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Tuesday, May 10, 2011

A Family in Need




Autism and Oughtisms is asking for families (and therapists) with some experience with food issues (extreme issues) to offer some guidance to this family.

Here's her post (with permission):

There is a local story that is causing a lot of discussion about bad parenting, special needs, and nutrition. There is a 20-year-old man, who has essentially only eaten KFC skin, and more recently also fish batter, for the past 12 years (since he was eight years old). He has cerebral palsy and autistic-like traits, as a result of oxygen deprivation at birth. He functions around the age of a two or three-year old.
His family has taken their story to the press. They are asking for advice from people who have been through similar situations, or professionals who might have new advice.
You can watch the full video here. Please do watch it all, it’s less than seven minutes long. If it won’t let you view it (I’ve heard that some people have struggled to view it), please let me know and I’ll add more details to this post. I just thought it best to let the parents tell it in their own words as much as possible. I am still searching for a version that I can embed to this post.
The main reason for me sharing this, is a plea to my autism community to offer up help to this family if you can. Like me, many of you have struggled with the eating difficulties that come with autistic children. You’ll need to watch the video to understand the challenges, what they’ve tried so far, and indeed to fully appreciate the desperation these loving parents have to find a solution to this harmful problem.
I’m also sharing this story with a deep sadness, having seen the horribly predictable reactions of the public to their plight. On this discussion thread alone, you’ll see people attacking their parenting, saying intellectual disability is no excuse, even saying that what is happening is a form of child abuse. These parents take the drastic step of reaching out publicly for help – exposing their story and themselves – and they get attacked for their honesty. It’s those sorts of reactions that stop parents asking for help. And it’s those sorts of reactions that drive home how important autism awareness is, and how far we have to go.
So please, if you can help this family with new advice, or support them somehow through this problem and the attacks they’re currently suffering, then do. If you want to email the program that run the story to get your message to the family, their email iscloseup@tvnz.co.nz.
If you want to try to talk to the dad directly – on the off-chance he’s still monitoring the thread – he has popped his head in on the discussion happening here. He’s posting under the name harepeka.
Please do share this story with others who might be able to help too. Thank you xx


5 comments:

kathleen said...

Hi, I contacted the person who created this site
http://www.theeatinggame.ca/
I don't know much about her program-I alerted her to this post..and am hoping maybe she will have some support/advice. I will also go to the thread the dad is on and let him know.

kathleen said...

wouldn't let me on to comment.I am hoping he checks in here..:)

autismandoughtisms said...

I will post your comment there for you kathleen, with a link back to this post too so he can see follow up comments.

Nancy said...

I sent an email to the tvnz address in this post. My son had similar, although not as severe problems. Occupational therapy for oral motor and feeding was a godsend. My son basically wasn't using his tongue to guide the food when he chewed. He also was using a vertical chew rather than a rotary chew. If you pay attention, people chew kind of in a circle. My son was chewing like a puppet, with very little tongue movement. So his food was pretty much just falling down his throat, making him gag. She had me try to eat rice like this once and it totally made me gag. You also use your lips and cheeks when you chew. If you're not using those properly, it also causes problems. My son's feeding therapy consisted of oral motor exercises and Wilbarger brushing. No forcing. No conflict. No anger. It was amazing. He was trying new foods after two weeks. Done with feeding therapy after 2-3 months. Stunned. Just as a mom who has been through this, watching the video I see things that make me think that this type of therapy would be helpful for this young man. If you watch him eat, his tongue definitely isn't moving properly. You can also see his lips are very lax. If you watch him chewing from the side, it looks like he might be chewing vertically rather than in a rotary fashion. More smashing the food than grinding it. I gave my email address to them and asked them to forward it to the family. Hopefully it will get to them.

Jean Nicol said...

It would be very exciting if The Eating Game could help this family so I will try to contact them to get some more information so we can plan how to introduce it to hope for success.
However, I agree with Nancy and would hope an OT could assess his chewing and make needed recommendations first. If mom or dad are reading this comment please try to contact me, Jean Nicol, on facebook at http://www.facebook.com/profile.php?id=1677576692#!/jean.nicol1 or through my website http://www.theeatinggame.ca

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