Tuesday, 8 January 2013

Stepping Into the Ring

We have had a relatively event free month.  All done.  First of all, Jack has not slept more than an hour and a half in a row in the past week and a half.  He has even taken this a step further and will not sleep AT ALL unless I am in the bed with him.  Last night I woke up about 10 times with him.  At one point I found him sitting ON ME reading a magazine. 

We have his IEP meeting on Thursday.  I am a nervous wreck.  I know he needs a full time aid.  I have no idea how to accomplish this.  I am embarassed to say this- however- I need an advocate for him.  He does not have discipline issues, he is not a "risk" to the school.  I need to prove to the powers that be that he needs this aid for attention issues and motor issues- to accomplish his educational goals.  His teacher freely states that he is falling behind academically because he cannot focus on his work.   I have letters from his pediatrician and his private OT.  I have samples of his work from the past few months with and without the aid.  I know this is not enough.  I am doing all the research I can, and unfortunately all of this research has told me I need the advocate.  That I am not going to be listened to.  I am a basketcase.  Advocates cost thousands of dollars. 

We also have our next appointment with the developmental pediatrician this Friday.  Lab results, more tests I am sure, and more meds.  Oh, and before that, Nate and I are going to be videotaped "playing" again.  So that should be fun.  We also have the 8 hour day at the SEED study coming up. 

Thus my post of facebook this morning:

"I have decided I no longer want to be an adult....if anyone needs me I will be in my couch cushion and bed sheet fort....coloring."



  1. You shouldnt feel embarrassed about needing help. I don't have any advice on the subject since Sophie is still much younger and everything Canada is totally different anyway (some better, some way worse)
    I wanted to ask you, I hope you don't mind, I read a post when you described doing some injections which helped your son speak. Sophie sounds very much like your Nate. She is on Gf/CF for over 8mos now but I never heard of those injections. Did you write a post describing them? I couldn't find but then again maybe I didn't look hard enough... If you find time to reply, thanks so much!

  2. Hey, the shots are methylcobalamin- which is an activated form of vitamin B12. I will try to find a post where I talk about it....bear with me

  3. here you go