The Diet

After getting his school situation straightened out, I was able to focus on other issues that we could look into. So many people had raised the gluten-free, casein-free diet issue, I felt it bore some looking into. A client of mine had their child tested to discover a ton of food issues. While I couldn't afford to do that, I thought I'd see how far I could take my insurance.

I lucked out when I mentioned the issue to his play therapist. I hadn't been able to find anyone that could do anything about food allergies in the way I needed. She had found an ENT that did a ton of allergy things, and was able to diagnose her milk allergy. He was actually covered by insurance, so I gave it a whirl!

Covered by insurance - I should qualify that. While he was a covered provider, come to find out that our primary care doctor would not refer to him, so it ended up not being covered. The next PCP we tried didn't even believe in food allergies and wouldn't refer. Still working on this issue....

He had us take Em off milk from the get-go and recommended stool testing for a gluten allergy. That was a relief. Everyone else had counseled us to just try it and see if it helped. How can you "just try" something that's a major lifestyle change, expensive, and traumatic?? all this kid ate was bread or breaded!

So to be able to refer to test results that showed Yes, he has a gluten allergy, was just such a relief to me! I was able to use those to get the school to give him a gluten free diet there as well!

Within about 8 weeks on the diet, we noticed some big changes.

For the first time ever, he wrote a backwards letter and did NOT have a major meltdown over having done it wrong. He simply said "oops" and erased it and tried again. Minor though it seems, this was HUGE to us!

Oh, and his brother hit him (he's 3!) and Emerson did not immediately whack him back and start screaming and crying! Instead he ran to us and told us that Jamie had hit him. Wow!!

School reported that he was writing his name on papers! He wasn't having to trace a hi-liter in order to write anymore. His focus was sooo much better! Yay!!

Kindergarten Autism Style

Here it is! Fall of 2008, time to start School!

I will say that the school team did a great job of helping us cherry-pick his teacher to get one that we all felt would do well with him. Mrs. Davis with USD 259 was the perfect pick!

She cared about him strongly, and worked her heart out for him, implementing anything we could think of to help him. Shortly into the year, we all realized (through tears on all sides - even the teachers!) that mainstreaming him had been a horrible call on Rainbows part. Unfortunately, restarting the IEP process takes months. It took 9 months that first time, and I was terrified it'd be the same this time.

The school was phenomenal though and got his testing starting fairly fast, got their autism consultant in there to observe him, and as they got closer to an IEP, they even went ahead and pulled in para-educator support for him even though he hadn't been approved yet.

That marked the day of change for little Emerson (and Mrs. Davis!). The para was able to give him that one-on-one he absolutely needed to stay on task, alleviate stress and anxiety, and prevent meltdowns - but also to control them when they happened.

Instead of destroying the classroom and sending the class into panic mode, he was able to start calming down and earn rewards, able to do some school work, looked forward to school. It was a huge change!

Everything wasn't perfect - he at that point was so terrified of the art class that he never went back to the class again, he still would run out of the class room for latchkey, and he still had extreme issues with eating in the lunch room. But I no longer had meetings with the principal daily to discuss what he did that day!

From Pre-school to Kindergarten!

That first year was hard hard hard. We had no idea, read way too many scary things, and people seemed so intolerant and harsh to us.

He went from Rainbows to special ed preschool, still wasn't potty trained at 4 years old. Then back to Rainbows for the summer, and stayed there for the pre-school year. He finally potty-trained at 4 1/2 though he still has accidents today.

At the end of the year, they made the brilliant decision to main-stream him and remove his IEP. He tested wonderfully they said and there was no reason to keep him on.

It was a wonderful and yet terrifying decision that turned out to be yet another horrible battle in his life as he started his Kindergarten year.

Testing Testing, 123

The testing.... was a nightmare.

I had no idea what to expect, but I did at least figure they had experience with special children and would take that into account. Alas.

The first day of testing took forever - he wouldn't focus on any of the questions long enough to answer them, kept going off on tangents, then throwing fits when he couldn't stop the testing.

At the end of the day, they concluded that they couldn't make a decision because they couldn't get him to finish the tests.

Uh. DUH, isn't that why I brought him here??

Which of course meant another month long wait while they setup another testing time for him. That time, they did it with one person in the room, with bribes like M&M's, and were able to get most of the way done.

After all this they sat us down and finally concluded that he needed some help. I can't remember today what that first IEP entailed - I had no idea what they were talking about at the time and was absolutely lost!

Thus started Emerson's journey at Rainbows!

The Testing...

We had no idea what "screening" meant but contacted Rainbows United to get going with it. First thing they told us to do was have his hearing checked, so they could be sure it wasn't an issue of him not hearing what is expected of him.

So a few weeks later (one think you'll notice is that there's LONG wait times for all this stuff!), we took him to the audiologist, who tested and approved his hearing. That paperwork supposedly then went over to Rainbows for his file.

Next up to bat - the joys of testing!

After waiting another month or so, it was finally our turn to be evaluated! We went up to Rainbows United's Kid Cove building, near 21st/Zoo on the west side. They took poor Emerson into a room with 3 or 4 adults in there and started grilling him.

Could he write this line?

Could he tie laces?

Could he hold scissors?

Etc etc.

They tried it with us in the room, with us out of the room, with bribes, treats, etc. Finally they told us that they just couldn't test him. He absolutely could not finish the tests even enough for them to score anything. Well, hello!? that's the problem!!

So we had to make another testing appointment to try to fill in the gaps. A few weeks later, here we go!

This time they took him in with just one person in the room and it went a little better. I was rather surprised at all the things he couldn't do that I had just never thought about. We never had a tricycle, and I didn't know he should have been doing that! And I never let him near scissors so he'd never had the chance to try cutting lines.

But there were other things like standing on one leg, balance, skipping, drawing, etc, that he really should have been able to do and could not. Their biggest problem though was his reaction when he couldn't do it, if they could get him to even focus long enough to try!!

So then they schedule the results meeting, where they'll talk to us about what they think and if they can help...

In the meantime..... a little bird there told us that we might get more help if we go ahead and have a psychologist evaluate him for a diagnosis... so that appointment is also approaching (after a 2 month search to find one who would deal with children this young!).

Meet Emerson!

Ah, Emerson. Where to start!

First off, he's named after Ralph Waldo Emerson and Emerson, Lake, and Palmer, so I guess we just always knew he was destined to be strange. Plus as the son of a gamer-geek and book-worm, he just had "odd" genes.

So no surprise to us when he's just a bit on the quirky side. Plus as a firstborn, it's not like we had a clue what kids were supposed to be like.

Oh look, Emerson's flapping again - isn't he cute!?

Ugh- another tantrum - when do they grow out of this!??

But it wasn't until he started going to a daycare center that we really saw how different he was compared to other kids. Still we thought "he's just himself, he's unique!"

Then the daycare owner called us in and let us know that not only was he "unique," but he was just not acting like the other kids at all, required a teacher for just him, and she really thought we should have him checked out She had us watch him on their video. What did we see that she thought was unusual?

• He didn't participate - he would wander off and play in the room away from the other kids, who were doing an activity together.

• He kept having tantrums - whenever something didn't go right, like he dropped his fork, or his toy fell over, or a kid walked by.

• His tantrums were violent - he kicked a teacher as she bent over him trying to get him down for nap, he would hit the teachers as they tried to calm him, he screamed, he flailed, he threw things.

• He wouldn't eat - we knew he had a limited diet, but even at daycare he wasn't eating. And they noticed a pattern - he wouldn't eat anything colored. All his foods that he did eat were beiges and he avoided any odd textures like pudding or jello.

Young parents with no clue - the daycare lady pointed us to Rainbows United - http://www.rainbowsunited.org - to have him screened. In the meantime, the daycare kicked him out.

And that started a new, huge, strung-out, stressed-out chapter in our lives...

To be continued!