Tuesday, February 22, 2011

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.

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.
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.


  1. Ha! Getting closer to the answers. We had such a hard time diagnosing hubs, I swore up and down it was ADD, but was relieved either way to learn it was PTSD. He's really making progress, so I'm really hopeful Murph will too. He's not just an asshole made me LOL.

    Hugs and yay you for keeping the faith.

    Have you thought about eliminating gluten? I've read a lot about it...

  2. Oh Julie, I wish I could give you a big hug! You're handling all of this so well, and clearly doing as much as humanly possible for your kids. I really hope things get easier for you guys. Keep laughing, lady -- you are amazing!

  3. Progress! Even if it is of the "am I relieved"? variety. I knew a lot of Murphy's behavior sounded so much like Ruby's, so it's with interest that I read about the anxiety- OCD diagnosis. I hope you guys can feel like you are getting some footing under you with all of this soon. Murphy can come hang with us... between Mr F & Kid... we're already living with 99% of his diagnoses! So much fun. Plus, I think I have agoraphobia....

  4. Thanks girls! I have the kids home all week for Feb vacation and as you know, we don't leave the house. Ever. So it has been hard to really get back to this blog!

    Heather, I am glad that you and hopefully everyone finds the humor in me calling Murph and asshole. It some ways it is cathartic to say the forbidden, but sometimes actual truth of what I feel! But God, I love that kid. Yes, I do feel like it is the beginning to answers to help. I am so happy to hear that Pete is making progress. Interestingly enough, I was looking back at something I posted in my old Dirty Pig blog about Murphy and you actually spoke of some stuff about Pete from childhood & school way back then. I have considered the gluten thing, but for now I am going to follow the neuro route and see how that goes. It would be a good question to ask his neurologist though next month.

    Hailey (i am sure i am not spelling your name right...sorry!), thanks for the hug. I think I should use that "I am amazing" as a mantra when I feel like a complete loser with everything. At least it will make me start laughing.

    Mrs F, visiting your house would be the perfect "safe place" vacation! Can you imagine how crazy and hilarious it would be to get all of together with all our issue and whacked sense of humor?! OMG and Ruby could go all boy crazy over Jack, who would be so sweet to her.

    Now I am beating myself up for not instantly having a plan and appointments all set up for Murphy already. And for not having Jack in therapy for living with all the craziness...Oh and for his speech issues.

    Got to go Murphy is practicing the Long Jump in our house from across the room onto the couch. Maybe if he smacks his head hard enough, it will snap stuff back into place. BTW he is watching me while I type this. He wants me to watch him.

  5. I hope I can come to any bloggy meet up that gets set up.....that said I am so glad to hear that you guys are moving forward with all the meetings and appointments-it must be nearly impossible to get all the answers for something so complex, but what an amazing mama you are to push through and champion for your son's health!! Julie, I stand in awe of you!!

    P.S If you want to friend me on FB we'll have to to figure out how to do because I am super secret hidden too....its all much more personal for me there, my family is on mine and then....my boss-why??

    If you want, email me at kikbee at yahoo dot com and maybe we can get together there, I've posted a ton since I can do it from my phone, plus I'm friends with Mrs. F on their so I can't be that bad!!!


  6. Kik!!! HI honey! Definitely will figure out the FB thing. I will talk to Tom at some point. Hope you are doing well. I miss you! Wouldn't it be fun to have some kind of bloggy meet up. Maybe someday.

  7. Julie, I've been meaning to comment on this since you posted. As crazy as all of that sounds, an accurate diagnosis = HOPE! woohooo! And for that, I am so happy for you. (?) Plus, there's the added relief that this isn't on you. This isn't even on Murphy. Let's hear it for screwed up wiring in the brain!! ;)

    I hear you on the insurance stress. I have felt for a long time that our crap insurance was a huge road block to getting quality medical attention. I will hope for the best for you on that front. Don't give up - I know it can be crazy frustrating.

    Love ya Julie. I hope this is the beginning of major progress for your whole family.

  8. Julie, just catching up and saw your post at Mrs F's. Truly, I am with katieo...the relief of having someone tell you what is actually an issue, and hopefully give some guidance for steps on how to correct or live with it in an easier manner is huge. The idea that someone will be helping Murphy is also huge, and that it doesn't have to rest on your shoulders to do it all by yourself is even huger. I'm feel so hopeful for you and your family! We just added an auditory processing disorder to our list... As disruptive as my guy can be, sometimes I am in awe of how well he does, considering all that he is dealing with. Personally I think these types of kids are probably the most amazing of them all...