Thursday, February 15, 2018
The day the doctor decided to explain my 26 year old son's autism to me.....
DC has a standard appointment with his neurologist once every three months. The appointment described below was 6 months ago. I started writing about it at the time but got sidetracked by my many dental issues. He had an appointment in November that was uneventful and another today that we will cover at a later date.
This is the same doctor who for some reason can not seem to get his blood pressure in one, two, three tries - which always serves to aggravate DC to no end. The last time DC was so angry the doctor asked cluelessly "Is he acting that way because he is trying to tell us something?" - UGH!
In preparation for this appointment, in an attempt to avoid a problem, I tried to explain to DC that it is not his fault if the doctor has to keep trying to "squeeze" (get his blood pressure). The doctor just must not very good at it. That made DC laugh and knowing it was someone else's fault made him even happier. I hoped it would also keep his aggravation level from spiking.
DC has been on seizure medication for two years now. I am supposed to report any change in behavior to the doctor.
I noticed little things when he first started the medication. He had a few crying episodes - all out "ugly face" crying with tears (he never cried, even as a baby - he would scream, but not cry. He almost never has tears.). Both times it happened, it went on for quite a while and both times over the Barney song.
I also noticed, not very long after he began taking the medication that when he got anxious over the things he normally gets anxious about, his anxiety was a little bit higher and it lasted a little bit longer. All of this had been reported to his doctor, previously.
His anxiety and meltdowns began to get even more intense in the months between our appointment in May and this appointment in August (See: Welcome to Monday Meltdowns and Alone).
I explained this to his doctor. He asked when this tended to happen. I explained that it was not limited to Monday mornings, but Monday did seem to be a pattern. I also said that I realized that Mondays are difficult for many people but.....
(I was cut off)
He laughed at me and said: "Well nobody likes Mondays".
(I think I just said most of that)
Me: I understand that most people do not like Mondays and it may be that DC does not like or never has liked Mondays, but it had hit a new extreme now.
Dr: (Still laughing) Everybody hates Mondays.
(So, listen. I am old. I am tired. I am out of patience for many things and many people and this guy was working on my last nerve.)
Me: (without going into the details of his meltdowns here) DOES EVERYBODY DO (THIS) AND (THIS)???? IS THAT WHAT "EVERYBODY" DOES? REALLY?
I am not saying that he never gets anxious, I am not saying that things did not bother him before. What I am trying to tell you is that that things that normally bother him are now bothering him to an extreme.
Dr: Does it happen every day?
Me: No, because he doesn't get anxious everyday.
Dr: Well if it doesn't happen every day then there is no need to worry about it.
(I often repeat back what he has just said to me because his answers do not always seem to make a lot of sense. I think hearing it played back to him word for word with, I admit, a bit of an "are you kidding me?" tone in my voice, helps him to see how ridiculous his responses sound)
Me: So you are saying that if the anxiety and aggression does not happen every single day, there is no nothing to worry about?????
Dr: Well no, not every day, but if something that normally upsets him, seems to upset him more; I need to hear about it.
(Didn't I just say that??)
Dr: So what do you want to do? Do you want to change is medication?
Me: I don't know. You are the doctor. You asked me to report changes in behavior and that is what I am doing. I don't know if a medication change will help or if there is another with less side effects.
Dr: Well you are asking me to change his medication.
Me: No, I am not asking you to change his medication. I am reporting behaviors. I do not know if another medication would make things worse or better. You are the doctor. Do you think this change in behavior would make a medication change necessary or would another med have more side effects? I am just telling you that he seems much more anxious than he was and his anxiety is lasting longer. He doesn't seem to be able to get a grip on it as easily as he used to. I am not asking you to or asking you not to change his medication - I am reporting changes in behavior as I was asked to.
Dr: Well you know, he has autism and because he cannot communicate well, he could get frustrated at not being able to tell you what is bothering him.
Me: (Standing, because I had had enough) ARE YOU REALLY GOING TO SIT THERE AND EXPLAIN AUTISM TO ME? DO YOU THINK AFTER 26 YEARS THAT I DON'T KNOW THAT? I AM TELLING YOU, THAT HIS BEHAVIOR HAS CHANGED. IF IT HAS NOT CHANGED ENOUGH TO REQUIRE A CHANGE IN MEDICATION, THAT IS FINE, BUT DO NOT TRY TO EXPLAIN MY SON OR HIS AUTISM TO ME!
Dr: (looking angry) We will keep an eye on it. We will see him again in 3 months.
Now, DC has been relatively healthy all of his life. Other than the naturopath he saw for a few years due to digestive issues, we really have not had to see a doctor other than for annual physicals or the random run of the mill illness. He had his first seizure when he was 24, so all of this is relatively new to me. He has never been on any long-term medication before. Sure there were antibiotics every once in a while but never anything more than that.
If your child is taking medication for a long term, possibly lifelong issue and you are asked to report changes in behavior or health, wouldn't you do that? Even if the behaviors are not anything you cannot handle; wouldn't you report them so that if somewhere down the road, they should escalate - there is a record of the progression?
Wouldn't you also report changes because you, as a non-medical professional would not know what changes are important and what changes are not?
Maybe I am stone cold wrong about all of this, as I said - we are new to all of this, but I can't imagine laughing at a parent (who is new to seizures and medication) is not the way to go.