Thursday, October 14, 2010

One Therapist Down

Well, I guess we are all done with Murphy's therapist. I can't get another appointment after school until mid December. Considering Murphy didn't even come into the appointment last week, I just don't see the value in bringing him 3 months after his last appointment. I could get a 9:00 am appointment for Murphy, but then I would not send him to school that day and I just don't see it worth missing school.

The therapist asked me what I thought the diagnosis was last time. He doesn't know. He told me that he didn't think he was helping Murphy or me. He did strongly recommend we get Murphy evaluated at the Tufts Center for Children with Special Needs in Boston. Of course, he kept messing up the name of the place and calling it this other place where one goes for therapy...which then confused me because I thought he was telling me to go to a second therapist there along with him. Huh. Oh, and he always calls Murphy by the name "Monty." Okay, dude. What is so hard for me is that some of the world's best Child Psychiatrists and therapists are an hour away in Boston. I mean, great ones...ones that write awesome books and are approachable and take appointments still. But it is an hour drive and I just don't want to do that to Murphy. It's not like Murphy looks forward to going to a therapist. It would become a whole half day excursion. And my insurance does not cover them.

I guess I am going to hold off on starting anything new until we get this evaluation going. That should be complete by early Spring. This all makes me feel like I am not doing enough. But life is not like in the movies. You can be a loving mom who wants to do the best for her child and still not be able to get immediate answers. Or an appointment with whom you want and when you want.

Then, I feel like I have Munchausen Syndrome by Proxy. Like there is nothing really going on here with Murphy and I am looking for problems. That certainly is not the case, but it would be so much easier if there was an actual test to give us the answers we need. Sometimes I am envious of parents who have children with an actual physical problem. 'Okay, you have asthma, here is your inhaler.' No one judges the parents and thinks that they did something wrong to create the physical ailment. There is an actual test to find out what the trouble is. But truthfully, I am so grateful both of my children are healthy. Really I am. And now I know when I go out later, I will be standing in line at the store next to a mom with a child with no legs or something. Last time I took the kids to the dentist, there was a mom there with not one, but two disabled kids. One with Downs and the other in a wheelchair. So I know I got it easy.

And I was thinking about the whole thing with Mom 1 yesterday. Do I come across so crazy in my normal existence with some people that it makes them think I am overwhelmed with my kids and life? I thought I was being funny and charming. Apparently, I came off as crazed. I was just being myself. I know enough to hide some stuff. I guess I over-share, but my feeling on that is I am breaking barriers. If I don't talk about some stuff, no one will. There are a lot of moms out there struggling and have no one to be real with. I am not overwhelmed with my circumstances. They are what they are. I have patience. I am more sad in my heart than hysterical. I don't want to be perceived as frazzled or overwhelmed...not unless I really am acting like it. I know I am beating this to death, but yes, okay, I may be overwhelmed and confused about what to do with Murphy in general, but I CERTAINLY do not act like that in public with people I hardly know. It is sort of funny that whatever I said that made her 'concerned' was something not even on my radar for actual problems. She doesn't even know a twentieth of what is going on.

And how did I even come up in conversation?

Just getting it off my chest. My husband thanks you for listening.


  1. Commenting would be so much easier if someone would just transcribe my thoughts as I'm reading your posts. As you can imagine, I get it. Totally. I agree and have felt every thing you have written.

    That really sucks about the therapy. That show "Parenthood" on TV has a kid who has Asperger's. I haven't really watched much but I have read about the show. In the first season, they discover their kid has Asperger's. They go from someone suggesting he get tested to being tested, then placed in special programs and therapy all in about two weeks. LOL hahahaaaahaaa. Wouldn't it be nice if it was that fast and easy?

    I'm with you on being thankful that my children are healthy (and yes, it COULD be worse.) But that doesn't change the fact that we do have real issues to deal with. And it's ok to wish that your kids were "normal." Yes, there are lots of kids out there that are worse off, but there are so many more that are "normal" and it's ok to wish you were one of them. I know I do.

    I can't tell you how many times I have thought, "I wish we could just get a simple test and they could say, 'this is what it is, take this, do that, etc" Asthma is a perfect example. Not that having asthma is a walk in the park, but how wonderful to know what it is and what to do about it. That's what kills me. I'm always second guessing my decisions and wondering what more I could or should be doing or if what I am doing is right.

  2. #1 That is a bad therapist. Terrible, terrible, people skills... and... well... that is the job. So, I support you in not going back. Going to a bad therapist is worse than a waste of time... it starts to frame a child's experience of therapy as a negative one. That can be hard to break even if you do end up with the best of the best.

    #2 "And now I know when I go out later, I will be standing in line at the store next to a mom with a child with no legs or something."

    #3 I totally get the social mom interaction stuff. That is me completely. People who can't reveal on that level always then need to label it in other's as *problematic*, otherwise their inability to do so would be the problem. And we all know they don't have any problems ;) So therefore gossipy worthy.
    That's what I tell myself as I cry myself to sleep anyway...

  3. Dude. Downs kids are typically HAPPY. like, all the time.

    I know that's probably a gross generalization slash stereotype and of course they come with their own set of serious issues BUT all of the families I know with Down's kids rave about "their little ray of sunshine" or "how much joy they bring to the family" blah blah blah...

    just sayin. ;)

    I look forward to the Tufts evaluation (for your sake!). Hopefully that will at least point you in the right direction.

    And oh yes. I totally get the "insurance not covering the right people" problem. It used to make me really angry and now it just makes me sad.

    Sometimes when we make the tiniest bit of progress (like last night. We got Luke to taste a TEENY bit of meat with no throwing up and no tantrums. wooohoo!), and then I stop and I look at Aaron and I'm like, "REALLY?"

    Anyway. love ya, good luck.

  4. HI Robin, Mrs F and Katie-
    Thanks so much. I have not responded because I have come down with a massive cold and have a killer headache. Hmmm...stress related?

    I stop and I look at Aaron and I'm like, "REALLY?" LOL...this is how spend our lives, too.