Quick update Neuropsychological Eval. Results

I don't have the time or energy to really get into it right now. We haven't talked to Murphy about the results yet and I don't want him to see me blogging about it before I even talk with him. The only thing he does not know about or understand is the PDD-NOS. I am not sure how to approach that yet. I need to get more well versed in it so I can explain it to him in a way he can understand, without making a big deal out of it. It doesn't change who he is...but it explains a lot about him.

Oh, here's the Neuropsychologist's pre-diagnosis of his Articulation Disorder. I don't consider this confirmed at all. She apparently did some research and although she is not a Speech Therapist,she believes that Murphy's "clear and pronounced British accent" suggests this: "Foreign Accent Syndrome," a rare condition typically precipitated by stroke or traumatic brain injury but also reportedly seen in people with migraine headaches, conversion disorder and multiple sclerosis. Her words. I take that with a grain of salt. He is going to have a Speech & Language Eval this summer at Childrens Hospital, but he really does NOT have a pronounced British accent. He does have an interesting way of talking. But Foreign Accent Syndrome? I found that truly amusing. Got to get back to the puppy and the boys.

Just a cut and paste from facebook:

Confirmed diagnosis: ADHD/Impulsive Hyperactive type, Anxiety Disorder, Sensory Integration Disorder and Autism speaks over in our neck of the woods, PDD-NOS (extremely high functioning.) Oh, and he got his school report card today--all A's and 1 B+. Very interesting meeting and there was no parental blame at all.

Fat Ass...not me this time

Murphy just called Tom a 'fat ass' in response to Tom telling Murphy that he is not to talk(there was a reason obviously why Tom said that)...Murphy replied "Neither are you, fat ass"...said so swiftly, so quickly in that incredibly adorable voice that he still has.

My response? I actually burst out laughing.

Then I said "Murphy, that is not appropriate."

And then I laughed some more.

Shorty Gets Fat

You know what would be fun? A blog dedicated to getting fat. It is so much easier than losing weight. You could show photos of all the gooey, fattening food you ate. And show progress photos of one's ass getting bigger and bigger. You'd get excited when you went up in size and say things like, "Look how tight my jeans are getting. Yay me!"

I will be back with more posts in the coming weeks as the next 2 weeks are big ones around here. We have the 5 hour neuropsych eval on Thursday and the following week, a second appointment with the neurologist. We could get a more definitive diagnosis or lack thereof in the next 2 weeks. Murphy has not had any of the OT, PT or speech/language evals yet, but really the only one that concerns me is the neuropsych...the other ones are not big deals. He is getting referred for those for his bad handwriting, toe walking and his British sounding speech. Those issues are not the things that turn this house upside down. We got him a net book for typing, he will have well developed calves and really, who doesn't love a respectable British accent?

In the meantime, I have got to put a stop to NOT taking care of myself better. I quit the gym, cancelled Weight Watchers, stopped tracking food and have gotten back to wearing a version of my "uniform" daily (jeans, some kind of black shirt and Sanita/Dansko clogs) without any kind of accessories because I just don't have the mental capacity to care. Yet, I do care down deep inside. I have been doing some work around the house that has been really satisfying. Like pulling up rugs in 2 upstairs rooms and painting floors...yes, sounds weird, but this house is over a hundred years old and it is historically accurate for the wide pine floors of this style house...Actually, the real reason is that it only costs a can of paint and I am impatient and do not want to wait to have someone put down new floors. Not that we could afford it. We can not have them sanded and refinished because the floors are so old that the prior paint on them are full of lead. Plus I kind of have an addiction to gorgeous rugs. Downstairs we have unpainted wide pine floor with Tibetan rugs I had bought at Yayla Tribal Rugs in Cambridge, MA prior to having kids.

Yeah, so anyway, spring weather is coming here and I know I am going to be disgusted with myself as I pull out warm weather clothing (which more than likely will be a Spring version of my "uniform"...some kind of black short sleeve shirt and jean capris) and face that I have let another year go by without losing the 45 pounds I gained about 6 years ago. I know that the best thing I could do for my family is to tackle this issue so I can feel better about myself. Yet, I work on it for a little while until I don't at all. Maybe I am enjoying this house "work" so much is because it has a beginning and an end...with a result that you can see and enjoy rather quickly. And then 'issue' is over. Don't like that rug? Pull it up. All done. The rug is not going to creep back onto the floor. I guess having body/food issues is better than having a drug/drinking/gambling problem as it does not affect all the people in your life as much. I just feel like I don't have the room in my head to deal with Murphy (and Jack since he is affected by being the sibling of a brother with challenges) and deal with 'fixing' myself. I go to a therapist once a month that only deals with parenting Murphy. I feel like there is no me and that no one in my parenting circles where I live can really understand how our life is like with Murphy. There is no carefree "hey, let's go out and do something" around here. Tom and I don't even spend any time together when the kids are in bed BECAUSE I am in bed with Murphy. I am certainly getting more sleep and reading more. Okay, I have to stop since this is totally making feel sad. My life is fantastic compared to what it could be. I don't even need to give examples. Not in Japan...enough said. I know no one's life turns out exactly how they had hoped. I just wish I could eat at the dinner table with my family. We used to be able to when the kids were really little...before the sensory issues took over for Murphy. But that was when they were so young and dinnertime was so crazy anyway. I had been waiting for the time when we would sit at the table with a nice wooden salad bowl and the same meal being eaten by all and we could actually talk to each other about our day or whatever. I don't mean perfect...it would have the normal family stuff going on. That is all I want. Just to be a little more normal.

Well, I have to go. Murphy wants to go upstairs to get something and needs me to go with him. He is 9 1/2 and he can't/won't go upstairs alone. And believe me, it is not a matter of us just making him. Believe me.

Alright, over and out.

My Greatest Fear Was Not Realized. Sort of. I guess.

I just needed to cut & paste the following from my facebook (I have one, but am hidden so if you want to friend me-wow, that sounds really stupid coming out of my 42 year old mouth--let me know and I will have Tom 'un-hide' me and figure that out)here for a start. I need to make a complete post about our neurologist appointment last week with Murphy.

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And to think I was afraid the Neurologist was going to tell us it was nothing.

Let's see. What isn't there is really the question. Diagnosis's so far: Anxiety Disorder w/some OCD, ADHD, Sensory Integ.Disorder, Articulation Disorder (really? wth? that's last on my list to 'fix'), deferred diagnosis: PDD-NOS (pervasive dev disorder-not otherwise spec.), which is the autism spectrum & a Mood Disorder (won't be an issue once he has some of the other stuff worked on. I'd be irritable, too, if I had 9 diagnosis's. Doctor agrees.) Oh yeah, Agoraphobia, which should clear up once some of the other stuff is addressed. Doctor ordered OT, PT and Speech/Lang evaluations. Of course, the Neuropsych eval is to be first! And the Cognitive Behavioral Therapy...yay! And bloodwork to test regular stuff, Iron and thyroid function. Can't forget that I am to set up an appt with an Orthopedist to address his toewalking. We are to start with the Anxiety/OCD, then the ADHD & then I guess go down the list. Getting all of the appointments, actually getting a child who won't willingly leave the house to go and figuring out if any of this will be paid for thru insurance is really difficult. Plus, non of these doctors/appts are near us. Crazy times ahead. Well, apparently he is not 'just an asshole';). I got to keep a sense of humor. I mean, Agoraphobia, really? A triple A diagnosis of Anxiety, ADHD & Autism? This is a kid who got all A's on his report card, is hilarious (when he is not being a jerk or yelling at me because I yawned or chewed food near him) Kids like him, he just doesn't care to interact with any of them--especially outside of school. And after the Doctor told us to get a Speech/Lang eval for M, Tom and I realized we have to get Jack in for one because he is the one who REALLY has an issue there--motor processing/language. Yup, everyone thinks both of my kids are British because they speak with an English accent I guess. At least that is what I am told.

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Also, after being on the phone with our insurance company for an hour, I got the answer to one thing on my list crossed off, but had to add like 12 more things to my list...all before I can actually get any appointments set.

I do have to say that even though it was emotionally filling experience, I felt hopeful for the first time in a long time. I felt like my hard work of trying to figure out my boy and get help was going to pay off.

This definitely deserves a more in depth post.

altered vista

"And sometimes the only way to move forward is to let go of all our cherished ideas about the way things 'ought' to be, so that we can begin the work with things as they are."

~Katrina Kenison, "the gift of an ordinary day"

I struggle, but work on this each day.

Really, I work on this each moment. We never have a bad day here. More like a series of bad moments. Sometimes the bad outweighs the good. That is usually the case. But we keep trying. It will never be how it 'ought' to be. I mourn that. I struggle with that. I cry alone on my back staircase or in my car over this. I allow myself those moments because I do know how fortunate my family is. Oh, how it could be so much harder and tragic. But I need to allow myself to feel fully so I can begin the work with things as they are.

I love that little guy.

Even when I say I hate him.

Especially then.

My sons are my life's work.

Epiphany

It's not the clothes that make me look fat. It's the fat that makes me look fat.

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.