Skip to main content

May Edition eSpecially Parents: Paula's Story

My son, Tye, has occasional sensory issues that can overload his system. When this happens, my husband and I have witnessed Tye's very own, "Wolverine" manuever. Like Hugh Jackson's character in the X-men movie series, Tye will be walking with us in the mall and suddenly have the need to put his back flush against the wall and not move from that spot, looking around anxiously or with a huge grin on his face. 

We call it "the Wolverine" because in the first X-Men movie, when Hugh Jackson's character woke up in the lab at the school he rushed to the wall with his back to it looking around, trying to figure out what was going on.  We never know when it will pop up or just what will set him off.  Could be the lights, decorations, the acoustics...we haven't quite figured it out yet. 


Sensory issues have made life a bit interesting at times.  I never thought I would become a pretty good hairdresser. Tye can't tolerate the buzzer by his ears or nape of the neck well, or the cape for that matter. I did accidentally cut his ear lobe once - talk about guilt!  Boy does an earlobe bleed a lot.  In my defense, he moved.
Getting on an airplane is a definite so not happening.  I remember the last time we tried a few years ago, from JFK to Charlotte airport and back. I was flying with him, alone, to go see my husband.  Just getting through the check in and scanners was difficult.  Tons of different sounds, smells and other things to drive someone with sensory issues off the wall. 
Coming back from Charlotte airport, they let women and children board first.  Well, Tye had other plans.  We walked down the tunnel to the airplane while other families boarded, but Tye would not go past the area where the tunnel connected to the plane.  I told them to let the other passengers board. 
Passengers, flight attendants, the pilot... everyone tried to helpTye get on the plane, but no way would he allow it.  He protested like trying to get a cat into water.  At this point the whole flight was already boarded and they needed to leave.  Security came and saw the situation.  He overlooked protocol and let me call my husband on his cell to get his help.  My husband had to pick up my son with his legs and arms flailing around.  Luckily, we were seated in one of the first rows.  Once in and in his seat, Tye did great.  It was the getting on that was a real issue.  He just could not handle the jet fumes, the sounds in the tunnel and who knows what else.  I'm surprised we didn't get a round of applause when we finally got on that plane. 

I am so glad the security guard let my husband who did not have a ticket board the plane otherwise we would not have made that flight. You hear some stories about families who had really bad experiences with flight personnel or passengers on a plane when their disabled child is having issues that are just related to their disability not because of poor parenting or a badly behaved child.  I am glad, so far, I have not had to deal with too many ignorant, clueless or just plain mean people when my son has had issues that he can't control due to his autism. 

We drive when we travel anywhere now.  Makes it so much easier for us.  Tye's a great traveler by car.  We leave soon for a road trip up to NY - about a 10-12 hour drive, one way.  We are traveling with 2 dogs this time.  Let's see how that goes!

Sensory Websites:


eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here.

Comments

Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru