Bloggidy Blog Blog

My inspiration to create a blog has come about recently. My overloaded husband is taking 27 hours this summer, and so, I am a little less than enthused to sit on the couch all night. I am. Plus, I recently read in a report that bloggers tend to be less stressed out than the rest of America because they are able to channel their slash-your-tires thoughts onto a blog. At least, that is what I remember.

And now, two hours after I began creating this blog, here I am. Technical difficulties, and I consider myself somewhat of a computer mini-guru.

My day has been exhausting, but what day isn't? I finally have almost gotten rid of the headache I had all day. I was lucky enough to sit in trainings for three hours today.

I work in a day treatment facility for special needs children, which can be so rewarding and so hard at the same time. Today was my day to do Feeding Therapy with a 3 year old boy with autism. If you live on this earth and pay any attention at all, you most likely know what autism is, but you may not know the extreme feeding difficulties that children with autism may or may not have.

Most of my kiddos that I follow (which in number...approximately 400 special needs children) that have autism do have a mild to severe feeding disorder. Many are on a GFCF diet (gluten free, casein free) which I plan for each clinic and train each cook to execute. Many have severe feeding aversions which can arise from an endless array of possibilities. Usually, texture difficulties that are not 100% specific to autism, but very hard to deal with.

I, along with this child's Speech Therapist, Occupational Therapist, Mental Health Professional, and classroom teachers, have worked endlessly with Feeding Therapy daily to try to introduce him to new foods. We have specific instructions from a local Feeding Behavioral Specialist (an MD at Children's Hospital) on how to introduce foods to him, and we have tried a variety of our own techniques as well. His progress has been...nil. Some days we get so excited and then we go three weeks without seeing any progress.

Today when I sat down with him he was already crying, knowing lunch was coming. As soon as I tried to introduce a piece of hamburger patty, he immediatey threw his arms over his face in the ultimate shielding position and turned his head. I somehow got him to open for three bites of meat, but the rest was awful. He was more resistant than I've ever seen him, resistant to "touch, lick, taste" the pineapple or mashed potatoes (FYI...I use Kay Toomey's "Steps of Eating" program that I learned of at a conference given by Elizabeth Strickland, MS, RD, LD).

After only a few minutes, I gave up, realizing that this child was seriously upset today for some reason. I ran into his MHP a few minutes later and we discussed what had happened. She asked if I heard what happened this morning, and I said that I had heard he threw up. I wasn't too concerned about this...many of our kids throw up for random reasons during the day. After a few minutes of talking with her, I learned that another staff member (who's name and profession will go unnamed) FORCED him to eat a waffle that morning, resulting in him throwing up all over his clothes and regressing dramatically in the feeding progress we had made.

My heart hurts for this child and for all other children with feeding issues that people do this to. Please please please, never force a child to eat if they have a feeding disorder!! Actually, never force a child to eat, period!! We are in a new era of thinking. We have so much research on feeding disorders with autism and PDD as well as with premature children, but we still have uneducated people out there that believe since they raised two children of their own this way, it will work for every child.

I see this a lot with grandparents, who don't understand what we have learned about feeding disorders, along with uneducated parents/staff members who feel that this is strictly behavioral. True, there are many behaviors that go along with a feeding problem...but we need to address those separately.

So, needess to say...I had a hard, upsetting day because of this revelation. I did report this incident and I can only hope something gets done about it. But for now, I will hope that the months of Feeding Therapy we have been doing is not all lost because of one blind, uneducated incident.

And this is the end of my first blog. I'm sure for many of you this is utterly BORING...but for many of you with interest in these issues, it may be very intriguing and maybe you can offer some type of advice.

Romans 12:21
"Be not overcome with evil, but overcome evil with good."


Daniel & Becky Pieroni said...

I recently started blogging as well, but I've been slacking lately. It's so nice to see other professions feeding the clients as well. I feel your pain with having to back track on everything you've worked for. I deal with the other spectrum of population, the elderly patients with dementia. Some people just don't understand how to follow specific instructions laid out for them to follow. It really is bothersome when you stand outside the door to observe and make sure they're following the steps they need to follow and they try to feed a patient a grand total of 3 times and take the tray and walk out of the room only for the patient to continue to lose weight...hmm....wonder why? I'm sure you're doing a wonderful job and he'll keep making progress even though some days it feels as if it will never happen. Oh the joys of working with autism. While I was at "your site" everyone had nothing but wonderful things to say about you! Sounds to me as if you're doing everything within your reach for your clients!

Jessica's Blogs said...

Hey, Danya, this is the first time I've seen your blog. I would recommend a book, Educate Toward Recovery, by Robert Schramm. I recommend it to everyone, but especially people who deal with children with autism. He's a behavior analyst, and it's the best book on autism I've ever read. As you said, there's more going on with feeding issues, but this book goes through behavioral techniques that will amaze you in dealing with any situation. I have the book, but I've loaned it out - I can let you read it once I get it back if you want.