Invisible Chronic Illness Awareness Week –Part 3

One of the invisible chronic illnesses a member of my family has, in this case my son who turns 27 on election day) has is autism.  He lives with us and unfortunately has been unemployed, except for brief paid positions and volunteer positions that are short in terms of hours and frequency for almost 2 years.  One thing vital to the success of a person with autism (ASD–autism spectrum disorder is a shorter way to include all with this disorder which has a wide range of compromises) is structure.  Our son has been lacking in structure for this time period.  I could do it when he was a child, but he doesn’t listen and obey like he did back then, he’s not that compromised.  Asperger’s Disorder is at the highest functioning end of the spectrum, so close to neurologically typical that it is sometimes not diagnosed till teen years or even adulthood.  Our son is high functioning, but not that high.  The other end of the spectrum has the severely compromised who are usually non-verbal even as adults and have many traits typical to autism but definitely, by no means,  neurologically typical.

People with ASD typically appear completely typical if you see them for a relatively brief time, that is to say their physical appearance isn’t distinctive in a way Down’s Syndrome, for example, is.  Unless the person in question has what is called co-morbid diagnoses with one being physically manifested and hence, not invisible.  So people look at us rather strangely when this prematurely balding (like father like son) man in his late 20s has to depend on his parents to the extent our son does.  We are conservators, for example, so he gets a disability stipend but we have to write his checks; he cannot do that.

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

Living this way is frustrating but also has given me rewards I would never have received otherwise.  I have learned so much about how the brain and nervous system work; how the senses are involved and can be re-taught more acceptable and more accepting ways than otherwise are present.  For example, many can only tolerate certain clothing, foods, textures of anything, etc.  Our son was an extreme in sensory issues when it came to food.  A doctor specializing in autism saw him when he was eating, maybe, 3 foods.  We had our son in a therapeutic day school and this doctor didn’t need to see him again, but started working one day a week at the school and remembered, due to severity, our son’s aversion to most foods.  He recognized both of us after probably 15 years, remembered and was amazed that by then we, with a lot of help, had him eating lasagna, as a matter of fact this multi-textured food (bet you never thought about that) was among his favorites.  One of our son’s doctors has to end his practice due to his own health issues, only giving 2 months notice and I e-mailed this specialist who is now a professor at UConn School of Medicine, asking for referrals.  He totally remembered us and gave us a name.

Monday had 3 appointments before 4:00. 4 if you count “visiting the vampire” as the doctor put it for blood draw to hopefully guide them to a determination of why my blood count is dropping and so am I, as in dropping suddenly to the floor.  Doesn’t that sound like fun?  So anyway, tomorrow is another busy day with an hour long appointment for our son 1.5 hrs. away (so 3 hours in the car if we’re lucky and there’s no construction, etc.)  And we go out to lunch since it’s that time of day, so tomorrow is basically shot.  Today I have to take him grocery shopping, think of a 6 year old pushing the carriage, (while he’s not typically that compromised in this area he is).  Tiring to put it mildly because it involves teaching how to read signs, (to find locations of items, coupons, etc.), unit pricing tags to determine how to get the most bang for his limited buck, etc. all from my wheelchair.  I can hardly wait–NOT–LOL.

Totally different topic, but Sunday I actually got some fall crafting done!!   Hopefully I’ll get it posted soon.  I even remembered to take pics.  You have no idea how surprising that is for me, lately especially.

I’d love to hear feedback for you on any topics. XOXO

janet

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About craftythriftydecoratingwifemom

I thank God for all the wondrous gifts he's given me daily. Reading many of your blogs has inspired me to get busy and stay busy doing things I used to enjoy and just fell away from. And you've given me courage to try new things I've never done before, things I'd have been afraid to try a few months ago. Thank you for your unknown contributions to this woman's life.
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2 Responses to Invisible Chronic Illness Awareness Week –Part 3

  1. Ray's Mom says:

    Lovely apron and story. Have a great week.

  2. Pingback: Invisible « Just Breathe: Slow Deep Breathes Positive Solutions for Living with Chronic Illness

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