Update on Brandon Zimmerman

A supplemental article to "Born to Survive," published in the January/February 2006 issue of Stroke Connection Magazine. In our March/April 2002 issue, we profiled Brandon Zimmerman who had a stroke when he was 6 months old. Brandon¹s mom Nadine updates us on the joys and challenges they face as they raise Brandon, who will soon start school. Read the 2006 update on his story below, and read the original article that ran in 2002.

Sept. 23 was the fifth anniversary of my son Brandon's stroke. He is just 5 1/2 years old. As I reflect over the last five years, I think about the good times, the bad times and all the times of confusion and frustration. At that time in the year 2000, I never thought I would have much to say five years into the future. I thought everything would be fine and back to normal the minute we walked out of the hospital and went home.

At that time, the doctors assured us that Brandon would develop normally like any other child and that we did not need to worry or try to do things differently. They discharged us from the hospital with basically no follow-up care. The next five years happened only because I made it happen.

I pat myself on the back for all that I have helped Brandon to accomplish. I truly feel that without all of the intervention and therapies that I sought out for him he would still be a child staring off into space, a child not aware of his surroundings and with no drive to do anything other than cry.

I give myself credit for helping him from my heart and soul ... listening to my instincts. I am proud that I did not take no for an answer from the people I thought were in control. I am proud that I never let his accomplishments, no matter how small, be brushed off as nothing extraordinary by people who really didn’t matter anyway. I never let doctors or therapists give me or Brandon negative energy. I was never afraid to tell them that it "just wasn't working." Instead, I sought out loving doctors and therapists who loved him and couldn't wait to celebrate any milestone.

I am proud of my record keeping and my photographic memory of remembering all I seemed to need to know at the time. I have learned a lot of medical terms and how to use them. I learned the difference between rehabilitation (to restore to a former state) which is what an adult gets after a stroke and habilitation (to learn an ability) which is what Brandon needed after his stroke. I have learned about all the traditional therapies and not-so-traditional therapies. I wasn’t afraid to try something at least once to see if it could help Brandon. I have learned to intently read Brandon to see what was working and what was not.

I wish I would have kept a journal of my thoughts and feelings (not just a journal of his therapies and progress) when days were great and not so great. I am grateful, though, to have written many speeches telling our story in my own words. Each speech was changed slightly to reflect the present. I think the thoughts and feelings written in the present moments are very powerful.

I wish I had asked more questions at the beginning. I ask questions really well now; maybe it was just the learning curve that I needed. I wish I would have asked more questions about what our state offers to developmentally disabled children and what it does not. I wish I would have investigated the “qualifying diagnoses” and what those words meant. There doesn’t seem to be much to help Brandon once he turns six, and I think I should have started learning the state system earlier.

I wish I would have tried to think about the future and where his brain injury would take or not take him. I never thought to study the area of his brain that was damaged and how that might hinder his learning; I never thought about kindergarten. I am currently learning about IEPs (Individual Education Plan) with our school district. This is a program for special needs children to help them in school. We review his strengths and weaknesses, assess his learning abilities and the best way to teach him.

I wonder if he is in too much therapy; I wonder if he is in too little therapy. I hope he makes friends at school and fits in. Children can be so mean (I know; I was made fun of for years) and I hope his self esteem does not suffer when I cannot be around to defend him. I worry what will happen if he gets separated from me and cannot ask someone for help. I need to keep him close to protect him, yet I need to let him spread his wings and fly. How do I do both?  How do I know?

It took a while for me to accept that I have a "special needs child." I used to view that as somehow a negative thing. I still have a "special needs child" but I have learned that is not a negative thing. Brandon has blessed my life in so many ways and I am lucky to have him. He helps me to slow down in today’s fast-paced world. He appreciates the simple beauty of things and is not caught up in society’s high standards. For now, I try to truly enjoy my special little boy celebrating all of his accomplishments no matter how small they might be to the outside world.

Read more stories about children who have survived strokes.