is this. Please consider making accommodations for those in our community for whom the DAS card simply will not suffice. Create a system or two that will work with every person on the spectrum’s incredibly individualized needs. Tailor accommodations to each person whenever possible. Listen when we call you and write to you for help. Please, work with us on this, and not because, as some have suggested, we feel we’re entitled to it.

Work with us simply because every family deserves some fun.

App for Disney which enables you to find out wait times for rides:

January 26, 2013

Say Uncle

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , at 11:35 am by autismmommytherapist

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Last week my boys and I had a rare visit from their Uncle Erik (my brother), who is usually either on tour or recording somebody in his studio, so doesn’t get to make as many visits home as he’d like. Although the boys talk on the phone to him (or in Justin’s case, listen), I’m always concerned that since they see him about once a year, they might not really remember him, or feel he merits their attention.

After last week, I’ll remove that worry from my list of perennial concerns for good.

My brother was gracious enough to come see Zach perform in karate class, in which he excelled so much with his punches and jabs I thought he’d send one of the instructors to the hospital. Zach kept looking through the window to make sure we were still there (we were), and absolutely ate up the fact that his uncle was watching him feint and par.

After putting him through several rigorous rounds of Star Wars fighting at home (guess who was Luke, and guess who won) we finally wore him out enough for bed, which became a family affair. At his final parting with my sibling I saw my youngest become emotional, and my heart lurched a bit at bedtime when I heard him whisper “no tears” to himself, in true Jedi warrior fashion. He has a full heart my little one, and he knows it will be a while before we further exhaust his uncle at Disney later this year.

It may take my brother that long to recover from all their light saber fights.

But I have to admit the true star of the evening bedtime ritual was Justin. My eldest, who for years pretty much ignored everyone not directly in his inner circle (mom, dad, teachers and cute therapists) has become more social, and fare more aware of things as of late. In the last two years of visits from Erik he always looks from his face to mine a half dozen times as if to say “I know you two are related”. Bedtime is usually a sacred ritual for Justin, one which generally involves only his mother and sometimes his father (if Justin’s in a magnanimous mood). But last week was different.

That evening, my mom, brother and I all sat in Justin’s room for my mother’s rendition of “Rainbow Sea”, the book of the week (well, really the year), and my son was beside himself with joy. I watched happily as my child, who in theory is supposed to have great difficulty with eye contact, stared gleefully at the members of his family as the story unfolded, absolutely rapturous that this generally private ritual was being shared. As the story concluded hugs were dispensed, adults were pushed to the door (take a hint people), and my beaming boy dove into his sleeping bag, thrilled to death with the attention.

And yes, he has severe autism.

I need to remember these moments, because if someone had told me years ago a visit from my sibling would unfurl in this manner, with both my boys delighted to see him, craving contact and attention from their fun uncle, I wouldn’t have believed it. That night is a reminder that as much as I try to project Justin’s future for his own benefit, I can’t entirely guess what progress he’ll make, what new skills he’ll master. He’ll continue to shatter my expectations for him, and I have to remember that fact as I try to plot out the best trajectory of his life. Justin will always be full of surprises.

And thankfully, as time goes on, there seem to be more and more good ones.