And I'm DONE

If you are looking for a happy, little, fluff piece to read this morning- THIS ISN'T IT.  I'm in a mood.  Granted, I've been in this mood for a couple of days now.  Tried venting to the hubster, but he is not getting it.  So, here goes, cyber-friends.

Little Bubba finished up with the Marcus Feeding Program at the end of March.  Since then, we have gone every other week for follow up visits.  We are still doing 'chew training'.  WTF? Seriously, we even went back to the beginning of chew training.  Didn't Einstein call the definition of insanity doing the same thing over and over and expecting a different result?  Little Bubba is over it.  And when he is done with something- HE IS DONE. You need to vary your approach. I guess part of my frustration stems from the fact that he doesn't have trouble chewing.  Nope, that is not why we were there.  Little Bubba fully masticates his food.  We were there because Little Bubba's diet led him to contract scurvy last year and he ended up in the hospital. So, the main goal was just to get him to eat a variety of foods, including fruits and veggies.  They didn't force the texture issue at that time, we just needed him to ingest these foods.

 With the help of his teacher, I've gotten him to accept crackers, waffles and peas at table texture.  I just presented them to him at his meal- boom, he ate them. We had to eliminate one of his protein sources (hot dogs) because he showed an overwhelming dislike for them.  I presented strawberry yogurt to him and now he has added that to his repertoire of foods.  So, in a month, I've gotten him to accept four foods at texture.  Me- 4; Marcus- 0.

I am not told what we are doing during his appointments at Marcus, I can guess by what I have to bring with me.  So, I was a little ticked off when I was told to bring in the foods he eats at table texture so they can observe.  YOU WANT TO WASTE AN APPOINTMENT TO WATCH HIM EAT? What really ticks me off is that I have offered to video a meal and send it to them.  They were supposed to introduce the yogurt to him in clinic- I got tired of waiting, so I did it myself.  I have voiced my concerns to them at every appointment, but it falls on deaf ears.  I feel like I am wasting my time going and forcing Little Bubba to endure the chew training for 40 minutes.  Then, they get all concerned when he acts up.  Well, gee, what do you expect from an autistic child who 1.) doesn't like the therapist working with him and 2.) doesn't like the chew training.  Seriously, they put a hollow tube in his mouth and tell him to take 1 bite.  They then remove the tube and praise him to high hell.  I think we are up to four chews now.  I think I would rather watch grass grow.  I'm bored, Little Bubba is bored.  I'm having a hard time sticking with the program.  We started this chew training bull back in March when he was still there for day treatment.  Three times a day for 5 days a week for 15 days and little progress was made.  I'm tired of fighting the traffic to Atlanta, disagreeing with the therapy, and then fighting my way back home.

I'm done, I'm over it.  And I think we are making better progress at home. Told Little Bubba Thursday that we were going to Marcus and he had a total meltdown.  He didn't want to go, he probably got the vibes that I didn't want to go, either.  So, I cancelled.

I feel better now.  Venting over...for now!

Where's the love?

I don't usually comment on current events, but I can't let this one go.  The public in general has been vilifying the mother involved in the Cleveland Zoo incident.  Let's take a step back and examine the facts, or lack thereof.

Just this morning, I read a Facebook rant where this guy was saying that parents need to get off their phones, stop taking selfies and watch their kids.  I agree.  However, I haven't seen any legitimate article to state that is what happened here.  There are tons of memes circulating that state the gorilla was watching the child better than the mother.  Again, I have seen no such facts.  Why are we so quick to judge?  Let's face it, we have all been there.  You are out with your toddler.  You stop to get something out of your 'battle bag' (the large tote bag you haul with you everywhere that contains toys, tissues, wet wipes, change of clothes and other necessities for toddler life)  You look up not 2 seconds later and your little escape artist has vanished.  You look left, then right.  Now you spot him/her doing the thing you just got finished telling them for the 40th time not to do.  What happened to the village?  Did no one see this child? One adult stepping forward could have made a difference.  

Seriously, when did we stop caring? Granted, there are people who wouldn't appreciate your involvement.  Get involved anyway.  Be a jerk.  Block the hole the kid is attempting to climb through, alert the parent to the child's activity.  Don't stage whisper, "I would never let my child do that." Yes, there are asshole parents out there.  Take the high road.  I assure you, the zoo did not want to kill Harambe (the gorilla), but we need to remember that the gorilla is an animal.  We cannot know what his intentions were toward the child.  If it were your child, how long would you want them to wait to make a decision?  The child was already in the enclosure for 10 minutes before the command came down. Can you imagine?  You are watching  a gorilla drag your child around for 10 minutes.  

That is enough heavy stuff for today.  I'm going to return to my fluff blogging soon enough, but I just had to get this off my chest!!

And we're done!

Our last day was actually Monday, but it was such a crazy day that I didn't  have the time nor the energy to blog.  Kiddo did a great job, but he was more than ready to leave. Although we leave with him at the purée texture, instead of at table texture, I need to remind myself of a few things.  I can want whatever, but the ultimate decider is kiddo.  He is in charge.  We need to go at HIS pace, not MINE.  Seriously, we went from 4 foods to 20-- in two months.  We've been trying for years to broaden his food choices, so this in and of itself is pretty miraculous.  Now, he becomes an outpatient and will be seen once every two weeks for follow up. We will continue to work on the chewing.  I really hate to put it that way, because he really doesn't have any problems with the mechanics of chewing.  It is more like exposure therapy.  We are exposing him to these foods at their proper texture.  He is getting a feel for them in his mouth and chewing to familiarize himself with the taste and texture.  He will bite off pieces of the waffle and eat them, so I guess that is one step closer to being able to serve him foods at their normal texture.

Monday was so crazy.  After we left Marcus, we had homebound instruction and I went to the grocery.  I took my shoes off when I got in the house and was unloading the groceries when my sock got caught on a nail holding the door gasket in place.  I tried to shake my foot in the hopes of loosening the nail's grip on my sock.  I only managed to fall forward onto the hard, unforgiving garage floor.  I landed on my left knee and rolled onto my left hip.  My right foot came out of the sock.  The dog came to investigate and I told her to go get Daddy.  She proceeds to go upstairs and lay down.  I guess she is no Lassie.  I'm fine, but I've got a couple of nasty bruises.  By the time all of that drama was finished, it was already 6:30 and I still had to feed the kiddo a puréed  meal, which I hadn't already prepped.  Whoops!  So, poor kiddo didn't sit down to dinner until after 7, which is his usual bath time.  Unlike some kids, his bath time tends to energize him, so he takes a bath rather early so that he can wind down and be asleep by 8:30/ 9:00.  

Tuesday was my 'do nothing' day.  I even wrote it in my calendar.  And I managed to complete that task!  It is a sad commentary on my life that I was excited about the prospect of sleeping in until 5:30. I managed that and got kiddo ready for school.  I was prepared for a battle.  It never happened.  He was so excited to go to school that he was outside waiting for the bus over 10 minutes early.  He had a fabulous first day back and there were no hiccups.  He adjusted well to eating his protocol meals and snacks at school.  Hubby even helped out by driving the teenager to school and then taking the dog to day care.  (Yes, my dog attends day care once a week) I spent the whole day in bed sleeping.  I so needed a mental health day.  Now I've got to tackle the housework..Yikes!!

Acts of Aggression

No, I'm not talking about the kiddo.  I am referring to myself.  Kiddo has been stuck in a rut for over a week.  I'm beyond frustrated.  Seems he just can't progress past puréed foods.  I think he would like these foods MUCH better if they were at their normal texture.  So, for the last week and a half, they have been doing chew training with my child.  It is what it sounds like.  And we are both tired of it.  He made his teacher rub his jaw Friday when he received his Homebound instruction.  I'm not surprised. What frustrates me is that he has no difficulty in the mechanics of chewing.  Anyone who has seen him eat his four preferred foods can attest to this.  Today is a big day.  We are supposed to be moving to diced foods.  I know the plan that is in place should he accept the waffle.  What I don't know, is what happens if he doesn't.  I can't go through another week of chew training.  Both of us will lose our minds.  

This is our last full week.  We finish the program next Monday.  Was it worthwhile?- YES.  Am I ready for it to be over?- HELL YES.  I have trouble sleeping at night and usually take a nap.  You would think that without my nap, I get some good sleep because I'm tired.  Nope.  Same crappy sleep pattern.  I am run down and my nerves are frayed.  Everyone and everything bothers me.  While the puréed foods are extremely time consuming, I have yet to purchase another blender because I do not want to stay with puréed foods.  It is for this reason that I haven't stockpiled my freezer.  This is not where I want to end up.  Then I have to remind myself that when we started this process, kiddo ate four foods with limited nutritional value.  He has now added SIXTEEN foods to his repertoire.  I should be happy, but I want it all.  Maybe I am being unrealistic, but I have all the faith in the world that he can do this.  Please keep us in your thoughts today.  

Once the program is over, we are not abandoned by the clinic.  Kiddo becomes an outpatient and will have an appointment once every two weeks for the next 6-12 months based on what is needed.  I will be grateful not to have to make the drive into Atlanta every day, as I have adopted some Atlantean driving habits.  I have become quite the aggressive driver.  

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!!