Manny was in a great mood for his appointment today. I left Lacy with the job of getting Jake off of the bus and making him lunch. I don't know what I would have done if I would have had to take both there, its doable, but I'm sure things would have been less thorough since the wait-time to see Dr. Michaels specifically averages about two hours. He spends lots of time with his patients, so its worth it.
After filling out the CHAT list and other developmental checklists I played with a VERY happy Manny in the room. Pretty much before Dr. Michaels could get settled in the room I gave him the freaked-out mom speech that I had worked up in my brain to sound a lot better than it did. Dr. Michaels listened, observed Manny, and did an examination. He engaged Manny in the "blowing out the light" game and Manny played along and did some eye referencing with him, though none to me.
Dr. Michaels explained to me many times that over the years he has seen tens of thousands of children, and although he believes that Manny isn't in the "exact middle of average" on some things, he's surely not at the bottom of the charts on anything. "Somewhat below average muscle tone" and "Somewhat below average on some social interactions and speech" seemed to be his assessment. I expressed my extreme frustration at not having a "normal" child to compare him to, and since Jake has such uneven strengths and weaknesses, it is totally pointless to compare the two. He went through several of the points that I am concerned about and said, again, that while Manny isn't hanging out with the median of the children that he sees on some points, he definitely doesn't see these points as a worst case. He also totally validated my fears and said that, since Manny does have a sibling on the spectrum, that my concerns are very warranted and something to watch extremely closely. Jake was always "at the edge of normal" with meeting milestones.
His recommendations: First off he things we should pursue genetic testing (ding ding ding... I guessed right), both to make me stop feeling like he's a timebomb when it comes to NF1 (or to confirm the feeling?) and also because both children have had similar symptoms. He was VERY interested to learn that both Steve's brother and nephew were/are special needs children/adults. I don't know how that information has slipped by, maybe because our families are not in contact, but he felt like that was even more reason to pursue the testing. They will be making a referral appointment to the geneticist for both boys. Dr. Michaels also explained to me that there are more and more rare genetic diseases being identified every day, and that the geneticist may see more significance in symptoms shared by both boys, or anomalies such as the fact that they both have these weird flat thin "crumpled" looking toenails. I am satisfied with this suggestion.
He also recommended that I try to arrange some playdates with typical children his own age without Jake present. Jake has an odd way of speaking and acting, so he may not be the best model for typical behavior for Manny. I think that I can definitely arrange maybe a Monday playdate, even at my house, when Jake is at school. I am also thinking of finding Manny a "Mom's morning out" or similar program or private in-home daycare for a couple of mornings per week when Jake is at school. So I can look for opportunities to do that the next few months for sure.
Then he gave me the "you're a wonderful parent, doing a great job" speech that, although I guess I should enjoy or take heart in, I don't believe most of the time because I KNOW I could be doing more (no offense to the people who constantly tell me this.. I can't help that its hard to believe). I tried not to be rude shrugging off his praise. He tried to make eye contact with me (ugh) and said "No.. I see lots and lots of parents of special needs children, and you do a good job." When that didn't work he touched my shoulder and said "You do a good job. I mean it." What a nice doctor and a truly caring man. His "daddyness" was showing. I'm glad we found him and his wife (Cindy- OT).
I have to say that I feel better, as usual, now that I have a direction to take. I get the most unsettled and upset when I feel helpless and like there is nothing that I can do. I know that we don't KNOW any more than we did, but at least someone's thrown a bone in the high grass for me to go search for.
The camper is in the driveway and I have a big ole sack of fruit, cheese, crackers, snacks and homemade granola bars for us to munch on at "The Function". I'm looking forward to a few days of release for the family.
