I am twenty now and, of course, the adulthood conversations are frequent. I’m thinking about it, my friends are thinking about it, my parents are thinking about it, and groups with other parents have formed to discuss it. I feel overwhelmed by the information and do not know what is best for me. There are a few things I do know.

  • The regulation of others greatly impacts me. I have concerns about group living for this reason.
  • I feel independence in my day is key. I need my time alone.
  • Getting appropriate medical care and feeling comfortable with food is an unknown.
  • I don’t necessarily want to be with friends daily. It can be overwhelming. Seeing friends on weekends would be great and gives me something to look forward to.
  • Independent living with drop in support sounds amazing.
  • Informing decision making is very important to me.
  • Ongoing therapies and academics are a must.
  • Having trained communication partners at all times throughout the day is essential.
  • I need quiet for much of the day to stay regulated. Living with loud people, or even spending full days in a noisy environment, may be too much for me.
  • I only want to work on age-appropriate independent living skills.
  • I like having staff members who are younger, as they feel more like friends, not moms.
  • I find it more rewarding spending time with spellers who are open enough to have discussions with me.
  • I enjoy mentoring and spending time with new spellers in brief social situations, but don’t feel that it would make for an ideal living arrangement.
  • I like to have choice in my activities, I don’t think I would like following a set program.

I have spent many years thinking about what would be right for me. It wasn’t until recently that I could envision it a bit. I advise all parents to talk to their disabled children about what they would like for their futures. It is likely they have some idea of what they want. It is important that they have an equal say. It is a lifelong decision that ultimately impacts them the most.



  1. Mitchell, you know a lot of things that will work for you. You have great insight into your needs. The right thing will unfold as you all find the path that is best. You always have. If you can envision it, you can make it happen. This summer come and visit our home and hang out with Carlos a bit. Walk along the lake, have a chat. See what you think.


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