Our guest contributor for today’s post is Dave Cottrell. He works in the Special Education field and is a member of the Springbrook Family Council and the Southern Tier Connect Family Council along with his wife, Jan who also works in Special Education. They are the proud parents of Alexandra, 26, and Nick, 23. Nick is a member of the Springbrook Adult Community and part of the Achieve DayHab Program. The Cottrell’s are grateful to everyone at these agencies along with Southern Tier Connect for helping Nick continue to reach new goals in his life every day.
When planning for the transition of your young adult with developmental disabilities to an adult with disabilities, their world and yours is about to change. It is a passage from being at a school where services were inclusive to a world where services can potentially come from multiple agencies and require more travel, more staff, and more planning. This can increase anxiety for both the young adult and the parents. We started planning the transition for our son when he was 15. It has been a series of steps to provide him with services and safety, and have good people surrounding him. It has taken time, planning, trial and error, and patience. Here are some ideas to help you plan for your young adult’s transition…
The Best Advocate is You and Your Child
As you plan for the future of your child, remember, no one knows them better than themselves and their parents. The first step is asking the child what their dreams are. Even if the child has limited verbal skills, they can still communicate their dreams through icons, pictures, assistive technology. Listen to those dreams and then write up goals to reach that dream. Also, remember no goal is too small or too big. Whether it is to live in a group home, cook a meal, go to a movie, or have a job, always be positive and encouraging. Some goals may take longer than others and that is ok. Every child goes at their own speed, with or without a disability, and no one knows that better than the child and the parent. It is also important to keep siblings involved in this process from the start. Ask them how much they want to be involved and what they think there brother or sister likes.
Start Early
It is never too early to start planning for transition. Planning for a neuro-typical child going off to college, the military, or a job doesn’t start when they graduate. It begins long before that with savings plans, internships, afterschool jobs, SATS, and college visits. It is important to plan the same way for a child with a disability. As a country, we are still catching up to helping people with disabilities which can mean waiting lists of months or years for group homes and workshops. We started planning at age 15 and it took two years to get to our son’s next step. New York State is now recommending Age 13 to 14 to begin planning. It may sound scary, but it is never too early to plan for transition. Sometimes, the first step is finding respite so your child is engaging with someone else and you can organize your thoughts for the future.
There is No Magic Book of Answers
As we have found over our son’s 23 years, there is no directory to go to listing all the agencies, ideas, funding, and other agencies to help you plan the future. OPWDD and some agencies have some guidelines. Most schools dealing in special education do not offer services either. While you and your child can go to a Guidance Office for help with college or military planning, there is no Special Education Transition Guidance Counselor. Over the years, the internet and our Care Coordinator have been wonderful assets. The best asset has been other parents. Read a book by a parent (Susan Senator is very helpful). Find a blog. Talk to families at school meetings or Special Olympic Events. Word of mouth can still be the best way to get information.
Ask Questions
As you look at community homes, schools, jobs, workshops, or dayhabs, do not be afraid to ask questions. Remember, you and your child will be filling out paperwork and your child will be evaluated to see what needs they have and if the program can meet those needs. As a parent, do the same thing. Ask questions. Take a tour by yourself and with your child to see your view and your child’s. Ask your CCM to go with. Look for reviews. Call OPWDD for recommendations. Ask if you can talk to other parents. Depending on your child’s needs, ask to meet Housing Managers, Assistant Managers, Nursing Staff, and Counselors. Don’t forget to ask about not only about school or work time but recreation time. Safety is always something to be asked about again and again.
Be Creative
Over the past few years, new ideas for people with disabilities to gain independence have come about. Depending on your child’s needs as they become an adult, I go back to my first paragraph. What are their dreams? Be creative. We are now seeing ideas such as group homes, setting up an apartment in your home, teaming with other families to set up a house, apartments within College apartments, and starting a group home at a farm are just a few housing ideas. Job ideas include workshops, dayhab, jobs in the community, volunteer work, or starting a business. Bakeries, car washes, and small farms have been started up and run by people with special needs and caregivers. Come up with an idea, talk with a Care Coordinator or OPWDD. Find out what is needed to make it happen!
Be Patient
Our journey with our son has taken patience, patience, and more patience. There is a process to everything. Depending on your child’s needs and age that you start transitioning services, multiple agencies can be involved. When we transitioned our son to a residential school, agencies involved included the school district, BOCES, the residential school, Social Security Administration, OPWDD, our son’s doctors, our CCM and us. When he transitioned from the residential school to an adult home, it took the school, community homes, doctors, us, CCM, OPWDD, Social Security Administration, and his dayhab provider. You and your child have the final say, but it truly takes a village to expand your child’s life. Remember, everyone is there to help. Be patience and document everything.
It is OK to be EMOTIONAL
Raising a child is a full-time job. Adding a disability on top of it adds to the workload. We all get stressed. Remember, it is important to take care of yourself too. If you are feeling overloaded, it is ok to cry, scream, or talk to a friend or counselor. When any milestone is reached, share the joy. Laugh, smile, tell the family. Somedays, you will go through an emotional roller coaster in a matter of minutes. Sometimes, the hardest part is people who do not understand or want to understand what you go through. Over the years, we have heard it all. The negatives-You are growing your child up to fast. Your child is the worst behaved we have seen. He went with his adult friends and not you. You are putting him in a home. The positives- He is growing up. He worked hard today. He paid attention to me. You are a hero for expanding his life. It is easy to forget, but you are not the only family with someone with a special need. Talk to other families. Share the highs and lows.
Be Prepared for Change
Life is a series of changes and they will continue long after your son or daughter has transitioned into adulthood. There will be steps forward and back. Staff will move on. Medical changes can occur. Something that was enjoyed as a child may no longer be liked as an adult. A job or workshop may change. Be prepared. Celebrate the milestones. Deal with the change. Remember, when buying property, it is location, location, location. To ensure a smooth transition, it is communication, communication, communication.
Your child will always be your child but cherish the memories of them as a child and enjoy them s the adult they have become.