Let's hear about how you fought (fight) for your little one - Mothering Forums
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#1 of 6 Old 02-09-2009, 04:30 AM - Thread Starter
 
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I come to this forum (usually lurk) and find all of you mamas such an inspiration. You are endlessly researching, learning, experimenting, experiencing, fighting, challenging, hoping, helping, praying, encouraging--I could go on and on--all for the love of your child. I would love to hear about all of your struggles to get your child the help they need/needed, hear what you've done to fight for a diagnoses or just a little understanding, hear how many trips you've made to a Children's hospital and how many specialists you've seen, hear about that always present feeling so many of us have/had that could never be shaken, that feeling that something was going on with our child. Because I need more than just advice, information, or a link to an article (however great that always is). I need to know that the passion I have for my child's well being is alive in all of us, that intense need to do ANYTHING for our children, and get any and all help possible for them.
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#2 of 6 Old 02-09-2009, 05:31 AM
 
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Well, honestly we haven't had to fight nearly as much as other families because most of Charlotte's issues were so plainly evident (hole in your back will do that), but here are my things just to start things off here.

Before she was born we asked tons of questions and pushed for a vaginal birth until it was plainly obvious it wasn't possible. We discussed every issue with our docs to make sure we were comfortable with the decisions being made.

When she was in the NICU I argued with the one nurse who wanted to give her formula (and I won).

I think the biggest thing I really had to work for was her speech therapy. I knew what she was getting wasn't enough for her and I searched the internet and found the apraxia diagnosis and searched the internet some more to find an SLP who could help her. That turned out doubly well because when we realized she needed and SPD eval there was an OT who worked in conjunction with the SLP who could do that. She has now become an awesome OT for Charlotte.
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#3 of 6 Old 02-12-2009, 02:42 AM
 
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when second son was in third grade, I decided to try a version of mainstreaming. I saw so much progress in him socially, I didn't want to "lose" that. So I approached the school staff about it and they agreed. They put him in a regular classroom and had him take his basic academics with a resource teacher.

Problem after problem. His teacher loved him, the kids loved him, hell everyone loved him; he was a happy sunny guy. But he was a "needy" kid in many respects. WIth only three months in the school year to go, they called me to a meeting. Told me they were transferring him to another school to a special needs class. This I did not mind. I knew it was a possibility our experiment could fail. But I found out the main reason was that the teacher for his class had NO helper whatsoever. There was no parapro, no teachers aide, NOTHING. Here she was with a full class of 15 students and my special guy and she had NO help. I was floored and disgusted. I could not believe she had been discussing her difficulties with the staff and they had basically done nothing until she couldn't handle it anymore (the woman was crying and begging me to forgive her) and then they had the balls to tell me they were just giving up and transferring him out?
They had done NO prep for his presence. Even though I had met with them the previous YEAR and they had all summer to get ready, make their requests from the county for special services, they had done NOTHING. I could not believe it.

THen I found out where they wanted him to transfer to; a school that was a two hour busride away. For a "non-specified" class. He has autism and though I'm sure it was a fine class, he needed to be with someone qualified to deal with Autism.

I ended up taking him out of school for that quarter and nearly a year after. I home-schooled until I found a situation that suited him.

That's just ONE struggle.
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#4 of 6 Old 02-12-2009, 10:46 AM
 
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you can click on my blog if you want more of the story. It's too long to write it all out. But we've fought for him his whole life and we'll keep fighting till he's gone.
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#5 of 6 Old 02-12-2009, 06:01 PM
 
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in a nutshell- 15 months of testing, moving 3000 miles away to afford one-on-one childcare for him, at least six hospitals, a dozen specialists, and an average of 12 appointments per month- we still have no diagnosis. My entire life is consumed with getting him diagnosed and accessing the care he needs. Someday, I am hoping to just enjoy normal mom/kid stuff- but for now, things are pretty heavily focused on his medical issues.
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#6 of 6 Old 02-12-2009, 06:46 PM
 
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It is a constant battle. A battle to figure out what will help Juju. A battle to find someone to help him. And then another battle to get it paid for. Then another battle to keep everyone on track - first a therapist is sick, then another is training, then a therapist quits... I've had the thought that it might be easier to just go back to school and get degrees in PT, OT and ST!!
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