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Sunday, September 26, 2010

Parents of adult children with disabilities need more guidance

Every time I think I've got this "autism mom" thing down I find there is something else I need to learn. Our latest challenge is insurance. Even though I work for a company that allows you to keep your disabled children on your insurance there is more to it that just signing up for the insurance. Twice recently we have received letters basically tell us one or both of the boys have been dumped from the insurance. This actually has nothing to do with my employer, but the insurance company themselves. Once this was initiated by a birthday then the next time due to the insurance company doing an internal audit. Like I already aluded this is not a nefarious attempt on my employers part to reduce costs. You see, I work for MHMR. There are a lot of employees, who also have children who have a disability. MHMR is implementing a system to try to avoid this happening again in the future, but at the moment one of the boys is still without private insurance. He does have medicaid, but since we have never used his medicaid he has never been established at a doctor's office that accepts it.

So this has me thinking what else is in our future that we don't know about? I've already become aware of programs that have waiting list years long. We should have put them on the waiting lists when they were little, but we didn't know these programs existed. My goal for the next year is to put together a list of resources parents of children who will disabled into adulthood should be accessing and a "to do" list of things the families should be doing to make sure their adult children have everything they need if their parent becomes unable to take care of them even for a short time. Please send anything you would like added to this list to sharon_rd@att.net.

Sunday, September 12, 2010

An Insightful Response from a Student

I wanted to share a response I received when I posted a question on Facebook. My question was what do Dietitians want to know about autism. When I received her response my immediate reaction was, she gets it! It's always exciting to me to meet someone who truly has made an effort and has develop an understanding of the challenges families with autism need to conquer. So with Sarah's permission, I hope you enjoy Sarah's response to me.

I noticed your status. I'd like to share a bit of my own tumultuous experience with you. Maybe it will help you know what kind of information would be useful to somebody who is expected to help a family but has no experience with autism...yet.

Nobody ever explained autism to me, I learned from experience when I was 14 or 15 years old. I'll never forget all the questions I had my first time volunteering for "Structured Athletics for Challenged Children." We were responsible for watching and feeding the kids as part of a health & fitness day camp program. I continued to volunteer for two years. I helped out with weekly events, summer camps, and a spring break day program. I grew to love those kids. I think about them almost every day.

What do dietitians need to know? They need to know that autism is not black and white; it is a spectrum. They also need to know that there is no one, objective algorithm of care for all autism cases. If you feel lost and like you have to feel your way around, then you're probably doing it right!

NCP (ADIME based on my limited experience with autism):

A-ssessment cannot be overemphasized here!
D-iagnoses will vary.
I-ntervention will involve much trial and error.
M-onitoring will require collaboration.
E-valuation will rely on high quality communication.

And the following:

1. Children: I had never even heard of autism until I found myself holding the hand of an autistic child and being told "he has autism - whatever happens, don't let go!". I said terrified, "what's autism?!!!!" The children I worked with never used words, so how could I adequately describe them using any? They chose to simply "show" me everything. A video would be a good way to really illustrate what autism is. I don't think it can be adequately appreciated without being seen in action.

2. Parents:

a) My oh my was there so much nutrition related superstition! I watched mothers argue vehemently about sugar, artificial sweeteners, random vegetables, and even water, referencing websites, magazine articles, and popular diet books. It was scary and overwhelming to listen to them argue.

b) Working with these parents is different from working with most parents. Drop expectations of what a normal family life is! Make no assumptions. On my first day I asked one of the mothers why she didn't work full time and she looked at me like I was crazy. After watching her son for a few more days, I totally understood why.

c) At first I thought that the parents were "high strung" and "paranoid" but after my first week I 100% understood where they were coming from. ***It is important to make sure that RDs are informed ahead of time about what the parents are going through. Otherwise the dietitian's first impression will be "these parents are CRAZY!!!" and perhaps even blame the child's difficulties on them.***

3. Eating:

a) I found that a huge issue was getting them to stay seated and focused on eating. It was not atypical for a child to be midway through a sandwich, really enjoying it, and then JUMP UP and RUN OFF excited about something totally random and completely unrelated! All we could do was laugh and try again.

b) It was a real struggle to get them to eat without feeling like I was force feeding them. I'm sure I'm not the only one who has felt confused about how to proceed when you know a child NEEDS food and IS hungry but just can't focus enough to finish chewing something.

c) Letting them go without eating enough meant dealing with more grumpy and violent behavior later on. Keeping them well fed seemed to keep them happy, even if they didn't seem that interested in food.

***

Despite the inability to communicate with them in any conventional manner, I found that the children with autism were very, very deep thinkers and feelers. I noticed patterns in their hand gripping and in the movements and sounds they made. Each child had their own interests and own way of telling me things. By letting THEM lead ME as often as possible, we had many of what I like to call "nonverbal adventures" and "silent exchanges."

Unfortunately, I think that most people lack the empathy and/or patience to accept these children for who and how they are. All they see is a child who doesn't respond, a child who must be "stupid." They don't realize the vast amount of processing that is going on inside this type of mind, and the high level of sensitivity, and the potential for painful over-stimulation.

Of course there was lots of drama no matter how much experience I had with any individual child with autism. I thought that all of the issues we encountered meant that I was doing a terrible job. But the parents explained to me that if nobody had a nervous breakdown and the kid wasn't injured or lost, then it's been a great day! And that caring for a child with autism - or even just feeding them - means letting go of all preconceived notions of what constitutes success and learning to roll with the punches!

Sorry for the length!

Sarah Ruth Hoffman