Monday, February 15, 2010


Instead of doing a daybook this week, I'm just going to write about what is consuming all of my thoughts...we begin a special journey this Lent, our journey for Jack. On Ash Wednesday, we will travel 3+ hours to a university developmental center to have him evaluated for autism spectrum disorders. Isn't that a fitting time to begin such a thing?

I took this picture just for the occasion. I'm filling out reams of paperwork for this appointment, and they also want a picture stapled to the front. I couldn't find a recent picture of just Jack actually looking into the camera, so I had to take some. He's not an easy guy to photograph. This one came out great though. It looks just like him. Is that a weird thing to say about a photograph? They *all* look like him, of course, but this's special. Jack rarely makes eye contact anymore, but when he does, this is just what he looks like- crooked smile, a little shy...

Anyway, I've wanted to post more about this before, how we got to this point of finally having him evaluated, and I've put it off because it's such a *big* story. And I'm sure this will be a very long post, I'm sorry about that. Maybe I will break it up into more than one post. But filling out all the paperwork has forced me to get my thoughts together, to reach back and dust off memories of how things were at different points. I could say that there were almost always things that niggled at me about Jack, but I'm not sure that's genuine. I mean, you could probably always say that, you know? If one of my kids was diagnosed with a brain tumor tomorrow, I would say, "Oh, well I should have known something was wrong when she had that headache three weeks ago." Hindsight is 20/20, as they say. And part of that is why I'd like to get all of this down now, before we see any professionals that may taint our very unprofessional opinions and thoughts about our son.

These forms always start with the history...pregnancy and birth history, medical history, developmental milestones, etc. And there's really not a whole lot of significant information to report here. He was full term. My pregnancy was uncomplicated and healthy. His birth was a bit rocky in that I had prolonged rupture of membranes, and he ended up being in the hospital for a few days on "just in case" antibiotics. He also had rather wet lungs at birth and was on nasal cannula oxygen for a day or two. These are all very common, even mundane, complications. I used to work in a hospital nursery, and these are very common interventions. His medical history had a few early bumps. His lungs stayed reactive, and he had problems with wheezing quite frequently that first couple of years. He would even wheeze from crying hard. He had RSV when he was a few months old, but we managed to stay out of the hospital. His lungs strengthened though. He still has asthma, but we only break out the nebulizer a couple of times a year, and it's almost always a virus that triggers the problem. He had ear infections, lots of them, the first at 2 months of age. The pediatrician said he was the youngest baby he'd ever had with an ear infection. And he had them a *lot* that first year and a half, which meant lots of antibiotics, lots of problems with diarrhea and yeast...even then he was hypersensitive to new tastes and would gag and often vomit on most medications, so that was rough. They started talking about putting him on daily antibiotics and possibly putting tubes in his ears. And so we started looking for alternatives. We ended up taking him to a homeopathic practitioner. She saw him once, prescribed a remedy, and he hasn't had hardly an ear infection since. He was born with an undescended testicle, and at 2 years of age they decided to operate on it. They found a little hernia was the culprit and repaired that. His vaccines are up to date, and no, there was no memorable reaction to any of them. So, I wouldn't say his medical history was pristine, but nor do I see any place where I can say, "Oh, this was a definite red flag."

The developmental milestone section is the first place where it starts to show a bit. Not early on though. As a baby, Jack seemed normal in every way, frankly. He was social. He smiled, made eye contact. I was a baby nurse, I know what to look for, I would have noticed issues like that. He had colic, but so did my oldest, and it passed around 4 months like hers did. His early milestones were all within normal range. Looking back, only a couple of things stand out. One, at some point after the early months, he started having trouble falling asleep normally. Unlike my first child, would no longer rock or nurse to sleep, and trying to do so seemed to just make him more and more upset and stimulated. He did love the baby swing, ironically, but once he outgrew that we were in trouble. We ended up putting his crib in a separate room and laying him down alone to sleep...something totally foreign to my crunchy-momma leanings. He had the hypersensitive gag reflex and never took to most table foods very well. And his speech developed on the slow side. Not terribly so. No red flags at the time in the absence of other significant issues. His speech *did* develop, just slowly. And as he became a toddler, issues with fine motor skills started to show. He had no interest in trying to dress himself, brush his own teeth, using a fork/spoon (although he would eat very few foods that required them anyway). I see this as a red flag now. Even Tess is already trying to do these things, trying to push her feet into her shoes, draping clothing over her head to try and dress herself...Jack never did any of that. He still doesn't. Anyway, with that, I'm starting to spill into another area. I think I will stop here and pick up again later. My head is buzzing with thoughts I want to get down, but I have to get my day going. Thanks for sticking with me this far!


Mary @ tinyprayers said...

I love the picture. I look forward to hearing more. I hope the books are helping.

Tiny Actions said...

Hope you get the answers you seek regarding Jack. Such a good idea to write everything down before you head starts to swirl with all the doctor's jargon.

A lot of what you describe about behavior reminds me of my princess. All the behaviors went away once we got her milk protien allergy under control. I know you've tried other diets with Jack, have you ever had him allergy tested? Not to throw another thing your way.

Angela M. said...

I can only offer prayers.