If you build it, we will come.
As my child, and we, get older, I’ve been thinking a lot about our living arrangement in the future. I wrestle with wanting her to live with us forever but knowing we won’t live forever. I see and feel the cumulative effect that years of care-giving, including regular, significant sleep deprivation, has had on us. I know that it would be good for her and us to have some separation, some distance, in the same way our son, who is going off to college in the Fall, will have.
In a perfect world, there would be many options from which a family could choose. But what I see “out there in the community” now is far from perfect with very few options available for a large group of soon-to-be young adults with autism.
When I’m up in the wee hours of the morning, the questions haunt me. Where will she go? Will she not have a choice and end up in some other part of the state where we’ll have to choose between moving to be closer to her or seeing her infrequently due to our need to work until we’re 82? Will she understand why she isn’t living with us anymore? Will she think we’ve abandoned her?
Who will care for her? Will they be good to her? Will they “get her”? How long will it take for them to know that when she takes the milk and butter out of the fridge, she’s asking for Annie’s mac and cheese? Will they try and get her to sleep with her head at the head of the bed rather than the foot of the bed where she has comfortably slept for years now?
For a long time now, I have had this picture of, for lack of a better word, a village, where families of kids on the spectrum live. It’s a quiet urban space filled with lots of greenery . . .
One day I was talking with fellow parent, Tricia Elsner, about this topic and she and I had a lively discussion about what could be. We decided to take it to a support group of fellow parents whose children have significant behavioral challenges.
We began with this premise: Pretend that money is no object. That land is available. Let your imagination run wild. In a perfect world, how do you envision an optimal living arrangement for your child?
While we all had our own preferences about what this place would look like, it wasn’t surprising that we agreed on the vast majority of things. Here’s what we came up with . . .
Since we’re all city people, we decided we want to be in the city rather than a rural area. An urban, park-like space is what came to mind. However, the suggestion by one mom of living on our own island did sound appealing to many! We want to be on bus lines and within walking distance of community places such as stores and parks.
We want simple, affordable individual single-family homes (designed with our kids in mind) rather than one large structure such as an apartment or condo building. These could be townhomes or cottages – not tiny but not McMansions either. And each can have its own personality – no cookie-cutter homes or restrictions on what color you paint your home! If you want Thomas on your front door, so be it!
The key features we agreed upon dealt with safety, convenience, privacy, dignity independence and fun. If you are a parent of a child with autism, you won’t need an explanation for most of these:
- Soundproofing in all living areas
- Fully gated with additional safety-features throughout
- Central Air Conditioning and Heat throughout
- Lots of greenery with low-to-the-ground trees to climb
- Outdoor play equipment such as swings and slides
- High tech capabilities for all spaces, such as super-sonic fast internet service that never fails! But just in case . . .
- IT assistance at the click of a mouse
- Adequate back-up generators for power-outages
- Crisis intervention/rapid response behavior team on call
- 24-7 staffing tailored to each family’s needs
- Large passenger community van for group outings and appointments
- Services for parents who are aging themselves and may need more help one day
- Guest quarters for out-of-town guests who want to be close by during a visit
In our village, we also picture community-gathering places such as:
- Community Dining Area with free coffee all day long, meals and snacks available should you not feel like cooking on any given day, and oh – a ketchup fountain (our collective imagination got away from us) along with menus for all types of special diets.
- Community Leisure Areas, including swimming pool complete with lazy river and waterfall features, sensory-seeking delights throughout such as ceiling fans and walls with various textures, a built-in-the-floor trampoline, mega movie screen, open space to run and ride bikes in rainy weather.
- Retail and Professional Space available for lease to those who have products and services geared toward our families.
- Additional Housing, including separate respite quarters for parents who need a break for a night or longer, and living units for home care assistants that could be rented.
Programs and Services, including:
- Educational classes for all
- Skill training for all
- Leisure/fun/health opportunities for all
- Counseling and support groups for parents (some parents requested that Lynn be on call 24-7. Sure, said Lynn.)
What else did we discuss?
We were open to families who do not have kids with autism living in this community. The point isn’t to isolate or segregate. It’s more a “birds of a feather” kind of situation that it would be nice to live amongst others who “get it”.
Some parents wanted the option of being in the same village but in distinct living quarters than their child, particularly for those who are getting to be young adults. Perhaps some young adults would want to live together at some point.
Is it Possible?
Perhaps I missed it but I couldn’t find anything that currently exists that even closely resembled our village. One dad commented that what we described sounds much like retirement/assisted living communities for seniors. Having worked in this field, I do recall that older people with developmental disabilities mostly were not welcomed in communities designed for seniors.
Maybe it sounds fairy-tale-like to even dream about such a place but why shouldn’t we dream about what we hope for with our kids? Maybe there are others out there who think like we do and have the means to make this a reality. Maybe you are one of these people reading this right now. Maybe you could make a difference in the lives of many.
Just maybe . . . if you build it, we will come. Give us a call or send us a post!
Here are some links to some communities I did find online:
Thanks to our wonderful group of parents for daring to dream big! Thanks Tricia, Amanda, Jamie, Heidi, Janice, Joy, Erik, Melanie, Katrina, and Diane!