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.”
I think a model of a campus type setting similar to the Stewart School. They believe in learning throughout the lifespan, all the activities are so organic when they are done within the setting rather than searching for activities outside of the community. Having a community that has teachers, therapists, friends, social opportunities throughout the day and special events planned that they can partake in all the planning of and watching it all come to fruition. Religion for those that want it. I suppose it sounds counter to the inclusion model that is always sought out especially when our kids are younger and in school. I just feel that my children need to be with people that are similar to them. Isn’t that what we all seek as typical adults? Maybe I rambled, but you get the jist of it.
Love the Stewart Home School!
Is this thread still open? I love some of the ideas here. This is definitely a conversation that needs to continue. My 32 year old son has been in “The System” for 10 years now and it is clearly not working. I am in the process of starting a “conversation” with parents of older children in my area. The challenge is finding them…HIPPA regulations make it virtually impossible for me to get the word out. I know of a handful of these parents and we’ve already started the conversation and we’re on the same page… None of us wants to ever go back to the dark days of dungeon-like facilities of yesteryear, however the pendulum has swung too far in the opposite direction…not enough structure or monitoring…having to live a life based on different agency’s opinions, and conditions…and too much “freedom” for some of our kids which they are just not prepared for. And while natural community supports would be a dream come true in an ideal world, it takes a tremendous amount of work to get them going and keep them going, if at all. And don’t we all know that MONEY is the major factor. Please keep the conversation going…I think we’re on to something!
I’ didn’t intend to be annonymous…my name is Gayle Elliot and I live in Maine!
Can we have the island??? Please?????
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I just told you my idea this weekend! 😉
I heard you P! Just got the tweet last night!
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As a parent of a 36 year old adult I can tell you this is complex question because each of our children and especially adults have different needs. Some of our adult population work in the
community and some need structured day programs. Some will always need support and others are more independent. Also, some have no other financial income other than SSI. I would be willing to discuss this in detail if it would be helpful. You can message me.
Oh, and my dream would be for unlimited funding to make all the other dreams come true!
I wish for a place like Stewart Home School but closer to where we live. I don’t want to move and I don’t want my kids to be so far away from me that I can’t visit whenever I want
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Reality is complicated, dreams aren’t 🙂
@Tiffany that was my first thought too. My second choice is that Jacob will find a home with a family who loves him like we do the way we provide one for Kayla….who I can’t believe is 24 next month!
I have the same dream as Paula!
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
it wouldn’t let me go back definitely you would need staff there therapist teachers AIDSto help the donutsadults
Where is thus Stewart ?? Is it for only FX or all kinds of special needs ??
Hey Melissa, I need to introduce you to my friend Lisa Kearney, she’s also developing a program for adults. She’s part of Autism Speaks and has a son Ryan who is 16.
Stewart Home School is in Kentucky, Kimberly! It is open for all types of disabilities but they do have several fragile X residents.
Thanks !! I don’t think we have any thing like this in ca . Most homes I here at hit and miss 🙁 , very worried … but have to have a back up plan , out older child won’t to take care of Gabe but we worry about her life and what will make her happy.
What’s Paula’s dream you all keep talking about?
Melissa, agreed. There was a women near where I live who talked several years ago about starting a program for adults with special needs on a ranch she’d inherited. She and her husband live(d?) on about 40 acres themselves with their 2 sons, one unaffected and one full mutation fxs and then her husband’s grandparents died leaving their 40ish acre ranch to their grandchildren, none of whom were interested so she and get husband jumped on it with this idea. I have lost touch with her but plan to attempt to reconnect soon. I don’t know if that idea still exists for her and get husband but I know we all were very excited about the prospect of something like that in our own backyard practically. The idea was to have horses for riding and taking care of, plus chickens for eggs, cows for milk, Butter, cream, and possibly even cheese, maybe pigs and then to also grow cross of fruits and vegetables. Then they would be somewhat self sufficient in raising and growing their own food for their own consumption, everyone in residence would learn to tend to tend animals and crops as well as how to prepare food, and any excess they could have a stand at the local farmers markets or just on the road near their Ranch which is extremely common here in order to make a little extra money to help pay for fertilizers, soil nutrient additives, seeds, vet bills for the animals. All food grown organically without synthetic chemicals. There would be a staff that lived on the property to care for things that the residents were unable to amd also to monitor and supervise the residents. It was initially propped that out would be all male because it would be small and to avoid any issues between the male and female population but that was still up for discussion. All of us mom’s at the time were thrilled with the whole idea. This mom had experience in special education as a teacher and had home schooled her fx son for several years when the school system failed them. She is kind and caring and patient and would have been the perfect person to start it all. My patents promised to contribute financially if she and her husband actually went ahead with it as well. My dad had a sister with downs who was sent away to live in a “school” at about 4 years old and it devastated him to essentially lose his only sister. They only saw her a couple of times per year. He knows I don’t want to have to send my boys far away and ifi were to send them to a place like Stewart Home School that I’d have to move near there because it would kill me not to be able to see them as often as possible. And we’ve lived here in Visalia for most of my life and David’s. Jonathan was born here and had never lived anywhere else. So that’s my dream. There are a huge number of wonderful day programs in my area but live in programs that would meet my boys’ needs not so much. Maybe I’ll end up with them staying at home with me forever but I want to low the options are there if the best thing for them is to move out of my house. The ranch idea would allow them independence in a safe setting with continuing education included plus the satisfaction of self reliance amd team work. (She was not keen on raising their own animals for meat but that would be their only main staple they would purchase and not grow.) So there’s my dream. It’s entirely possible but so far it hasn’t developed beyond an idea that I’m are of. (My dad also loves the idea because he grew up on a farm and knows what it takes but also knows the satisfaction of hard work.)
Kimberly Schulte, I Love in Visalia, just south of Fresno, in the Central Valley. I have a friend whose Daugherty with fx had been placed in a residential home in Bakersfield for about 20 years and they have been very happy with it but I don’t know if many places in California like that. We have a number of group homes in Tulare County but most are very small and basic. They are usually housed in what was once a single family home so there’s only 5-10 residents and they are mixed genders, shared rooms and just not what I’d look for for my kids.
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)
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Good Tiffany Pace to know , I do know Nevada, California has some good homes or good adult programs
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.
@BasicallyFX you are absolutely fantastic. Thank you thank you!
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RE: types of activities – a wide spectrum of options!! music, art, basketball, bowling, horseback riding, gardening, etc. Doesn’t have to all be on the campus, but something set up for access to many different options to keep things interesting.
Paula Di Fabio Fasciano we need to chat! Chris and I visited a few some years ago and got some great ideas just in case we had to go that route. We love the life they have now, but a community is a really nice lifestyle.
Silly Cindi! I’m just giving you a breather from my mania while I figure out the “college” step…..no worries…I’m coming to visit to talk this one through! 😉
Ahhhhhhh….ok then…..I make notes until we can be together <3
RT @BasicallyFX: I’m going to ask you a big question.: http://t.co/D5ks4GEVvv #fragileX @rachg4
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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.