There's Something About Alex

Living with Down Syndrome and autism

April 2, 2014

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Best Day Ever!


I knew that Alex would love Disney World, who wouldn’t? What I didn’t expect was the level that Disney goes to to make kids like mine feel comfortable during their time there.

We had already put in a full day in the park and Alex was getting tired. He was ready to go, but we wanted to grab something to eat and hopefully let him see the electric light parade. I knew that he was close to sensory overload with all the people so we looked for a restaurant with the fewest people, if that was even possible. What I didn’t expect was that they were all full and evidently you needed to book in advance to get into one with characters. I guess I failed the mommie test and didn’t plan ahead.

After checking several we finally got into the Crystal Palace by the grace of God and a very sweet little girl at the hostess desk. Once they saw Alex and obviously knew that he had Downs, they asked where we would like to sit. I was surprised that we would even have a choice with as busy as it was, but they had been trained to be alert to the needs of the child. We picked a seat at the back of the restaurant with our backs against the wall where Alex feels safe and away from as much noise as possible. He has an auditory processing disorder and a lot of background noise will set off a panic attack.

Out of the corner of my eye I saw him strolling thru the restaurant followed by a stream of children. Winnie the Pooh! Oh Lord! He’s Alex’s favorite, but he’s huge! I wasn’t sure if Alex was going to love him, or run for the hills.
Then from the other side emerged Piglet and Eeyore with the music playing in the background.

I had no idea this restaurant had characters, let alone Winnie the Pooh. Alex’s eyes got as big a saucers and he started jumping up and down making the sign that he’d made up for Pooh. You get a glimpse every once in a while of joy and happiness in his face and see that he totally gets it, but not often. This was one of those times.

As the music started up for the Pooh march and all the kids lined up to follow Pooh and friends, Pooh came over to the table and held his hand out to Alex. I held my breath not knowing what he would do. Alex grinned and got up and went with Pooh to march thru the restaurant, grinning the whole time.

With tears in my eyes I looked at my husband and said “Oh holy shit! He went with him!” I had to apologize to the lady from France at the next table, and she laughed as she was taking pictures of my little boy.

There are companies that comply with ADA law only because they have to, and then there are the ones that creat a memory that will never be forgotten for a mother that only wants her little boy to feel like he’s part of something too. Thanks Disney. I have a feeling we’ll be back every year.


April 2, 2014

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Please don’t bite the dentist

I always know that the day that we have to take Alex to the dentist isn’t going to be good, but I’m never quite ready for it.  See Alex is now 17 and has Down Syndrome.  While he’s typically the sweetest thing in the world, he just doesn’t get the concept of dental hygene or someone sticking their fingers in his mouth.

What surprises me is that with poor muscle tone because of the Downs, he has the ability to clamp that mouth shut like a vice grip.  There’s nothing getting in there.  But what made a bad day even worse was that a lens fell out of his glasses on the way to the dentist.  I was almost in a panic because I knew his OCD was going to kick in and his world was out of kilter.

When we arrived like every good mommie I bribed him with a movie if he’d be a good boy and let the dentist brush his teeth.  He loves Disney movies and has just about all of them in his collection.  All he could think about was his glasses and the fact they were broken.

We get in the office, I explain the situation to the nice girls.  Alex jumps right up in the chair and opens wide for the cleaning.  I about fell over in shock.  Most parents with a 17 year old kid could just drop them off and come back to pick them up, or heck they’d drive their own car to the appointment.  But with Alex it’s like dancing with a 6 year old.  Sometimes it works, sometimes we trip.

Today, it worked.   Alex obviously had it all together, and I didn’t.  Who knew.

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