MAX – the World Traveler
As parents, we dream of new babies with great anticipation. On day two of Max’s life, Dr. Brian identified Max with a syndrome. Dr. Brian had accumulated data (about 200 pages) of different life problems related to the syndrome for professionals and families. It was broken down informally into chapters. Max remained in ICU for what seemed like a lifetime, so I devoured that document. I took a chapter a day and my husband and I would process the information. It allowed me to read about the possibilities for future medical issues, which I should be watchful for down the road (i.e. detached retina). Dr. Brian would still run tests, but he was confident we were looking at Charge Syndrome. So, we got out the pencil and paper to take notes as he continued talking– cranial nerves, deaf, blind, mentally retarded…My husband and I were devastated! We had gotten our pills all at once and it was hard to swallow. Through shock and tears, we returned that day to the Ronald McDonald house and our journey began.
One of the best things we did early on was attend the International Charge Conference. It happens every two years, and we pounced on it. There were approximately 120-160 families and professionals in attendance who were dealing with Charge Syndrome. We met lots of families and their children who were just like us – it changed our lives. No judgments, just acceptance. The conference introduced possibilities, answered questions, provided information we had not seen; and we took off running! One of the best take-a-ways was to establish a communication system for Max. We would not be where we are with Max today without that.
The Kentucky Deaf Blind Project (KYDBP) was instrumental in the transfer of knowledge and making communication with Max the main focus. KyDBP staff met us when Max was 3 months old. From the entire team, we learned to always alert Max before we touched him, changed diapers, and any activity. We learned to tackle today’s issues, not future “problems” which may or may not come. We just did what KyDBP told us to do. Most importantly, we learned to enjoy Max and create that emotional bond that comes with being parents.
Max is 18 years old now. He has worsened considerably. He is totally blind but has some light perception. Max is totally deaf with sensory issues. Our intentional decision to find a way to communicate with Max when he was very young has greatly impacted today. Communicating with him laid the groundwork for the rest of his life – and ours.
KyDBP staff went with us to ARC meetings when Max entered school. They provided information about how to teach Max, fought for him at times, and helped the educational system learn how to work with Max. Without the project pushing communication and signing partners for Max, he would not have been able to tell others his wants and needs. I can only imagine Max sitting in a corner, unable to communicate – locked in his own little world without interaction with others. This would have led to frustration, which has a direct link to behavior issues. Instead, Max trusts the adults around him and will negotiate with others when he feels a loving relationship.
KyDBP helped us give Max a soul – yes he was born with one but he was a medical basket case too. Society would have viewed him as different with defects and disabilities. Instead, Max is a world traveler. He has been to France, England, the Caribbean, and went to the Olympics in Japan. He loves swimming and since he has ear issues, we often negotiate the kitchen sink for his enjoyment. He pushes the cart at Sam’s Club, helps select items on the shelf, and knows he has to pay for it by swiping the card. Max needs a structured environment, in which he is physically engaged. He has friends and goes for ice cream. We have a routine at bedtime. He brushes his teeth, gets in the bed, reads a book with one of us, says his prayers, and lights out at 11:00. Max can predict what is next because of structure and routines.
My husband and I went to Belize for the Olympics and we left Max at home because of ISIS making threats. I thought, “what if something happens to us? What will happen to Max”? I admit that the future scares me. For him to hold down a job it would take several support people and what business would be able to afford that? “Who will take care of Max?” I see him in some kind of long-term care. We do not want our daughter to assume the role of caregiver but instead to oversee his care. We have been on the Supports for Community Living (SCL) waiting list for 3 years. We have a Michelle P waiver and I hear that there is something ahead that is like the Michelle P on steroids! We have students from Spalding who change every two years. To introduce these students to how they can interact with Max, we made some videos and posted them online about how to interact with him. This has been very useful, not only for the students but also teachers, and educational staff to visually demonstrate what Max is capable of. It also established a baseline for him to continue learning. I never want to hear “he can’t do anything.” Some have used it as an excuse to do nothing. I want to hear “Look at this – he can!” Whatever the future holds, Max will need purpose. He has purpose now – people tell us all the time how unbelievable and inspirational he is. At church, he signs the songs. What a blessing! He also does really well with daily living tasks. He goes to restaurants, community activities, and when he goes to the restroom, he turns off the water (which is incredible considering how much he loves water). Max has friends.
KyDBP helped us be proactive along our journey, and we will forever be indebted to them.
Max and friends
Max on Vacation