Family Stories

Jeff's Transitions      

Evelyn Lowry, FIN Family Consultant

At 21, my son Jeff has gone through many transitions throughout the years. As a parent I have both participated in these and stood on the sidelines. In writing this article, I have tried to examine my feelings and my decisions in each of the steps that we have taken in order to share them with you. I will try to share with you the things I have done along the way that helped Jeff and our family.

First of all, you need to know that Jeff has moderate mental retardation, mild cerebral palsy and a seizure disorder.  He is a fantastic young man with a kind loving disposition. He can also be lazy. His favorite thing to do is to watch television or movies or play video games.

That being said, we have often had to push him in order to get him to move on to the next step. Today, he is working part time (20 hours a week) and living in his own town house. He has friends with and without disabilities that are very important to his life.

The picture to the right is of Jeff working at Home Depot.

I have learned that planning is necessary in order to successfully transition to the next phase of our lives. That is true for anyone.   However, when children with special health care needs are involved, it takes planning and help from health care professionals in order to make the transitions in life easier.  

As Jeff moved through the stages of his schooling, preschool to elementary, elementary to middle and middle to high school, we made provision in his IEP to monitor his seizures, provide OT and PT for upper body strength and fine motor development and speech therapy for communication and intelligibility.  

We worked with family and friends to provide social outlets, explored the community, the Arc, Boy Scouts and Special Olympics in order to teach social skills and self-confidence.

As Jeff was moving into adulthood, we knew that he needed to see himself as an adult, not a child. Too often, people with mental retardation are viewed as grown children. They never make the transition into adulthood. One way to facilitate that transition is to move from a pediatrician to an adult care health provider.  

Although, for us, this meant taking everyone, doctor, parents, child, out of their comfort zone, we proceeded with this plan. I called or e-mailed everyone I knew for information. Who were their sons or daughters going to for medical care? Who were the adult providers out there who were comfortable with mental retardation?

After getting a few names, I checked with our health insurance policy and interviewed the doctor. The doctor we chose is on a bus line, on our health plan and seems reasonable comfortable with Jeff and his disability. It would have been wonderful to have a list of doctors in advance that practiced adult medicine and were also comfortable with developmental disabilities.

Never forget your dreams and hopes for your child. This is a mantra that I say to parents and myself over and over again. Every parent wants their child to succeed. We dream about the future and try our best to prepare our children to be successful and happy. It is just as important to have dreams for children with special needs as for any other child.  

The key is to work towards that dream and to get key support people to help. When Jeff was 6, my husband and I dreamed that he would be working and living on his own. All of our IEP goals, transition plans and support services have been gathered with that dream in mind.  

Parents and young adults must plan for and gather supports around health care as well as employment, social and recreational needs and housing in order to plan for successful transitions throughout the years.

There will be mistakes, frustrating moments and times when tasks seem overwhelming. I can't say I still do not have those moments. We continue to support Jeff. We continue to put pieces of the puzzle together. I imagine that will be the way of life for everyone in my family for many years to come. We have made and lost friends along the way because of our need to support and advocate for our son.   However, when I look at Jeff, at his successes and accomplishments, I know it was all worth it.

Evelyn is the mother of Jeff, and also Sarah, a freshman at University of Denver.   Evelyn is currently involved in Washington County DD council, Accessibility Council and Lifespan Respite Advisory Board.