Hope Magazine Online For People of All Abilities

This Issue

Raising Michael

Michael was our first born, first grandchild on both sides of the family and so was infinitely special from the beginning. At three months old, I found him blue in his crib and he ended up in the hospital and on an apnea monitor for several months. No one believes that incident has anything to do with his later challenges.

Our family grew and our girls both had serious medical issues requiring long term hospitalization, along with the fact that my mother dies of breast cancer, my husband lost his job and everything that could go wrong went wrong. When we enrolled Michael in pre-school, the teacher was concerned about his lack of fine motor skills and the fact that if the window shades were left up, Michael would stand and stare out the window at the flag waving and flap his hands. This was back in the 80's, but should have raised more red flags than it did. The pediatrician basically said not every child will grow up to be a major league baseball player. Fast forward a few years.

We moved to VT from MA in 1991 for a job for my husband. We had been to specialist after specialist and while we knew there was something wrong, no one had a name for it. In 1992, the special educator working with Michael and his pediatrician referred him to the state for testing and they told us he had autism. They gave us a book and the one phrase that stuck in my mind from that book was "autism was a lifelong, handicapping condition". The book is wrong.

We chose to never treat Michael different from his sisters, one of whom still had special medical needs. Were there things we did for and with him we would not have done had he not has autism? Of course. But he did Special Olympics, he did adaptive swimming and horseback riding, he was the first child in the state to have the school system pay for Auditory Integration training, he had OT, PT, sensory integration therapy, endless IEP meetings. But at home, he was just Michael, he still had chores, he had responsibilities, he was an integral part of our family.

In 2003, Michael graduated from high school, 22nd out of a class of 194. He was invited to join the National honor Society, which he of course refused. His life consisted of school and home and when necessary, therapy of whatever kind. He transitioned to our local mental health agency as developmental disabilities comes under that category in our state. He has an amazing community support worker who has been with him since 2004, first full time, now part time. He had him volunteer at the library, learn adaptive sailing, be in and be part of our community. When Michael expressed an interest in working in child care, he helped make that a reality for him by coaching him on interview skills, and personal interactions. His boss, Katie, took a chance and hired Mike for one afternoon a week. When after a time it appeared that he liked his job but he wasn't going anywhere, Katie told him he wasn't showing any initiative to learning new skills. That launched him.

Mike began attending every workshop he could go to. Working with young children became his passion. He earned a CDA (Child Development Associate) a certification for child care workers that involved 4 college level classes he took on his own with no accommodations or an aide, putting together a portfolio, taking a verbal and a written test, and on observation day. I cried the day he told me he had earned his CDA.

With help from Section 8, Mike lives in his own one bedroom apartment, not far from us. It is decorated with Star Wars and Boston Celtics themes. He has his routines, but has learned to be flexible in some ways. He does not drive, so I take him with me to grocery shop and of course, comes home to do laundry. And, most importantly, he just at age 26, had his first date with a woman, something he has wanted for years.

Watching Michael, you probably would not pick him out as the person in the room with autism. But, he has no peer relationships (except the dating which is brand new!), has specific routines, is still under our legal guardianship. Last year when his wallet was stolen and his credit and debit cards maxed out, he didn't understand why he had to go to the bank right then and there, he wanted to go work out and go to work. He was not able to participate in the process of completing the paperwork or the phone calls, of making the police report or on following it up. There are many things in his "unable to do without help" column. But there is so much more in his "independent" column.

Coming home with the autism book in my hand and the phrase "life long handicapping condition" I could not have dreamed the life he now leads for him. He is happy and health, he goes to the dentist regularly, gets his physical and flu shot yearly, works out and has better eating habits. Do I wish more for him? Of course. I wish him a relationship with someone who will understand him and I wish children that he wants so desperately to have. He will make an amazing father. I have seen him with kids.

Yet, he is a success story. Why? I don't know. We tried a little bit of everything for him, taking bits and pieces from different programs that seemed like they were good for him. Schooling was tailored to him, not the other way around. Respite workers were used not to give us a break, but to introduce him to a social life. We never defined him as an autistic child and never let anyone else do it either. He was Michael, a child who had autism and some challenges, work with them and him and let's make the best Michael we can. And we did. He is 26, dating, living independently, buying a 6 pack once in a while to have with his pizza while he watches he much beloved Celtics play. He works, and is respected by his fellow workers, by the families of the children he works with and by the kids who adore him. I know this or a fact, his director has told me how much he is valued there. And I know how much he is valued within our family.

There are many who would not consider Michael as success because he receives disability, because he receives Section 8 assistance, because he has legal guardians, because he doesn't drive, or whatever other things they can dream up. But my son is living his life as an adult with autism with dignity and respect and success. Can we ask for anything more than that for any of our children. I can't.

Hopefully in my lifetime I will witness the day when being completely open about my mental illness will not be viewed as a matter of courage but as a matter of fact.