I’m going to ask you a big question.

This topic comes up over and over again amongst parents of children with special needs…what happens when they are no longer “children?” What happens when FBAs, evaluations and IEPs are behind us?

Some of us dream of an island far, far away from the rest of the world where we could just be with other fragile X families. Some of us dream of creating our own communities and some of us dream of our current communities being fully open, understanding and supportive of our children.

So I’m going to ask you this…if money were no object, what would your child’s adult life look like?

  • Where would they live?
  • Who would they live with?
  • Where would they work?
  • What kinds of activities would be open to them?
  • What kinds of services would be available?
  • What kinds of therapies would be available?

I’ve been contacted by someone who dreams of opening a program for adults with special needs and she wants to know what parents want. It can’t become reality until we dream it, so let’s help her out…

44 thoughts on “I’m going to ask you a big question.

  • February 12, 2014 at 4:10 pm

    Would love a home like setting. definitely wouldn’t need teachers therapist swimming horseback riding sport activities social activities and opportunities if you could hold a job transportation transportation 2 appointments b able to have their own room or 1 roommatewould like to be able to have possibly sleepover for families that live out of townwebcams can get live feedS to see what was going on in the compound if you want to call it that my son likes to walk away at times he is currently 14 and a half and we still have this problem and safety concerns with crossing streets hot water hot disheswould like to know what’s going on at all times excellent communication would be one important thing to an ongoing training support for staff so they don’t get frustrated with my child or any adult

    • February 12, 2014 at 4:11 pm

      it wouldn’t let me go back definitely you would need staff there therapist teachers AIDSto help the donutsadults

  • February 12, 2014 at 4:55 pm

    I have 5 sons. 3 have FX. They are 37, 30 and 21 and are so different. If tried the apartment with companions that a govt funded staffing organization sent. It was a nightmare!! We are now what is called self directed. We hire and fire our own staff. My son is back home. He is the 39 yr old. We are in Ga. Ideally I would like each son to have his own apt under the same roof with a “common area” so we could spend time together if any one of them would like. We are far from town. I am looking to move in close my work and stores movies and the city bus system. It’s all a work in progress and everyone will be situated and settled in case anything ever happens to me. I do know it’s just to difficult not being together and knowing that yes he is getting his meds and not missing any, he’s not laying in bed at night during a thunderstorm wishing he were with his family, that he has on a clean depends, deodorant, a clean mouth, shaved, teeth brushed, eating healthy, watching his salt and blood pressure, if his nails are trimmed or if he has an ingrown toe nail that he’s afraid to tell someone about. And then the condition of his apartment is a whole other worry. IAnd I stayed in top if things!! He stayed in an apt across the street from where I work. Before I moved him back home I would pick him up when I got off work and then drop him off in the morning at the apt where his companion would meet him. They would show up late and leave early (they still try it and it’s at our house). The state won’t let family be hired as staff so we are stuck with people that don’t love my son like family. We have had one guy that has been with us for 6 yrs but now he’s getting a little to comfortable (eating our food, spending my sons money, leaving to early and coming in to late). I WILL stop for now. If you havent gathered it yet I’m advocating for you to keep you son home under close supervision with people you trust (and even the ones you think you can trust may not be all that trustworthy)

  • February 12, 2014 at 6:54 pm

    I have had a plan for the past 10 years to build a center but have had no way to fund it. The center would be built around the needs of the handicapped but open to all. The center would have vocational training, recreational and permanent employment opportunities. I envision a place where everyone is welcome and respected and their talents are used. My hope is that friendships and acceptance would not only be developed and fostered but become the norm in our area. Should this becomes successful I would love to make it available in other areas. In addition I have a dream (and plan) of creating housing that would develop independence and create a sense of normalcy for the individual rather than living in a group home and living based on caregivers and “the systems” decisions on what their lives should be.

  • February 14, 2014 at 4:10 pm

    I would want to have my children to live with us, with access to a qualified, background check approved respite provider always available for help at our home when we need it, as often as we need it. For a job that provides consistency, encouragment for growth in their skills, and a place that communicates with us about their days, every day. For the ability to have them in recreactional programs with the respite provider. Be it swimming, baseball games, etc. Transportation to and from work, and if we the parents are unable to take them, to doctor visits. Access to professionals in the field of fragile x for on going care as my children age.


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