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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Tuesday, April 9, 2013

Frustrated!

I'm starting to get really frustrated with our Early Intervention program. They keep saying their physical therapist will "pick her up on her caseload". But nobody can tell us a timeframe.

Lauren has significant low muscle tone in her legs, ankles and feet. She does not  bear weight at all. Shes 14 months old. She needs physical therapy!

We were stressing about how to pay for private PT when we had our insurance miracle. So today I called the hospital to update her insurance info and the pediatrician's office to leave a message with the doctor that we now need a referral to their clinic.  Lauren was evaluated there when she was a tiny baby and didn't qualify because she wasn't delayed enough. Her pediatrician said that won't be a problem now, which is great!

I'm not expecting EI to provide some crazy miracle where she will start walking by age 2. But I would like to not be strung along and keep being told "later". I'm starting to feel like while her EI teacher is extremely nice and I really like her as a person, she isn't really doing a whole lot for Lauren. I feel like my frustrations with Lauren not bearing weight on her legs and that she can't even keep her legs together enough to crawl WITH Hip Helpers on are not being acknowledged. I'm frustrated big time. Part of it is just that Lo is not a super motivated kid. She's snuggly. She'd rather clap and wave at something she wants than go and get it.

And I'm starting to get the feeling that our IFSP meeting for next fall is going to be significantly less fun than last year's. I truly do feel like the awesome women running our EI program WANT our kids to succeed. But the funding just isn't there to make it work. I would hazard a guess that the PT caseload is totally full for this year and that she might get it next year. But waiting that long is not the best option for Lauren. So hopefully her insurance pulls through!

2 comments:

  1. I don't think you are alone. Honestly I felt like EI did nothing for us in terms of PT. We did outpatient/private PT starting when P was 2months old . Our insurance at the time covered it with a 10% copay so not really bad at all.
    We have a friend whose little girl has spina bifida and they opted to do outpatient/private PT as well because EI was just kinda giving them the run around and almost made it seem like since she wouldn't progress quickly it was a waste of their time!

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  2. Amen, sister! We are now doing private PT and ST, while we have our EI specialist/case manager and EI OT. I have liked each of the staff we have had through EI, but they lost their PT and didn't get a replacement for 8-9 months. We gave up on waiting after the third month.

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