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IFSP Meeting...ugh!!

Posted by on Apr. 9, 2013 at 2:37 PM
  • 4 Replies

Well, my son's 6 month IFSP meeting was today (he's 20 months). The whole thing was a complete disaster. He even had a lovely poop explosion right in the middle of it which ended up all over his clothes and on the floor, followed by a melt down because he didn't want to get changed. I had to stop everything, put on a TV show to calm him down, and drag him into his room kicking and screaming and full of poop. 

He was recently evaluated and NOT diagnosed due to being "too young and too delayed". They assured me that this would NOT affect his services AT ALL. His therapists all reassured me that this was the case as well and even questioned why I'm fighting for a diagnosis because it "won't make a difference either way". Well, it turns out that I was right, and his service coordinator confirmed that a diagnosis does in fact affect services. As a result, they are only giving him about a 2-3 hour per week increase. This will total about 4 hours per week. I don't know the exact amount because two of his therapists filled out their paperwork wrong and they have to fix it first! 

At first they were telling me that increasing too much would be "too overwhelming for me", so I went ahead and made arrangements with the YMCA, where he spends 4 mornings per week, to have them allow therapists to come in and work with him there. That way I was able to request the maximum amount of hours without there being any issues with that. That didn't seem to make a difference though. 

The only goal that I mentioned having was introducing PECS and transitioning from his choice board (photographs) to a touch screen app. I was blunt and said that I don't expect my son to start talking any time soon so I think that it would be wise to get a jump on alternative communication methods. His speech therapist was not happy with this, but basically told me to tell her what I want and she will do it. Nice to see that we're on the same page :( 

After his therapists left and I was left alone with his service coordinator, she agreed that ABA therapy would be in his best interest, but told me that it is not available here, even privately. She had nothing good to say about the school districts, and encouraged us to leave New York when we relocate! She told me that she doesn't know how I do it, and left. 

Wow.

I'm so frustrated! At least I got a nice confirmation that the services here DO suck even though we're in NY state and that my GUT was right about needing a diagnosis in order to move forward! I'm really appreciative of her honesty though, because she is really the only person I'm in touch with locally that seems to understand that false optimism isn't helping me at all. My son isn't doing well and no one's doing anything about it. But at least she's willing to say that to me. Everyone else just makes me feel crazy. 



by on Apr. 9, 2013 at 2:37 PM
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Replies (1-4):
KatyTylersMom
by on Apr. 9, 2013 at 3:59 PM

Getting a diagnosis is EVERYTHING.  It makes the therapists, schools, and state sit up and pay attention because if they fail to provide adequate services, it will make a judge pay attention when you sue them.  We also had a hard time getting additional hours out of our regional center.  I called a local advocate firm and (free of charge) was told certain things to ask for at our next IFSP meeting or in an email to our Regional Center case worker.  I cannot remember the exact phrasing but it was basically buzz words which said "next time we have a meeting we want it to be in front of the board which decides who receives the services so that we, as parents, can plead our child's case, not just you the disinterested case worker".  Suddenly our hours were approved and we have had 0 hassles ever since (he started at 19 months and he'll be aging out at 3 in June). 

Here is the agency and number I called, even though they may be here in CA I suspect their advice bridges the state lines.  Area Board XI 714-558-4404 ext. 2

mypbandj
by Jen on Apr. 9, 2013 at 4:03 PM

HUGS momma! 

So I guess you are going to proceed and try to get a diagnosis then?

lady_katie
by on Apr. 9, 2013 at 4:26 PM

Thanks! I did try contacting all of the local advocates that I could find, and they were of no help what so ever. One of them even told me to google it. I'll try that number! 

Quoting KatyTylersMom:

Getting a diagnosis is EVERYTHING.  It makes the therapists, schools, and state sit up and pay attention because if they fail to provide adequate services, it will make a judge pay attention when you sue them.  We also had a hard time getting additional hours out of our regional center.  I called a local advocate firm and (free of charge) was told certain things to ask for at our next IFSP meeting or in an email to our Regional Center case worker.  I cannot remember the exact phrasing but it was basically buzz words which said "next time we have a meeting we want it to be in front of the board which decides who receives the services so that we, as parents, can plead our child's case, not just you the disinterested case worker".  Suddenly our hours were approved and we have had 0 hassles ever since (he started at 19 months and he'll be aging out at 3 in June). 

Here is the agency and number I called, even though they may be here in CA I suspect their advice bridges the state lines.  Area Board XI 714-558-4404 ext. 2



lady_katie
by on Apr. 9, 2013 at 4:51 PM

Yes, we already have an appointment for a 2nd opinion booked with a developmental pediatrician that someone on this forum recommended to us. 

Quoting mypbandj:

HUGS momma! 

So I guess you are going to proceed and try to get a diagnosis then?



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