Here's another post from guest blogger Sheryl Singleton Lynch. This time she offers practical
advice on how to transition developmentally disabled youth and young adults to living on their own.
You may have thought this day would never arrive: after a seemingly interminable wait, you have been notified of a residential opening for your child. A major change is coming and it’s natural to be a bit hesitant. Developmentally disabled youth and young adults may still have difficulty dealing with change – don’t we all? The difficulty in adjusting may be more pronounced for older adults who have never spent any significant time away from family. Based on parents’ experiences helping their sons and daughters take flight, here are some things to consider:
Start Early. It’s best not to wait until your child is in late adolescence to put him/her on a residential placement list. There is a significant wait for placement, and there is no guarantee that the first selection will be right for your child (and you). Nevertheless, while you may not find the perfect placement, you are encouraged to find one that works for you and your child. One important task that needs to be completed before your child turns eighteen years of age is to appoint a guardian. If this is not done, your child will be viewed as an adult in the eyes of the law, and you will have no ability to make medical, financial or other decisions for them, even though they are not capable of it themselves. There are several types of guardianships; look for a future discussion of this subject in these pages.
Practice makes things go smoother. If you are able to arrange for respite weekends or a sleepaway camp while your child is growing up, this is excellent practice. It helps him/her realize that s/he can be okay in the care of other adults, and that they can have fun with their peers. Other people can help them get their needs met. There are a limited amount of scholarships and family reimbursement funds available to help with these trips. Ask your Care Coordinator for information. Another tactic that can help your child is the creation of a social story. You or a behavior specialist can work with your child to develop a story which describes what is likely to happen as they move from your home to a residence. This can help your child deal with any anxiety they may have about the change.
When you get the call. Set up a visit for you and your child. Try to arrange to be present when other residents are there, say at dinner. Ask for a tour of the entire house. If it’s possible, arrange a sleepover visit.
Write a letter to the staff. After you decide on a residence, introduce your child to the staff. After all, you *are* the expert, the one with the most hands on experience. You know the ins and outs of his/her behaviors, which foods are liked/disliked, whether he/she sleeps through the night, their favorite shirt, etc. Until your child has spent some time with the residence staff, you may have to do a lot of interpreting, especially for non-verbal residents.
Take care of yourself. Your child is going through a transition, and so are you. If you aren’t already in a parent support group, this would be a good time to join. Other parents can provide a unique perspective on the situation.
Letting go is not easy. It can help to remember that we want the best possible outcome for our kids, and helping them move toward greater independence, although scary, is beneficial for the entire family.