Compensation for Suffering

Basically I think you need to post everyday and then publish a book out of your posts and rake in those royalty checks (you need SOME sort of compensation, heh.)

~From my dear blog friend, Katie

Dear Katie,

I like the way you think. I said something to that effect at the pediatrician's yesterday. I said, "Murphy better turn out to be some kind of Bill Gates and buy me a mansion when he gets older...especially if he is living in my basement."

Love,

Julie

PS. I wonder if my comments at the pediatrician's make it into my child's file. If so, I hope they at least clarify my tone is loving sarcasm, not just plain mean.

I make myself laugh

This just makes me crack up.

Said on Thursday, October 14th :

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.

Said on Friday, October 15th:

Yesterday was the day I cried at the hair salon.

Oh this is cracking me up, too. Tom said, "Maybe I have Asperger's." (He doesn't. I'm an expert. I have a lot of books out from the library;) .)

By the time this whole thing is played out, Tom and I are going to have a list of diagnosises for ourselves.

But none for Murphy.

A Very High Tolerance for Weird

You should have seen me at Murphy's Wellness visit at the pediatrician's. It was his 9 year old appointment. Just a regular office visit, but with a side chat for the doctor and I to pass off paperwork for him to fill out.

Murphy took one of those Vision tests in which they stand at the end of a hall and have to read off that Paper on the board with the letters. Well, I am watching Murph and he totally screwed it up. The nurse is like 'um, his vision is 50/20' or something like that, take him to the eye doctor, he can't see, ect. I looked at her & was like "Are you serious? Now I need to add this to the list?" I'm like 'his eyesight is the least of our problems." I'm sure that wasn't the response she expected. Plus, they had some person observing the appointment. She said maybe if that is cleared up, everything else will. I looked at her and said, "Uh, no, that is not going to happen." I then said, "Could you please retest him after his appointment? Let me tell him he needs to actually look at the board and try to see what's on it." I know Murphy. He was totally guessing at the letters because he wasn't really even looking at the board. We did it after the appt and he got 20/20 vision. I told the doctor and nurses that I could now cross "going blind' off the list of issues. I then proceeded to ask them if I appeared as crazy as I sound, which made me appear even crazier.

The doctor and I both agreed that we hope to find something to diagnose Murphy with, not for the need for a label, but so we can know that it is something more than he is simply a "pain in the ass." That was what his doctor actually said! That is why I love this doctor. We have the same kind of sense of humor. I may have said something like 'Yeah, if isn't anything, then he's just an asshole." Keep in mind that this was all being observed by some woman for learning purposes or something. I told her 'sorry that she got such an interesting appointment to observe'. I told her I really do love my child.

I had a separate meeting with the doctor as well. He gave me some info on an autism test--Autism Diagnostic Observation Schedule. I am to call the place Monday to get an appointment for this as we put together the paperwork for the big eval.

We don't know if it is indeed Asperger's or what, if anything. In explaining why we waited so long to even consider this, I told the doctor and assistant that Tom and I have a very high tolerance for weird.

I love my wild, explosive, weird little kid.

I really do.

PS My head is killing me. Bad headache, bad cold. Somehow I managed to write up this post no problem, but my responses to comments will be limited...which actually means I will write a ton. This post was originally a comment that went on so long that I just cut and pasted here. Seriously, head is killing. Must stop.

The Day I cried at the hair salon

The boys had haircut appointments after school. I prepped Murphy on this for days.

We got to the place and he decided he was not going to get a haircut and he would not get out of the car. He is 9 years old. It is not like when you are dealing with a crabby 3 year old and you have to pull them out of the car. I can't get him out. He keeps locking the doors. I am only 5 feet tall so he is not that much shorter than me. Plus, how crazy it must have looked for a mom to be trying to get a non-toddler to get out of the car. We were parked in front of a coffee shop. We must have been interesting entertainment.

Anyway, I had to leave him in there to run up and bring Jack into the place. The hair salon people are like 'Looks like you are missing one child." I look at them and say, "Murphy won't get out of the car." Then I burst out into tears. Like sobbing. And I am so embarrassed and even more embarrassed for Jack because who's mom does this? He is in 5th grade in Middle School. They don't want their mom to embarrass them. And I am crying. And laughing. Because I look like a freaking nut. Jack suddenly got incredibly interested in some burning candles at the place and would not look over at me. The women at the place were awesome. Most of them are all moms and they have known me for years now. It is a swanky new location and it is upstairs so I keep looking out the window down at the car to check on Murphy. And to make sure no cops have come by to check out the kid alone in the car.

I go back out to the car to check on Murphy. I clearly have been crying...plus, I never really stopped. Murphy, completely unfazed, asks me why I took his backpack. Then why did I take so long. I tell him, Well I burst out crying. I can't remember if he even asked me why. I gave him his backpack so he could work on his homework. And I sat in the front and cried. Is that an Asperger type response? I mean him, not me.

After we got home, he ran into the house because he had to go to the bathroom. He yelled out to me because he needed me for something. I was getting all of his stuff...he took his shoes and socks off in the car. He does that a lot. Because I did not drop everything and run to him, he called me a bad word. I am so embarrassed that my sweet little boy called me this name that I can't even say it. This isn't the only part of him.

I sat in the car and sobbed and sobbed. He ran out and gave me a hug and said he was sorry for treating me so badly. It was sort of a canned response though. Like he was supposed to say it. He said it and then said something else completely off topic. Then he ran back in to do his homework.

I can't even talk about this whole incident with him because he does not seem to really get what was not okay with it. I don't know how to fully explain this to someone who does not live this. It is like he doesn't remember. That was then, this is now. He would give me a perfectly good explanation if he even acknowledged it.

Yesterday was the day I cried at the hair salon.

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.

Somebody come and play

I had a great conversation this morning with a woman/mom I was friends with back when Murphy was in preschool. I had not seen her in a few years because her kids were in a different elementary school, but are now at Murph's school. We will call her Mom 1.

Back in preschool, I thought it would be the beginning of a wonderful friendship. We just seemed to really like each other. It was great until Murphy decided he did not like her son. And told him so. As in "I hate you." And then added in case there was any doubt, "No, really I do."

Though the Mom 1 was low key about it (I felt like a complete ass), our friendship petered out. I mean, back in those days, you did play dates with the mom and kid. It was just awkward.

Anyway, I saw her this morning. We talked for a bit. I thought it went really well and actually felt really, really happy. I was so pleased that I called Tom at work to tell him about it.

At pick up today, another mom--Mom 2-- who knows both of us, kind of pulls me aside and asks if everything is going okay. I know this woman, but not at that level. Then she mentions that she saw Mom 1 today, and that Mom 1 said she was concerned about me...that I seemed frazzled with my life and with Murphy, that I seem to be overwhelmed with Murphy. I tell Mom 2 that I'm fine and that my life is no more overwhelming right now than usual. But I feel like she is looking at me funny. I say, you know me, I am just hyper and that Mom 1 must have forgotten that about me.

Now I don't feel as happy about the 'reconnection.' I feel weird and awkward. Like I can't just be myself and keep it real without people who clearly don't get what it is like to raise a child with Special Needs thinking I am dealing well.

Our journey--fucking journey--is now including much more than ADHD. We would have been lucky if that is all it was. I have loads of paperwork to do and to pass on to the pediatrician and school. I have more calls to the insurance company and the company who 'handles' the mental health portion of our health insurance. Then we will wait at minimum 3 months for the evaluations to begin. The Big Time evaluations at the hospital, not the ones they do over at the school. Oh, plus most of it is NOT covered by our insurance and so far the costs are up to 8k. We have no money. Nothing. Nothing saved for college. No hidden savings anywhere to dip into. We do have credit cards though. Waah, waah, waah. Listen to me rant.

I just felt so happy. Now I just feel squashed. Like, really? Really? This is how she perceived me...as someone who seems frazzled/overwhelmed and that she needed to share that with someone else. I think I act very much like 'Go with the freaking flow', especially in public. I act like "Hey, he is who is". I crack jokes about my situation. I mean who loves to hear that your kid spends recess by himself reading at a picnic table. And that is what he wants to do. He could give a shit about hanging with the other kids. Or as he put it, "Mom, they think of me as their friend, but I don't think of them as my friends." Because he does not care, not because he wishes to be included.

Everyone just wants to be understood, you know? And I truly understand that others not in our situation can not understand fully or really at all what our reality is. And that is okay. I know that. But I hate that someone is now "worried" about me. I also can't tell you how often people say to me "He looks fine to me whenever I see him." What does that even mean? It is an invisible disability.

The psychologist said Murphy doesn't fit in anything cleanly (who does?). He has attentional difficulties, sensory issues, defiance issues and oh, the new one, spectrum characteristics. He is brilliant, but not functioning. But he is functioning in his own way. I now have about 12 books out about Aspergers. And yet, he doesn't really fit that fully either. He is special in multiple ways! Hurray!

I got to say that Tom and I laugh our asses off all of the time. We have such a great sense of humor about life and OUR LIFE in particular. Maybe that is why I seemed overwhelmed? Because I tell it like it is, crack jokes and such. Mom 1 is British. Tom thought maybe she isn't used to someone who shares so much (although I DIDN'T this morning...I mean, it was a sort of short chit chat. I wasn't acting like it was therapy chat or anything.)

Wahhh....I will shut up now and get back to this life of mine.

Living the dream

Cat pooped on the floor, child barfed on the huge Tibetan rug in the dining room, cat ate some of said barf and I literally had just told Tom, who is away for work at a resort like setting, that I was 'living my dream' and I was serious(I was trying to be upbeat about my crazy life.) How's that for a kick in the mother-effing ass.

Good morning to you