Utter Autism

March 10, 2015

Doing Disney Differently: The Disability Access Service Card

When I heard that Disney was changing their policy for those with disabilities a while back I was very concerned.  Like so many others, we went to Disney World year after year because the policy made vacationing with our autistic son possible.

Before this trip, I did extensive reading online about how this new policy worked and about the experiences of those who had already used it.  The reviews were mixed.  There are many different types of disabilities and challenges so I suppose that should be expected.  It worked for some and didn’t work for others.

In general, it did work for us.

When you go to the customer service desk at any one of the parks, they issue you a Disability Access Service card.  This DAS card is good for the length of your stay. The valid dates, number in your party as well as the name and a photo of the person with the disability is digitally printed on the front of the card.

You can’t use the card to board a ride unless the person on the card is with you. This is a change from the old system and I can see why some might be upset about the change.  This trip we were only traveling with Adrian so it didn’t affect us.  However, in years past we did use the disability card to allow the other kids to ride rides that Adrian didn’t want to go on.  Perhaps some would call that ‘cheating’ the system but you have to remember that Adrian’s disability meant that we could only stay in the parks for a short time before he needed a break.  It was beat the clock each and every time we entered a park.  If the other kids had any hope at all of riding on things without Adrian, we had to use the pass to get them in and out quickly.  Adrian could not wait.  Leaving only one parent with him, wandering in circles for as long as the standby line took would have ended in disaster.

The thing you have to remember about the new DAS card is that it’s designed to be used in conjunction with the FassPass+ system.  If you are not using the FP+ system then it’s likely you will find the DAS card policy severely limiting.  If we were to travel with the whole family today we’d have to rely on the FP+ system to get them in and out of rides Adrian doesn’t like.  It would require a bit more planning and be a little less convenient… but I don’t see it as a complete deal breaker and I won’t say that it’s not ‘fair’.

Another big change in the policy is that the DAS card does not provide immediate access.  Under the old disability policy you simply showed the card at the ride and were directed to the ‘disability entrance’.   In some cases this was a separate, wheel-chair friendly entrance but for some rides it was the FassPass line.  It was this part of the old policy that lead to abuse by unscrupulous people and the need to switch to the DAS card system.

Again, I understand how some people are upset by the new system.  It is less convenient.  With the DAS card you have to take it to the ride entrance to get it stamped and they write a return time on the card. In other words, you wait as long as the folks on the stand-by line… you just wait some where else.  Actually, that’s not true.  You sometimes wait longer because when you do return you still have to wait on the FP+ line.

This trip, Adrian was able to handle going up to a ride and then coming back later.  When he was younger, he couldn’t have handled it.  One of us would have had to go get the stamp while the other took Adrian in a different direction.  You can only have one active stamp at a time so I understand why some people may be particularly upset about this part of the policy.  While it would be extra work, I still don’t think that even back in the day it would have made it impossible for us to visit.  And I wouldn’t say it’s not ‘fair’.

The last major change with this policy is that when you return at the time written on your card, in almost every case, you will enter the FP+ line.  Disney has done a great job making most of the queues accessible.  There are very few rides left that require a separate wheelchair entrance.  The down side here is that the FP+ line is a line.  With everyone using the FP+ system now, it’s not a ‘walk on’ line any more.  Though minimal, there is some waiting.  It’s probably this part, more than any other, that I think would have tripped us up back in the day.

Of course, we didn’t have iPods, iPads or phones all connected to the internet back then either.  We didn’t find the waiting that hard this time because we had the wheelchair and we did use an iPod to keep him entertained while we waited.  With this policy, I will never take Adrian without using a wheelchair.  Even today he could not handle waiting like that without the wheelchair and something to entertain him.

All things considered, I think the new policy is well thought out and should work to accommodate most people. One of the things I love about Disney is that, almost without exception, the employees are very accommodating.  It happened more than once that they bent the rules a bit.  Some wrote down a slightly reduced wait time on our card.  Others let us enter the FP+ line a few minutes ahead of the scheduled time.

I’m aware of additional accommodations some people have received as well.  A woman who had an autistic child went out of her way to tell me that I should go to customer service and demand generic, paper fastpasses.  We didn’t find this necessary this trip.  But I can see that as something some folks may need.  I’ve also read online that if your child has a compulsive need to ride a ride multiple times in a row, that they will often allow that.

I still think Disney World is a great place to go if you have a family member with autism but there is some preparation and work involved to make things go smoothly.  My advice is to go at the least busy time of year,  use the FP+ system in conjunction with the DAS card, bring enough help and electronic entertainment, consider using a wheelchair and if you have a specific need, it never hurts to ask a cast member or two for help.

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October 3, 2014

Old Notebooks : The Gluten Free Diet

April 24, 2000

We started Adrian on the GFCF diet this past week.  This, of course, means a lot of restrictions on foods so I’ll be sending both snack and lunch foods from now on.

It was not an easy decision to try Adrian on a special diet.  First, there’s the skepticism to get by.   As a young parent, it’s hard to go against convention.  Especially when you’re not sure what’s the right thing to do. There were other potential ‘treatments’ we passed by because they were a bigger step than we were prepared to make at that point.

The diet, on the other hand, seemed fairly harmless.  It wasn’t going to hurt Adrian or the bank account to give it a try and see what happened. So we committed to a one month trial removing all gluten and casein from his diet.

Back in those days that was not an easy feat.  Today I walk in my grocery store and there’s shelves full of gluten free products.  Back then, to find anything gluten free at all, you had to shop specialty health food stores and even there the selection wasn’t great.  It was a lot of work to prepare the food.  And for a kid who didn’t take easily to new foods well, there were other challenges besides.

The results?  Well what we saw in that first month was enough to convince us that it didn’t hurt to stay on the diet.  Some of what we saw improve:

  • He waved ‘hi’ and ‘bye’ for the first time ever
  • He was playing with toys appropriately more than ever before
  • He played with a toy with a friend for the first time
  • He was ‘increasingly willing to tolerate various sensory and movement experiences as well as participate in activities chosen by the therapist’
  • His eye contact improve both at home and at school with therapists and teachers each mentioning it to us separately
  • He did all the motions to songs without hand over hand
  • He improved his ability to follow directions
  • He seemed to be more aware of his environment

And that was all in the first month after starting the diet.  It was a lot of improvement over a short period of time.  He’d been in school a full year and we hadn’t seen that much so fast in all that time.

Could it have just been coincidental? Yup.  We’re talking about a kid who was getting full day preschool including multiple therapies who had 2 sisters at home who were themselves going through many of these same developmental milestones.  Maybe he was just ready for all that and it would have happened diet or no.

But as the diet wasn’t causing any great hardship on Adrian and we were seeing such good things… well, why not stay on it?

In the following month we saw more great strides.

  • Participation in circle time including clapping at the appropriate time
  • Playing with a wider variety of toys in more appropriate ways
  • He gave his sisters hugs and responded to their requests for hugs from him
  • He gave my husband and I kisses for the first time ever (he was 3.5 years old)
  • Babbling – something he’d not done since he was about 6 months old
  • Attempts to say words – closer than ever to talking with approximations of the word book and up
  • Use of his first sign language
  • Started  paying attention to family pets for the first time ever
  • Attempted to sing a complete song by himself with motions and ‘singing’
  • Played ‘Ring around the Rosie’ with his sisters – unprompted
  • Blowing kisses for the first time ever
  • Attempts to say more words – out, all done, eat, etc.

Again, this is all within 2 months of starting the diet.  Much, much more progress than we’d ever seen before in such a short time.  It was encouraging and not knowing if it was the diet or something else, we decided to just continue it indefinitely.

September 24, 2014

Old Notebooks : The Beginning

I recently cleaned out the file cabinets and pulled out the collection of notebooks used to communicate with Adrian’s classrooms through the years.  I can’t really think of a good reason to keep them around at this point.  It’s not terribly practical or helpful to know what the problem du jour was back in 1999.

However, before I part with them forever, I plan to read through them one last time. It seems like a good idea to record some of highlights here while I do that.  I’d like to keep some of the memories of what life was like back then.  And perhaps some who read these will find it helpful to them as they go through similar things.  If nothing else, they can know it’s all survivable.  😀

Adrian was diagnosed with autism in the spring of 1999 when he was just over 2 years old.  He immediately started attending a special ed preschool where he received speech and occupational therapies.  My twin daughters at the time were 6 months old.  Yes, I really had my hands full!

The first thing I saw in the notebook from that first year was the fact that they used PECS with Adrian from that first day.  I sent in pictures for chicken nuggets, yogurt and family members.  He picked up the use of them quickly.  Being reminded of how successful he was with these even back then makes me feel more than ever that PECS really are a old and babyish method to be using with a grown man.  Thankfully, in recent years most of the staff working with him have moved away from using them.

November 1999 saw me asking staff at the school questions like…

Bee has picked up Adrian’s humming while eating habit.  Ahhhh!  How do we stop this insanity?

And

Adrian has been taking his clothes and diaper off lately.  Do you have any suggestions about how to stop this? (The duct tape only slows him down)

LOL  Oh, to be able to laugh about these things today!

Bee saw her older brother loudly humming while he ate and thought it was the way eating was done.  If I recall, we had to constantly interrupt her copycat behavior until she finally stopped.  Simply exhausting for us and very confusing for her!

And duct tape on the diaper!  I’d completely forgotten about that one.  How many parents keep duct tape in the diaper caddy next to the diaper cream and wipes?!  Oh but we did.  We had to.

The teacher wrote back that onsies or overalls might slow him down… but I had to tell her that we’d already tried both of those.  He was able to take the diaper off from underneath these types of clothing, leaving the clothing in tact so you didn’t know he wasn’t wearing his diaper until he’d peed his pants.  Thus, the duct tape solution.

The stripping behavior has stayed with us for many years.  I recall once when Adrian was 6 and still wearing diapers that he took the diaper off and shredded it.  Ever wonder what the insides of those diapers look like?  I, unfortunately, can tell you. I walked into his room and there was yellow ‘snow’ everywhere.  We finally got him toilet trained shortly after that incident.

September 17, 2014

Return to Disney World?

So I’ve been toying with the idea of taking Adrian back to Disney World for a couple of months now.  It’s been 5 years since we took him last.   That last was the trip where Adrian reached out and pinched a stranger because he was unhappy waiting for a meal.  I came back from that trip black and blue, beaten down, sad with the realization that we might not be able to bring him back.  His behavior was so out of control he was a danger to himself and everyone around him.

Of course the same was true at home at that time too.  But taking the whole nightmare on the road (or plane) just wasn’t a good plan.

Recently I’ve traveled with Adrian to his favorite malls, gone with him to restaurants and had peaceful home visits. It’s convinced me that it might be feasible to take Adrian back to his favorite vacation destination.  But I’m not taking any chances.  If we go, I want it to be a success we can build on for years to come.

So my planning starts with a novel idea.  We’re only going to take Adrian, not the rest of the family.  A good portion of why our visits have been so good is that, for the short time I’m with Adrian, I can focus completely on him.  The worst experiences we’ve had at Disney World with Adrian have all been linked, in one way or another, to our efforts to accommodate others.  We had 3 other kids who wanted to go on rides and do things Adrian didn’t want to do.  We tried to make everyone happy.  Sometimes Adrian did ok with that.  Sometimes it ended horribly for everyone.

At this point our other kids have had their chance to go to Disney World without Adrian.  It’s his turn to get the trip he wants and needs.  So this trip we will only ride the rides Adrian wants to go on.  We will take breaks when Adrian needs them.  We will eat when and where it works best for Adrian.  It’s all going to be for him.

I still hope that someday family vacations to Disney with Adrian will be possible… but we have to survive this one first!

April 1, 2012

But Why

“But why does Adrian have to go?  Why can’t he just live with us?”

That’s the question the 8 year old asked me yesterday.  I gave him the answer he’s heard me give a hundred times now, to practically everyone I talk to.

He needs more structure.  He’s wearing poor Mom out.  They’ll help him with his behavior and learning new things.

And all those things are true.  But as I thought about it, I realized there’s still lots of why questions under all those answers.

Why don’t I have enough time, energy and patience to keep this up?

Why is he built to need more structure, attention, activity and intervention than I can provide?

 

I don’t have answers for these.  Only God knows.  But honestly, I’m satisfied with that. 🙂

 

March 25, 2012

Moving.

After the usual red-tape roller coaster, we’ve got a move in date for Adrian at his new residential school less than 2 weeks from today.

I think my daughter said it best when she told me about a discussion she had with someone about Adrian’s move.  “Mom, I was smiling and crying at the same time.” Yeah, that about sums it up for all of us here.

It’s happy.  We really think Adrian will appreciate all the extra activity, attention and structure of his new home.  We think that having a new set of folks look at him through fresh eyes is going to mean gains in academic, self-care and behavioral skills.  We think that the change it’s going to make in our household, especially for the other kids, is going to be life changing.

But it’s also sad.  We will miss Adrian.  We feel badly that we couldn’t single-handedly provide everything he needs to be as successful as he can be.  It’s a decision you wish you never had to make, even if you know it’s the right one.

We realize that neither the smiles nor tears are going anywhere any time soon.  In fact, I’m fairly certain that this transition will be easier for Adrian than any of the rest of us.  It’s going to take us months to reimagine a different way of living – without Adrian here.

November 14, 2011

Making Family Understand

One of the more difficult parts of having an autistic child is that there are no guarantees that extended family will understand the situation. 

We often host family members here at our house.  Part of that is because we are lucky to have a spare room we can loan out.  The other part is the fact that Adrian limits our travel.  Family has to come to us or we don’t see them at all.

Recently I got a call from my grandfather though.   His 90th birthday is coming up and they’re having a big party, of course!   They want us to come.

If only it were that easy.

They live nearly 5 hours away.  We’ve had problems with Adrian on a 2 hour car trip.  And by problems, I mean him banging car windows, trying to escape the car, hurting others in the car, … ya know, really bad stuff.  The kinda stuff that makes it unsafe to drive but you don’t dare stop cause you’re just so desperate to get him home and end the nightmare.

Then there’s the fact that it would require an overnight stay.  Um, I would LOVE, LOVE, LOVE to be able to get away.  I love hotels.  I love vacations.  I love road trips (where the afore-mentioned nightmare doesn’t occur). 

But hello!  We can’t do hotels with Adrian.  We have tried.  We’re lucky they didn’t kick us out.  And that was long before his man-sized tantrums began.  Before the aggression, before the holes in the walls and destroyed property. We simply can’t take him to a hotel.

And then there’s the party.  Adrian can’t attend.  Not only would he be disruptive but he’d be miserable… and guess what his behavior is like when he’s miserable?  He can’t handle crowds or noise.  We can’t even take him to a restaurant without significant problems.

So where does that leave us?  Well, it’s not looking good.  But they really want us to come so they offer suggestions.  “Can’t Chris stay at the house with him while we’re at the party?”  “Can’t you can the other kids come?”

Um, no.  See, Adrian experiences a lot of anxiety when I’m gone.  And can you guess what his behavior is like when he’s anxious?  Every moment Adrian isn’t in school, I’m the primary caretaker.  I have to be. 

Couple weeks ago I left my husband home with Adrian for an hour and a half.  I came back and Adrian had put a new hole in the wall, broken a window screen and was physically fighting with my husband.  It’s not my husband’s fault.  Adrian’s anxiety when I’m not around pushes him over the edge.  My husband works and so he spends much less time caring for Adrian and can’t always see the signs and catch him before he’s gone over into tantrum land.

Besides all that, there’s some sorta testosteroni thing going on there.  Adrian tries to get my husband going.  He will do things purposefully that he knows will anger my husband (hitting me, for instance) and laugh, as if to say, “What you gonna do about it?”  It’s not a good plan to leave these two alone right now.

Again, I would LOVE, LOVE, LOVE to get away for a couple of days.  I spend a crazy amount of time daydreaming about just that.  But right now, it just can’t happen.  It’s not safe.

So that leaves us with what?  Well, Adrian isn’t going anywhere and since I have to be with him, I’m not going anywhere.  The only option left is to send my husband with the other 3.  Yeah, he’s married into this family, remember?  That alone makes it weird. 

Add to it that he’d be leaving me and Adrian home alone.  Again.  Yeah, I’m not gonna lie.  I cried last time that happened.  It’s really hard to have to be constantly left behind.

Most of this was explained to my grandfather and his wife over the course of the phone call.  They say they understand but you can feel it, they don’t really.  They want us to come and they can’t quite wrap their brains around the possibility that there is no way.

I love my grandfather and I wish things were different.  I want to be the granddaughter he wants me to be.  But I can’t do that and also be the mother Adrian needs me to be.

October 18, 2011

Still on SCD

I’m happy to say we haven’t had any more flare-ups anywhere near as bad as that last one in September.   That’s not to say that everything has been absolutely perfect.  There are still days when, for whatever reason, things are a bit harder.   But overall?  Overall our situation is very much improved from the way things were pre-SCD.   Most days we have no major incidents and he’s generally calm and happy.  The tantrums we see are short lived and much more mild.

This diet has absolutely made a huge improvement in our lives.  I can’t imagine going back now.

But Adrian’s little brother can.  Weekly he asks, “When does Adrian’s diet end?”  He doesn’t like the answer. 

As much as little bro misses his American cheese, I don’t feel like it’s really been all that hard on us keeping to our rule that we will not eat things Adrian can’t have in front of him.  The other kids are homeschooled and the hubby works from home so we often will have the ‘illegal’ foods during the day when Adrian is at school.   They still get to eat their sandwich bread and munch on the occasional cookie for a treat.

Dinners we usually either have foods Adrian doesn’t like at all or have things the whole family can eat together.  The diet has had a positive effect on everyone’s diet as I’ve discovered new dishes to try in searching for Adrian safe alternatives to some of our old regulars.  Chicken burgers, spinach in cheese sauce, cauliflower mac n’ cheese and cheddar crackers have all made it into our regular rotation. 

We’ve also seen Adrian’s food list expand slightly as well.  For an autistic child, even ‘slightly’ is a big deal!  He’s now eating additional dried fruits such as apple and pineapple.  And we’ve managed to find a ‘pancake’ recipe he’ll actually eat!  It’s called easy sandwich bread but if it looks like a pancake and smells like a pancake….. So far the only way he’ll eat it is topped with peanut butter and honey.  Still, that’s another meal I can send for lunches.  Yay!

So we’ll be continuing the SCD for as long as it continues to offer us this much more peaceful life.  Even if it means no more American cheese 😛

September 19, 2011

Duct Tape for Life?

So this past week was rough.  It started out ok.  We were seeing more aggressive behaviors and much less calm from Monday on.   We know he ate part of a wall at one point and I discovered that a pizza dough I made used an illegal parmesan cheese.  He’d eaten that on Sunday and Monday. 

So ok, we fix that and we’re good.  Right?

Wrong.

We never quite got back to that good spot again the entire week.  We did ok but it wasn’t the same.  While he was coming down from tantrums faster than before the diet, we were still having tantrums all the sudden when we hadn’t had any for weeks.

Hmm.

Then Saturday and Sunday came.  And it was awful.  Right back to as if we never started the diet.  WHY?

We just don’t know.  We keep things Adrian can’t have locked up in a footlocker.  We did find that wide open on Saturday at around 11 am.  But despite the fact Adrian must have been in that room, we can’t see what, if anything, he took.  There were muffins, candy, chocolate chips, rolls and cereal all there, seemingly undisturbed. 

The only thing he could have taken that wouldn’t have been obvious was granola and cereal bars that were all thrown in a plastic grocery bag.   But then there would have been wrappers and we didn’t see any.  Granted, I didn’t go searching through the garbage.  I wish now I had.

Saturday was bad.  Sunday was worse.  Today the school had the worst episode they’ve seen since the start of the school year.  He came home with his shirt all ripped up from a rage – Hulk Hogan style.  He’s been crazy here since he got off the school bus two hours ago.  And all of that was with using all the meds. 

The worst part of it all is I just don’t understand why.  What’s different?  Is it something he consumed?  If so, what?  Could it be he got to something in that box and it’s just taking longer than the usual 24 hours to go through his system?   Could it be the dried pineapple that I was so happy he finally ate on Saturday and Sunday?  Is it something else in his diet that I messed up with?  Is it something he was eating before that he’s reacting to now?  Does it have nothing to do with food at all?!

At this point you could tell me it’s nothing more than the phase of the moon and I’d be happy.  I just want to know WHY.

The return of these behavior problems brings back all the old familiar stress.  I can feel it in my back and in my shoulders.  I’m listening to him carefully, trying my best to catch him before he goes over the cliff into total lack of control, waiting for the smash of a window, the banging on the wall, the yelp of a poor sibling who happened to be in the wrong place at the wrong time,  another broken appliance, another hole to fix, …

I’m sitting here with duct tape now, repairing the computer headphones he broke in a tantrum.  I’m covering every last inch with duct tape.  It’s the only way we can make them last.  Then I’ll duct tape a new set of ear buds for his music player because after months of abuse, he finally broke the last duct taped pair.

And I can’t help but wish that duct tape could fix all of this too.

August 25, 2011

Not Enough

Yesterday we went for our second swim with our new community center membership.  I’d gone out of my way to figure out the logistics ahead of time.  I scoped out the place while Adrian was back in school, asking lots of questions about the family changing room, disable accessible restrooms, the pool itself, floaties for my non-swimmer, etc.  

I went to purchase the membership by myself so I could focus on refining all those details a bit further.  So far, so good.  Everything looked perfect.

Our first swim went…, well…, swimmingly!  I checked in with the lifeguard about rules, learned where to find the floaties, figured out where the open swim section was.  It worked out great for everyone.  The 3 other kids swam in the shallow section while I took Adrian for laps.  We all had fun and it was great exercise.

Then we went back for our second swim.

And they gave me different rules.  They wanted me to be within arms length of the youngest at all times.  But he wasn’t allowed to go to the deep end where I’d been doing laps with Adrian.

I explained the situation and tried to offer other solutions…. Zee could wear a life vest instead of a floaty?  Could the two 13 year old girls watch him instead of me?  Nope.  Nothing.  The nice pool manager lady was kind enough to take it all the way to the top management but, citing insurance reasons, the answer still came back a big fat “NO.”

I thanked her for trying and said I understood – and I do – but I still walked away tearful.  It’s just the icing on the cake for a summer where Adrian’s autism has left us severely limited in what we can do. 

First there was the family wedding in Virginia.  My husband took the 3 kids and I stayed home with Adrian.  They had a wonderful week-long adventure and while I’m happy for that, I was left behind.  There was no other way.  We couldn’t have made the trip with Adrian.

The whole summer I ended up driving Adrian both to and from school.  The bus situation the school offered for summer school was more than he could have handled.  That’s 2 whole hours out of each day I spent doing nothing but driving back and forth. 

To make matters worse, the only way they’d allow Adrian to earn extra swim time was if I came to the school and drove him to camp myself.  Why?  Because he’d jumped out of a running car on a teacher just last year and can’t be trusted.   Add an extra hour to my daily drive time.  Three hours in the car!

That didn’t leave much time for anything else.  The other kids and I couldn’t go anywhere because it was always time to drive Adrian somewhere.

Then summer school ended and one would think we’d gain more freedom… um, yeah.  Adrian literally goes nuts every day till we go out somewhere.  But there’s no where to take him!  He’s upset and pinchy in the stores, I can’t take him to a park or that because of the new running problem and he gets upset in the car if you drive too long or if he doesn’t understand where you’re going.

My husband had a business trip and due to weather problems his flight was cancelled.  He decided to make a road trip of it.  I wanted to go with him so badly… but there was no way to take Adrian.  You can’t take Adrian to a hotel because he’s too loud and there’s the potential for him to destroy the place the way he’s destroyed our house.  Even if there were accommodations, what would we do with him all day?  It’s just impossible.

So my husband took his mother.  And once again, I got left behind.

I’ve racked my brain trying to figure out where we can go, what we can do with Adrian.  This swimming thing was it.  It was our only hope of getting to do something fun, something beneficial for everyone.  

And once again, there’s just not enough of me to make it work.  It’s not fair to the other kids, it’s not fair to Adrian.  I’m totally frustrated with the whole thing.  I can’t give everyone what they need and deserve.  There’s just not enough of me.

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