52 (more) weeks of autism

•September 22, 2013 • 1 Comment

Well I’ve done it!  I have blogged for 52 weeks about our lives.  Now what?!

I suppose I have several options.  I could keep writing and change my blog name to “…and now for the rest of our life with autism.”  That’s not very catchy.  I could pat myself on the back for the accomplishment and fall off the face of the blogsphere (?).  I have enjoyed my time blogging and the deadline to actually make me stop and take a minute to reflect.  So, what I’m going to do is keep blogging AND keep my blog name.

Ali has two diagnosis, mitochondrial disease and autism.  Both, at this moment, have no cure.  In fact, scientists aren’t even quite sure why they occur…..yet.  They affect our life 24 hours a day, 7 days a week, 52 weeks a year.  We don’t get a vacation from autism or mito.  We have some really great days, but they are never “normal”.  I will keep sharing what happens behind our 4 walls to keep educating others about both mito and autism, but especially autism because it affects our lives so profoundly…..today.  I will keep sharing to provide a soft place to fall for those who are going through similar experiences and need to know someone else understands.  I will keep sharing as a form of therapy for myself.  I will keep sharing so I have documented and don’t forget our crazy lives and where we started.  I will keep sharing for Ali.  The more people who really understand her the more access she will have to life outside our 4 walls.

I hope those of you who have followed along will continue to ride this roller coaster with us and enjoy a glimpse into one family’s 52 weeks of autism.

Advertisements

52 weeks of austim

•September 15, 2012 • 3 Comments

If you are reading this blog, welcome!  I am a mom of 2 wonderful children.  As I say, a typical 11-year-old boy and a not so typical 8-year-old girl.  My daughter is diagnosed with mitochondrial disease and autism.  This makes life very interesting.  When crazy things happen in our lives I always say “I need to write that down so I remember!”, but never seem to find the time.  I am much more likely to do it if I am accountable to someone else, hence the blog idea.  I will share stories of joy, sadness, hope, and crazy fun times.  I’m not looking for a million readers, but chose to do this as an outlet for me.  If you find yourself on this page, however, I hope you have a few laughs and take away a better awareness of differently-abled people!

A “Grand Adventure” Part 1: Success

•June 16, 2018 • Leave a Comment

Q is getting older.  He is about to enter his junior year of high school.  There are a lot of adventures we have wanted to take, but couldn’t quite figure out the logistics.  So with Ali’s behavior being more manageable and our new chair, we decided last spring break to take a trip to the Grand Canyon.

It has been on our bucket list for a long time.  Traveling there and back was our biggest obstacle.  I had researched travel by train or renting an RV.  Both sounded fun, but required a longer trip and we only had a week.  Flying had been off the table for quite some time because it was not something Ali had done since she was little and never for long flights.  I have seen the stories of families with children with special needs being kicked off of flights or harassed by other passengers and I had decided flying with Ali was just too risky.  But with only a week of vacation time and the window of Q’s time with us for adventures closing quickly, I decided we needed to try.

Not being one to “wing it”, I researched flying with special needs children ad nauseam and found a few helpful bits of information:

  1. Southwest and Jet Blue consistently were applauded by special needs parents as the best airlines to fly.  The staff seems to be trained on when to intervene and when to  provide a smile and kind words of support.
  2. If you call in advance, the TSA will meet you at the security check point and walk you though.  You can provide information in advance on the best ways to interact with your kiddo and they will try their best to meet your child’s needs.
  3. Occasionally, airlines will host mock flights for children with special needs.  These are an awesome way to test going through security and boarding a plane during a less busy time for the airport without extra baggage and travel gear.

Ali and I got to attend such an event put on by American Airlines about a month before our flight at our local airport.  We went through security, put her magazines through the x-ray machine, and had her hands and chair tested for explosive residue.  She though it was pretty fun.  We then boarded a real plane full of other special needs children and their caregiver, listened to a magical voice from above tell us safety instructions and drove around the airport, at one point going fast like we were going to take off.  No one was concerned with what Ali was doing, they were all focused on their own kids.  It was pretty awesome.  Ali did well until the kiddo in front of us, while we were boarding, got nervous and had a little breakdown.  He got it together after a few minutes, but Ali assumed there would be dentists on the plane because why else would he be so upset?  The rest of the “flight” she yo-yo’d between glee and terror that someone was going to look at her teeth.

We discussed the flight with Ali’s psychiatrist and tested out a few anti-anxiety meds at home to determine which would work best for her in the event she became inconsolable during the flight.  We worked for months trying to wear head phones on her ears so she could listen to her I-pad on the flight without disturbing other passengers.  I chose an evening flight so Ali would already be winding down.  I packed a bag with all of her favorite items and few new things I thought might keep her busy.  I made the pre-check appointment with TSA and had personal contact information for an agent to help us through security.  It was planned down to the letter.

earphones

Then we had a huge Indiana snow storm…..at the end of March….that canceled our flight.

We would miss two days of our trip, but they could get us rescheduled.  So Michael worked to find a flight out of a nearby airport that would ensure we only missed one half  of a day.  So we drove 2 hours to another airpot the next morning.

I contacted TSA, but with delayed notice at the new airport we had to wing it.  I think the practice was helpful, but this airport was unfamiliar.  A 2 hour drive before a 3.5 hour flight was a lot for Ali.  I would love to say she nailed the flight, but she didn’t.  She was antsy.  We were sitting too closely to her and she wanted us to move.  She wanted to be “all done”.  She was feisty and hitting Michael and pulling what hair he has left.  I tried a couple of items from our “bag of tricks” but everything became something to hit you with or throw.  We had to resort to the meds, which made her sleepy, but she didn’t lose her sass.  Still, people chose to sit by us even though they could clearly see we were going to be a shit show.   It was rough.  The silver lining is I don’t think we bothered anyone other than those sitting directly beside us.  The flight attendants could see we had it under control and kindly checked to see if we needed anything, but mostly left us alone.

We had a lot of family and friends watching out for us and following our journey.  When we landed I posted to Facebook:

“We made it!  Ali LOVED take off and then was done.  A huge thanks to Southwest for being so kind and not kicking us off of the plane. #autism”

Another special needs mom responded with “Success!!!!!”

I laughed.  Only another special needs mom would have found the journey from point A to point B, no matter how challenging, a success.  But it really was.  We did it!  We went way outside of our comfort zone, took a leap of faith and enjoyed a “memories to last a lifetime” trip.  It was wonderful.

Happiness does not come from doing easy work but from the afterglow of satisfaction that comes after the achievement of a difficult task that demanded our best.  ~ Theodore Issac Rubin

The little pink chair.

•June 8, 2018 • Leave a Comment

It’s been awhile.  I’ll try to catch up over the next few months.  I have been reading my previous posts as they pop up on Facebook Time-Hop and it’s bittersweet to re-read them.  We’ve come so far, but it’s easy, when you are making slow and steady progress, to miss how impactful the changes have been overall.  It’s fun to re-read them and think “Oh my gosh!  How could I have forgotten about that?”  or “We thought this would be our life forever, but Wow!  how it’s changed!”  So, I feel the call to blog again, if for no other reason than to not forget our crazy journey.

There are many stories to tell, but I’m going to start with this one because it affects so much of what we’ve been able to do…..

Ali has had a “chair” since she outgrew her stroller.  At first, we used it because she was still pretty small and struggled to keep up with us when we were out and about.  The mito made her stamina pretty miserable, so it was useful when we went on vacations, to the park, to the fair, to the mall or any where that she might need to walk long periods of time.  Her body would simply peter out and it was a necessity.

Because we mostly used Ali’s chair while out in public at larger venues it because Ali’s comfort zone in those places.  She knew what was expected when she was in her chair.  No one would try to touch her to pick her up and she was not required to hold someone’s hand (two things she hates for sensory reasons).  She could have her magazines to comfort her or her blanket to cover her head if it was too much.  Your body can’t be put on a ride on the boardwalk, or sat by a stranger with arms touching, or in any other uncomfortable situations that sometimes arise when out and about.  In her chair, she was in control of her own body and environment.

We had been using her chair “as necessary” for the last several years, but those needs had changed and she had grown in many ways.  Her stamina had greatly improved.  She could walk from point A to point B without being redirected multiple times, if there where no other major distractions.  And she had just grown larger over the last 10 years as children do. We, as a family, have learned to modify our outings in such a way that Ali can participate for the most part without it.  We had begun to use the chair primarily when we thought it would be easier to use it than manage her behavior.

Q began playing basketball for his high school team this winter.  We were in a different high school gym several times per week.  They were all very different.  Some could control the acoustics, some could not.  Some had a live band, others had a DJ.  Some had a rowdy student section, some did not.  Some required you to sit elbow to elbow with fans, others you could have an entire section all to yourself.  We began using her chair a lot more frequently.  She was happy in her chair.  She enjoyed watching the games and cheering along.  It became a happy event that we could do as a whole family.  We don’t have nearly enough of those.  And, selfishly, I wanted to watch Q play basketball.  I didn’t want to deal with her anxiety levels the entire game over where were sitting, whose hair did she just touch, breakdowns over noise levels when the band played or when shots were made.  In the chair she was happy and so was I….sort of.

Mom guilt is a very real thing.  I sat in my behavior therapists office (I’ll call her mine, because truth be told she instructs me on how to instruct Ali) and said “I should be working with her at the games.  I know, but I also want to be Q’s mom not just Ali’s.  I want to be able to say ‘Yes!  I saw it!  It was awesome!’ when he makes a great defensive play or chat about the refs calls and cheap fouls on the way home, not ‘I’m sorry buddy.  I had to take Ali to the car because the cheering pushed her over the edge and she was hitting.’ like I often have to do.”  The therapist is never one to mince words, one of the many reasons I love her, and she reminded me of this before she said “What happens if Ali is 30 and potentially living on her own and she goes out in public to an event, pushes her chair in, and sits in it and watches a game?  Nothing.”  Thats right.  We have found a way to enjoy outings as a family, all of us, without anxiety.  What is wrong with that?

So, I began the process of finding the right chair for Ali, with the help of our Riley Hospital team.  She was able to choose her own colors this time around, and it is hot pink, cheerful and loud.  Just like Ali.

chair 1

We were able to use the chair to take a vacation this spring that was outside of our comfort zone.  We all had a wonderful time and were able to experience things as a family that I wasn’t sure we would be able to do.  The world has become a larger place for us to explore.  We only have a couple more years with Q to have the time and desire to explore with us.  Is the chair a necessity?  I think it is, for now.  I am content to exist and explore and enjoy the world with a little pink chair.  I have no mom guilt…..about that. 🙂

 

Feeling at home.

•August 19, 2017 • Leave a Comment

If you live in Indianapolis Indiana or the surrounding areas, in August there is one thing you talk about. The State Fair.

It is the most interesting display of humanity that can be found in our great state and people watching is always fun. It is not far from our house so we typically make the trip a few times to make sure we get to do everything we like to do. It’s a tradition.

This year I went with Q, by himself, before school started so he could see and do what he wanted. Ali has been struggling with increased anxiety and I wasn’t sure how much she would like the fair this year. Normally, she enjoys the animals, any music we can find, and, of course, the fair food.

I’m glad I took that time with Q because our trip with Ali was anxiety-riddled and, as is expected at the fair, we got nasty stares. I know they are coming, but they always catch me off guard nonetheless. Maybe it’s because we live in a bubble of kindness.

I was chatting with a friend earlier this week who had not yet been to the fair and she asked if we had fun. I started to recount our visit and what, at the time, had seemed like a pretty normal fair trip for our family. When I stated telling the story out loud it became so comical that soon we were laughing at what my “normal” has become.

We arrived about lunchtime and decided to eat first. Michael’s favorite place to eat is the Dairy Barn, they serve all things….you got it…..dairy.   Michael and Q ordered grilled cheese sandwiches, chocolate milk, mozzarella sticks, and milkshakes. Q got a meal that includes applesauce, you know, so it’s healthy. Ali is not great with dairy so I grabbed her a corn dog and we found a shady spot to eat and wait for the guys. Only, every one loves the Dairy Barn and we waited forever. Ali was getting restless by the time the guys arrived and had eaten her corn dog so we gave her the applesauce while the guys were eating. She ate it for a little bit until she decided she was hot, it was too loud, and too overwhelming and she threw her applesauce at me.

She immediately began crying because I don’t think she really wanted to throw the applesauce. Nevertheless, she had committed to it and held it way over her head before hurling it at me, which caused it to drip on her head before launch. She was rubbing applesauce all over her face and hair while I was busy trying to find a towel to clean the applesauce off of Q’s clothing, since he was meeting friends later. I then took my applesauce covered self and Ali to the closest bathroom to do a through clean up in a quiet area. She was screaming at this point and I didn’t want to walk the extra 100 feet to the handicapped restroom but instead choose the closest one. There was long line of stalls by the sinks and then a small hallway in the middle that led to another long line of stalls. Perfect. We would use the back hallway where we could find a quiet corner and be all alone. The stalls were small, so I got Ali out of her chair and onto the potty and began to clean her up.

A couple of minutes later a girl comes around the corner in an electric wheel chair. I assumed she was looking for the handicapped stalls and in an effort to be helpful I said “There are no handicapped accessible stalls in here, but I think a little further down there are some.”

She replied “No I wanted to sign with your daughter.”

“I’m sorry?”

“Is she deaf?”

“No, she has autism. She can talk a little, but she can also sign.”

During the next few minutes she shared with me that her boyfriend was deaf so she knows sign language, including some bad words, she has cerebral palsy which is why she’s in her chair and she is bi-sexual. Now, I have issues with none of these things, but they do seem like odd things to share with the lady covered in applesauce in the fair bathroom. And yet, in the moment, it didn’t strike me as odd, until I retold the story out loud to my friend. Why? Because this is our life.

I have a friend who is a terrible housekeeper. She knows who she is so I’m not going to call her out. I love her. When I go to her house she apologizes for the mess and I always say “Why are you sorry? Your mess makes me feel better about mine! I feel totally at home here.” I feel like maybe our family provided the same service to that girl at the fair. Our $#!+ show made her feel like she could come right into the fair bathroom and tell us all about her life. I mean, seriously how could we judge? We’re screaming and crying and covered in applesauce. Really, I should feel proud that something about us made this girl feel at home.

I finally let her know Ali needed a bit a privacy to use the restroom and we would happily chat with her outside. She was waiting for us when we came out and amazingly Ali was calm and happy to watch this girl signing to her, although she didn’t sign back.  She made Ali feel at home.

We “anxietied” our way though a bit more of the fair until we found, what I used to call the “old lady cloggers”, but now some of them are my age, so they don’t seem so old. Ali was transfixed by their dancing and music and kept asking and signing for “more”. Too bad our friend couldn’t see her then. They may have been able to chat a little.  It was very sweet of her, in our worst moment, to offer kindness.  I wish she could have seen Ali at her best too.

Here’s hoping when you feel like your life is a $#!+ show that you make someone else feel totally at home.

Home isn’t a place; it’s a feeling; it’s the people who make you feel that you belong.~ J.C. Reed

A united “us”.

•August 13, 2017 • Leave a Comment

Several years ago our family took a trip to Washington DC. On that trip we visited the Holocaust Museum. I knew the history, of course, but the imagery and the stories make it extremely difficult to get though without feeling anger, sadness, and disbelief. What I kept saying to Quinten and Michael over and over was “How could neighbors, who were friends, just turn on neighbors because some dictator said they should. How can people let their own common sense be corrupted by someone they don’t even know. It just seems unbelievable.” Surely, it could never happen again.

We see ugliness occasionally. In fact, this weekend we went to the state fair as a family and it’s an interesting cross section of American life. When we take Ali we get stares. Not inquisitive stares, or the fascinating stares I talked about last week, but stares full of disgust. I know they’re coming in this venue, but after 12 years they still take me by surprise…..every time. Even though the number of kind, caring, understanding people is much greater, those stares cut pretty deep.

I know that mean, bigoted people exist, but I feel when Donald Trump was elected President after all of his bigoted comments about ….pretty much everyone not like him, it opened the door for those people to say what they felt. If POTUS can say it, then so can I.

….and then Charlottesville. Where people with literal torches didn’t protest their “true” cause peacefully, but instead slung Nazi slurs, made Nazi hand signs, and carried Nazi flags. Not with KKK hoods to cowardly cover their identities, but full on, bold, out in public.   I know these people have always been there, but their newfound boldness is terrifying.

So, tonight I will take our son downtown for a, hopefully, peaceful sit-in vigil to show solidarity with Charlottesville. We talked about it at length, He wants to go. But after what happened with the counter protesters in Charlottesville, I am worried. I am worried I won’t be able to keep him safe should things go awry. Should I just keep him home where I feel I can keep him safe? Then I think about our friends of color. Those who feel this way every time their child leaves the house and I know we must go. We must say what our President hasn’t said adequately. We will stand with you, even if we’re scared, because what happened in Charlottesville must never happen again.  We continue to have our eyes opened to the fear you have felt by those nasty stares and quiet comments made over the years. We refuse to stand by silently and watch. We will stand beside you and say “ENOUGH!”

As we maneuvered the first exhibit of the Holocaust Museum with Ali in her chair, it was painful to read the stories of the Nazi’s testing their “euthanasia” methods on those who were deemed “useless eaters”. People who had worked with those individuals stated they “felt bad”, but followed the leader out of fear. I have to believe that people would stand with our family…..and so I will stand with yours. I will stand for a united “us”.

In the long run, the sharpest weapon of all is a kind and gentle spirit. ~ Anne Frank

Fascinating.

•August 5, 2017 • Leave a Comment

We recently had an appointment with a doctor who has followed Ali for close to 11 years, almost her whole life. When we have no immediate medical concerns we see him once a year and she’s been really healthy so that’s kind of become the norm.

He’s the kind of doctor that if you have an afternoon appointment, like we did, you know you will have to wait. But you don’t mind because you know he is taking the time he needs to take with every patient, and you know when it’s your turn you will have his undivided attention.

This particular visit was in the afternoon, after a long day of ABA therapy. Ali was a bit squirrely, but wanted to sit in her chair because she feels in control there and I was happy to let her to keep her from bouncing off of the walls. While we waited to be called back to a room Ali would yell “My turn!” every time the door opened. So even though we sat there past our “if you been here 15 minutes talk to the front desk staff” time, I figured they were pretty aware we were still there. When they finally called us back Ali said goodbye to everyone. Even the people waiting in the other waiting areas acknowledged her with a smile and a wave. She brings a lot a joy.

First, entered the residents, who were super nice and both had the same name, which Ali found utterly hilarious. I imaged it was like me at the eye doctor when she said she had three Jennifer’s that day. “Probably because we’re all 40 something and need bifocals” These were young ladies. They were patient. They asked her questions, she made up answers, we corrected the ones that were incorrect.  Ali asked to go to the car, 100 times. They decided they weren’t getting any more accurate information from her. They called in the doctor.

When the doctor arrived he asked the normal questions of us, asked if we had questions and then wanted to see her walk. So we got her out of her chair and she happily walked down the hall with him, heading right out the door to the car. We redirected her back to the room where she exerted all of her pent up energy, by touching every item in the room at least once.  Our doctor sat in his chair and watched her. Michael, who doesn’t always attend these appointments with us because we’re mostly in a holding pattern, was trying to make small talk, but I touched his leg to let him know, it wasn’t necessary. Even though the silence is a little awkward, we just let this doctor stare at our daughter and take her in.

We hear all the time, Ali is…..Ali. There is no one like her. She’s not a typical anything. She’s not a typical child with autism. Her ABA center laughs that what works for most kids in the building, doesn’t work for Ali. She figures out their plan and foils it every time. She’s not a typical child with mito. This doctor reminds us of that. She’s healthy, she’s thriving, she has energy galore. She’s just Ali….and he stares at her. Not in a creepy way. Not in the judgmental way we often see. In a way that made me feel like he was fascinated by her. “Does she always talk to you to talk to someone else?” “Yes, often.” He stares some more. She is fascinating.

Finally he had taken in as much of her as he could before she stared laying on the exam table asking to have her diaper changed, which I found fascinating. She wears underwear. We haven’t used a changing table in many years. Those years I wasn’t certain if she understood a whole lot of what was going on around her, she was very locked in her own body. Yet, here, with an exam table that looks like an adult changing table, she made a connection. Fascinating.

He asked a few more questions, as did we, and then he gave us hope by saying that in the world of genetics, great strides are being made. New gene mutations are being identified every day. We can try again next year to run her blood panel that we had run a year ago and hopefully will receive her true, she fits in this category, diagnosis. That is an exciting prospect because we will then know better how to treat her, find more people “like us” to see what has and hasn’t worked for them, hopefully just give her a better quality of life overall. And he also told us he doesn’t think she’ll get much taller than 5 feet, which is a huge relief for me as she’s becoming much harder to keep safe in public when she has a breakdown.

As long as people continued to be fascinated by our girl, we have hope that we’ll get more answers.

The world is an infinitely fascinating, tragic and humorous place. ~Mike Figgis

Vacation-again.

•April 10, 2017 • Leave a Comment

I have written about our vacations before, but as Ali grows and changes so do our getaways. They are part of who we are and what we can do as a family. So, if you are going to understand autism, I suppose you need to need to understand an autism family vacation.

We live in Indiana, so requirement number one was a warm climate. We choose Florida because Q and I went to a wonderfully quiet little spot in Cocoa Beach last year that we thought Ali would like. We try to avoid hi-rises because Ali has no fear of heights and doesn’t understand that leaning or sitting on a balcony railing may cause her to fall. This place was all one story and only had 12 units, my mom wanted to go with us, and the owner lives on site, so I figured we could only irritate 9 families, tops. I worry about infringing on someone else’s relaxing vacation with our excitement. The other people there seemed more than happy to chat with Ali when she tried to chat with them. I should worry less.

The best vacation spot for Ali would be a kid friendly spot….that had no kids. This is a hard vacation destination to find, but we really thought this place would be good for Ali. They had a full kitchen area so we could prepare most meals in and a wonderful outdoor seating area so we could eat outside and not worry about making a mess. This spot was right on the beach and also had a pool so I could hear the waves, my favorite thing, and Ali could enjoy water that did not have a life of its own. Water that comes to get your feet is terrifying.

We chose to drive because flying was more expensive than we wanted. We could find cheap fares, but they all required a layover somewhere or changing planes and that is not really enjoyable with Ali. We were able to break up our trip halfway with a stop to visit dear friends in Atlanta so that seemed like a doable drive. On the way home my mom was at the airport the entire day waiting for her 10:30 am flight to depart. They eventually were told to come back the next day. Asking Ali to hang at the airport all day and then come back tomorrow for her flight would be grounds for a full on melt down. No thanks.

Thank heavens for modern technology that allows us to find a Taco Bell near any location. That is our favorite stop because it’s rarely crowded and they almost always have single serve restrooms, meaning no one else is washing or drying their hands or flushing to distract us. Plus, there is not better motivation to actually pee and not hold it than a cheesy roll up. Yes, they are full of gluten, we do an extra dose of Miralax. It’s that or not pee. I choose pee.

We stopped in Atlanta in time to see our friend’s daughter play softball. While there we kept Ali busy with 2 hot dogs, a bag of Cheetos and dancing to an opposing teams warm-up music. We’re pretty used to us, but I always worry that we will be embarrassing to our friends’ kids. We have good friends. I shouldn’t worry.

The beach was wonderful and Ali loved the pool, as expected. It was warm and she wanted to swim every day, multiple times a day. We let her. The beach was not her favorite and when we encouraged her to walk with us she would eventually turn around and walk back by herself to the “hotel”. I was amazed that on day 1 she knew exactly which place was ours. It was pretty non-descript from the beach. Her brain does amazing things.

Ali was obsessed with “Denise” when we got to the hotel. It took us awhile to figure out that “Denise” was actually “Disney”. It’s odd because we weren’t planning on going to Disney this trip so we hadn’t talked about it at all and there really aren’t any bill boards advertising it on the way down. Yet, somehow her amazing brain knew we were close. There WERE 1000 billboards for Ron Jon Surf Shop and she was NOT excited to go there. Go figure.

We decided on the last day to make a trip to Disney Springs, formally known as Downtown Disney. There is no fee to get in and it’s just shopping and restaurants, but it has the Disney vibe and several over the top Disney stores, which Ali really likes. Ali has been having a bit more anxiety on her new meds, but she’d been asking for “Denise” and this seemed like the tamest alternative. When we arrived we walked through 2 stores that Ali thought were pretty great, then we hit the restaurant section with its outdoor entertainment. The bands were loud and Ali screamed bloody murder. I tried all of my calming techniques to no avail. I was not really interested in running through the music section as fast as possible with a screaming child, putting her through the torture and getting tackled by Disney security for possible child abduction, so we turned around.

Not one to give up after an hour long drive, and not one to like to disappoint my super easy going Q, who really wanted to go to the Stance sock shop, we walked around the outside of Disney Springs, you know, the quiet part were there is nothing to see and they keep the garbage. We slowly walked into the opposite end of the shopping area where Ali continued to scream and hold my hands at the mere thought of Disney restaurant entertainment. I told the boys to go ahead and Ali and I managed to chat and breathe and relax enough to check out a few more shops. Once we were in and the threat of loud music was at bay she actually picked out a couple of places she wanted to see. She found some new books in a Disney store at the back of the mall that had no customers and was nice and quiet. And she chose to stay to watch some high school dance teams perform. Once we could take the time beyond the loud music and glaring eyes she can pull herself together and have a good time.

On the way home we made a quick stop near the University of Florida so we could drive through campus to let Q take a look. We made one last stop at a Taco Bell to eat and take a quick bathroom break. As soon as we walked into the bathroom I knew we were doomed. There was speaker in there piping music in so loud that even I was distracted. Ali tried, but just couldn’t do the deed. We washed our hands and ate lunch, Michael and I trying to decide if we wanted to try to stop somewhere on campus or try a gas station before hitting the road. I decided I would ask the manager if he would be willing to turn the music down so we could try here and then just hit the road. He agreed. As we entered the bathroom again Ali carefully eyed the speaker in the ceiling. What if it was just between songs and would start again any second? When she felt comfortable that it was off she was successful. We thanked the manager on our way out. I’m sure he thought we were crazy. I don’t even care, it saved us another gas station bathroom stop.

It was a quiet, uneventful, pool-filled vacation and I thought it was worth the drive and every penny.

So I asked my friends after chronicling our journey, “So who wants to go on a family vacation with us?!” They both agreed they thought it sounded like fun. We have good friends.

Autism Awareness.

•April 2, 2017 • Leave a Comment

It’s Autism Awareness Day. It’s a funny thing to me because it has been a long time since I’ve met someone who was not aware of autism. In fact, it seems like when I mention to someone that Ali has autism I hear about that person’s friend who also has a kiddo with autism. People are aware.

Our biggest struggle is not awareness; it’s understanding and acceptance.

We just returned from vacation, a trip planned around Ali’s strengths and also what would be fun for all of us. We broke the trip up with a stop in Atlanta to stay with friends on our way down and back. When I originally planned the stop my friend asked what she could have for Ali when we got there.  “And don’t tell me nothing!!!!”  I responded with “Kindness and understanding” as a joke.  I don’t like to ask for “special accommodations” for Ali, but the truth is, I would happily do it for someone else.  She wanted to make sure Ali was comfortable and happy.  That’s autism awareness.

When I texted our arrival time we were told they were at the ballpark with their daughter “G”. My friend said we could come right there to watch her play or could go to their house first to get settled and then come over. She mentioned that the ballpark had nice restrooms that were each large individual stalls. She knows that Ali has issues going to the bathroom when the bathroom is noisy and others are flushing, running water to wash hands, and using the air hand dryers. That’s autism understanding.

We chose to go to her house as Ali had a bloody nose in the car on the way there and I knew we already make a scene everywhere we go, best not to do it while blood splattered. I asked if we would be too embarrassing to “G” teasing that we will enter the ballpark like…

blog1

And leave like…

blog2

They still wanted us.

We had a good time at the ballpark, watched “G” play a great game and then went back to their house for dinner in, because that’s autism understanding.

On our way back through after an exciting beach trip, they fed us another great meal. Ali spent most of the time in their quiet bathroom, but at one point walked through the dining room doing a little dance with a mouth full of naan. Their other daughter “H”, being the caring girl she is, said “Careful Ali and chew your food.” Ali, of course, took her fully chewed naan and threw it at “H”. Michael took Ali upstairs for a break and our friend says, “That’s how your sister feels when you tell her what to do. She would probably throw her food at you too.” “G” agreed. Yep. When you have no real social awareness you just kind of do what feels good in the moment. They got a good laugh. That’s autism acceptance.

I hear a lot; well you can’t let her do (fill in the blank with a “weird” behavior) forever. It’s a process. I hope to someday be able to pee in any bathroom without having to worry about the noise level. Throwing food limits where we can take Ali and whom we can eat with. We’re working on it, really hard. In general, however, I think, why not? Why can’t she ask everyone to play Candyland? And why can’t you spare 5 minutes to play with her? Why can’t she wear elastic waist pants forever? They just feel better and she can maneuver them. Why can’t she watch Calliou until she’s bored of him? He’s annoying, I know, but I can ignore him. I promise it is easier to be accepting of another’s differences than it is to push them into the box you want them in. In fact, I will argue that it will be more fun for both of you.

Being with people who can laugh (after Ali has left the room—that’s key) and not judge is huge. In the end what we all want is kindness and understanding.  That’s what autism awareness is all about.