In other news...

I finally jumped headlong onto the Facebook bandwagon after no less than 10 people said, "Are you on Facebook?" and now I'm wondering why I waited so long.

So welcome to the new, old friends who might have found their way here via FB. Reconnecting with you guys has brought a new spark into my life, and for that I'm grateful. Those of you who have sent me messages of sincere sympathy and understanding have given me a gift - thank you so much.

Before I forget, I wanted to post an update on where we stand as far as the evaluations we've been having at the Sparks clinic(s).

We spent last Wednesday at Sparks - a full day of testing and talking with some of the professionals there. We began with an occupational therapy assessment - David and I watched for a few minutes through the 2-way mirror, but I could see that Stephen wasn't engaging so we went into the room and I tried to help get him focused. He did fairly well on a few of the tests, again, especially matching block towers. His pencil control is poor, and he only did moderately well with repeating patterns or shapes. He continues to be enraptured with the huge mirrors in the rooms, and did a bit of preening in between tests. We talked extensively with the OT about some of his sensory issues, and she took a lot of notes. Hopefully all of this testing will get effectively condensed and synthesized for us - that's the whole point of jumping through these hoops.

After OT, he had a speech assessment - there wasn't as much of a connection with this particular therapist, and he didn't perform very well. While we talked to her, she constantly interrupted us to say "Yes, yes!" like she knew what we were going to say before we finished. That got old. Again I felt that sharp stab as I watched him struggle to express or understand very simple concepts. She would say, "In this picture the cat is ON the chair. Where is the cat in THIS picture?" It would be under the chair...and Stephen would look at her blankly. He didn't get that - not even remotely. She pressed on, and he repeated a few words, identified a couple of objects, but overall was not into this test at all. She told us that his preliminary results put him at about an 18 month level for both expressive and receptive language. I had guessed he'd test at about 2 years old...but either way, David and I looked at this precious boy, who was by then over in the corner playing, and the sorrow washed over us in a wave. This lady wasn't telling us anything we didn't already know instinctively, but hearing things in cold, clinical terms drives it all home. This five foot tall boy is like a baby. Here it is, laid out for you on this chart.

We had lunch at McDonalds, which of course was a highlight, as you all know - Stephen loves his burger and fries. And, we went back to the clinic. The next thing on the agenda was to meet with the "social worker." I put that in quotes because I still haven't quite figured out why he's called that, and also neither David or myself ever really understood what his purpose was in this whole matter. What follows is a brief paraphrase of our "meeting" with this pale, soft-spoken man in his sixties:

SW: "So...I understand that you suspect that Stephen might have autism..."

I kid you not. That is what he said. David and I looked at each other.

Me: "Umm....no....actually, we KNOW he does. He was diagnosed 7 years ago..."

David and I are thinking, "What the HELL?" I see it written on David's face and know it matches my own.

Me: "We're here to see the autism specialist, once a space opens up. We also wanted to have Stephen evaluated in all the other areas of development, and meet with the nutritionist...You see, Stephen was tested in these areas when he was 2, and we'd like to see where he falls on the spectrum now, and so forth...I've told about three people this stuff already."

SW: "Ahhh, yes...okay, okay..." Now, keep in mind, Mr. SW likes to nod and say "Yes, yes, okay, okay" in between approximately every third word that comes out of my mouth...even more annoying than the speech therapist. What IS it with these people?

David finally said, "I have to ask...exactly why are we meeting with you?" I had to stifle a laugh...not only did this seem like an interview that should've happened at the beginning of this whole process, but this man was like a doddering old uncle - trying to get things straight, and constantly chorusing, "Yes, yes...okay..." till I wanted to scream.

SW: "Well, I'm here to just kind of, you know...see how we can help you, and just, you know, bring things together and so forth..."

Me: "We need summer services. We need respite care. We need help with behavioral problems. We need to think about future planning, for when he's bigger than we are - finding out what options are out there..."

SW: "Okay...yes, yes..."

Me: "AAAGGGGHHHHHHHHHHHHHHH!" Well, not really, but I wanted to. "So, that's why we're here..."

What was supposed to be an hour long meeting lasted 20 minutes, and we shook hands on the way out - need I even tell you how cold and pale and fishy Mr. SW's hand was? *shudder*

The last thing on our schedule was meeting with the nutritionist. We managed to get Stephen on the scales, which I consider an accomplishment. He wouldn't stand under the thingie that measures height, so at one point we caught him standing against the wall, and she made a mark on the wall to measure. (Necessity is the mother of invention, you know.) We talked extensively about Stephen's diet and his nutritional needs - she wasn't overly concerned about his weight (130 pounds) because she said at his height (about 5 feet tall) that she thought he'd grow into his weight if we can keep it steady for now. She wanted us to add some calcium since he doesn't drink milk, and suggested Tums Smoothies. Since Stephen will actually take a children's chewable multi-vitamin, she said adding the Tums would be "no big deal."

Ha! I already knew how this would turn out, but I smiled and nodded. We went through her extensive list of food questions.

N: "Does he eat meat?"

Us: "McDonalds cheeseburgers and turkey hotdogs. That's it."

N: "What about chicken?"

Us: "Um...no, that was it."

N: "Okay, what about fruits - apples?"

Me: "No. No fruits."

N: "Bananas?"

Me: "Um...again, NO fruits. No vegetables. Well, except tater tots and french fries."

N: "Corn?"

Me: "No."

And on and on. Finally, she reminded us about the calcium, told us that his excessive intake of carbs probably isn't the cause for the massive amounts of gas the poor child generates (more likely it's due to his speed-eating and not chewing very well), and that she would be meeting with the team to give further recommendations.

And that was it...another long day, and we were all tired. We walked out to the car, and Stephen seemed happy enough. We'll go back in a few weeks to get the bundle of results and suggestions, and hopefully more resources.

Guess who we get to meet with to obtain all this information?

The cold, fishy-handed social worker. *shudder* This better be worth it.

One thing that hit David and I both pretty hard after the last few weeks was the notion that someday we might not be able to take care of Stephen full-time. We're trying to be realistic, but it obviously puts a damper on life to think about sending him away - even in the distant future. Neither of us want Kerry to inherit Stephen's full-time care, and we'll make sure that doesn't happen. But looking at Stephen now, as a boy, it is nearly impossible to contemplate. David put it best: "Who would take better care of him than us?" and for now that is absolutely true. At night when I'm getting him ready for bed, part of his routine is to ask for "tickles" on his back. I stand beside his bed, and he leans against my stomach as I scratch his back for a few minutes. It's a quiet, sweet moment and I inevitably think, "I don't want someone else doing this..." And for now, no one else will. What the future holds I have no idea. We're determined to be pragmatic but optimistic.

In the meantime, we've been on a fairly even keel lately. Both the boys have had colds but so far nothing major has developed. I'm not ready for Stephen to have another cough-till-you-puke thing going on.

I'll be back to report our findings after our meeting with...you know, that guy. *shudder*

(Oh, and Stephen won't take the Tums. Told ya so, lady!)