Making the Team

Special needs parenting is a full-time job. In our case a hard one. Also in our case, it seems, a forever job.

I have written in the past that advocacy is a ton of work. Part of the reason it is so exhausting is because I feel like for many years the professionals were not listening. If I am not being heard, it just stands to reason that I am not being understood.

It took years to build a supportive team for Travis. I refer to this group of professionals as Team Travis. I have mentioned this team in the past. The main team members besides me are his family physician, psychiatrist, therapist, and his case manager. Others, such as job coaches, come and go.

I want to share a story with you about Travis’s current physician. Travis was still seeing his pediatrician when he had his first gout attack. The pediatrician did not suspect gout in a young man Travis’s age, so he did X-rays and other tests.

When he figured out that it was gout, he advised us that it was time to find Travis a family physician. I knew it was time, but had been dragging my feet. Travis had been with this pediatrician for several years, and he got to know Travis and our family.

Travis had his fair share of stitches and broken bones. Some from being 100% boy, and some from his poor decision making skills. When we did arrive at the doctor’s office for his routine doctor visits, the staff would put us in an exam room right away. They had learned that Travis was unable to sit still. The last time we waited in the waiting room Travis got on the roof of the playhouse and beat his chest while making gorilla sounds, instead of playing inside it.

Parents would look at him and then glance at me. I didn’t care. I always made his appointments for first thing in the morning. With the belief that they could not be that far behind that early in the day. If the doctor’s office didn’t want my boy acting out a movie in their waiting room, they shouldn’t leave us in it for so long. They got the message.

Even though I knew it was time for a new doctor, I did not look forward to taking what little energy I had to educate a new team member. I did have Travis’s pediatrician forward his records to the family physician that I chose. Remember, this was back in the day. Nowadays all you have to do is stay in the network and all of the records can be found on the computer.

I remember our visit with the new doctor well. I was prepared. I did bring a stack of reports and evaluations. I also provided him a record of every prescription that Travis had been on, as well as a copy of the court report naming me as Travis’s legal guardian.

Travis has many physical health issues in addition to mental health issues. I signed releases so that his physician could share information with his therapist and psychiatrist. Travis is overweight. The doctor shared with Travis that not eating right causes him to be overweight, and also factors into his gout attack and his being pre-diabetic.

The doctor asked Travis if he drank soda. Travis said yes. The doctor asked him how much soda he drank on any given day. Travis said he ordered a Mountain Dew at the restaurant the night before and they refilled it three times. However much that is.

And then the doctor looked at me. I’m thinking, ok, here we go. He shared with me that he didn’t allow his children to drink soda because it is not good for them. He said I need to tell Travis no when he asks for soda. He also shared with me the health effects of drinking soda. In essence, he was lecturing me on my parenting. He also shared that one of the medications that Travis was taking could be causing some weight gain.

Sometimes a conversation is all it takes to be a learning moment for someone. I decided that this doctor and I were going to have this conversation. And depending on how it went, this doctor may or may not end up making the team.

After the doctor finished the exam, I handed Travis my keys and asked him to go wait in the car. I asked the doctor if he had a chance to review the records that Travis’s pediatrician had sent him. He had not. I took a few minutes to share a bit of our story. Travis was on the autism spectrum. Travis also has severe sensory sensitivities. I shared how hard visiting restaurants was for him.

I shared that the restaurant visit was a reward for an appropriate desired behavior earlier in the day. I shared that our family is a bit on edge when we take Travis to a restaurant because it oftentimes resulted in a meltdown. When he asked the waitress for a Mountain Dew, I knew from experience that this wasn’t a teachable moment. I assured the doctor that Travis did not drink this amount of soda on a daily basis at home.

And then I asked him if one of his children was on the autism spectrum or had a mental illness. He said no. I told him he couldn’t possibly understand the parenting decisions I have to make on a daily basis. How I learned to pick my battles. Because if I didn’t, all day, every day, would be full of nothing but conflict.

I acknowledged that Travis was overweight. But at this time I am more focused on his mental health. I shared that he talked about dying by suicide often. If he acted on that, it was not going to matter how much soda he drank the day before. The medication that may be causing weight gain was the first one we had found to show some positive effect without all the negative side effects.

I’m thinking I am going to have to find a different doctor. But then the doctor apologized. Told me that I was right, he shouldn’t have made the parenting comparison. Thanked me for the conversation and assured me that he would take a closer look at his file. I was shocked. He did not minimize my comments or feelings. I remember reading somewhere along the line a parent say that she didn’t know if professionals realize how much their interactions with us impact our families.

It was obvious to me at our next visit that the doctor had taken a closer look at Travis’s file. He treats Travis as an individual deserving of respect. He listens to Travis as he goes off on a tangent, and brings him back to the conversation. A few visits down the line later, he had a social worker from the practice come in the exam room and visit with me. She asked me how I was doing and if there was any other services that they could help us to obtain to meet Travis’s needs. That was new to me at the time. A professional asking me how I was holding up.

This doctor made the team, and has been part of the team for several years now. He responds quickly when I send an email. He must have connected the dots because one day when Tracy was in his office for his physical the doctor told him that he thought we were doing a great job taking care of Travis.

I would like to think that our conversation that day made him a more compassionate doctor. And that compassion carried over to other patients in his practice.

As part of my advocacy for Travis I have in many instances had to have a conversation with various providers. The best resource they have regarding my child and his needs is me. The input from parents is valuable. I have already made the mistakes and learned from them. I have years of 24/7 experience with Travis. The ideas I have to help others serve him better may actually work for other clients as well.

Teamwork is defined as cooperative or combined effort of a group or persons working together as a team for a common cause. The cause in this case is Travis. The dream is for him to live his best life.

“The bigger the dream, the more important the team.” - Author Unknown