When my brother was three, the doctors found a tumor in his brain. I was six at the time so a brain tumor was a strange concept for me. But the sight of my Mom crying was all I needed to know the extent of this tragedy. After going through brain surgery to remove the tumor and returning home, my brother started showing signs of meningitis, an infection of the brain. He was rushed to the hospital in an ambulance because he would not come out of a grand mal seizure. When he came out of a drug-induced coma days later, we could see that Alex would never be the same again.
Searching For a Diagnosis...
Numerous professionals have seen Alex and created a laundry list of possible disorders in attempts to explain his behavior and struggle. Alex has been said to show signs of autism, aggression, sensory integration disorder, attention deficit hyperactivity disorder, Tourette's syndrome, obsessive compulsive disorder – need I say more.
Clinically, Alex was a mess, but all I understood was that he was different than before. He even looked different. Alex gained weight due to the steroids he was taking and because the surgeons had to cut a nerve that controlled the right side of his face. Half of his face was, and still is, permanently lazy. It was like getting a whole new brother.
Living with Alex...
As my brother and I grew up, life at my house was hell. Anything my parents or I said or did was crucial and could trigger a “tantrum”. My parents gave me a room equipped with a TV, Nintendo, phone and a lock on my door. Any time my brother got out of control, may parents ordered me to, “Go to your room and lock the door.” Somehow I was supposed to be distracted by these commodities while my parents tried to fend for their lives while trying to control my brother. It was torture.
My brother, to me, was both a “devil” and an “angel”. Sometimes I hated him so much and wished he wasn’t part of our family. When he was in one of his “moods,” he would speak to me or to one of my parents in an evil and threatening voice and sometimes go as far as physically hurting us. Immediately after he would change faces and become an “angel,” repeating, “I’m sorry, I’m sorry, I’ll never do it again. I never want to hit you. I love you.”
It took me a while to understand this switchback routine and I still have a hard time realizing that the imbalances in his head force him to act this way. I would tell him he was a liar and my Mom would yell at me and explain to me over and over again, the struggles which my brother faced.
Missing Out on “Normal”...
My family could never do the things “normal” families do. We could never go out to eat, go to the beach or any other family outings. While my other friends dreaded “family bonding,” I yearned for it and tagged along with my friends’ families seeking a normal family. I compared my family with my friends’ families constantly. Every time my family went out, we had to take two cars. If my brother acted up, one parent would take him home and one would stay with me. This was, of course, if we even got out the door.
My relationship with my parents was more like a friendship based on survival rather than a common parent to child relationship. Because of this we were closer. I trusted them and they trusted me.
Reaching a Decision...
Finally, after eight years of living like this, my family decided that we needed to find another place for Alex. There was no choice. Not only was my brother a danger to my family, he was a danger to himself. He began self abuse - gouging his eyes, banging his head on walls or biting his nails off. He was getting older and stronger and my parents were unable to keep him safe. He was at a stalemate academically. Unfortunately, the closest place that focused specifically on my brother’s problems was at a special school three thousand miles away.
When my parents first told me, I cannot deny that at first, a huge sense of relief came over me. Finally, my family would be at peace. Finally I could make up for lost time with my parents. But when we came home after leaving him at the school, our house was numb. My Mom got a job, supposedly to make some extra money, but I know it was really to avoid the silence in our home. And that peace I looked forward to - it was there. But it wasn’t like I expected. It was lonely. It was like someone had come and butchered a limb off the body of our family. My parents were never fully happy. It was almost like every time we laughed or smiled, they immediately remembered the missing piece of our family and felt guilty enjoying our family without him.
Finally – Alex Makes Progress...
My parents visited my brother every month and I was able to visit on almost every holiday. With each visit, we could notice significant progress and improvement. He was getting the help he needed. This place had the means to provide him with care and attention – more than any public school or other program could before. More and more we could see that we had made the right decisions.
Not only had his behavior improved, but he was excelling academically. Most importantly, he was happy and proud of his progress. It was just unfortunate that this place had to be so far away.
A New Dream – and a School...
One year after Alex was sent to this school, my parents started The Alex Foundation for Brain Injury. They put the word out about this “silent epidemic” of children with brain injury who are thrown into programs with individuals who are not educated about their problems and who do not know how to deal with children in this condition. Every day when I got home from school, there were at least two messages from families with the same problems who had heard of us and what my parents were doing, wanting to know more. I was amazed at the response. My parents continued to work hard to create a program modeled after the one where Alex was.
Two years later, through major support and donations, The Alex Center opened with its first student, my brother. Since then, the school has grown to support twenty-one students, each financially funded by their home school districts. Most importantly Alex is back at home.
Dreams ARE Possible!
Who knew that this event, that started out as a nightmare, would end up like a dream? When there is passion, anything is possible. We are all dealt struggles to overcome. It is what we do with these experiences that shows the reason for their existence. Although at the time I hated my life and thought nothing good could ever come from Alex’s brain injury, now I cannot be anything but happy about how it all turned out.
My family is back together and we can enjoy each other. I love my family now and I am so proud of them. There is no such thing as a “normal” family to me anymore. If it did exist, my family rises high above it. Although Alex still has his problems and there are times when it still gets rough, he has improved dramatically. Now I see the angel in him and more and more; the true Alex shines through. Every day through his kind words and sensitivity, he teaches me about love.
This experience has helped me understand him and his injury. I tucked him in last night and it seems that every time I see him, he has a new way to tell me he loves me. This time he tells me, “Rissa I love you all, I love you much of all.” He has so much love in his soul, but sometimes it is hard for him to express it through his menaces, but that’s what makes his love so much stronger.
The work of the Alex Foundation for Brain Injury has resulted in the development of a special school for students with brain injury called the Sea Star School for Neuroeducation in Southern California. To learn more, go to http://www.seastarbraininjury.org.
This material is provided by:
Lash & Associates Publishing Training Inc.
708 Young Forest Drive, Wake Forest NC 27587
Tel: (919) 562-0015 www.lapublishing.com
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