This blog isn’t usually about kids or medical issues, but sometimes we all need a chance to vent. And since I know the posters/readers here deal with a whole slew of medical issues, I figure someone besides me probably needs a place to vent about them.
Last Thursday was not a good day. In the afternoon I had an appointment for my second son with a pediatric GI doctor. I was really excited about this, because I’d just finally gotten the referral through on Tuesday, so I hadn’t expected an actual appointment for a couple of months. But he’d had a cancellation, so we were able to get in right away. Now, my son has always had digestive issues. (Warning, the rest of this paragraph might be TMI, so feel free to skip ahead.) If he eats soy in any form he breaks out in blisters all over his butt and legs. He’s had diarrhea pretty much his whole life. When we took milk and wheat out of his diet (about 6 months ago) he went from having 5-6 messy diapers a day to 1-2. They still aren’t well formed, and they still have undigested food in them, so we haven’t fixed everything, but things are much better. After staying around 17 pounds from 9mo to 19mo, he’s gained 5.5 pounds in the last 5 months. Obviously, there are foods he can’t tolerate. Unfortunately, all of his allergy tests (IgE blood and skin, IgG blood, and patch, for those who know something about allergies) come back negative, so I have no guidance as to what else may still be contributing to his digestive issues.
I told all of this to the GI doctor, in long and excruciating detail (more detail than I’ve gone into here). A lot of it was also on the paper with his history, which the GI had on top of his clipboard in his hand. When I was finished, the GI looked at me and said, “So what makes you think he can’t tolerate these foods? Just the history you’ve given me?” Well, yes. I just said that, didn’t I? My response was, “When he eats something with soy in it, he breaks out in blisters; when he doesn’t eat soy, he doesn’t get blisters.” His response: “Well, yes, that is pretty much the definition of an allergy.” Yes, I know. It got better from there. He kept telling me that obviously his poop (can I say poop on this blog? well, i did) is different from normal poop because he’s on a weird diet. Did he not just hear that his poop was worse before we went on the weird diet? Then he suggested that he just needed more fat in his diet. Forget the fact that he eats hamburger, eggs and peanut butter pretty much every day. He kept suggesting dairy foods to get more fat in his diet, and I kept having to remind him that we don’t do dairy.
His position summed up: My sons bowels are completely normal, his poop is completely normal, and he really could tolerate the food that I’ve removed from his diet. But he’ll run a few tests just to indulge the crazy mom.
My position summed up: AAAAARRRRRRRRRRRGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!
And that was only the beginning of the bad day.
My oldest son, who I’ve blogged about before, has autism. He’s getting to an age (3.5) where we feel like he’d really benefit from being involved in more activities, but finding activities he can and will do is a struggle. We thought we’d try some gymnastics at The Little Gym near us. Spencer loves to run, jump and climb, and we thought he’d really enjoy gymnastics.
My husband went to the gym earlier in the day to ask about their classes and talk to them about Spencer. He got a brochure that talked about the different classes and gave a schedule. He explained that Spencer has autism. They said this was no problem, that they had a lot of special needs kids in their classes, and they were experienced in dealing with it. My husband asked about possibly needing to do a parent/child class rather than the regular 3yo class, but they said he really should do the 3yo class, and be with his age group, and everything would be fine. So we decided to take him to the 3yo class that night to try it. We were really excited.
It did not go well. The class is held in a gym with a mat area and a bunch of gymnastics equipment. We were excited for him to do gymnastics partly because he loves to climb, but in the 35 minutes we were there, the class never once left the mat area. Spencer did. At first the gym manager told us not to worry about it, it was normal for kids to explore the gym the first time they were there. I thought to myself, “This is not something that’s only going to last 5 minutes. He’s going to keep wanting to play on that equipment, and he’s going to do this every week, for a large part of the class.” I said something to that effect to the manager, too. About 10 minutes into the class the instructors (there were 2 for about 10 kids) called the manager into the gym to help, because one of them couldn’t keep getting my son off the equipment while they were trying to get the other kids involved in things on the mat. I wasn’t particularly concerned that my son was climbing on things, as he has the best balance of anyone I know, but I understood their concern with him climbing when the class was supposed to be doing other things. Of course, I also understood his desire to climb on the fascinating equipment.
So things weren’t going as well as we hoped to begin with. Then my son started pushing. I saw him push one of the other children, and I cringed. (Note: he did not hurt the other child. It was a fairly gentle shove, one that said “Hey, pay attention to me” in Spencer-talk.) I should have gone in there right then. Pushing is not allowed at our house, and Spencer gets a time out if he pushes. He continues to push sometimes anyway, but it’s not tolerated. I didn’t go in, because the gym specifically asks parents not to go in unless the instructor asks you to. The instructor didn’t ask, so I didn’t go. If I had, maybe the pushing would have stopped there (then again, possibly not — some days are better than others for not pushing, hitting, etc). When he pushed the second time my husband went into the gym. He tried to get Spencer to pay attention and participate in the activity, and it worked somewhat. But then he pushed again, and we left. I’m not sure that the manager asked us to leave, but I suspect she did. I didn’t ask my husband — I was upset enough as it was. I could tell she was glad we were leaving (though not in a mean way). She suggested that we try a parent/child class (yes, the one she’d said earlier in the day that he was too old for and we shouldn’t do).
We took all three kids out to the car, and I sat and cried. I don’t want my son to push other kids, but I’m sometimes powerless to stop it. I want him to be able to participate in activities with his peers that will enrich his life, but sometimes I wonder if that’s ever going to be possible. That day I was especially frustrated because the gym manager had told us that he would be able to participate, and that it wouldn’t be a problem. She sounded so sure, she said they had lots of experience, and I trusted her. My mistake. If she’d just said, “Well, we’d like him to be able to participate, but we don’t have a lot of experience with this and I’m not sure how to make it happen,” I would have been all right with that. It’s okay to be overwhelmed by people with special needs, it’s okay to not know quite how to deal with them. I understand and respect that. I’ll be really happy if you show an interest in wanting to make things work in spite of your uncertainty. I’ll be happy to talk about what we might need to do so my son can participate, and I’ll be happy to help in any way I can. Just tell me the truth. I was so much more upset because I really thought that they had experience with this and that it wouldn’t be a problem.
So there you have it — screaming and crying (all by the mom, rather than the toddlers) all in one fun-filled day.
How about you? What medical issues (your own, your childrens’, you parents’, etc) have you frustrated? Feel free to vent all you want.