How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Friday, January 9, 2015
6 Months Later
Y'all, really, 6 months since I posted? That should be a punishable offense. What can I say? Life with 3 kids, a full time job, and homeschooling is busy. Homeschooling? Yes, we are there again. We made the painstaking decision to put the kids in our home district this school year. I began meeting with the special ed department back in May to be sure everything was in order by the time school started. What a waste! After almost having to get an advocate to jump on board I finally got a meeting scheduled with the special ed teacher, Anna's teacher, the nurse, and the principal. I went into the meeting just knowing things weren't going to work out. Much to my dismay Kenneth and I left there feeling hopeful. We bought the school uniforms and got everything in order for the first day. I pick Anna up on the first day and she tells me her day was OK but that she didn't get to eat in the lunchroom with the rest of the kids and that upset her. I decided to give it a few days and see if things changed. They didn't. A week into the school year and I went up to the school. I was told that this was being done for Anna's safety to ensure she didn't choke. Apparently kids are less likely to choke when they are isolated (insert sarcasm). I explained that if someone was with her 1:1 in a classroom to eat then someone could be with her 1:1 in the lunchroom to eat. They compromised by letting her take a friend to be isolated with her. Finally they moved her to the lunchroom after 2 weeks. I was still irritated about that when I walker her to her class one morning to find a huge red sign posted outside her classroom door that stated "Child in this classroom has seizures, meds in nurses office." OK, so my teacher friends have explained the necessity but I still don't see it. First off, not every person who walks in the building needs to know. Second, if a child has a seizure shouldn't getting the nurse be common practice? Third, Anna wears a medic alert necklace. Lastly, how about some communication? Apparently the PE teacher wasn't even aware Anna had epilepsy until she saw Anna's necklace. They could explain it away all they wanted but to me it was a poor way to cover up a lack of communication. If a sign is so necessary then place a "code purple" sign outside the door and educate what code purple means. How hard is that? So I let that go and was willing to move forward. The last straw was when I picked Anna up and she got in the car and began crying. She was telling me how her teacher was rewarding the other kids with gummy bears for getting correct answers. Anna didn't get any gummy bears because she couldn't remember the sounds the letters make. I was lived. It took us years to teach her the letters and they weren't 100% mastered and I had told the school over and over that she was behind. Instead of trying to meet her where she was they thought it would encourage her to hold her accountable for information she couldn't possibly have known. If it took 4 years to learn letters then I'm pretty sure the sounds will not be mastered in a matter of weeks. Then I got to Carly's school to pick her up and she was in tears because some girls were throwing spit balls in her hair and stealing her school supplies and her food at lunch. They couldn't stand that my sweet pretty little girl has it together. That's when it happened. I snapped and realized this was not best for the kids or our family. I discussed it with Kenneth and we sat on it for a few days and kept the kids home from school. The decision was made, we pulled them out. We have been homeschooling since. We are still working through different types of curriculum but we are getting there. Eeeeek. Enough about that. I don't know if it's because she has been home or because the antibiotics are working or what but Anna has had only 1 cold and 1 UTI since beginning the prophylactic antibiotics. She has been healthier the past 6 months than she has her whole life. We have tried to be careful about not going around those we know are sick but I'm trying desperately not to instill a sense of germaphobia into her or the other kids. She is still dangerously thin but continues to eat by mouth what she will and then is tube fed at night. So far no aspiration issues. I pray that all continues. In other news, Carly decided to try out for the Nutcracker this year in the North Texas Festival Ballet. She was chosen to be a Polichinelle (Big Buffoon). She really enjoyed the role and the work that came with being in her first production aside from yearly recitals. She has also recently joined 4H and is learning to sew and cook. Her dyslexia makes reading a challenge. She can do it and does plenty of it but really excels in things that involve the other parts of her brain. I want her to learn about the things she enjoys because it fosters a love of learning instead of the hatred she was developing in public school. Gabe. He's Gabe. He's strong willed and cute as ever. His imagination never ceases to amaze me and tonight he learned how to microwave mini pancakes all by himself. Not too shabby for a 3 year old. Wow, I'm sure a billion other things have happened in the last 6 months but at least I hit the highlights. I hope you had a Merry Christmas and a Happy New Year!
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