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.

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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!

Release.

•November 4, 2018 • Leave a Comment

I guess when I think about it we all have multiple “lives”.  A home life, a work life, a school life, a social life, a private life, whatever it may be.  I know Quinten has school friends that I have not yet met and probably never will.  They are buddies he eats lunch with or chats with in class, but maybe they don’t have enough in common to hang out after school.  Also, as a teenage boy, who communicates primarily through grunts and sarcasm , I am aware that there are parts of his day that I don’t have full access to.  I try to know the important things and his close friends, and continue to ask “100 questions” (or so I’m told) and cherish the information I do receive.  Every once in a great while he talks, releases, and I stop everything, try to take in every word and it is wonderful.

I used to feel pretty confident that I knew what was going on with Ali.  I am highly immersed in her life due to her lack of communication.  She can’t tell me how her day was beyond “good mama”  or “bad Cheech”, and half of the time her assessment is incongruent with the therapist’s report. Therefore, I mostly rely on what they tell me at the end of the day.  They give me a rundown of what activities she did that day and how she tolerated them, was she successful in meeting her goals, what her mood was, who she interacted with, how many times she went to the bathroom.  I know it all.  Or at least I thought I did.

A couple of weeks ago while driving to school on my least favorite stretch of interstate, the song on the radio ended and new one began.  Just the intro music, the DJ was giving a quick weather report before the singing began.  I recognized it as Van Halen’s “Jump”.  I am not a big ’80’s hair band fan, so it’s not something we listen to …… pretty much ever.  I would normally channel surf, but I was focused on driving and decided to just let it go.  That’s when Ali started yelling “Jump!  Jump!  Jump!!!” from the back seat.  What the crap?  How does she even know this song?  And to recognize it from the first several notes, she must have heard it several times before.

That’s when I realized, Ali does have a life beyond what I know, another life that I don’t have access to.

Later that same week a friend sent me a video (watch it here) of another girl with autism that presents in a similar fashion to Ali.  This girl, at age 11,  had been encouraged to type.  When she figured out how to do it and can be encouraged to sit and type, what is in her head is nothing short of amazing.  Because she was unable to speak, her parents didn’t know the immense amount of information their daughter was taking in each and every day.

After watching the video, I couldn’t help thinking that “Jump” is just the tip of the iceberg for Ali.  What else is in there that I don’t know?  Ali is also learning to type at her ABA therapy center, but is only doing what they ask her to do right now.  It would be incredible if she eventually began to type what is on her mind.  Of course, maybe typing is not in the cards for her and we will keep working verbally, or with sign, or with a communication device.  There are so many options available to her.  I’ll just keep trying, asking 100 questions, cherishing any information I receive about her “other” lives, waiting for that release.

There are really three parts to the creative process. First there is inspiration, then there is the execution, and finally there is the release. ~Eddie Van Halen

Fearless

•October 27, 2018 • Leave a Comment

I enjoy decorating for the holidays.  All of them.  This year time got a bit away from me and I quickly put up a few Halloween decorations on Wednesday.  Because we only have a week to enjoy them before Thanksgiving items go up, and because I really like putting decorations up, but not taking them down, I pared down my selection to a few favorites.

In our downstairs bathroom I always hang a glow-in-the-dark skeleton by the mirror.  This is really just for Ali’s enjoyment.  The rest of our family doesn’t sit on the pot in complete darkness like Ali enjoys doing.  I think it helps her concentrate on the task at hand.  So she’s really the only one who gets to see him in his full glow-y splendor.

One of my favorite decorations is a large spider that hangs from a piece of fishing line.  In years past, I used to enjoy hanging him from the door frame between the kitchen and the family room, a much used path in our home.  He’s been knocked around a bit because of it and this year I had trouble getting him to hang where I wanted him to.  So, in a rush, I tossed him on the back of the toilet in that same bathroom.

The next day, even though I had put up the decorations, I almost scared the crap out of myself (bathroom humor) when I went into that bathroom.  It’s totally unreasonable.  We occasionally have spiders in the house, but this one is ridiculously huge.  Too unbelievable to give me a start, yet it did.  What if it WAS real?  I did my normal awkward Kung Fu moves and jumped back with my heart racing.  Then I texted a couple of friends so we could all get a good laugh from my silly behavior.

After school, Ali was visiting he same bathroom, sitting with the door closed in pitch darkness.  Through the door I could hear her making ghost noises to the skeleton.  “OoooooOOOOooooo”  She seemed totally unfazed by the giant spider altogether.  When I relayed this to my friends, one responded that Ali was brave, obviously braver than me.  I replied: She just doesn’t know she’s supposed to be scared.

The more I thought about that response the more it gripped me.   That’s what makes her so very special.  It doesn’t matter what diagnosis she receives.  What the prognosis is.  If they say she won’t walk, or talk, or eat or drink or live on her own.  She’s not scared.  It hasn’t occurred to her be.  I’m the one with the “What if?”.  I carry the fear for both of us.

Honestly, I’ve gotten much better about this.  I know so much more than I did 13 years ago when we first got her diagnosis and were trying to figure things out.  I am better about knowing our girl, that she is strong, works hard, and is brave AND fearless.  I know that if they tell us she probably she won’t be able to do something, that she isn’t afraid to work at it, and will probably prove them wrong.

Clearly, I still have a big “What if?” about giant spiders.  But Ali?  She doesn’t know she’s “supposed” to be afraid of anything.  She’s fearless.  #BeMoreLikeAli

Business Decisions

•July 7, 2018 • Leave a Comment

In my previous life, I worked at a mutual fund company.  Being a highly regulated industry and my company, in particular, having a conservative company culture, there were many rules and regulations to follow.  My company had business practices in place to ensure consistency of service and the financial well-being of all of our customers.  But, working in the customer service area, we were also encouraged to help our teams make “business decisions”.  Making the right decision for the customer, while following necessary regulations, but having the ability to forgo certain policies and using common sense when a situation warranted.  We consistently won awards for superior customer service in the industry.  I think that’s why, when I run into even mediocre customer service, I get frustrated.

When our spring break, “Grand” adventure flight was canceled, we began to scramble to to rearrange or other reservations that were dependent upon our arrival at a certain time.  We had rented a minivan through Alamo (yes, I’m calling you out by name to my 10’s of followers) and they were expecting us to arrive that night.  When I called to explain that we would be arriving one day later than expected, but still wanted the vehicle; I was informed we could cancel our reservation and make a new one for the new dates, but that a minivan would not be available.

We needed a minivan.  I had packed 2 large suitcases, 2 small suitcases, and we all had a carry on bag because we had to have appropriate attire and gear for camping in 20 degree weather and sightseeing in 80 degree weather.  Ali’s new chair is still pretty bulky and long when folded.  We have discovered that it doesn’t fit in some trunks.  Plus we were expecting a lot of driving between destinations and Ali needs her space or there is poking and hair pulling.

I told the man I would happily pay for the day we were missing in order to keep our reservation and the minivan.  He informed me, “You’ll be considered a no show for tonight and will be assessed a $100 fee and even then they can rent the vehicle.  So there’s no guarantee it will be available when you arrive.”  He admitted it was a ridiculous policy, but it was policy nonetheless.  We went around and around with: “How is it a no-show if I tell you when I will be there?”, a request to speak to a manager and still no business decisions could be made.  So I canceled my entire reservation and rented a minivan through Fox Rental Car, the only company who, at that last minute, still had a minivan for a reasonable price.  Alamo has lost our business forever due to my extreme grudge holding for crappy customer service.

After we arrived home I realized that I had left our handicapped placard in the dang rental minivan.  I called Fox and even though the lost and found fellow swore he had seen an Indiana handicapped placard at one point, he could no longer locate it.

I tried driving without it for awhile, not really being enthusiastic about going to the BMV.  But, if you’d like to win some big buck on America’s Funniest Videos, you should tape me getting the chair into and out of our van and Ali into and out of the chair.  It’s got to be hilarious to watch as I break a sweat and mumble curse words about the chair and my life in general.  It’s heavy and cumbersome and doesn’t just pop open like her last chair.  It requires a little brute force to fully open and close.  The price you pay for a luxury vehicle.  In many parking garages, including at our local children’s hospital where Ali has regular follow-up appointments, the normal spots are super close together (her chair won’t fit between the cars) and are on an incline.  The handicapped spots have a bit more room and are on level surfaces.  I could either set the brakes and park the chair behind the van and hope Ali doesn’t  1)end up on the ground after misjudging the location of the chair when she sits (a likely scenario) or 2) make a run for it OR I can keep the brakes off and 1)try to meet her bottom when she sits and 2)try to stop the chair from making run for it down the ramp.  So when Michael said he needed to go the BMV to renew his license I asked him to get a new placard.

The BMV has a copy of her doctor’s note for the placard in their system, but they told Michael that he also needed to fill out a form that would require Ali’s signature.

Michael: “She doesn’t write.”

BMV: “She can sign with an X.”

Michael: “She can’t make an X. She doesn’t write.”

BMV: “Do you have a power of attorney?”

Michael: “She’s 13.  I am her parent.  No, I don’t have a power of attorney.”

BMV: “Sorry, she still needs to sign.”

He brought the paperwork home.  My grudge-holding-crappy-customer-service self kicked in and I was determined to wheel her little bottom in there to have her “sign” the paperwork in front of them to emphasize how crazy their rule was for certain situations.  Unfortunately, they’re only open late on Tuesdays and that is our respite night, and even my grudge-holding-crappy-customer-service self couldn’t justify spending date night at the BMV.  I had Ali “sign” the paperwork and returned to the BMV another day with this:

signature

I saw a team supervisor on this visit who found Ali’s signature amusing.  She said because Ali was a minor she could, in fact, accept my signature as her guardian and apologized for the inconvenience.  I may release my grudge, but they really should encourage their employees to make business decisions too.

The point is: Our life is not normal.  Whose is?  We try to follow societial rules as best we can, but the reality is our life is just a series of best guesses and business decisions.  We, along with Ali’s doctors and therapists, know she doesn’t follow a set path academically, physically or socially.  There’s no medical book or parenting guide that can tell us what to expect.  So we decide what will be in her best interest based on what we know.  Are there things we could have done differently looking back?  Of course, but I’m also really proud of some of the decisions we have made that have proven successful for her. The “customer” is happy.  We’ve done our job.

“In life, you need many more things besides talent.  Things like good advice and common sense.” ~Hack Wilson

The New Guy

•July 3, 2018 • Leave a Comment

A couple of months ago we saw a new to us physiatrist.  Our regular physiatrist left her practice and we were encouraged to see “the new guy”.  I really dislike seeing “the new guy”.  I mean, I had nothing against this “new guy” in particular, it’s just “the new guy”, in general.  We loved our regular doctor.  She has seen Ali since Ali was barely walking.  She has helped us maneuver toddler-hood, growth spurts, the gangly pre-teens, and I was comfortable working with her into puberty.  But it wasn’t meant to be.  “The new guy” couldn’t see us for months after our original appointment so I was already going into the appointment prepared to give him a low grade.

“The new guy” came into our room with 2 scribes, a resident, and a doctor from China who was learning more about physical medicine.  He made introductions and chatted with Ali, but she wasn’t having it and was giving everyone in the room her side eye.  There were a lot of people in a small space and Ali asked if we could go to the car.  I knew it “new guy” you get a D.

I gave “the new guy” a brief history of Ali and it appeared, by the questions he asked, that he had also read her chart beforehand.  Extra credit for that “new guy”.  He was very knowledgeable about autism and mitochondrial disfunction, which is pretty rare.  He explained both quickly, but in a thorough fashion to his resident and visiting physician.  I was impressed.  I gave him a solid C.

Then it was time for the physical exam.  He let Ali sit in her chair as long as possible.  He asked if he could take her shoes off and look at her feet.  Then he waited, for what seemed like an eternity of silence full of skeptical Ali side eye, until she consented.  It struck me, I know we’ve had lots of great doctors ask her permission to touch her, but I’m not certain we’ve ever had one actually sit and wait while she processed the question and gave consent.  They normally just wait a minute and jump right in.  I’m giving him a B+ for sure.

While he was working on her shoes the doctor from China came over and kindly tried to remove Ali’s magazines from her lap in anticipation of her gait evaluation.  As if in slo-motion, I saw Ali’s hand start to reach for her glasses in protest.  But before I could even move “the new guy” said “I wouldn’t do that.  Those look like her comfort items.  We’ll let mom decide what to do with those when it’s time to see her walk.”  A-, new guy.

Then the moment came to release the kraken from her chair.  This must not have been “the new guy”‘s first rodeo because he turned to the scribes and said “Get ready.  This is going to be fast.”  She got out of her chair and made a quick run for the exit.  This is not my first rodeo either and I was already there prompting her to walk across the room to look out the window.  “The new guy” watched her walk and hurled medical-ese at the scribes at lightening speed.  By the time Ali tired of the window it was time to sit back in her chair and go the car.  “The new guy” earned an A+.  No easy task.

We chatted about her needs while getting her shoes back on and he asked if she was stable on her feet.  She really is.  I explained that she just appears clumsy because she has poor spacial awareness.  She just doesn’t always know where her body is in space so she runs into things, often immovable objects.  When you watch her walk she often holds her arms out away from her body and they will flap into things.  When she’s in her chair and we walk through a doorway I often have to remind her “arms in” or “legs in” because they are just floating away from her body.  Take a look at her watching videos on her iPad.  Her arm is just kind of floating in space.  If I remind her of it, she’ll pull it back into her body, but eventually it will float away again.  No big deal, just another funny treat of autism.

“The new guy” said he was impressed with my knowledge of our girl and said we were doing a great job with her.  So even though he sent us home with a script for new SMO’s (short little braces to help Ali with her pronated ankles) which made me sad because I thought we were done with them, he still walks away with an A+.  At least she got beautiful butterflies and new pink shoes out of the deal.  I’m glad we took the chance.

smo

 

The only safe thing is to take a chance. ~Mike Nichols

A “Grand” Adventure Part 2: Acceptance

•June 23, 2018 • Leave a Comment

Now that we had Ali’s first plane ride in a long time under our belts, we were ready for more exciting adventures.

We few into Phoenix and because of our delay only had about 1 day to spend there so decided to visit the Desert Botanical Garden.  It was absolutely beautiful and wonderful way to take in a lot of different flora in a short period of time.  They also had wonderful wide paths that accommodated Ali’s chair and were not super busy so Ali could walk a good majority of the time.  She only went rogue once and ran face first into a prickly tree which kept her on the path the rest of the time.

On our way to the Grand Canyon we stopped at Bed Rock City to satisfy my curiosity.  It was truly like stepping back in time to the 1950’s.  I don’t think they had changed much since then and they gave us a list of safety instructions before entering.  Like: Make sure you catch your child at the end of the dino slide because there’s a giant hole there and the slide is fast as lightening.  Excellent tip, by the way.  The temperature had dropped considerably at this higher altitude so we didn’t stay long, but we had a good time.  This is my favorite picture of the whole trip because it sums up my children’s attitudes about the cold and crazy nature of the park.

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I would recommend it as a great stop to stretch your legs.  We drove through Sedona which was winding, touristy, and gorgeous.  Then onward to the GC.

When I researched places to stay I was surprised to find there is really only one hotel outside of the Grand Canyon.  Most of the lodging is in the park itself and even though I made reservations about 6 months out, it was booked.  We later discovered that this is the parks busiest time of year, even though the evening temperatures are quite cold.

While looking at houses to rent near the park I stumbled upon Arizona Luxury Expeditions (ALE).  They run a “glamping” business.  They provide all of your camping gear, meals and a guide, for your stay in a fancy tent.  It was pricey, and I am cheap, but as I read the reviews I happened upon one from a family that sounded very much like our own.  They were traveling with a teenage son and daughter, the daughter had “severe autism and anxiety”.  The mom gushed on and on about what a wonderful vacation they had.  I made my reservation.

Before arriving, they send you a short questionnaire asking for details about your family, what you hope to see in the canyon, what dietary restrictions you may have, etc.  I explained our family in a couple of short paragraphs and said we just wanted to see the canyon and spend some quality time together as a family.  I listed Ali’s gluten free diet in the “dietary restrictions” area, but clarified she did not have an allergy and that we could make their meals work for us by simply excluding items if necessary.

When we arrived we met up with a young guide from ALE that took us on a quick south rim tour.  He was hip, closer to Q’s age than to mine and he and Q hit it off immediately.  He was knowledgeable about the canyon’s vast history and make up.  He pointed out beautiful formations and had stories for everything.  He knew exactly how long to stay to see the canyon in the best light.  He even drove us to the perfect bathroom spot that had individual bathrooms so Ali could go, undistracted, before we got to the campsite.  If this is all we ever experienced of ALE and the canyon it would have been enough.

When we pulled into camp another family from California was waiting for us for dinner, filet mignon, mashed potatoes and squash, all cooked in a make-shift camp kitchen.  It was extraordinary.  Ali was beyond exhausted, with our full day and the time change, and was not interested in sitting in the dining tent with another family.  Michael and I decided to eat in shifts and let Ali chill in our sleeping tent.  Lorraine, one of the camps staff members, was very accommodating and even brought Ali a bowl of cheese, lunch meat and gluten free crackers (All of her favorites.  I still don’t know how she knew.  Experience, I guess.) to eat in our tent.

For each and every meal we ate, there was gluten free option.  Most times it was exactly the same as what everyone else received, so you didn’t even notice.  When an exact match couldn’t be made, Lorraine made certain the substitute was something even more enticing, not an easy task if you saw the meals they prepared.  Instead of feeling different, Ali, and our family, was made to feel special.  Our second day, for lunch, it was just our family as the others were out exploring.  She made a pesto chicken pasta.  Ali chose to wait until we were out of the dining tent to go in and eat by herself.  She cleaned her plate.  Every.last.bite.  When I thanked Lorraine at the end of our stay for going above and beyond she said “We just wanted her to enjoy herself.”

On day 2 our guide was Mark, who Ali called “Mike” the entire time.  We told him we’d like Ali to be able to hike a bit in the morning when it was cooler and we could put her in her chair in the afternoon to further explore the rim.  There is nothing between you and adn bottom of the canyon but 7000 feet of air.  We couldn’t risk Ali going rogue here.  He took us to a sparsely marked path in the Kaibab National Forest and led us on a lovely hike that we all really enjoyed.  He answered every question we had and was a wealth of knowledge.  After lunch we ventured back to the south rim and found a couple of less travelled paved paths and Q, Michael and Mark went on a short hike down into the canyon for some great views, while Ali and I chatted with sweaty hikers making their way back up.

Mark was about my age and has lived an adventurous life.  He has travelled extensively while working as a chef and has hiked, what felt to me, like almost every path in the canyon.  This is my second favorite picture from our trip:

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Q does pretty well in school, but has to work really hard.  He’s so smart, but learning at desk for 7 hours a day is a challenge for him.  This picture is Q and Mark leading the way on our forest hike, chatting about adventures.  If Q takes anything away from our entire trip, I hope it’s that you can have a career doing something you are passionate about and it doesn’t have to involve a desk.  The staff with ALE sleeps in tents next to yours, they are up before you, work all day and go to sleep after you do.  They work hard.  Yet they seemed so happy and pleased to have you share their favorite spot with them.

When we arrived back at camp for dinner there was family there from Philly.  A stark contrast to the family from California that was there the night before.  The California mom was bit of a germaphobe.  I am pretty certain my wiping off a piece of cheese that hit the dirt with my hands and giving it back to Ali almost pushed her over the edge.  The Philly family was loud, they made fart jokes about the beans we had for dinner, they were totally unfazed by anything we did.  These are my people.  Further reason we need to move out east.

Ali’s behavior the entire time we were there was wonderful.  She’s weird, of course, but her anxiety was non-existent, and she was happy and silly.  She was the way we get to see her when we are at home or when she is at school.  It was wonderful.

As we said our thank you’s the last morning, I again thanked Loraine and Mark for the kindness, acceptance, and hospitality they had shown all of us, but especially Ali, Lorraine said “Everyone marches to the beat of their own drummer.”  I felt totally accepted.

We headed out for more adventures in Zion National Park and Las Vegas before heading home.  I became super emotional as we drove through the Navajo Nation with its perfect landscape, untouched by hungry hands.  It was probably the lack of sleep in a cold tent.  Or maybe it was my realization that if more people, including myself, would make the effort to let Ali be herself and make a little effort to allow her to “be” and not fit into some made up societal norms of “this is how it should be because that’s how it has always been”, that we could see this calm, happy girl all the time.  We had just spent two and half glorious days with a group of free, loving folks that passed no judgement, made every effort to make sure we all enjoyed ourselves and were not afraid to go a little off the beaten path to share their beautiful parks in a way we could enjoy them best.

Even though the nights were below 30 degrees in our tent, even with the gloriousness of Zion, even with the bright lights and excitement of Vegas, when I asked the family what their favorite part was of the trip.  It was glamping.  It was worth every penny to be together, unplugged and accepted.

“Humans aren’t as good as we should be in our capacity to empathize with feeling and thoughts of others, be they humans or other animals on Earth.  So maybe part of our formal education should be training in empathy.  Imagine how different the world would be if, in fact, that were ‘reading, writing, arithmetic, empathy.’ ” ~ Neil deGrasse Tyson

 

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. 🙂