Where will they live when they can't live at home any more?

If you need to choose a community for your developmentally disabled adult child, or if you expect that this is something you’ll be doing in the future – what would you be looking for? Would you join other parents in creating the place you envision? Last month I visited Kishorit, a kibbutz in Israel for developmentally disabled adults, and it made me think.

I had been to a couple of other rural communities for developmentally disabled adults, and found myself creating a little list in my mind: a place like that needs to be pleasant. The residents need to be respected. I want to look around and see people seem happy, active, satisfied. But what does that take? Obviously, different individuals have different needs and not every community suits every individual. However, one issue that I find very interesting is the question of structured day plans versus catering to individual differences. 

Let me tell you about Kishorit. First of all, a kibbutz is a communal village, in which the resources and the work are shared by the community members. In this particular one, any funds that are raised, any money generated from their various enterprises, is shared by all members of the community. The members of this kibbutz, with very few exceptions, are developmentally disabled.

A foundational principle of Kishorit is to provide choices:

- A resident may choose to live alone, with a roommate or with a partner.

- A resident may choose to live in the village or in the nearby town (in which case prepared food will be delivered, or if they care to cook, food products will be delivered).

- A resident can choose to work with the goats, the chicken, the horses, at the dog kennel, the organic garden, the grape vines, the toy factory. A few work or volunteer at other locations, but the village is home.

- A resident can choose to take advantage of holistic therapies or conventional medicine, or both.

- A resident can choose to dine at the general dining hall, or in the nearby one where meals tailor-made to his or her diet are being served. And like all of us, the dieting resident can choose to cheat on their diet and eat something else altogether

- Drivers regularly go into town, and residents can choose to go and spend a few hours there.

- Leisure activities are varied, again - with individual choices. 

In this community the support team, for the most part, doesn’t live in the village. There’s always someone to turn to, but the social workers, and staff who guide those working on the farm and in the factory and in the communal kitchen etc. leave at the end of the work day. In other places that I’ve seen this is not the case.

Why did I say that all this made me think? Because other residential communities have other principles which may or may not sit well with you:

-         In some places the day is very structured, and fewer choices for work or leisure activities are available

-         In some places there is no choice between living alone or living with another

-         In some places having a partner, which also may mean having sex, is not allowed.

Thinking about this brings up another question, which is – can something similar be done in an urban setting? Is it possible to have a community that offers a place to live, support when needed, a dining hall serving regular, healthy meals, meaningful employment? Please do share your thoughts.

What does driving have to do with neurodevelopment?

Oh, quite a bit. If you've ever tried to teach or guide a new driver, especially one who struggled with learning, you may have noticed some of the following challenges. Or perhaps you've experienced them yourself. These challenges may or may not be eased much if the relevant neurodevelopmental systems are not supported.  

1. A difficulty telling right from left. Following directions can be really hard when you can't tell which one's which. I'll call this a challenge with laterality. This becomes way trickier when you're trying to drive in reverse, say, for parallel parking. 

2. A difficulty maintaining a rather constant distance from the other cars on the freeway. This may fall under proprioceptive awareness. Here's where I'd also list the stepping on the correct foot pedal (gas/brakes). And sorting out whether or not the vehicle you're driving can fit in the space you're hoping to occupy with it. 

3. A difficulty alternating between focusing on the road and peeking at the speedometer. We'll put this under eye teaming. A difficulty with eye teaming can make you feel rather insecure regarding where a particular object (say, someone's car) is actually placed. And the whole environment may seem flat rather than in 3D. Speaking of visual function - does the movement of the scenery to your sides make you dizzy? Are you overwhelmed by headlights you're facing, or by quick changes of lights and shadow? Do you have enough night vision to see your way?

4. A difficulty turning the head without following it with the hands. Let's call this one differentiation of movement. This is also relevant when you're startled: can you keep it all together, or do you respond with your whole body (not good. But yes, once in a while you'll be startled).

5. A difficulty coordinating what the right side of the body is doing with what the left side is doing (shifting gears would be one example; stepping on the pedal with the correct foot is another). This may fall under interhemispheric integration.

These are of course just a few of the possible problems. And they can all be eased, at any age, by supporting the underlying challenged systems.

If you're helping a new driver and getting the impression that he or she has no idea what the other drivers are up to, you can help by "thinking aloud" as you model driving. "That driver doesn't seem to be slowing down", "He's been signaling to the left for several minutes; he may have just forgotten to stop signaling", "I need to turn right in a couple of blocks, so I'll start working on moving to the right lane carefully." 

Would you add your own experience as a comment?

What to do if you're tired of your program

You've been working on your program of activities for, say, weeks, or months, and you feel burnt out. Yes, you felt that your program was good for you, but you're bored, or resentful for having to work on getting better in the first place, or tired of not reaching your goals yet. So now what? 

Here are a few thoughts, some of which may work for you.

1. Accept yourself and your feelings. You're not the first or the last who feels like this, and it's okay. Feeling guilty or beating up on yourself will just make you feel worse and add to your stress. 
2. Consider taking a break from your program altogether. But rather than just letting all your work so far fizzle, make a decision in advance about the length of your break. Do you need a week? A month? Until after the holidays? Set a date in your calendar to return to your program. 
3. Consider shortening your program for a period of time. Even if it was a 10-minute-a-day program, make it shorter. One way to do it is to rotate between activities. The ones you didn't do today can be the ones you start with tomorrow. Another way to do it is to choose a few, and stick with them. My experience has been that if the activities you stick with are ones that specifically address the vestibular system, you may even make progress if this is all you do. The vestibular system supports the sense of body-in-space, and muscle tone, and visual function, and your general sense of safety in the world, as well as other parts of the nervous system. If I had to pick one system to support, this would be the one.
4. If you've been doing your activities 7 days a week, you can give yourself a break by practicing 5 days and taking two days a week off. And no, I'm not going to suggest that if you were practicing 5 days a week you bring it down to three. In this case you may as well take a complete break and rest from your program altogether.
5. If you've used other activities earlier in your program of self-help, think of those as your "tool box". If what you need is just to freshen up your daily program, return to some of the activities which you liked in the past, and take a break from those that you're tired of doing right now. 
6. Better yet, get together with your practitioner and challenge her or him to replace the activities that you don't care to continue. 

Your challenge may be different - perhaps the program you're following is not for yourself at all, but for your child or someone else you are helping. And that daily repetition can be tiring. If the person you're caring for is the one who needs the break, then all the suggestions above are relevant just the same. But if the person you're helping wishes to continue while you are the one who is burnt out, try to get help. Recruit, if possible, a family member, a roommate, a friend, a volunteer, who can come in more or less regularly and relieve you of some of your caregiving responsibilities, including, specifically, the program of activities that you're tired of following. And make a point of taking care of yourself.

Food and Behavior: A natural connection, by Barbara Reed Stitt

Does food have anything to do with "brain fog", rage, hyperactivity, violence, depression, nervousness, delinquency and a host of other behaviors or psychiatric symptoms? Well, yes. Often the culprit is sugar, but a junk-food based diet can lead to other imbalances. Reed Stitt worked as chief probation officer in her town in Ohio and addressed the challenges of thousands of probationers by exploring whether they suffered from malnutrition, and then modifying their diet. The results were often very dramatic. 

Her book generously offers some of the questionnaires that she'd used, as well as dietary recommendations, and of course stories of some of the people who changed their lives around. I found it a very worthwhile read - and felt that it offered hope and non-judgment. 

What do you tell the kids?

I recently read the book As Long As I Live: The Life Story of Aharon Margalit by Moshe Gutman and Ruth Lewis. A fascinating, inspiring book (Thank you, Raisel, for your gift) describing how Margalit maintained his love of life and optimism through battles with polio, severe stuttering and cancer. There’s one part of the book that I found particularly interesting, which dealt with the question of what to tell his family, and specifically the kids. Facing scary diagnoses and medical interventions, he grapples with the question of whether to share this information with his children and grandchildren, whether to keep it secret – to protect them – and whether keeping all this secret would actually leave them feeling alienated and distanced while costing him a tremendous amount of energy that he couldn’t spare. He chooses to ask his sons and daughters how much they actually want to know, and he gathers all his grandchildren – all of them under 13 – for a conversation, preparing them for a period of time in which he’d look different and feel different, and welcoming their questions. I’d love to know what you think of this approach.