Monday, June 20, 2016

Lessons from Mackie and Finding Dory for this Special Needs Mom

Day 8




Yesterday I planned a topic to write about for my 90 challenge, but last night changed that.  This morning reading a post from my favorite threads "The Mighty" had me thinking and writing. "What Finding Dory Taught Me as Someone with Autism" about my last nights's adventure to the movies with Mackie.

A couple of months ago, Mackie had found the trailer for Finding Dory and we began the long awaited arrival for the film. He has watched every thing he could find on Finding Dory, in english, Spanish, French, and whatever languages he found while cruising the internet and bringing to my attention all things Finding Dory.


 Mackie has Autism, Fetal Alcohol Syndrome and is medically complex and adopted from the foster care system. Mackie can recite his favorite scripts in multiple languages and sings the theme songs from his favorites in many languages.  But some days loses the ability to speak and often times cannot control body due to involuntary muscle movements due to his neurological challenges.

Mackie has been asking for over a month  "Is it is Friday June 17th yet?" Many times a day.  No Mackie, not yet.  Somedays more times than others.  We even were counting down the days to the long awaited release at the "Movie Feater" on the calendar.  He loves going to the movies.  We have had to buy the books, Ty stuffed beanie babies Dory, Nemo, and Destiny. We have stocked up on all the pool toys for Finding Dory and he has been practicing swimming with Dory and playing with his friends. Color books and stickers to practice his Occupational Therapy Goals. Anything to buy some time and help with the obsession and to help him have fun all the while doing therapy to strength his body and skills.



We  all now know parts of the story and his questions and remarks have been keeping us busy while we wait. Mommy "Dory lost her family."  I lost my Mommy and I found a family with you and Daddy! Dory forgets, Dee forgets, I forget and talk too much.  "Yes Mac we all have things we are good at and things we struggle with."  My now memorized response.   I love to hear that soft little voice reciting "Swimming, swimming, keep swimming!" chasing his Finding Dory water toy swimming in the bathtub or the big ocean swimming pool. Nemo has a bent fin and his lucky fin swims a little differently. Mackie struggles to walk and walks differently, but it doesn't stop either of them.

June 17, The long awaited opening of Finding Dory arrives!



When he was tiny and not talking, going to the movie's was easy.  He quietly sat there.  But no longer.  He is full of curiosity and questions.  We worked long and hard he has cost thousands of dollars in early intervention to get him to talk and develop skills and today I want him to be quiet!  With his autism, he "scripts" the movies and memorizes as he goes.  Now he has progressed to asking questions and with his impulse control affected, it is not always at the appropriate times. We will be hearing the movie script words and questions for weeks to come, especially at his 3:30 am wake times.

He had been asking and asking as soon as Friday June 17 finally arrives.  No I didn't tell him. He seems to have a thing for having a sixth sense when it comes to calendars, days and times and he knew it was today.  I would have rather waited a few days to the crowds thinned down before telling him.

We promised him that we would go and it was NOT going to be delayed.  Distracting him with Meet the Robinsons on Disney Junior a half dozen times so he would quit obsessing over wanting to go. We had procrastinated as long as we could.  So Sunday night it was.  Our small town movie theater was a much better choice than heading to one of the theaters in one of larger towns surrounding us.  He had been in that theater a dozen times already, less sensory stimulation as he knows the environment.  This is one challenge I would be able to take out of the equation.

We asked the girls to join us, at 23 and 26 with their own disabilities. Going to the movies is one of our favorite outings. But they politely declined. They have learned that Mackie can be a little distracting and the word they use "embarrassing" at moments during a movie, especially when it is at a climax of excitement.  So much for Family movie outings.

I had been at the school and community playground for a meeting brainstorming with others about how to build an inclusive playground for children with disabilities in our small county seat community when Mac and Dad picked me up.

Pulling up I gasped when I realized when we could not find a parking spot on main street that we were in trouble and following up on the promise we made.  Breathe Mom, breathe.  We pulled into the empty handicap parking stall next to the City offices.  Doc and I looked at each other without saying anything, we knew we were in for an adventure.  Unfastening Mac and picking up  his blanket Dad and I talked to him about the rules.  "We are quiet while the movie is playing so others can watch the movie and not be disturbed."   Finding Dory  here we come, praying for Mac to be quiet and praying that those around us would not be too annoyed.

Many parents with autism and obvious disabilities do not take their children out.  I learned early on that we needed to get them out.  Practice learning opportunities, and expose them to the sensory world of the greater community.  Temple Grandlin a renowned expert writer and speaker living with Autism says we as parents need to push them out of their comfort zones.  We had to push Detamara to expand her tiny safe little world and going to a movie would provoke a tantrum of that would hit a 7 on the richter scale.  We worked for many years and finally as an adult she likes going to the movie theater except with her little brother!  For Becca she loved to go, but we had to wait until there were fewer people and it was not for sensory issues with her autism, but for exposing her to the bugs floating in the community with her immune compromise.

As Doc carried Mac towards the door, his little arms began flapping and he was squealing "Finding Dory".  His involuntary movement disorder triggered by his excitement and he was too happy!

Approaching the ticket counter we ran into his primary care physician who manages his complex care and her family.  Saying hello and I mentioned that this is going to be an adventure and hoped that he would be somewhat quiet.  Never expecting perfection.

Popcorn, sodas in hand and grabbing on of the booster chairs, we were at "Finding Dory" after the hundreds of requests for the new favorite movie. I was silently hoping that the popcorn would keep his mouth busy and quieter!

Picking a seat down front, off to the side, fewer people, an empty space in front of us before the last two rows down front, Mom on one side and Dad on the other. Mom on the aisle, ready to make a break for it in case he "just" got way too excited and loud.

The trailer had him already talking all the while eating popcorn. He has now mastered doing two things at once.  "Mom is that a pelican." Pelican's like to fish in the water. No Mackie in a whisper, that is a "Piper". "But Mom it is Pelican".  "No Mackie, it is Piper. Pelican's have huge beaks and this little guy has a small beak." "Mom when we get home can we learn about Pipers on google?"  Yes Mackie.


He quieted down and then just before started, he started in on the exit sign.  "Mom that is an E and an X and an I  and a T" and announced the newly found letter sounds he has discovered. " Good job Mackie, but remember we have to be quiet in the movie theater!"

The movie started with a startle. He whispered "Finding Dory" and his chorea had his arms flailing and body moving and he nearly fell out of his booster seat with the excitement.

The beginning of the movie, he was mesmerized, he had settled down and patiently watching and taking in the movie.  He was moving his head to different angle to take in the screen.  Mackie has been recently found that his prenatal exposure to alcohol has caused his eyes to be damaged. He has floating blind spots, he is missing peripheral vision on both sides and cannot see things in the bottom 1/3 of his vision.  He sees best 6 to 12 inches away and his vision for distances a blur.  He is seeing and understanding what is going on we believe mostly with limited vision and his keen hearing.

Soon Mackie was quietly scripting, repeating what his favorite characters were saying. I would give him the "shush" sign and quietly whisper in his ear "Quiet in the movie theater" and he would stop.  Over and over again I would quietly prompt him. I believe he repeats to help process what is going on as I have learned from his other adopted siblings who has an FASD.

Bracing for the moments of climatic excitement, I would pick him up out of his booster and get ready for the ensuing storm of movements and unpredictable what was about to come out of his mouth.  We made it through the first three quarters of the movies without a huge event.  Going through the pipes a wrapped him in his always calming best friend blanket, hugged him with deep pressure, prompting, coaching, prompting, now using my finger on his lips to prompt, quiet.  Soon he was putting my finger on his mouth to help himself from talking.  He was trying, we were trying to hold it together.  But my own anxiety was now probably making it worse.  Breathe Mom, breathe.

At the moment of Dory not finding her family, he lost it.  "Mommy she went to far and didn't find her family and Nemo and Marlin are getting taken away."  That was it.  He was sad, he was worried and he was now loud.  Mackie was talking and sobbing and asking loudly they need to get Nemo and Marlin as we scurried up the movie theater aisle.

I was happy to have gotten him out, but quietly hoping that he had not disturbed too many people. I just hope people understood.  With Mackie it is obvious that he has differences.  Thank heaven people will not judge me for my parenting like when we would take Detamara when she was tiny and acting up.  But knowing that some would judge us for bringing a child like him out.

Mac was happy looking at all the movie posters in the lobby and naming the Angry Birds on the poster of the movie that we had missed seeing. Knowing that it was going to be too much.  His birthday wish movie date with Dad and Kung Fu Panda 3 had taught us that lesson.

We visited with the movie theater manager who was busy turning off the movie poster lights and getting ready for the end of the movie.  I immediately apologized for Mackie's disruptions to the manager.  Mac was taking asking what happened in the movie. I prompted him to ask the man for the answer. Mac asked him "Did Dory find her family and did they save Nemo and his Dad?" Maybe he could answer the curiosity as he has been listening through all the multiple opening weekend showings.

The manager did not answer his question, but pulled out his business card and told me that Finding Dory; was going to be at the theater for two weeks and that Wednesday evenings there is usually a thin crowd. He told me to give ticket counter the card and we can come back and watch the movie to find out what happens for FREE.

Living in a small town this movie theater manager has had opportunities to meet my kids. He has been there when Becca would go night after night when the Twilight obsessed young lady would spend her own money feeding her OCD. He even gave her the movie theater poster on the last night for being the biggest fan! I have had conversations with him about volunteer opportunities for my daughters and hopes that someday they could have a small part-time job.

He was generous and understanding and the offer of finishing the movie at another time and after having this exposure, he may be a little less excited and exuberant!.

Doc and I headed up exhausted with a happy little boy who went to the movies and saw Finding Dory.  Scripting lines from the movie and "Swimming, Swimming" he was happy. He didn't need to see the end, he had seen it.  Scripting and questions he was bouncing, flailing and a mile a minute everything was in fast motion.  Until he slowed down and  asked,  "Does Amazon say when the DVD will be released and will we get it Mommy, will we get it Daddy? Will the mailman bring it?"

Yes Mackie we will buy Finding Dory!  All the while we got him into his pajamas and getting him his medications, and doing his neb treatments, nose sprays, we chatted about the story.  He has it all down.  Snuggling him to sleep he scripted the story.  He drifted off to sleep I am sure dreaming of Finding Dory.

After setting down for a my stress relieving chocolate bar and Diet Pepsi.  I was tired, I was exhausted and  I had tried my hardest to do every little trick I knew to keep him calm and quieter so not to disturb others.  My head was spinning with wondering if I done the right thing taking him to the movie?  Should I have made him stay home or wait depriving him of the opportunity because he is different?  Part of what I have learned to do is to reflect on things, look at what worked, what were the struggles, and how I can help them be more successful next time.  Tonight my head was spinning.
my stress relievingI asked Doc "If Mac was as disrupting as it seems?"  Was I just frustrated, my perspective was clouded.

Doc replied.  "He was just Mackie."  Most people will understand and if they don't, they are the ones missing what this movie was all about.

Acceptance, understanding and they just keep swimming against the odds.

I have been parenting in the special needs world for now 26 years with 7 of our children with various learning and medical diagnoses and a long proponent of inclusion.  There are now special movie performances where parents like me can take our children in a few places and not have to worry about disturbing others, but for those kids, they have to wait until it is at the end of a movie run and those movie theaters are few.

But we cannot learn to accept the differences of others when we they are out of sight to the greater community.  Inclusion means at times, we may make others a little uncomfortable to make wishes and dreams come true to those with differences.  For Mackie's future he needs to practice skills in the greater community for a better future.  Lessons from Finding Dory for this Special Needs Mom and lessons from Mackie and his enthusiasm.

We have not decided to if we will go back, but Wednesday June 29 at 6:45 we will drive by the theater and see just how many cars are there and make a decision without telling Mackie. No disappointment if it is busy.  He is content for now, to wait for the the mailman to bring his Finding Dory and he will wear it out until the next movie love begins.

The girls and I have talked about the lessons from Finding Dory. Detamara has a profound memory disorder from her birth mothers prenatal use of alcohol leaving her with the only intact memory is facial recognition. Becca remembers everything with her autism and her Noonan Syndrome and has short term memory issues and they both struggle with executive function deficits.  Mac has an incredible memory, but he will struggle with many things and the lessons of Finding Dory will be talked about in our home for months and years to come.

This morning Mackie told me that he wanted to talk about something.  He began talking and I flipped on my video camera to catch part of our conversation.  He was upset about breaking the rule. No one had faulted him, but he is  rule guy and he is worried.  Sharing Mackie and my conversation.



I know Mackie will try harder next time.  I know that every time we practice he will feel more confident that he can do it.  He tries his best everyday living with the effects of Fetal Alcohol Syndrome and Autism and this traumatic beginning.

Thank you Disney for Finding Dory and Thank you to the Grantland Theater for the chance to finish the movie.   (Sunday June 19 at 7:00 pm) To the movie goers who joined us on our adventure,  I want to  Thank you for your patience and understanding while Mac watched Finding Dory!
From a very grateful Mom.

Anny






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