Staff - Parent To Parent NYS

What does a real life look and sound like for a young family?

It looks like children playing on a playground; it looks like friends sharing the joys of having children. It sounds like a day at the ocean with pails and shovels and kids laughing and crying or going to music concerts, plays, clubs, and outdoor activities and having fun! Real lives have a balance of work and play.

In the fall of 1985 when my son, John, was six-months old, he became very ill. Over the following months, he was having seizures and losing developmental milestones. He was admitted to a medical center for two weeks and diagnosed with Infantile Spasms which is a rare and violent seizure disorder. We left the hospital on Christmas Eve in 1985 and we did not know if he would survive, and if he did, there was no prognosis of what his future would hold. He survived and with medication the seizures stopped, but his cognitive development was delayed. Our family was catapulted into the “not so special” world of special services and special education.

When we received that first diagnosis, when we were told our child would probably have a developmental disability, our thoughts turned to fears, with some dread, and the realization that our young baby’s life would not be that of our typical developing children. Throughout our own lives we had seen how individuals with disabilities were treated, by the medical community, in school and eventually in everyday life…isolated in school and isolated in their living arrangements. It was not a world we wanted to be part of.

John’s seizures did stop, and he does have multiple disabilities. When he was a youngster, his assaulting behaviors were a challenge to be around. Between 1 and 5, he had an attention span of less than 10 seconds; he had no concept of danger and required constant and intensive monitoring. It was impossible to leave him unsupervised for a second.

Through those years we were also trying to be good parents to our other two sons. For several years we were a house divided – one parent was staying home with John, and one parent going to school functions, scouts, parties or picnics.

More often than not, when a family has a child with exceptional needs, gone are the days of typical day care, little league, birthday party invitations and neighborhood friendships. Gone for a parent is the ability to work, first, because of the medical needs of their child and second because of adequate child care. When a family’s income and earning power are diminished or eliminated, a downward spiral occurs. For families, funding for respite and child care can be the essential support providing guilt free time out or child care to go to work. Additional stress and less income are a real problem for most parents and is the undoing of many marriages.

John did progress. He started to talk when he was 5 and, eventually, he learned there were consequences to his behavior and privileges earned when his behavior was kept in line. He learned to ride a bike and to downhill ski at 8.

Today, John is a responsible citizen who works hard and continues to learn and mature. He reached the rank of Eagle Boy Scout at 18 and now works full-time. He loves watching sports of any kind and skiing is his passion. With services from agencies, supports have been provided that recognize and build on John’s interests and abilities. These have helped him build relationships and friendships.

At a school transition planning meeting, someone suggested that John go to bingo for recreation and socialization. What made someone think he would want to go to bingo? There was a great Celtic concert the same night; did anyone think he might want go to that? John loves Celtic music. A stereotype about people with disabilities? No one at school ever suggested that our other sons start going to bingo when they were in their teens.

Can you visualize a dream for your child? Can you picture what you would like for your child? I want John to be happy, to have friends, to be valued, to have an education, to have a job, to be free from ridicule and abuse (peace of mind), to have a life of his own rich with relationships and to be loved. Are there any service systems that can provide these things? Services cannot keep people safe (this was proven with the institutions of a generation before us) and they cannot provide and create relationships; only other people can do that.

Families can be a catalyst for change when they believe that their child belongs and when their child has equal rights to safely participate in everyday activities, and to have the individualized supports to make that happen. An individual with disabilities will be a stronger citizen when given the opportunity to focus on giftedness and assets instead of deficits.

I believe in Parent to Parent as a mechanism for parents to know they are not alone and as a place where families and people with disabilities can learn and grow stronger in their advocating. At Parent to Parent of NYS, we give parents roots and wings. Roots to start their journey of parenting a child with special needs and knowing there are others to support them and wings to follow the direction that their life journey takes them.