Ah, testing 1,2,3

Okay, so earlier in the week Adam had his evaluation for preschool disabled program. Early intervention (he currently gets 3 hours of therapy a week) will stop when he turns 3 (in May) and so now it's up to the public schools to provide services.
We had an eligibility meeting a few weeks ago and now it was time for his tests. I brought him to the school offices and there were 3 people in the office and a student who was observing. One was a Social Worker, one was a Speech Pathologist and the other was a Psychologist.

At no point did I tell them my background, and it was interesting to see all of it from the other side.

For the first question they asked Adam what color a particular shape was. Adam replied, "Octagon".  It was actually funny and the woman laughed, she said she hadn't expected that answer. She repeated her question stressing the word color, and he replied correctly.

Basically he's all over the place. Some things he could do: ie thread beads, knows most letters and numbers. Physically, everything they asked of him- backwards walking, throwing, jumping, raising his arms.

He didn't know the answer to things like "who's hair is longer?" or "Who is tallest?" when shown photos with a few people in them. He also was unable to follow more than one direction with unrelated items. For example, she had a cup, tiny baby doll, car and ball and said things like, "Turn the cup over and hand me the baby".  Each time , he looked at her and then sort of threw something in her direction. I could tell he didn't understand.

Also, because he doesn't eat, he's going to come out like a 6 month old on some of these subtests. I reminded the Speech Pathologist that he only was able to make vocal sounds since May '09, so that's only about 10 months. They were pleased and surprised with all he could say given only 10 months and they seemed positive.

I was good, I sat in the corner and once he got used to them, I moved my chair back and didn't say anything to interfere in the testing. The social worker asked me a bunch of questions, and at one point, she shook her head and got teary-eyed. She said to me that she didn't know how we have been doing all this, that he (and we) are amazing and she can't believe how good he is doing despite all he's been through. I handed her a tissue.

Personally, I wanted to roll my eyes. I don't have time for this, lady. We move on and deal.

It lasted almost 2 hours. Towards the end, Adam actually laid down on the carpet and answered their questions, he was exhausted.

They said to me that all the results will be mailed and we will have an iep meeting in early May. I thanked them.

I also called a lawyer specializing in Special education law and set up a consultation for Phil and I to go over things with her. I have been teaching a while, and have a masters in learning disabilities, but when it's your own kid, I'm afraid I will get overly emotional. I want to have an attorney coach me beforehand. This way at the meeting, I'll know what to say and if things don't go well, I will know how to end the meeting appropriately and already have an attorney to represent us in any future hearings.

Our goals are:
1. Extended school year for 4-6 weeks
2. Speech/Feeding therapy no less than twice a week
3. We need to have the nurse tube feed him. If other kids get fed and get a snack, than I need them to make sure he gets a feed while he's there.

All in all, it was better than I thought it would be. I was proud of him. The Child Study Team seemed friendly and kind.

Also on the way out, we had to stop at the enrollment office to enroll him. I had all my paperwork and proof of residency. The room was very institutional. You know, with  3 rows of metal chairs and a woman who was behind plexiglass, with a slot so you can slide your papers to her and a hole to talk to her. She looked the part: super grumpy and didn't move real fast. Next to the glass was a "now serving..." light up sign and a red ticket dispenser. Well, when it was our turn, we approached the window, Adam saw the red ticket dispenser and immediately began signing , "Cheese". He then begins demanding a piece of cheese from Mrs. Grumplestilskin. Even she laughed out loud as I had to explain to Adam that we were not at the deli.

Just think- 10 months ago he didn't even know what a supermarket deli looked like, never mind was able to ask for cheese by screaming "Cheese!" and signing like a madman. I have to smile.

Feeding Protocol

Okay, so a few weeks ago, we went to this feeding clinic (see earlier blog) and we are waiting to see if insurance will cover a 30 day hospital program. In the meantime, we have embarked on what this psychologist said to try.

We figured, Why not. We have been trying stuff for years, what's one more protocol?

So, here it goes.

She said to do the following:
Separate the tube feeds from mealtime whenever possible. Have him sit in the high chair when we all eat and give him one bite of food. No more. Encourage him to eat the one bite. Offer mealtime toys that he can just play with when he eats the one bite and if he eats the one bite, reward, clap, etc, but do not offer more. He's all done. If 15 minutes go by and he does not eat the one bite, then end the session. Take him out of the chair and move on. One bite, for one week, then move to two on week 2, etc.

Ok. We did this.
I went to Target and bought a bin and a bunch of small toys that seem fun and cool to fill in this "meal bin".

It's difficult to split up the meals and tube feeds for 3 days a week, because daycare is tough. Monday, Tuesday and Wed, he goes 9 hours at daycare and he doesn't eat. So we feel the need to immediately tube him at 4pm, then we struggle to fit the rest of the calories in before the next day- usually going to bed by 1am and then getting up to start his tube feed at 5am. But we did do our best, and when we ended the session, we let him run around for a bit and then tube fed him.

Week one went well. Lots of clapping, he ate his one bite at each meal.
Week two went well. Lots of clapping, he ate his two bites at each meal.

Food included: pasta, applesauce, cheerios, eggs, grilled cheese, pizza, toast, pancake, mashed potatoes

Week three started yesterday. Disaster. No eating, no three bites. He went back to throwing food and screaming. He gagged. He threw his plate.

I was calm. I removed him from chair, had him pick whatever it was up, he sat in time out on the steps for 2 minutes, he would return to the high chair. No toys worked as bribes. Nada.

So, this was yesterday. Today, same thing. No 3 bites. Not for any of the 3 meals. No waffle. No grape cut into 3rds. No spoon full of homemade chicken noodle soup. (which I had him help prepare and was smelling up my house something good all day)

As I write this I cry in frustration. It is so difficult. So many tests. So many experts. You, you frustrate me with your suggestions. Now what?

I will go back to 2 bites. I will get some more tissues. We will continue.