What is after exhaustion?

Now that we are midway through the Marcus feeding program, here are my random thoughts:

-Overall, I am pleased with the program.  I do have problems with the 'baby step' approach.  Perhaps, that is why my child was not eating a diversified diet.  I couldn't take things THAT SLOWLY.  But, my picky eater is now eating SIXTEEN NEW FOODS. 

-My big man is eating foods at a puréed texture.  This bothers me, as there is no reason for him to have gone back to what amounts to baby food.  There are no problems with the mechanics of his mouth to suggest that this is all he could handle.  I feel that they should have pushed texture a little harder in the beginning.

-Kiddo is now feeding himself, using a metal spoon just like the ones we have at home.  This is such an accomplishment since he hasn't touched a utensil in about 9 years.

-They said that the program was intense for the kids.  No one warned me about the toll it would take on me.  I am up between 4 and 4:30 every morning.  My mother made a great analogy- it is like being at the hospital with someone all day. I'm 'on' all day long.  The emotional stress leads to pure exhaustion on my part.

-Feedings take 40 minutes.  Prep for each puréed food takes anywhere from 15 to 30 minutes a piece, including the blender cleanup after each one.  I had to feed Spencer 4 protocol meals this weekend.  I thought I would never leave the kitchen.  If I wasn't prepping, I was feeding, or cleaning. It was 11:30am on Saturday before I figured out that I hadn't fed myself.  Nor did I manage to cook anything for anyone else this weekend.  

-The traffic to and from Atlanta is possibly the worst thing imaginable.  It is not just the sheer number of cars on the road that bothers me, it is the number of automotive kamikaze drivers.  Oh look, there is my exit, let me just cross over three lanes of traffic WITHOUT LOOKING.  Yep, this occurs pretty much daily.

-Getting ready for our first session of the day- I'm outta here!!

Food

I am from South Louisiana where food is king.  Seriously.  I have lived in a few Southern states, but no where I have lived has come close to the New Orleans obsession with food.  Perhaps it is because there is such an abundance of delicious food available from seafood to the finest ethnic food.  We are not talking just French or Cajun cuisine.  Great Vietnamese, Chinese, Thai, Cuban, Afro-Cuban, Italian, etc can be found in the city and the surrounding suburbs.  We define seasons as crawfish season, King cake season, and snowball season.  Food is the underlying glue that binds community together.  Every get together is an opportunity to eat and share good times with friends.  So, it really threw me for a loop when my autistic son became extremely picky about what he would eat.  By extremely picky, I mean 4 foods.  Yep FOUR foods. Of course they were not the most nutritious ones available.  Hoagie rolls, pepperoni, Strawberry pop tarts and goldfish crackers.  That is it.  

So it really should have come as no surprise when he contracted a vitamin deficiency and had to be hospitalized.  But it took a while to get the correct diagnosis.  The little guy started limping, so my natural assumption was that he had injured his ankle.  We brought him to the hospital and got X-rays, but they couldn't find anything.  They thought that perhaps he had suffered a sprain and to keep an eye on it.  Not only did it get worse, but then it moved into his other leg.  He could not bear weight with either leg.  So, we took the trek to the children's hospital. After additional x-rays, numerous blood tests, an MRI and the suggestion of my dad, he was finally diagnosed with scurvy. This is not something that is generally encountered in first world countries. Because of this, we were referred to the feeding program at the Marcus Autism Center as an emergency case. The wait list is very long to get in the program and even with our emergency referral, it still took three months to get in. Unfortunately, due to personal circumstances, we weren't able to start at the end of October. We started the program on Tuesday, January 26. 

So far, we have been pretty successful. My eleven year old is now eating 16 additional foods. The only downside is that they are at a puréed texture. (Like baby food) I, of course, wanted to jump ahead to table texture because he eats normal textured foods all day long. They did a texture assessment and my kid spit out every bite. I knew he was making a game of it when he took some from his lap, placed it in his mouth, and then spit it out over his shoulder. It took all the patience I had not to beat on the one way glass and fuss at him. How stubborn is my child. It took 193 spoonfuls of food at table texture before he chewed and swallowed the bite. We are now halfway through the program and I am hoping to increase texture before the end of the next four weeks. Wish us luck!!