Its been awhile since I've written an update on our lives, so I wanted to touch base and let everyone here know whats been going on for us. This forum, and the people here were with me every step of the way for years and I hope you all know just how special you are to me. :) Mods, I realize this could also fit into the unshooing forum but I wanted to reconnect with the special needs parents. :)
We are embarking on a new adventure for all of us. One that we wanted to do all along, but somehow it got lost in diagnosis and paperwork, appointments, IEP's,.. and it took something really big to snap me back to reality and make me remember what my real goals were as a mother.
Ivy is diagnosed with Asperger's, ADHD, Anxiety Disorder NOS, and a mild cognitive disorder that affects her short term memory. She was in 3rd grade this year, and failing half of her classes. In particular reading and writing. I fought hard to get her support and help at school. We had meetings twice a month, an autism consultant on board, OT, speech, both teachers, a case manager and an advocate.. I fought hard and even was able to get her a one on one aide. We were hoping it would help with her organizational skills, and the social parts of her day. She had a lot of trouble being bullied, and she was in tears every single day. Unfortunately the aide wasn't much help for us. Instead of supporting Ivy and helping her, she nitpicked at everything she did. The chart came home with things like, "Ivy had a hangnail." No joke. If she didn't want to put her hair up that morning (her bangs) it would be in the chart because she "played with her hair" and it was "a distraction." I felt like she was under a microscope every second of the day and somehow I was supposed to control what she did and how she did it, from home. They started changing her behavior chart to fit what they wanted, adding in that even though she met all her goals for the day.. she was "rude." and "mouthy" or "unkind" or "too fidgety." Somehow she was always not quite good enough for them.
One day the notebook came back and said that Ivy refused to wear the weighted vest. The aide wrote, "Up until now I have always required her to wear it because I believe it helps her focus better." Excuse me? Required? The weighted vest and pressure vest are things we have used with her since she was 2 years old. She LOVES wearing it. Over the past few months I did notice at home she wasn't asking to wear it anymore, and when I offered it to her she would refuse it. I just thought she was going through a phase and she'd wear it when she wanted to. .... turns out she was refusing because she was literally being forced to wear it at school. Punished by losing her recess, or missing out on fun time with the class if she didn't wear it. She had been begging to not wear it for months and I hadn't known. It was a tool they could offer or suggest to her, and thats it. Nothing more. Just like the chewy she had, the pencil top, the wiggle seat... all of them were never forced. The weighted vest and pressure vest should never have been forced either.
I called the school and I also wrote back in the notebook. I stapled a letter I had written to them. The next day the letter was removed from the notebook. When I spoke with the case manager at the school I was VERY clear that it was not supposed to be forced on her at all. She seemed confused and said well what should we do? how many times should we suggest it? I said they could suggest it a few times, but that if she said no to drop it and let it go. ...
The next day she flew off the bus screaming and yelling, "I didn't have to wear it today! I didn't have to wear it!!!" she was so happy. I was glad for her, and then sad that something like this happened at all.
The notebook was filled with things like "Its my belief that she can't sit correctly unless she is forced to wear the vest." and the best one, "She isn't the same girl. She needs to wear it!"
I explained to them the best I could that the Ivy without the vest, IS HER. Yes, I have no doubt that it does help her, but thats not the point. In one sentence they'd tell me they were preparing her for 4th grade and that she has to learn to do things on her own, then the next they take away her choice to choose an appropriate tool. There was no talking or explaining, just them forcing her and threatening her.
a few days later Ivy told me that her aid brought her down to the OT and they spent the entire time grilling her about how she has to make the "right choice." "Yes its your choice if you want to wear the vest or not, but theres only one good choice. only one right choice. The choice to wear it. Now promise that you'll wear it tomorrow. Say I promise." .... my daughter said she eventually mumbled that she'd wear it, but intended on refusing the next day.
Her reason for not wearing the vest? There were several. She's almost 9 years old and kids were making fun of her. It was also uncomfortable and hot, sometimes she really didn't feel she needed it, and after being told she HAD to wear it.. it became something she fought against because the choice was no longer hers.
They took a tool that worked well, and they ruined it for us. And thats when I realized I didn't have it in me to fight any longer. They had given me everything I asked for, but clearly they were just going through the motions and not really caring about what they were doing. They wanted her to conform and that's all. Anything else was just to comply with the law and appease me.
I kept her home from school and filed our intent to home school that week and we've been happily at home since then. The school sent me a letter saying they got my notice and just wanted to say they aren't obligated to provide special needs services anymore.
Piper had half her evaluation done, odin is also doing one. wita Pdoc,.
Anyway, I haven't updated in awhile. awhile od I want
Autistic pagan mama with five kiddos on the spectrum, learning through living life.
I wasn't on the special needs forum when you were, so it's nice to meet you. You and Ivy have been through a lot! You have really worked hard for her and endured a lot of frustrations. I'm glad to hear you have found a resolution that works for you, that keeping her at home is working. Good for you!
1 me + 1 hubby + 4 kids + 5 goats + 3 pigs + 3 dozen chickens + 6 ducks = 1 crazy place
I remember you. It is awesome that you were able to put her needs first, but unfortunate that the school didn't. We are now homeschooling too. I am often still surprised at some of the things dc says had happened and I never realized. Don't beat yourself up over it, but enjoy what you have now!
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