Autism and Disney World

Here is something you don't know.  I am a Disneyphile of the highest degree.  

I grew up going to Disneyland.  I've been to Disney a number of times over the years and though I know the bottom line is corporate is out to get my money, I can't help but get excited when I see those iconic mouse ears or any of the other characters.   

It all started with my parents who honeymooned at Disneyland way back when.  Then as we grew, they took us to Disneyland each and every vacation they could.  If my Dad had a conference in LA--we added an extra day for Disney.  We saw just about every Disney movie that hit the theater in rerelease and then in VHS format.  If it was Disney, we were on it. 

For my parents' 30th anniversary, they sponsored a family trip to Disney with everyone.  My oldest sister was the only with kids at the time, and I was fairly newly married.  Since then we've all gathered (with our own funds) for their 35th, 40th and our next gathering is planned for their 50th.  

Our combine family trip in 2002 should have tipped me off more.  Whirlwind was pretty young and could not stand any lines.  He got in other people's spaces, but hated it when they were in his.  He had no patience and was over stimulated and hyper.  I spent a good part of the trip taking him outside to calm down.  I thought it was age, though I knew his behavior was more exaggerated than other children the same age.  

For my parent's 40th anniversary, we first tried taking the Nintendo DS each child had gotten for Christmas.   It helped in the line situation, but the kids were "plugged in"  and they got overly grumpy as they often do when they have too much game time.  Conversation was nonexistent.   We still had meltdowns, though not as many because the DS's would keep them distracted in lines.  

And so it went.  We'd make the best of our situation and press onward.  

We had good times.  I'll never forget when Lawboy first saw the Playhouse Disney (now Disney Junior) performance.  He was so excited to see Bear in the Big Blue House.  

The things they would see on those trips led us on journeys of discovery about so many topics.  Whales and dolphins were a favorite for years because of our side trip to Sea World.  (Did you know orcas are technically the largest members of the dolphin family?)  Soarin' was a contributing factor to the airplane obsession.    The first time we went to the  Smithsonian Air and Space museum I asked Firstborn to tell me about the planes and he did--more than the placards in front of the displays.  The Boneyard in Animal Kingdom contributed to the dinosaur phase.  Those are just a few examples.  

Part of the reason we struggled for so long is we simply didn't know recognize our children's quirks as anything but quirks.  We thought Firstborn was simply shy.  He was a bit more anxious than other children, but nothing more.  His fear of loud noises and the dark would be something he would grow out of.  

We were wrong.

Whirlwind was just hyper and impatient.  We did recognize ADHD around 2007, but it took much longer to realize he too had difficulties picking up on subtle distinctions in tone and body language.  We thought his moving into other people's space was a reflection of his hyperactivity--not that he actually had trouble recognizing another person's space.  We thought he had some trouble regulating his emotions, but we didn't understand that it was related to the mixture of things going on with him. 

The journey in getting our children diagnosed or evaluated are topics for another day.  

My purpose in writing first of two parts on Disney with ASD children is to help other families with one or more children on the autism spectrum learn from my experiences and hopefully avoid as many pitfalls and frustrations as possible.  Each child on the spectrum is different and has slightly different symptoms or aspects of autism.  No two children are alike and that is especially true in my family.  

Fast forward my account to this year, 2011. I had heard of disability passes at amusement parks in the past, but it wasn't until my dear friend Michele who also has an ASD child told me that children with autism qualify for those passes that things changed for us.  

In my opinion the cast members at Disney were very kind to work with.  A disability pass is good for groups up to six people.  From there we were told to present the pass to cast members at each ride line entrance and we would be directed to the proper place to line up.  Most of the time it was the fast pass line, though occasionally it was the queue area for people with physical or mobility disabilities.  These lines often had minimal if any wait time which was the biggest blessing to our family.  For once we were able to stand in line and talk with one another because the waits were as minimal as they were.  My children are working on their reciprocal speech skills, but they are pretty good at answering questions and in those moments waiting (which was never too long to create meltdowns), I got to learn a lot about what they think about.  

An added bonus with the disability pass--it eliminated the need to run from one end of the parks to another in an effort to use our fast passes.  The running back and forth was difficult for our kids (run and wait, run and wait), and they hated passing by rides they wanted to see, but couldn't because of deadlines (fast pass times, reservations, etc).  

We picked a less busy time of year for our last vacation.  It meant it was too cold for us to go to the water parks, but the tradeoff in lower crowd levels was worth it to me.  I also changed my expectations for our vacation and we took it at a slower pace which also worked for my family.  It was a big change for me, but it made for a happier family overall.  My children need time for transitions and are often slow to get moving in the morning.  I have to admit at times this drives me a little nuts, because I grew up getting to the parks before they open and riding as many rides as possible in that golden time zone before the majority of the crowds get there.  

With these changes we ended up having our best vacation ever.  It was relaxed and fun and better than I ever dreamed we'd be able to have with our challenges.  

I'm breaking this up into two posts because of length.  Stay tuned for part two where I list my specific advice for a Disney trip with children on the autism spectrum.

End of the School Year Craziness and Summer Plans

What a crazy time for us!  End of the year concerts, recitals, award ceremonies and the like.  Some of the kids have year-end tests/benchmarks as well.  We've signed up for a number of activities this summer--I don't want the kids to lose the structure and routine of the school year.  And as always we are fitting in dentist appointments, orthodontist appointments, well visits, etc.  

I've been working on a couple of projects for the family too.  The first is a digital scrapbook of our much-needed family vacation last year.  Last year we managed to save enough to go to Disney.  (It's expensive for a family our size).  This last year my friend and I were talking about our family vacations, and she told me we can get disability passes for our boys at a lot of amusement parks.  Why I didn't already know this is a mystery.   

In any case, the kids have been talking almost non-stop about our last Disney trip and so I found a free dining plan offer and we're going to take the kids to Disney World in the fall.  

Knowing my kids need more time to adjust to ideas, I've worked on a literary scavenger hunt with clues which tie into the books they love.  They'll follow the clues and at the conclusion will be the  scrapbook of our last Disney trip.  I've put a note on the back cover that tells them we'll be going back to Orlando in the Fall.  This time we'll also go see Harry Potter at Universal Islands of Adventure.  

So Firstborn's birthday is at the end of the school year.  Our plan is to take them out to dinner at C1's favorite pizzeria.  I've got some parchment looking paper on which I'll print in green ink (like Harry Potter), a letter for our literary school for the summer.  I'll have the waiter or waitress tell him an owl dropped off the letter for him.  (Did I mention Firstborn LOVES owls right now?)  I'll address the letter something like Firstborn, middle table at Pluto's Pizzeria , Small Town, USA.  (I hope you get the idea).  

When they get home I'll send them around the house on a scavenger hunt.  They'll come across wands (chocolate dipped pretzel sticks), brooms, their bows and arrows, their Mickey Mouse ears, and Harry Potter music  as they learn about the activities we have planned for the summer.  (Scout camp=Ranger's apprentice, classes at the community college, swimming lessons=Percy Jackson and the Olympians,  day trips to our local state park with a beach, trip to see Grandma and Grandpa, excursions to a museum=Kane Chronicles, etc).  

The final treat will be some Mickey Mouse cookies I'll make and literally put in the "cupboard under the stairs".  

I'm excited to see how this goes.  I've always wanted to surprise my kids with a trip to Disney, but this is about as close as I think I can safely get--this will allow time to process and plan. 

If it goes well, I'll create another post with instructions so you can duplicate it too.  

UPDATE:  The list of clues and hiding places can be found in THIS post.  

Getting Answers We Don't Want

In January I posted about letting go, it has been a real struggle to do that.  I didn't want to give up if it was in the Lord's plan for my husband and I to have more children, but I was trying to let go of it being in my hands.  Baby things are expensive, and I have managed to get to the point I'm willing to give away our baby things if I felt it was the right thing to do.  

Ever since C4--Princess Ballerina's birth I have felt that we had two more children that needed to join our home.  Her brother, C5-aka Trainboy, is one of those children.  I've been wondering if our two little babies I saw heartbeat and movement were the reason I still feel our family is incomplete. 

I've been feeling like I am in limbo.  I've been trying to patiently wait the for the answer to my prayers regarding the size of our family.  Very recently it came.  

It is a very personal story, and I don't want to go into too much detail, but I do want to share some things.  I have been praying for help in being patient for the Lord's answers regarding our family.  I have been trying to make more opportunities to hear the whispers or promptings of the Holy Spirit--that divine guidance I believe we can all hear if we try.  

The answer I got was that I had done enough for our family and I could move on.  I should focus on my family as it is now and do all I can for them.  I wept with gratitude when my answer came.  It's not the answer I was hoping for, but I know it is the right answer.  I feel at peace.  

Not long after getting this answer I learned of some people who could really use some baby items.  I am happy I could help in whatever small way I can.  

My heart stills yearns for another baby, but I trust in the Lord.  I trust that if I can align my will to his I will be better for it.  

I am grateful the Lord answers prayers and for His infinite wisdom.  

If you are struggling with putting your trust in the Lord, if you've gotten an answer you don't want, I encourage you to just do it--just trust.  Our Heavenly Father knows you and what you need.  I know this.  I know that there is peace, comfort, and safety in the arms of the Lord. 

May you have a wonderful day and know that you are loved. 

Trainboy is evaluated

We met with a neurologist and someone who works in speech who administered an ADOS evaluation for C5.  They determined that yes, C5 meets the criteria for being on the spectrum.  He is overly formal in his communications at times, blurts out random phrases like, "Thank you for shopping at Wal-mart" and had a hard time participating in the imaginary play they tried to engage him in.  The official diagnosis is PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified).  He would probably qualify as Aspergers, except that he had language development issues (would say a word and then lose it), and now he speaks well.  
 

It is my same sweet little boy, but I still cried when I got the diagnosis.   

Our little babies are such miracles.  The first thing you do is count those little toes and fingers and you know that your baby is perfect.  

As Trainboy has grown I've been paying more and more attention to things he has had a hard time with. When he was almost two I got him on the waiting list for a speech evaluation because he wouldn't talk.  Our friend and her daughter (who was his favorite babysitter ever) came to visit us in our new home almost two years ago and through their help, coaching and encouragement, Trainboy finally started talking.  At that point we really worked on colors, alphabet and more.  Every day we practiced what animals said, labeling trees, cars and any object we could see.  By the time we had C5's evaluation, he was no longer considered speech delayed enough to warrant any services.  He knew his colors and alphabet too well.  

Talk about a Catch-22.  I worked with my child because he needed help, and because I worked with him, he didn't qualify for help.  What am I supposed to do, let him fail just so I can get him the additional resources we need?

This time, in 2011 I took his diagnosis to the school district--I was hoping we could establish an IEP going into school and get him into a preschool setting so he could start having more than Sunday interactions with kids his own age.  I was hoping we could work on some of his issues, and I also was looking for something more structured than just a playgroup.

The school shut me down.  They basically wrote off the ADOS evaluation scores because of who administered it.  

They did offer some speech help based upon the other speech evaluation.  It's a small step, and not nearly as much as I wanted, but hopefully this will be the first step in getting him more services.  We'll see how the speech help goes.

More Goals

I confess, I'm putting off more housework while I write this blog. I at least have the dishwasher running while I write, but I have laundry to do and the piles of papers on my dining table and the stuff to clear away from the basement wall, and a to-do list that has completely filled up the space on my Franklin-Covey compact planner.

I'm taking this time though because one of my goals this year: aside from losing the inches around my waist, arms and legs I mentioned is to write on a more regular basis and improve my writing skills.

I love to write. I really do, and I have an inkling of an idea for a story I'd like to develop, but I know that like muscles, that you need to regularly flex and work, you need to regularly stretch your writing skills as well. So I'm stretching just a bit as I wait for my dishwasher's cycle to be complete.

My goals:
1) Record what I eat on a daily basis (posted yesterday).
2) Exercise at least 4x /week with strength training at least 2-3x. (Didn't clarify that one did I?)
3) Write a couple of paragraphs every day on this blog (at the minimum).
4) Spend 3 hours a week writing on various stories. That works out to be about 1/2 hour per day. (With Sunday off). Try to finish of one of my stories by July 31.

Will post more later. Train boy (C5) is done with his game and needs mommy time.

Wake time:
Breakfast time:
snack
Lunch time:
snack
Dinner:

Exercise:

Moving Forward

So now that I'm letting go, I'm ready to move forward. I've posted goals for myself on my fridge so if I am tempted to go sneaking unhealthy food, they are staring me in the face. One of my goals is to tone up and lose some inches around my waist, arms and legs. (I'm not going to focus on the pounds, but I'm hoping to build more muscle mass which weighs more anyway). I have pictures of myself before C5 was born and I was more tone then. I'm using that as motivation. I do not unrealistically expect to get back to my pre-kid size, (the hips are just too darn wide), but I can expect that I will treat myself well and give myself the best chance possible for a long and healthy life.

My good friend D, who recently completed her Personal Trainer certification has been urging me to write down what I eat and how much. I recently read an article where people who held themselves accountable on their blogs for what they ate, lost a lot of inches and pounds.

So in that spirit I'll be trying to record what I eat and how much and I'm putting it out there for all to see so I hold myself more accountable.

I've got to go to the store now since I've finished off both my baby carrots and my baby spinach. I've got an eggplant I plan on roasting for dinner along with some shrimp. \


Wake up time: 7:00 am
Breakfast time 8:30 am 1 whole egg, 1 egg white 3-4 carrot sticks
snacking on 4-5 carrot sticks throughout the morning.
Lunch: 11:40 am 1 c white rice (I know it should be brown, but I have white cooked and on hand!) 1/2 c chicken sauce 1 big handful of baby spinach.
Dinner:

Exercise: Umm, cleaning the house?

Letting Go

I’m writing this with a heavy heart.  I’ve been hoping since the last miscarriage that we’d be able to get pregnant again.  My family doesn’t think I should even try.  They all seem to take the ectopic pregnancy and two miscarriages  as a sign I’m not supposed to have anymore kids.  I haven’t wanted to go there in my thinking.  It is hard not to when despite only having one tube, I still managed to get pregnant.

I know that while I’m overweight, there are no major medical problems.  Until I got sick in November, I was exercising 3-5 times a week and I had started to tone up and lose inches around my waist. 

My husband has traveled a lot this last year, and I’ve got some major responsibilities with my calling at church (We are asked or “called” to serve in various capacities in our church.  It’s all volunteer—no pay.)  I’m the head of our women’s group at church aka ward Relief Society president.  I’ve got two counselors (other women) to help me, but there is a lot to do.  It’s a juggling act at times. 

I have been praying for guidance and the answer I got was to be patient.  That was a hard answer to get because I know that with every passing month, my chances at another successful pregnancy become slimmer.  

I’m not always good at being patient, but I’ve done my best.   I’m waiting and trusting in the Lord’s plan for my family.  I’ve watched good friends and my sister get pregnant, and give birth.  Two of those babies were due around the time mine were due.  Recently I learned that five women at church are pregnant.  One of whom is a good friend of mine, is pregnant with her eighth.  I knew she and her husband had been discussing having just one more child, and now they’re on their way.  

On the other hand, I’ve begun to see the light at the end of the tunnel and it’s exciting.  My youngest is almost potty-trained, and next fall he should be in preschool.  I will have a couple of hours in which I can grocery shop or run errands sans kids.  That hasn’t  happened in over a decade.  A year and  a half from now, he will be in kindergarten, and I will have more than a few hours by myself.  I’m starting to look forward to that possibility.  

As each month has passed, I’ve see-sawed back and forth between wanting a new little one, and remembering how much work new babies can be.  I went to a book club group where several ladies were pregnant and of course labor and delivery stories came up.  I remembered how much I hate hospitals after the delivery is over, and how edgy I get when I don’t sleep because of the relentless checking-in that can happen.  

I don’t rest when my babies are in the nursery because after labor I am hyper-alert to certain noises.  Every baby that cries I wake and wonder if it is mine.  I’ve tried sleeping with the babies in the room, but every time one of them makes a noise I wake, sit up and look around to see if the baby is waking up or just making noise.  Finally I learned the last time around (with number five) to keep the baby in the bed with me.  He would make his normal newborn sounds and I would just open my eyes to see if he needed me.  If not I would drift back to my dozing/slumber state.  I was always very cautious (I’ve read and heard too many horror stories to not be), and I am a light sleeper, so I took the necessary precautions to protect both of us, and was able to get some sleep for once.  Still, I didn’t fully rest until I came home from the hospital, and though I’ve talked it through, I still get tense thinking about the post-partum stay because of what happened with my fourth child (a really bad reaction to medications that left me sleepless, hyper and hysterical for three days).  

Then there are the midnight feedings and lack of sleep until the baby is big enough to sleep through the night.  The diaper rashes, thrush, and how much nursing hurts at first until your body is used to letting down your milk.  

Oh, but the sweetness!  Is there anything that smells sweeter than a new baby?  Isn’t rocking one of them to sleep against your shoulder one of the best privileges life has to offer?  And isn’t looking at the miracle in your arms and knowing they are fresh from Heaven one of the most exquisite and humbling experiences you can have?  

I’ve been so torn, but I’m close to 40, and frankly biology is playing a bigger and bigger role in this. 

So I’m letting go.  I'm lettting go of the control.  Frankly, it's not in my hands--it's always been in the Lord's hands.  Sadly I'm also trying to let go of the hope I will get pregnant again.  I’m trying to learn to be content  with the fact I’m not likely to have more children.  I am admitting it is out of my hands.  I can’t quite bring myself to get rid of all the baby clothes just yet, but I’m getting there.  

Today I got rid of the pregnancy tests in the picture.  I’m not sure why I was holding on to them. I guess in some ways they are reminders of the babies I had lost.  In other ways, they are anchors holding me in place—not allowing me to move forward because of their weight.  

So they are gone.  They are in the trashcan at the end of the driveway, and they will be gone for good tomorrow morning.  I plan on selling/donating the car toddler bed that is taking up space in the basement.  The baby clothes I don’t want to hand down will go in their boxes and on racks in the garage and get one step closer to leaving the house.   I can’t quite bring myself to get rid of them, because I don’t know what God has in store for me, but I can put them someplace they don’t take up mental energy. 

I am determined to not take this time with the kids I have for granted.  My oldest still talks to me and likes to do things with me.  The youngest still loves to snuggle.  The rest fall somewhere in-between, and so I’m trying to do more things with my kids. Play more games, read more books, make more crafts together.  They are my gifts from Heaven and they deserve a mom who is fully vested in the present, and not mired in the “I wish” of the past.  

I wish you many moments of joy today.