Wednesday, October 21, 2009

Get ready...

This is your warning...this post is going to be full of anger, frustration and possibly even a swear word.

As many of you know I have been fighting with Malachi's service coordinator since day one. She is the one we who organizes all of Malachi's evaluations and write his IFSP. Our first IFSP was January 13, 2009. There we all decided Malachi needed weekly OT and PT, monthly speech and FVT.  We met again in April to all weekly DT into the mis. Everything with OT,PT, DT and FVT has been great! We love our therapists, they show up when they say they are (with one being late most of the time) and I think they have done an amazing job with Malachi and have been nothing but helpful! However since January, Malachi has has only 3 ST sessions and 1 evaluation. Normally I am a pretty easy going person however today when I called to schedule Malachi's October ST session (they are supposed to call me, but like usual I NEVER got a call and being the busy mama I am, I completely forgot to call them but can you blame me? we have 3 therapies a week, plus sign language class and a play group no wonder I forgot) she told me that her next available appt was Nov. 6th which is a friday and doesn't work for us. She told me that J (our ST) is only available in the mornings, which doesn't work for us, since all of our therapies are in the morning along with play group and sign language. I asked if we could have 2 appotments in November since we will have missed our October appt. and she told me no. WHAT THE F?? (don't say I didn't warn you!! I'm not the swearing type, but seriously people??!?!?) I hung up without scheduling an appt. I have told everyone I will go where ever I need to, to get Malachi therapy. Yet they continue to send me to the one place I lothe (RMH) more than anything for less then poor therapy. I refuse to go there any longer, Malachi deserves better.   In Malachi IFSP , which is a LEGAL document, it states that he is to get monthly ST...and he is not and that makes me pissed. So, I have placed a call into his service coordinator, a not so nice phone call at that. She is out of the office today (go figure this lady has more days off then anyone I have EVER met) so I am giving her till tomorrow at 2 to call back, if I dont hear back from her....you dont even want to know what is going to happen. I have already gotten a lawyer in on this before (thats how we got to the top of the list for therapy to begin with) and I will do it again if need be. Malachi has a right to these therapies and since he can stand up for himself, it's my job to do it for him. I will fight tooth and nail to get him what he needs and deserves. Grrr, be scared of me, very scared! If there is one thing I have learned having a child with special needs, it's that sometimes it takes a little force and a squeaky wheel to get something done. I am off to read my rights and Malachi's IFSP. It's time to update my memory so I can fight with everything I have....ready or not, here I come!!

6 comments:

Tara said...

GO momma!!! :)

Cammie Heflin said...

Fight fight fight! I don't like that you have to but I guess it has to happen huh? Malachi is beautiful! I'm so glad you commented on my blog so I could "meet" you!

Anderson Family said...

I have been so busy this month I am just now trying to catch up on blogs. You have been busy as well - hope all goes well tomorrow as you prepare for battle. Your pictures of Malachi are awesome at the garden. You are doing great at your 31 for 21 posts! I went back and read them all - you are a great mom for Malachi!

Emily said...

You are doing wonderful things for Malachi! Hang in there my friend. I wish you luck...

Stephanie said...

You go Girl! Speech Therapy in Illinois is horrible - not the therapists themselves, but the shortage. University of Chicago right now has ONE therapist - both inpatient and outpatient - doing both speech and feeding therapy. La Rabida has one.....we have had some luck with Rehab Institute of Chicago. We can only get up there once a month, and it is a pain in the #@$ to get downtown (especially when Oprah blocks off the streets. LOL!), BUT the therapists are wonderful. It is worth it. Let me know if you want the info, I can get it to you.

Don't stop pushing! :)

Steph and Christopher

Will, Amanda, and Bryson Bosco's said...

WOW...and some people think equality is improving in this nation. I dont think so. Keep up the GREAT work Erin. I am always a listening ear if you need to vent over the phone or whatever! See you tomorrow to forget all of this for a little while!!