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!

December 3, 2010

He Loves Me, He Loves Me Not

Posted in Fun Stuff tagged , , , at 9:58 am by autismmommytherapist

Tonight Justin and I made it home in time to say goodnight to Zachary, which doesn’t always happen on the days of our once-monthly trips to SSNY (Someone Special Needs You). I entered the house with my oldest in tow and heard the bath water running, which meant I’d have the opportunity both to get Justin to bed and read stories with Zach, a nighttime ritual I am loathe to miss. Even though every story these days seems to be sponsored by Disney or Pixar, he’s just so cute as he snuggles into my lap and demands to be read to, and I hate to miss it. I quickly got Justin’s medications into him, hauled him over the gate and ushered him upstairs to the bathroom, and decided to poke my head into my youngest’s bedroom to let him know I’d made it home and couldn’t wait to read to him.

As it turns out, my enthusiasm was one-sided.

I was greeted by the merest of glances by my waiting, naked gamine, quietly reading his latest Cars story in the middle of the floor. I smiled and said “Zachy, Mommy’s home, I can read stories to you tonight!”.

My youngest child looked at me with his “serious stare”, then put down his book and firmly replied “I’m sorry, I can’t. I don’t love you anymore.”

Well, okay then. You are almost four. Guess we had a good run.

Since I’m pretty certain he’ll get over this soon I decide not to be devastated, and quickly ask him “Why Zach?  Why don’t you love Mommy anymore?”, not really expecting a coherent explanation from a three-year-old who was asking me not to leave him mere hours ago.

He looks at me as if the reason is SO obvious and responds “I don’t love you anymore because you were on vacation today”.

Oh, if only that were true.

The concept of “vacation” started when Jeff and I escaped to Wildwood for forty-eight hours this fall, and we thought a direct approach in explaining the situation would work best for Zach. It had been a long time since we’d left him with anyone alone overnight, and I was pretty sure he didn’t remember the experience. We used the term several times to tell him we’d be gone for a while, and it seemed to appeal to him. He asked my mother on numerous occasions during the weekend if “mommy and daddy were on vacation and were coming back”, and after he was assured that we were, he seemed fine with the whole concept. When I told him I was going to DC for my girls weekend “on vacation” he asked me if I was going to see my friends, then told me to have a good time, a statement I found to be quite mature for his age. He appeared to be perfectly at peace with our collective absences over a period of a few days, no worse for wear upon our return.

Today, however, I’d been out of his presence for a mere four hours. I’d spent a portion of that time at Perkins Pancake house, blocking Justin from trying to eat everything not nailed down on two plates being closely guarded by me and my aunt. The following half hour, much to my chagrin, was spent at SSNY cajoling Justin into believing that Thanksgiving crafts are indeed fun to construct, so that his teen-age buddy would continue to feel it’s worth it to give up homework and texting time to hang out with my son once a month. Usually I don’t have to persuade Justin to enjoy time with a pretty girl, but tonight, this event was work.

Today was so NOT a vacation day.

I decide I don’t trust myself to respond maturely, so I leave and busy myself with putting Justin to sleep. I return to Zach’s room where he and his father are working on clothing him in pajamas, and I announce my presence, curious to hear what his response will be. I scooch down onto the floor next to him, prop my head on my hand, and dare to ask my youngest if it’s okay to read him a story now.

He pauses to reflect on my request (no, I mean it, he actually had to REFLECT on it), returns my gaze, and says “It’s okay, Mom. I love you again. You can read to me”.

You’re so kind. Don’t go to any trouble now.

There have been many years I’ve wondered whether or not I’d ever hear one of my children say “I love you” or “I hate you”, but I have to admit I thought my disowning would occur a little farther down the road. We appear to have weathered this well however, and now that I’m back in Zach’s good graces I’ve had numerous command performances to read to him. He’s even forgiven me recently for “going on vacation” with my girlfriends for dinner, exclaiming “You came back!” in the morning when I got him from his crib, apparently thrilled to see me. Hopefully, this enthusiasm for my presence will last just a little bit longer.

And if not, I can always dream of a long, real, vacation.