Sunday, September 1, 2013

Bean's Developmental Pediatrician Appointment

Last Thursday my husband and I made the journey to take Beans to see his developmental pediatrician.  To be fair, it's only about a 40 minute drive from our home, but getting Beans there is a journey in, and of itself.

First, I have to actually obtain an appointment with the the doctor. She is one of the only doctors who can diagnosis, and 'treat' autism in our state. You can imagine what her schedule looks like. When I initially called a few weeks ago I was originally given a January date. Umm... no. My son is not in a place where he can wait that long. He is having some really serious self injurious behaviors, and I need him to see the doctor. Soon. So, I explained the situation. I said there was no way my son can wait 5 months. He's not a new patient. He's been her patient for over 7 years, and I have only brought him in 2 in the last 7 years. This is an emergency. She checked with the nurses, and found that there was an opening due to a cancellation in a few weeks. I really didn't want to wait a few weeks, but it's better than months!

So, I get the appointment, and the day comes to get together to see the doctor. I forget how terrified he is of the whole process. We get there, and he doesn't want to exit the van.
He doesn't like parking garages. They're loud, and ominous. I don't blame him, but he must go, so Dad wrestles him into the building. We run for the elevator out of breath, and remember that he hates those, too. We finally wrestle him into one of those, and end up on the wrong floor. This goes on for a bit, but you get the idea. I am just thankful that Hubby is there to help, because Beans is way too big for me to pick up, and move.

The doctor comes in, and asks what his 3 biggest gains with motor skills has been recently. I think this is to focus on the positive, but it also let's her know where he is developmentally. We told her about his new climbing abilities. He'd never climbed before, and he'd never thought about pushing a table, or a chair around to reach higher items. He also learned to drink from a straw, and an open cup with some spillage. Then comes all the 'no' questions' that I have become accustomed to. "Can he dress himself, use the potty, point, shake his head yes, or no" I am used to those, and after this many years don't feel sad about it when answering, because I'm used to it. Beans is Beans. He is who he is, and he'll do what he'll do. It's not my job to judge it, but just to support growth from where he is at. We talk about aggression, and how most of it is directed at himself. She asks if he ever tries to tap at (his favorite stim is tapping on items) others. He can, but it hasn't been too awkward. She remind us it will be here in a few years when he is 20 and 6 foot tall. Yes, I admit... that might be a little scary coming at you in the grocery store. He loves graphic tees, and bright designs. He will try to tap on any he sees even if a a complete stranger is wearing it.

Meanwhile, Beans slinks to a corner, and poops. Awesome.He doesn't care that he's in a strange place with people he doesn't know. This pretty much answers the potty training readiness questions.

We discuss Beans pica, and serious meltdowns over everything. His meltdowns tend to be somewhat about his pica, because he can't always eat what he wants. I have found him in the bathroom chugging shampoo, and eating the bar of soap like it was a sandwich. He wants to taste the sunscreen, and eat the weeds outside. When prevented from doing that he gets very upset. She asks how his sleep has been. I say not great, but I hadn't thought much about it. It was a little worse lately, but not much different. She asked when he finally goes to sleep at night. It's between 11:30 PM and 1:30 AM every night, no matter if he is woken up early or not. If he left to his own devices he will sleep until 9 or 10 AM, but if not he doesn't make up for that by sleeping earlier. She thinks some of his behaviors could be tied to his poor sleeping habits. It seemed that I had gotten so used to him not sleeping that it never occurred to me that he might need more than he is getting, and that his brain is not functioning as well as it could with more sleep. Like I had said before, it almost seems that when one is just trying to survive there's no time for problem solving effectively. Just trying to keep up with the present moment is all one can do in this mode. Common sense solutions tends to be just out of reach.

Ultimately, she wanted to start him on Melatonin, and see if that helps with sleep, and in turn his aggression. If it doesn't then there are 2 stronger meds to try, but Melatonin is where we will begin. She also wants us to see a behavior psychologist in the same building (eek!) to help manage his behaviors. She warned us several times that what is cute now won't be in a few years. He already is outgrowing us, and she earned some points from me from referring to me as a very, slight, slight woman. lol She said what he does would not be a concern if he were 3, but he isn't. He is almost 10, and he is big for his age. My husband and I both weigh under 140 pounds, and Beans is likely to outgrow us by the time he is 15. He did not inherit our small frames. I think I remember her saying something about this when he WAS 3. I was not concerned at that time, because I thought I knew how to handle things, and I did.

On my way home, I thought about the fact that it's been more than 7 yrs since Beans was diagnosed. That seems like a lot of time to pass, but it doesn't feel like it. During his first appointment he was so quiet, and the other 2 sat in the corner playing with toys. This time he was alone with us, because CJ had practice, and Bubby went with her. She can drive, and is planning her school courses for her adult life that is coming. Bubby is able to be independent in ways I wouldn't have imagined 7 years ago. Beans is still Beans. He has grown some, but I do feel a little bit of sadness when I think of the ways the other 2 have, and will continue to grow, and he won't.I think when he was 3 it had not occurred to me how this was going to be my life. That reality is setting in now. Bubby will likely live on his own, and be at least mostly independent. Beans will not. Ever. He will live at home, or in a care facility for the rest of his life. The permanence of the situation had not sunk in when he was 3, and now it has. It's a gentle tug at my heart that I can't explain. I don't have any new information, but I do have a new understanding of it.

So far, the Melatonin has been a great success. He has gone to sleep the last 3 nights before 11 PM, and slept through the night 2 of those times.  As she had predicted, the meltdowns have greatly subsided. I am hoping for continuing success.

2 comments:

  1. My sympathies. It's a difficult situation. I think you are handling yet about as well as you can, and should take credit for that. :)

    ReplyDelete

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