From the Heart — No Stone Left Unturned

I am going to take a bit of a break in following the timeline of Travis’s story to write more about our experiences raising a child on the autism spectrum. To speak to you from the heart.

As you have been following our story you have been reading about how hard it has been for us to find a successful school setting for Travis. A place where he can be Travis and find some success.

And you have been reading about some of the therapies we have tried to help him navigate his world.

This week has been a particularly rough week for our family. Tracy’s mom Cheryl is nearing the end of her battle with cancer. What makes this even harder for our family is that we must also worry about how this will affect Travis.

Loss is difficult for him. He has a great deal of trouble handling his emotions. He is simply unable to process what he is feeling. So it comes out in extreme behaviors. Sometimes anger. Sometimes despair. Handling our emotions is hard for all of us. But for Travis it is excruciating. It is hard to imagine the pain he is feeling, but I can see it in his behaviors. And as his mom, when he hurts, I hurt.

And we are unsure how to handle situations such as these. How much do we share with him? Do we try to protect him from the hurt for as long as we can? We find ourselves continually second guessing each decision we make. Should we have handled a situation differently?

In this case we held off telling him about the diagnosis until grandma was on oxygen. Because at that point it would be obvious to him. We decided to shield him from months of worry. What if she beat it? Maybe we would never have to tell him.

How much is he sensing? I’ve written in the past about his sixth sense.

But that is not the case. We had to tell him more about her story. On his birthday weekend while grandma was still fairly strong we had a birthday celebration. We mixed a happy celebration with other family members at grandma’s house. The goal? To have a fond memory that he could look back on.

So now as we get closer to the end I keep going back and forth about how involved he should be. The stress of it all is unrelenting. As I process my own emotions, and I support my husband and other family members, I wonder if I have the strength to keep Travis above water at the same time.

And the behaviors that show up can be off-putting to others.

Add to that the change in routine.

We figured out early that we needed to try to keep his life as routine as possible. Watch for instances of sensory overload. We changed the bulbs in our house. We bought a hot tub because water had a calming effect on him.

But every decision we made as a family revolved around what can Travis handle today. Was he going to be able to handle eating at a restaurant today? They could be extremely hard because of noise. And finding something on the menu that was gluten and casein free.

Corey doesn’t remember this story. One day she asked if we could do something. I cannot remember exactly what it was. Maybe go out to eat. Or to a movie. I replied that we needed to see how Travis was doing on that day and we would decide from there.

Corey had a bit of a meltdown herself. She replied, “Travis, Travis, Travis, Travis, TRAVIS”!

I’d like to think that I asked her nicely to sit down on the couch so we could have a conversation. But it probably didn’t happen exactly like that.

I shared with her that I understood her frustration. And I reminded her that even though it seemed like we spent a crazy amount of time on Travis’s needs, how much I did with her as well.

Corey was very involved in gymnastics and cheerleading competitions. We attended her gymnastics meets. And we traveled out of state to attend national cheerleading competitions. I traveled with her to a gymnastic camp where I stayed to be a house mother for several girls. I attended for free. It was my job to keep track of these girls during non-workout hours, and to feed them supper.

After listing a few of the things I did with her, I told her a story. A story about if anything ever happened to her resulting in a brain injury, or a physical injury, that I would fight for her every right. And do whatever I could to make sure her life was the best possible life she could live. And I would fight for her happiness.

And I told her that I prayed I would never have to.

But I hear her. Remember the summer I wrote about in my blog titled, “Our Summer Project”? I told him that we could do fun stuff after he finished his school work. Because this is back when I thought he was just being stubborn. Well she wanted to do those things too. Only we never did because he never completed his work.

When Travis was younger he loved riding his bike. I wrote in a previous blog how he and Corey participated in BMX bike racing. But we had to make a choice as parents to no longer participate in an event he was good at because the sport itself was too aggressive and unsportsmanlike. At least that was our experience at our local racing club.

Boys would throw their bike off the course if they were mad because they crashed or did not win. They would use foul language in front of us and our children. They would yell at their parents. It was an extreme sport with extreme personalities. Travis was an aggressive racer. He would either win or crash in the effort. And sometimes taking other less aggressive riders down with him when he crashed. We decided we didn’t want to spend our family weekends in this environment and that it was not a good place for an already aggressive kiddo to be spending his time.

And we decided that these other racers were modeling a behavior that we did not want Travis to pick up.

Which meant Corey was no longer able to race.

And his meltdowns must have been scary for her. Especially as he got older. I know they were and still are for me.

One day I am going to ask Corey to write a week of the blog from the viewpoint of a sibling. I hope she says yes. (What do you think Corey?) And if I do get my book written, maybe she can take on a whole chapter. I am sure she has plenty of stories she can share about the joys and heartaches of being the sibling of a child with special needs.

Corey has grown up to be a beautiful woman, inside and out. And she is a terrific mom. And her career is all about helping children with learning disabilities. She cares for every single child she works with, and created curriculum and resources for others to work with children using her technique. Because she wants to help more children than she can possibly do on her own.

Did living with a brother with special needs inspire her to help others like him? I’d like to think so.

Vacations are also hard. Again we are way out of routine. And your going to places with lots of people and lots of noise. And overstimulation. When your child is over stimulated at home it is much easier to address the meltdown than it is in public.

How do you handle your child having a meltdown in a hotel room? And you are silently praying that the people in the next room do not think you’re torturing your child and call the police. Because that is what it sounds like.

We brought the kids to a Rockies Spring Training in Arizona. One day Tracy was waiting in a line with Travis to the men’s room. There was a man in front of them in line that was coughing. Travis proceeded to tell him that if he quit smoking he would cough less.

One year we went on a Disney Cruise. It was our first and last experience on a large cruise ship. Travis wanted to go on the dolphin excursion. But being newbies, we did not know that we needed to book that in advance. He found it very difficult to enjoy any of the activities because he perseverated on the fact that he was unable to swim with the dolphins.

He brought this up many times over the years. We would remind him of the many fun things we did. But he could not get past his disappointment.

Years later I brought Tracy and Travis to a conference I attended in Orlando. We spent a day at Discovery Cove and bought Travis a special ticket to be a dolphin trainer for a day. Which he loved. We followed around hanging out in the outskirts keeping an eye on Travis. We were afraid they would not allow him to participate if we shared that he was on the autism spectrum.

When he is involved in a task or subject that he loves he will ask a lot of questions and offer up all of the knowledge that he has to others. I’m sure that day he monopolized the time of the trainer in charge of the outing. When we joined Travis at lunch a staff member came over and spoke to us. At this point we shared that he was on the autism spectrum and we watched as she had a visible aha moment.

But I also think that he had a positive effect on others on this day because his enthusiasm was heart-warming and contagious. They even let us join in during the swimming with the dolphin’s portion.

Because of how Travis might behave we had to be careful when deciding on what we did or did not do as a family. Sometimes it was just easier to eat at home than have a bad experience where they had to box up our food in order to go to a restaurant.

Many times over the years I have shared pictures of Travis with individuals involved in his care. I have always called his circle of caregivers and teachers Team Travis. I carried an envelope of pictures in my purse of Travis doing regular kid stuff. And happy. Because I felt like it was easy for people to forget he was a beautiful child when reading reports about him. And I would pull out the pictures and lay them on the table to remind Team Travis that he was not always difficult.

Today I would like to share some of those pictures with you. Many of them correspond to a story I have already shared with you. I think I will go back and add some pictures to the old blogs. But I will share them here today so that you don’t have to go back and find them. Many of them are pictures I have shared with Team Travis over the years.

Thanks for letting me ramble today. It is very hard even for me to focus with so much other stuff going on right now. Thanks for letting me speak from the heart.

“If I could wish for my life to be perfect, it would be tempting but I would decline, for life would no longer teach me anything.” - Allyson Jones

Travis holding the wild bird that fell out of it’s nest from my blog, “Sixth Sense”.

Tracy took Travis to the pet store and they came home with Sonic. They are still the best of friends, I think it’s 18 years later now.

Wherever Travis went, Puppy went. The school was worried because Travis had Puppy answer the questions the teacher asked him.

Travis has quite a few trophies and medals from his BMX racing days.

Colorado Rockies Spring Training in Arizona.

Discovery Cove. FINALLY got to swim with the dolphins.

Discovery Cove. Sometimes I have to show him these pictures to remind him that he has had some truly happy days. This smile is genuine!