A Letter from Brandon's Parents
Written by Jean and Kirk Schultz
Imagine if you couldn’t always communicate.
Imagine if you couldn’t always understand what was being said to you.
Imagine if someone always dictated what you ate, wore and what you could and couldn’t do.
People always say you can’t, you won’t, there is no hope, you will never see a cause or cure over your lifetime.
BUT…… your parents say you can, you will and that your tomorrow will be better than your today with their help and yours!!!!!
Let us tell you our story about our miracle, Brandon, and the journey he has had and the things he has taught us.
Kirk & Jean Schultz
A story from the other side! It’s a journey not a destination
Our son, Brandon, defined the odds and survived an emergency surgery while Jean was pregnant.
When he was born, he was perfect. He smiled and cooed, and our experience was everything we dreamed about and more. Our physician raised our baby up in the air and said, “You all have witnessed a miracle”.
Brandon at 4 months old was found to have a lymph/vascular malformation; he developed a staph infection, and later had radiation to reduce his tumor. Things just seemed to get more complicated for Brandon as he started having issues with choking on foods, vomiting frequently, experiencing diarrhea to constipation, and only sleeping about 4 hours a night. He always met his milestones and was very social. However at 15 months his sleep got worse- he would only sleep 2-4 hours a night and was like a wild animal—all he did was scream and cry! We would spend our nights driving him in the car to help him calm or would stroller him around the house to classical music. He started head banging. At 16 months he stopped saying mom, and he wasn’t picking up any more language. He was diagnosed on July 20, 2009 with Autism—he was almost 2 years old. Brandon was also diagnosed with Epilepsy and PFAPPA at age 2. He has been sedated over 20 times for test after test trying to determine what was all going on with him. He spent 2/3’s of his early life in a fight-and-flight response. As Brandon got older, he developed GERD, asthma, hypotonia, etc. He has faced many challenges with his health, and we have spent much time going from specialist to specialist trying to meet our child’s needs.
Brandon has taught us more about life than anyone we have met. He has taught us that the simple things in life are the most extra-ordinary. He taught us that he just needs a little extra help, more love and patience. We learned that we must teach him through play. We tried to teach him in books, and he gave us puzzled looks. We tried to teach him with words, and they were often not responded to. We cried a million tears with him and finally we asked how shall we teach you-how shall we help you and he put the key into our hands and said, “Come play with me.” He taught us to love him for what he is and not what we thought he should be. It is happening to him and not to us. His sensory perceptions are distorted. His environment seems hostile, he may appear withdrawn or belligerent to us or to others, but he is just trying to defend himself. We must remember to distinguish between won’t (he chooses not to) and can’t (he’s not able to). We must focus on what he can do rather than what he can’t do. We must look for his strengths, and there are many. Brandon loves life and enjoys swimming, riding the train, playing with his family, swinging, and the list goes on and on. He is a very loving little boy.
There is more than one right way to do most things. We must find what triggers his meltdowns-they occur because one or more of his senses have gone into overload. Brandon has taught us that having Autism means that you think like a few people who changed the world we know today—like Bach, Einstein, Newtown, Mozart, Edison, Van Gough, etc. He has also taught us that he may not be great at eye contact or conversations but that he does not lie, cheat or pass judgement on other people.
Brandon has taught us that it is happening to him and not to us. It is our responsibility to help him find a better tomorrow. Without our help and yours, his chances of a successful, self-reliant adulthood are slim. We believe a small group of very intelligent practitioners -if they work with parents and educators and children on the spectrum can and will find the cause, the cure and a better tomorrow for Autism. We need your help to coordinate our efforts with a team approach to help our son and kiddos like him to make a better tomorrow for those impacted by autism.
