November 14, 2017

Disney and Universal

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:59 am by autismmommytherapist

It’s that time again folks- time for my post-mortem on our semi-annual Disney trip with the McCafferty clan.

Spoiler alert- it went great.

Just in case someone’s eyes are starting to roll in a “nice that they can afford this” way, I will send a shout out to Grandma who paid for most of this trip, and to whom we are all eternally grateful that I even have the opportunity to take my kids on vacation.

And while I’m being thankful, I must include Justin.

This year we changed things up a bit and went to Magic Kingdom one day, and Universal Studios for two days. We had never been to Universal before, and to tell you the truth I held my breath on this one, as sometimes new things are not Justin’s forte.

Yup, even when that something new is an amazing amusement park.

I will share with you all here that he was magnificent. I will also share with you all that I had practically every minute of our three day trip planned for maximum “Justin enjoyment,” which was absolutely necessary. I knew where we’d eat each day and what time. I had a plan B that included half our group with a planned itinerary of what to do if Justin found the Harry Potter attractions to be of no interest. I had sketched out which rides and attractions we’d probably do and in what order. I even built in bathroom breaks.

In other words, I was in my A-type glory.

And it worked. At Magic Kingdom we used both our fast passes and the disability program to piggy-back rides all day, and because the park was not crowded we were able to go on about ten rides in under seven hours. Justin is okay waiting on short lines- what he’s not okay with is wandering around waiting for his ride wait time to come up so he can get on the fast pass line, which is how Disney’s disability program works. Fortunately because the park was not crowded we were able to fit in a ride or two in between our different passes, and we never had to wait just to get on line.

Taking in the sites is also not Justin’s forte.

We had the same success at Universal, but I will tell you that the real reason we were able to enjoy the trip and I was able to see the joy on my youngest son’s face when he visited Diagon Alley and Hogsmeade was Justin. Our first two trips to Florida were somewhat rocky with him, ranging from issues on the plane to sleeping to asking to go home every two seconds. This year it was as if the gods aligned for everything to come together. Except for the first night Justin slept as well as humanly possible in a bed not his own. He wasn’t ill. He waited. He was patient. He didn’t try to escape activities that held no interest for him.

I know. I need a moment for that last sentence.

And I will tell you this. Disney/Universal are really the only places we can go on a family vacation where Justin will be engaged, and not hanging out in our hotel room pacing all day with a frustrated adult in attendance. Vacation spots which would hold great interest to most families hold none for my boy- it would not even be worth the money to try. The truth is I want this family to have vacation memories too, despite the risks taking Justin on a plane, despite the uncertainty that he’ll sleep, despite the unknown of whether or not he’ll enjoy himself. I always feel a lot is riding on these trips- the chance for Justin to try a different environment, and just the plain old opportunity to have fun.

Remember fun folks?

There are so many factors that went into making this trip successful. Planning. Good weather. Fairly low attendance at the parks. Justin’s innate desire to have fun. His ability to wait.

His ability to be somewhat flexible. I know, can’t believe I wrote that one down either.

All of the latter reasons have come about because of so many different reasons, but I believe we had a successful vacation is because from a very early age, even when it seemed impossible, we exposed Justin to different places, and made him learn how to wait. I will tell you that I have little half-moon scars from his tiny teeth on my shoulders from way back when where Justin expressed his extreme displeasure at being somewhere most kids would decide was fun. His teachers, father and I persevered, and eventually I had a kid running up to me with sneakers in hand (often at inopportune moments like Christmas or 8:00 PM) begging to go out. It was years before this happened.

And it was worth every grueling moment.

The point of this missive? Get out. Have help if you can. Have a plan B, C, and D. When people offer assistance take them up on helping you take your child out on an errand, to a meal, to something that ostensibly should be fun. I will tell you that leaving the house with Justin was soul-sucking hard for years, and now it is mostly a joy.

Yup, I said joy.

My final piece of advice?

Get out, and don’t give up.

 

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November 24, 2015

How to Get the Most Out of Your Disney Trip with an Autistic Child

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 11:03 am by autismmommytherapist

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I am a planner. There will never be a line in my obituary stating how often I “winged it.” It’s just who I am. And never did my Type A personality flourish more than when it came to planning for our latest Disney sojourn.

I will begin with sharing with all of you that I consider Disney a “working vacation,” and whether you’re considering a trip with disabled kids or not I strongly suggest having wine on hand at the end of the day.

Lots of wine.

In addition to the grape I’m also strongly recommending you have a plan, and I’d like to share my tips with all of you today (including times when Disney broke the rules for us, woohoo!) so you can have THE BEST DAMN TRIP TO DISNEY EVER.

Which thankfully, is what we had.

I went into this trip with (for me) fairly modest expectations for our eldest son with severe autism, as the last time we went he spent the entire trip grabbing me every five feet and uttering the syllables “aha,” which translated into “Damnit take me home woman.” Florida being a wee bit far from Jersey, we couldn’t accommodate his wish for three days, and his displeasure was made known. The poor kid was also under the weather a bit, and that coupled with being in an entirely new state (he only leaves Jersey to go to CHOP) and sleeping in an entirely new bed (which happens exactly never) he was a mess. So as we boarded the plane two weeks ago with a healthy child I kept every extremity crossed and hoped for the best.

This time, Momma got her reward.

He was delighted, and delightful, and I attribute much of this to his (thank God) innate desire to be happy, and to precision planning that rivals Martha Stewart.

And it all began with a phone call.

In the last few years Disney has changed their disability pass program at least two times that I know of, and added the additional perk of offering three free fast passes with every ticket, a wonderful option not available to us two years ago. The fast passes you can book sixty days in advance if you’re staying on a Disney property, thirty if you’re not ( you would need to have your tickets in advance and create an account on “mydisneyexperience.com” or speak to a live person at Disney to do so.) You can also walk up to kiosks in the park and add or change a fast pass selection, which I would only rely upon if the park was not crowded as the wait times may be long. There is also an app you can download onto your phone that tells you all the wait times of the rides (so fabulous!). I did find the fast pass lane to be longer than it was two years ago when not everybody had them, but even on the one day we were there that the park was at a 5 for capacity (it goes up to 10,) that option was doable for us.

The disability pass program is set up so that in order to gain access to the fast pass lanes on rides for which you are not using your fast pass, one person in your party must walk up to the desired ride, and get an attendant to put a ride return time on the pass which has been issued to the person with the disability (the person with the disability does not have to be present too.) At Magic Kingdom we acquired this pass at Guest Services in Town Hall, and all members of our party had to be initially present to be included. The time to return to the ride will automatically be assigned to every member of your party who is on the pass.

And then the fun begins.

Prior to actually heading to Florida I mapped out an idea in my head of what rides would need a fast pass or disability pass time, and I tried to match them up geographically so my husband (who was our designated runner, he was so cute) didn’t have to traipse all over the park all day. I had a plan, but decided to talk to a live person when we were thirty days out from our trip just to make sure I would be maximizing our passes to their fullest potential.
I spent an hour-and-a-half with a mom of an autistic son (bonus!) and discovered how many ways I’d been wrong.

My lovely contact was able to look at the projected capacity for each of our two days at Magic Kingdom (there’s an app for that too,) and as such was able to plan with me which rides really needed the fast passes (totally different from what I had thought),) which rides would be a good call for the disability passes, and which I’d probably be able to walk onto (which had not been an option the last time we were there due to the crowds.) She helped me coordinate so we weren’t running all over the park to get our disability ride times, and helped me build in lunch and bathroom breaks so that we weren’t stressed. I was also told that with the fast pass you have a one hour window to complete your ride, but with the disability pass you can go on that ride any time after your assigned time, there is no expiration. She also informed me that you can’t keep booking disability passes continually, that you have to complete one disability pass ride before you book the next.

With all of that information, on our first day in the park we were able to eat a leisurely lunch, take potty breaks, actually enjoy the park, and go on twelve rides in seven hours without stressing out.

Yes, I’m trotting this out now- it was magical.

We had a few nice perks happen to us while we were there as well. The first day we acquired the disability pass in Town Hall (and this only works on the first day) the lovely Disney rep actually booked our first disability pass ride for us although she technically wasn’t supposed to, which meant my husband didn’t have to hoof it to Fantasyland when we were planning on exploring Tomorrowland first. Our last day there we actually added three more people to the pass even though the capacity is supposed to be six (we had to physically add them to the disability pass when they arrived.) The people at Guest Services could not have been more accommodating, and our wait time each time we went there was minimal.

In other words, they broke the rules a bit for us, and it really, really helped.

Here are a few other tips that helped make our trip great, particularly for a child with severe autism. My youngest son has a gluten allergy, so we researched which restaurants had gluten-free options and hamburgers (which he can eat without the bun) in all five sections of the park so we would have options no matter where we ended up. We also ate at eleven each day (I know that’s early, but Justin had me up at 4:00 AM each day ready to go (woohoo!) so frankly I was starving by then.

I can miss a few hours of sleep, but not a meal too.

Since we were not staying on a Disney property we avoided going to Magic Kingdom on the “magic hours days” (when Disney opens the park either earlier or later or both for guests staying on property) and just made it to the gates about half an hour before each day’s scheduled opening. We also looked at the traditional crowd capacity for each week in November (a great month to go,) and picked days that were generally less crowded (Veteran’s day was the exception, but even that day wasn’t too bad.) We had been contemplating going to Hollywood Studios so Zach could try to make it into the Jedi program, but checked it out ahead of time to make sure it was still operating and found out it wasn’t, which changed our entire plan.

Thank God I checked. Nobody tells Zach he can’t be a Jedi.

And finally, if you’re traveling with a kid or kids with autism or any other disability, I can’t recommend enough speaking to a live Disney representative to have them help you plan your trip. It made our experience so much better, and saved me the stress of having to ask myself every five minutes where we were going next and where was the wine.

Just kidding on that last part. Sort of.

If you’re planning a trip to Magic Kingdom in the near future I hope these hints help, and I hope you have a wonderful time. We worked hard to plan for this vacation (including taking Justin on a flight simulation years ago before our first trip,) and it really worked out.

We laughed, we made indelible memories for our family, and we didn’t lose either of the kids. It was simply fabulous, and I’ll throw this out there one last time.

It was magic.


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November 19, 2015

Disney Magic

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 3:22 pm by autismmommytherapist

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If I could only say one thing about our Disney trip (God forbid!) it would be this: autism anxiety 0, massive amounts of fun, 1 (I should really say a gazillion, but I’m trying to remain traditional here.)

Last week the McCafferty tribe, along with our host, Grandma, and my lovely sister-in-law, descended upon Orlando for the second time in full force. Our previous trip two years ago had met with mixed success. Zach was so enthralled he cried when we came home and said he wanted to go back, but Justin, our severely autistic son, who was slightly under-the-weather, was mostly miserable. We spent most of the trip watching him clutch one of us every ten feet or so and say “aha,” his word approximation for “home,” and the sparkle that usually resides in his eyes was absent. I chose to chalk up most of his discontent with his illness, and some with the anxiety that a break in routine brings to him. I knew the true test would be our next trip, and I’d have to wait to find out if my guess was correct (waiting not being my forte, I was annoyed.) It turned out, for once, I was right.

Justin was absolutely amazing.

He weathered both plane rides like a champ, rocking back and forth to comfort himself (we always plan to have a family member sit behind him,) frequently smiling and looking out the window with glee. A few times on the way back to Philadelphia he said his sounds for “home,” and when I reassured him that’s where we were going his face was incandescent.

My boy gets it.

There were, of course, difficult parts of the trip. Our first night Justin woke up at 3:00 AM with stomach issues and he couldn’t get back to sleep, so we were a wee bit tired for Legoland (but frankly it was so damn hot that one day we didn’t much notice.) He continued to wake up by 4:00 each morning we were there, but since I was crashing from complete exhaustion by 9:30 each night (McCafferty mama really lives it up on vacation) his early awakenings weren’t much of an issue from then on. Our first morning he kept handing me his shoes and cried for a while, but once we reassured him he was going to have fun he got over it, and we had a fabulous day.

And this time he adored the Magic Kingdom. The smiles, the giggles, the look on his face in “It’s a Small World” are emblazoned in my memory forever.

Perhaps some of you are thinking that it must be nice to be able to take a severely autistic kid on a vacation when you are dealing with insomnia, eating issues, aggression, or all of the above and more. I’ll be happy to share that we’ve been there too, with some of the issues lasting many years. Believe me things are often still challenging chez McCafferty, but we’ve weathered many storms over the last twelve years, and through therapy, luck, and mostly Justin’s own maturation process and love, we’ve come to a much better place.

A place where I felt comfortable taking my boy on two plane rides and having him sleep somewhere not his own bed.

I can’t tell you what it means to me to have a family vacation where both of my kids actually loved their stay. I adored seeing Zach’s excitement over every ride, but in truth, I was even happier to give this experience to Justin. Planner that I am, I’m always thinking ahead to the day where Justin will have to take one giant step out of his comfort zone and live without us. Frankly, the fact that he could handle five days in another state with new experiences and at least somewhat sleep there is thrilling to me. Over the years to come I’m going to have to continually stretch my boy, and his reaction to this giant departure from his daily routine is greatly encouraging.

It gives me hope.

In my next and final post about Disney (I swear!) I’m going to write about the new disability pass system that Disney is now employing. I’ll tell you how to get the most out of piggybacking the pass with your three complimentary fast passes (this will include a description of how much I enjoyed watching my husband run to get the disability pass times for us.) I’ll share with you how my type A personality flourished, and perhaps you can break our record (twelve rides in seven hours WITH a lunch break) and not kill yourselves doing it.

I’ll be back. And I want to say a special thank you to those of you who follow me on Facebook. Your support and joy at Justin’s own joy were priceless.

And as I mentioned in my last post, this time, I kept some of that magic for myself.


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November 3, 2015

On Deck for Disney

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 12:44 pm by autismmommytherapist

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Two years ago this fall my tribe got up in the wee hours of the morning, headed to Philadelphia, and boarded a plane for Orlando and Disney mecca. I honestly thought we’d planned for everything (I think I had a Plan Z). Our preparation ranged from my creation of a Disney social story for Justin, to having him run through a flight simulation that did everything but take off from the runway. I planned, and I planned, and I planned some more.

But I couldn’t plan for the stomach virus that got Justin on the plane (!) or the fact that every five feet in the Disney parks my firstborn would stop, grab me, and say “aha,” his version of the word “home.”

Unlike Disney, I am not magic.

We’re gearing up soon to go again, and I will share with you that this time, I’m hoping for more for Justin. I know some of you are probably reading this thinking how nice it must be that my major concern with my severely autistic tween is that he enjoys his vacation, and I get that. I know that many of you are wondering how you’ll get through your child’s self-injurious behavior, aggression, insomnia, inability to communicate, lack of appetite, too much appetite, and I could go on and on, hell, and on. Worrying about a vacation seems like a luxury that few of us can afford.

But I want you to know I’ve dwelled in all of these places too, sometimes for months, sometimes for years. There were times I thought we’d never get through them, but we did. Through many years of therapy, consistency, love, and just plain luck we finally made it to a place where I can perseverate on my son finding joy in our family vacation.

And it’s a beautiful place to be.

So in a few days we’ll board a plane with every electronic device and light-up/spinny toy we’re allowed, and hopefully we’ll settle in to that reasonably short flight and it will go off without a hitch. I’m hoping that “aha” won’t even be a part of Justin’s vocabulary because this time he’ll understand that we’re not relocating to Disney (oh but that sounds fun), that home will soon be within reach. I’m hoping that my boy shows the same excitement at Disney that he does for the rides at Great Adventure, that some of the magic of the place will rub off on him, that he will be able to keep his anxiety at bay and enjoy his time there.

I’m hoping his mother can do the same too.

So please wish us luck, and I will update you on how we did, plus share with you how successful my “Type A” plan to get on the most rides possible at Disney worked out.

I am always a girl with a plan.

And maybe this time that girl will find some magic there too.


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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: WDWlines.com

April 25, 2012

No Fear of Flying

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , at 9:48 am by autismmommytherapist

It’s 2:00 AM, and through moonlit shadows I see my son standing next to his bed in my mother’s guest room, searching for me in mute appeal. I slide off the window seat that doubles as a sleeping receptacle and walk towards him, with the intent both to comfort him, and to beg him to return to slumber. We do this dance for the next forty-five minutes or so, until sheer exhaustion overtakes him and he clambers back under the sheets, and lets me wrap him cocoon-like in his airplane sleeping bag once more. I slide back into my borrowed bed, knowing sleep may be an elusive fantasy not again realized until many, many hours from now. I resign myself to consciousness, and hope that the airplanes on Justin’s sleeping bag are not the only ones he comes in close contact with in the next twelve hours.

In theory, if we’re very, very lucky, for the first time ever my boy will step foot inside a plane.

My family is hoping to fly to Disney this fall, and I knew that if we had a chance in hell of getting my almost nine-year-old son who has moderate-to-severe autism in the air, we’d better have a practice run. Luckily, my mom had heard that US Air was running a free program with Autism Inclusion Resources out of Philadelphia Airport, one which caters to families with autistic children. The event takes families through every aspect of the travel experience, from checking baggage and security checks, to boarding the plane and baggage claim. Months ago we were able to secure a spot for their spring event (they generally hold it once in the spring, and once in the fall), and at the time I was quite eager to see how Justin held up, and was fairly confident he’d love every aspect of it.

Unfortunately in November he became ill with a garden-variety virus, one that when it released him left behind some unwanted extras. We saw the return of aggressive tendencies which had lain dormant for years, body tics which shook him from head to toe, and a vacant expression that often claimed his countenance for hours at a time. His teachers and home therapists were concerned as well, and after it became apparent these unwelcome afflictions weren’t going to disappear any time soon, we sought help. Four months, three specialists, a debacle of a medicine change, and half a dozen tests later, we were back at square one. We put him on the original medicine that had seemed to improve his life so much, and upped it a bit. Within a few days we saw some improvement.

And as I contemplate that progress on my cushy window seat in the wee hours of the morn, I remind myself we’ve only been dwelling in that more peaceful oasis for a week. Nothing with autism (or life in general), is ever guaranteed.

Eventually strong sunlight banishes the moonbeams from view, and after having caught another hour or two of rest I see my son stretching from across the room, a glorious smile on his face. It’s a good start, and his ebullient mood carries him through breakfast and that semi-harrowing rush hour traffic to Philadelphia International. Thankfully we’ve been well-prepped by Autism Inclusion Resources, the non-profit sponsoring the morning.

I’ve had a phone interview with one of the founders, Becky Jacket, which helped me both envision how the day would unfold, and imparted valuable information to the group as to how to make the day more positive for Justin as well. We’ve been sent a social story, family travel tips (since I fly these days about as frequently as I win the lottery, these were particularly valuable), and a detailed itinerary as to what to expect from the experience. We are as prepared as humanly possible.

But sometimes with Justin, that doesn’t count for much.

I’m questioning my decision to even attempt this excursion about five minutes in, when my son is almost pulling my arm out of my socket in front of baggage check, imploring me to quit this place and return to grandma’s car. I whip pepperoni out of my purse and parcel round slices one by one into his outstretched hand, making him mouth the word “more” after he’s consumed his morsel, hoping it will buy us some time.

It’s his latest favorite snack, and I’m conferring magical properties upon it at the moment, because we’ve made it this far, and it’s suddenly apparent to me how much I want this to work for him. I know, it’s just a family vacation. There are so many families struggling just to pay for services for their autistic kids, and we’re contemplating the Magic Kingdom. I completely comprehend how lucky we are to be in this place.

But honestly, the last four months have been hell. I’m ready for something, anything, just to be simple. And for once, it is.

Cold cuts seem to do the trick for my boy, and he waits patiently as Rick Dempsey, ADA coordinator for Philadelphia Airport, lays out the impending steps for the waiting families and children. There are only a few participants today, one with a child who is similarly affected, and several who are very mild in comparison. Miraculously all of them, including mine, make it through his welcome speech, which is great practice for the multiple waiting periods which occur at any airport. Justin stands calmly next to us as we pretend to check our luggage and acquire our boarding passes (families can actually check their bags, we chose not to), and happily takes my hand as we venture on to security.

This is where I anticipate the most problems for my boy. And once again, he simply blows me away with his compliance.

We sail through the checkpoint, Justin standing calmly at our sides as we reclaim shoes, his iPad, and multiple electronic devices devised to keep him entertained on our journey. I have a bonding moment with an airport volunteer who praises Justin for his behavior, and shares his own story of his son’s autism. I feel my heart-rate slow a bit, my pulse begin to settle for the first time since that middle-of–the-night awakening. My boy waits patiently for the entire group to finish, and eagerly walks beside me to the boarding area, where once again he is required to wait for approximately twenty minutes.

Generally, Justin wants to leave even the most reinforcing destinations after twenty minutes. The fact that we’re still here, pepperoni not withstanding, is a miracle.

Finally, we’re called to board the plane (destination Philadelphia), and my son revels in it all. He wears his seatbelt the entire “trip”. He excitedly consumes the pretzels the kind airline attendants offer to him. Justin and I even take a jaunt to the bathroom when the line clears a bit, and I discover he’s an old pro at navigating that slim space with his mom. I even have the opportunity to thank some staff and tell them how much this opportunity means to us, how grateful we are that they’ve volunteered their time.

They share with me that they feel the same. I am inordinately proud I manage not to bawl all over them in the back of an airplane. Eventually we “land”, and make our way to baggage claim. I walk my son around the corner from my mom and ask her to heave our suitcases onto the carousel, and I show Justin how we relocate our luggage (of course, that is when his mother recognizes it). Our leader thanks us for coming, when it should be us thanking him and AIR.

Every single participant involved, from the volunteers at Autism Inclusion Resources and participants from the Department of Transportation in Washington, DC, to the employee/volunteers from Philadelphia International Airport to the United Airlines crew and the pilot in particular (who flew in on his day off to help), have been wonderful. None of them could have been more professional, or more prepared. Our family is forever indebted.

Finally, the experience concludes. But the ramifications for Justin, the doors this day has thrown wide for him for future opportunities to travel, are just beginning to open. From the McCafferty family, to all those who participated in the making of this day, we thank you from the bottom of our hearts.

Look out Disney. Here we come.

To learn more about the program, check out the Philadelphia International Airport website at:  http://www.phl.org/ada.html/, and scroll down to the section entitled “Airport Autism Accessibility Program”

Email address for the AAAP:  accessibility@phl.org

Email contact for Autism Inclusion Resources (Wendy Ross) wendyrossmd@gmail.com

Email contact for TSA(Technical Services Representative) at PIA (Lisa Bailey) lisa.bailey@phl.org

April 4, 2012

“Traveling with your Autistic Child”

Posted in Fun Stuff, My Take on Autism tagged , , , , , , , , , at 9:21 am by autismmommytherapist

It’s been almost six years since the McCafferty clan took a family vacation together. This is in part due to the fact that more than half a decade ago we relocated from Washington, DC back to the Jersey shore, which when not obnoxiously crowded, is a vacation in and of itself. We also eschewed travel because within months of taking up residence in the Garden State, I found myself quite unexpectedly pregnant

For obvious reasons, the prospect of a trip with a young son with moderate autism, coupled with an infant, was terribly unappealing to both me and my spouse. Finally, just as we were beginning to consider leaving the house again our youngest son regressed, losing almost all of his speech and his spark in a matter of weeks.

Let’s just say at that time, travel wasn’t at the top of our priorities.

It’s been a few years now since those wretchedly grim days, and although Justin has chosen to enter a decidedly challenging phase, I’m beginning to feel I must heed the call of Disney. Zach will be almost six this fall, Justin is pushing nine, and I’m beginning to think we have a window in which to attempt this, and it’s starting to slowly close. Given that I’m pretty tired these days, I may not be pushing it open in the near future. It’s time to bite the bullet and give it a go.

So happy they still serve wine on planes.

We’re beginning to gather our resources for the trip, showing Justin ancient VCR tapes from his grown cousins that describe the myriad pleasures of the resort, and most importantly, have a “run-through” planned at a Philadelphia airport (I will write more after it takes place this month). Quite honestly I will discuss the possibility of sedatives for the plane ride (no, sadly, not for me), as there is not a chance in hell we’re all driving to and from Florida together.  If we can pull this off, I intend to fly there and back with the same amount of kids with which I started.

I know. Those extravagant dreams again.

There is one resource that will be an integral component of our trip, what I like to call my “travel-Bible”, a gem-packed list of travel tips for travel with a child on the autism spectrum. It’s called “Traveling with your Autistic Child” by Babette Zschiegner, and I will have this tome practically adhered to my body throughout our entire stay. Yes, in the interest of full disclosure, the author happens to be my friend, is in fact one of the actresses in my play, “Raising Autism”. It’s still a great book, and I anticipate it will be saving my sanity on at least several occasions as we attempt this adventure.

That, and of course, that glorious wine.

There are several wonderful features about her writing. First of all, she’s the mother of two children on the autism spectrum and she’s traveled extensively with both of her sons, so none of her ideas are mere conjecture. Second, she explains in great detail how she and her husband conquered each stumbling block to family fun along the way, generally suggesting more than one solution to each problem that arose. Last, she condenses all her fabulous tips into an easy-to-find guide at the end of the chapter, for those times (and in this household, there are many) where we need a condensed answer, and fast.

Quick is key around here.

The author has broken down her tips into eight easy-to-read chapters, and covers such topics as where to go, what to bring (I will be memorizing this list), and special diets. She even devotes a number of pages to handling a child who wanders, which is a particular concern to many families with children on the  spectrum. My personal favorites however, and the two that convinced me that we should give this travel gig a go, are the two centering on dealing with challenging moments, and sleep.

The latter segment being my personal fave.

In her chapter about handling challenging moments, she reminded me to always have a Plan B in place (sometimes C and D are helpful too), and to remember that there will frequently be difficult moments in life, moments which (hopefully) will eventually end. Perhaps my favorite reminder for “happy travel” came at the conclusion, where the author reminds us all that we can’t control what others think about our child’s behavior, and most importantly (and happily), we will probably never see those people again.

I employed that one a lot in Justin’s early days, and it’s one maxim that continues to ring completely true.

I don’t want to give too much away (no spoiler alerts here), but I recall as I read her work the first time I kept wondering if she’d answer all of my questions, and eventually, she did. Of course there are some strategies that won’t work for either of my children, as all of our offspring are so different. The vast majority will be incredibly helpful however, with some adaptations to be expected.

Trust me, on this trip, “Traveling with your Autistic Child” will remain in my carry-on.

If you’re considering travel with one or more children on the spectrum, I highly recommend Babette Zschiegner’s book. To purchase or read more about it, please see the link below:

http://www.lulu.com/

Best of luck to you, and happy travels!

November 18, 2011

Gratitude Attitude

Posted in Uncategorized tagged , , , at 10:16 am by autismmommytherapist

This week’s Gratitude Attitude goes out to my mom and Aunt Kate, for helping make “Sleepover Part Three” a resounding success.  Disney, here we come!

June 18, 2011

Search Field Day 2011

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 10:21 am by autismmommytherapist

“Mommy, where’s Justin?” my four-year-old inquires for perhaps the thousandth time, and I suck back my irritation (a technique I perfected during my twelve years teaching in elementary school), and tell him again, “soon”. A minute after imploring him for the millionth time to “please stop kicking my mutilated shin” under the picnic table, Justin indeed makes his glorious entrance. It’s Field Day at his school, and the festivities commence with every class from age three to twenty-one taking a promenade around the front entrance, until it’s finally my son’s turn.

Zach starts waving wildly as Justin’s teacher approaches and salutes him, and I crane my neck to look for my boy, hoping he won’t make a break for us and want me to take him home, as he has been wont to do in the past. Seconds later he comes into view, clutching the hand of his aide, looking mildly confused since he’s never participated in this pageant prior to today. He steps down off the curb and sees me, his grandma, and his little brother across the empty parking lot, and stops dead in his tracks, holding up the entire procession. I hold my breath to see what he’ll do next.

And then, he smiles.

This isn’t just any smile. This is his hundred watt, “I can’t believe three-fourths of the people I love the most are here right now” smile. With mild prompting from his para he waves, then continues on his way, checking back periodically to see if we’re still there.

Trust me, we’re not going anywhere.

Frankly, as I sit on my cold folding chair and watch the students of Search Day School parade by me I am ecstatic, because even a year ago, I would not have been able to remain at this picnic table. Although Justin enjoys parties, in his mind I am generally his primary reinforcer, or the equivalent of Disney. During his early childhood years in his first public school placement, I spent many a desperate hour in his classroom trying to convince him that musical chairs and chips were a far better deal than going home with mommy. There were entire years in our local school district where I didn’t attend any of his parties save the one dedicated to his birthday, which killed his shutter-bug, stay-at-home,  mom. It came down to this, as things so often do with autism- my having to choose to participate in a party which made me feel like a good mother, or boycotting the event and letting him have fun. I grudgingly chose the latter most of the time.

But as I look at him now, I realize at these events, I may finally be eligible for front row seats.


The children circle around the entrance way and reenter the building, as classes are staggered for this extravaganza, and it will be a good twenty minutes before we see Justin again. Since that doesn’t meet with King Zachary’s approval I take him on several walks around the premises, craning my neck back periodically to make certain we don’t miss Justin’s second debut. We wend our way back through brightly decorated picnic tables in time to see Justin march to the field for the first of his feats of strength, and I simultaneously watch my youngest commence meltdown mode.

This is completely inconvenient, as I seriously require commemorative photos of this event. Otherwise, my scrapbook will be devastated.

Just as I think I’ll have to do a “Sophie’s Choice” with my children, Jodi Ussuri, administrator extraordinaire, steps in and offers to take him off my hands for a while. Zach deigns to take her hand and walk/skip/hop/jump/run with her, which is not surprising since she has three kids, and is clearly a fun mom. When her babysitting stint is over, the words “bless you” accompany Zach’s tiny paw as it is handed back to me. These are words I frankly should have imparted to her, as the absence of my youngest enabled me to witness my oldest’s glory.

And glory, it was.

Sure, it was lovely that Justin carried an over-sized ball across a field successfully, then bounced on it as his classmates followed suit. Under his watch not one single tennis ball escaped the confines of a waiting barrel, deftly maneuvered for guaranteed capture by school personnell. He navigated a balance beam with relative ease, and at least attempted to sneak under the “luau-esque” wooden rods adjacent to those parallel lengths of wood.

In other words, Justin rocked Field day.

While I was thrilled by how far he’s come within the physical realm of things, happy to see him willingly and successfully participating in events requiring balance, concentration, and manual dexterity, there were a multitude of far subtler reasons I was grateful to regard these activities. Throughout every single request and demand, I witnessed my son’s eager compliance. I watched as he patiently took turns, neither rushing through nor attempting to avoid the task before him. Most importantly, I saw my son search for his family at every single station, executing his dazzling smile at us before switching to serious concentration mode, overjoyed we watched him perform.

Not only did he enjoy the festivities, he was ecstatic his family was there to cheer for him. Trust me, me and my mom are still hoarse.

Eventually, it literally rained on our parade, and students were hustled inside to consume their lunches while the three of us escaped to Panera for soups and salads (what a win-win day!). We returned to take home an excited Justin, a child happy to escape his routine whenever it includes going home early with me. As I walk him back to the car, I reminded myself that it’s not just the efforts of this particular school staff that have brought him to this place. In every moment of desired behavior, every nuance of glorious grin I received from my boy today, is the work of five schools, dozens of aides, teachers, specialists, doctors, Early Intervention workers, the fortitude of two parents, a patient brother, and the stubborn zeal of one determined grandma.

It takes a planet, not a village, to raise a kid like Justin.

We reach our waiting SUV chariot, he sees my mother and his sibling, and it’s like Christmas morning all over again. I strap him into his seat, kiss his forehead and tell him how proud I am of him, activate the GPS (just in case), and head for home.

And as we glide into traffic, I remind myself to live a little in the moment, and just be happy we’re here.

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