Luke's Story: The Importance of Medical Advocacy When Dealing with TBI, ADHD, Childhood Illness and Autism Like Behaviors

The BIG day; seeing the Dr after waiting 1.5 years.

For any of you who have read my book or followed my story, y’all know my son exhibited an array of behaviors that didn't seem normal, starting at age 4, back in 2020. We dealt with everything from discrimination in his schools, the community, even the therapists office, to being told that if I simply “parented better” his issues would dissolve into thin air. Many times, I sat in the principal’s office as they (because yes, it was MULTIPLE principals) droned on and on about how if I put a behavior plan into place, used a chart, things would magically get better. I listened to the psychiatrist counsel me on how much screen time my child received. I listened to friends tell me that he would one day end up in prison if he didn’t control his outbursts. I watched the whispering, the rude glares from strangers in the grocery story, the silent glances exchanged between well-meaning strangers who couldn’t believe I “allowed” my son to behave this way. While I do believe that behavioral strategies play a part, I knew there was more going on with my son than a simple case of needing to be taught better. I also knew that I wasn’t receiving appropriate help because doctors and school staff didn’t see the severity of his issues. This became magnified as he grew, but his academic skills didn’t. He also didn’t appear to have normal coping skills. After being told he had ADHD, the doctors prescribed ADHD meds. This, again, didn’t solve the root issue. I knew in my heart that there was more going on. As behaviors escalated, the school system contributing greatly by adding more trauma (no one there was trauma trained), and he was often labeled as a bad kid, I was advised to push for a brain MRI. His PCP advised against it, telling me it was the doctor’s job to advocate for my son, NOT mine. She did, however, give us the referral. I called my insurance and gave them a heads up why the MRI was needed, filling in them about the behaviors, the lack of help academically, and why we believed more was going on. When the MRI was approved, and performed, we found that he did indeed have a brain injury that had happened at birth or before birth. We got a referral to the top university hospital in Oregon at this point, but were told the wait could be up to two years. We waited from August 2023 until January 2025 to be seen. This wait time was sped up by two things: 1) documentation of when I first did the paperwork and 2) calling again and AGAIN until I was finally scheduled. The scheduling team did an awful job. They lost our original paperwork, closed our case, and only opened it with my original spot on the waitlist because I had documentation of when I submitted it and shared LOUDLY the importance of my son receiving timely care. Even after we were firmly on the waitlist, they told me we would be seen within 6 months, and then told me that they had lost providers and it would be an ADDITIONAL six months before we could schedule. Finally, when I called in November, I was transferred to multiple different people, none of who knew much about when we could schedule. I was told "the person who decides isn't here, call back Monday" twice. I KEPT CALLING! I repeatedly reiterated the importance of being seen, how my life was on hold due to my son’s medical issues and the fact that I was having to homeschool him and not work because of this. FINALLY, I was scheduled. When I saw the doctor last week, it was the first time in the FIVE YEARS of my son having these issues, that I was EVER actually listened to. He actually READ my son's chart, the extensive information I provided, and listened to our situation. He treated me like an equal human, not "just a parent". He helped us get to the root of the issue and we are already on our way to getting more help and finding appropriate techniques to healing my son and creating the life we deserve. Throughout this process, I have learned and continue to learn a ton that I hope can help other parents on their own journey. If we as parents want to help our children survive and THRIVE, we must take on this responsibility without assuming the Dr will do the leg work. Good Drs are very busy helping people, so it is up to us to do the following for our children with special needs:

Advocate. This means calling providers, scheduling appointments, doing our own research about the symptoms we see to make sure we are asking the correct questions in the Dr. office.

Document. Keep behavior logs, daily, weekly, whatever you can do. Using the ABC approach can be especially beneficial for behaviors. Document diet if you can, sleep schedule, everything and anything that can clue in the Drs

Ask for Help! You as a parent are STILL HUMAN! You need to employ whoever you can trust to help you with everything from appointments to taking care of the other child if you have one, to self-care time.

Be Consistent. With kids with special needs, especially the behavioral ones, it is even more important to be consistent. Set firm boundaries and expectations in the home and STICK TO THEM. If this is the only thing you have time to do as a parent, it will make the most difference.

Never take NO for an answer. When dealing with medical providers, if YOU as the parent feel there is more going on than what diagnosis you have received, it is up to YOU to keep on searching for the correct provider.

At the end of the day, it is the parent who will shape their child’s trajectory. Behavioral strategies and zero tolerance policies for aggression DO need to be put in place. Many of the strategies that are commonly suggested are good ones, but they don’t answer the whole picture. Amazing doctors can help us implement plans and get diagnoses that prove our child’s condition is real, allowing us to get the additional help and support necessary to give our child a full healing! In our case, my son was diagnosed with a TBI, which the doctor believes caused the ADHD and some of the other issues. Now that we know it is this, we can get the help I need to be able to work with him, help him get caught up academically, and continue to get his behaviors under control…we have been making steady progress! The doctor agreed with my pre-existing behavioral plan based on my own education and experience in that area, and now I can get additional support to implement it. Soon, I plan to write another entry about some of the strategies that I have used, with and without success, up to this point in our journey. For now, I must sign off because I have another battle to fight with my son—the daily battle of the homeschool work!