Special Education Approved

The report recommended Nora for special education in reading. Surprisingly she is doing really great in math, which strikes me as odd, since she is pretty far behind her peers in reading. Why does it seem strange to me that in one area she excels and another she is so far behind…?

Since tomorrow is the last day of 1st grade for Nora, this will all start next school year, when she begins 2nd grade. Nora will start by meeting daily for 20 minutes with the special education teacher at our school, maybe one-on-one, but more likely in a group of two. I’m a little confused, as I thought special education wasn’t offered in a private school… but apparently we do have a dedicated special education teacher onsite.

Honestly, that’s all I really know right now. I’m really sad for her. But they assure me that kids are taken out of class very, very often for a variety of reasons, so Nora certainly won’t feel singled out. I know she and many others are already taken out of class daily for special help. And Nora’s teacher tells me the students actually get excited when it’s their turn. And this isn’t for always. We will have goals for Nora, lots of updates on how she is doing, and lots of discussions on what, if anything, needs to change with how and when she receives help. She was also approved to take tests in a quiet room with an adult she feels very comfortable with, as they have found Nora’s shyness is sometimes a big hurdle.

Eric and I talked about hiring a summer tutor for Nora, mainly so she doesn’t lose any knowledge over the next few months. And it’s nice we have a university in town with an elementary and special education major. Lots of great contacts for possible tutors.

Gluten-Free Dinners

Does anyone have gluten-free dinner ideas that EXTREMELY PICKY kids will eat? I’m thinking spaghetti tonight, as gluten-free pasta is easy, although I still haven’t found a brand I totally love. And I have tried a lot. The garlic bread I’d normally serve with it though will be harder. I had a few favorite gluten-free breads I think are good, but they are all just sandwich bread. I could try to make a garlic topping… Any ideas?

Nadia’s Flare = Me Losing Mind

For the past month Nadia has slowly been going downhill. This weekend though was awful. She was angry, aggressive, at times I’d say violent even, toward her sister, defiant, just not my sweet Nadia. And I know she’s not purposely being this way, as she tells me she doesn’t want to be mean. My heart is breaking for her. But at the same time I am losing my own mind. From the outside world she is a badly behaved kid and I am handling it well. Inside though, she is very sick and I am falling apart. I wouldn’t wish this hell on anyone. Thankfully we have in person visits with our specialist in MN next week for both girls. But those can’t come soon enough. I actually emailed that doctor this morning for some advice. If you have any interest in knowing all of Nadia issues, or are concerned about a child you know, read this book. It’s very interesting. Although scary that Nadia has almost every issue mentioned, and Nora has more than half the issues. I really don’t know what else to say, aside from I feel like life is falling apart. We’ve been treating this for almost two years with Nadia now… and currently she isn’t much better than when we started. I’m exhausted. I assume Nadia is too. And while Nora has fewer issues, I feel like her’s are more centered around learning and separation anxiety.

I know a big part of healing is cleaning up our diet. But I feel like I fail most days in that department. This weekend I went through the house and got rid of everything with gluten. The girls are so so picky though. There are some gluten-free treats I can get them to eat, but most of those aren’t healthy. I mean, gluten-free yes, but no real nutrients. This just feels so overwhelming to deal with picky kids that now aren’t supposed to have gluten, dairy, sugar, or yeast. I guess I’m focusing on ridding the gluten first. But even that feels hard.

This morning I asked Nadia’s doctor to consider a longer course of doxycycline. It’s the best antibiotic to treat Lyme and some of her co-infections, although it can be staining to adult teeth which haven’t come in yet. Am I a bad mom to think to hell with her teeth? I’d rather save her brain. Seriously though. We’ve been using a combination of herbs known to kill Lyme and co-infections, but I have a feeling they aren’t enough. I’ll see what her doctor thinks I guess. Antibiotics aren’t great either, more harm to the microbiome, but we can try to help that with probiotics, which both the girls already take. Right now Nadia is on 41 medications/supplements, and Nora is on 34. Some overlap. But it takes me a good 30 minutes twice a day to get all these ready for them to take. And then convince them to take them, as most are capsules I open and mix into some type of food. Which obviously tastes disgusting. I don’t know how much more of this I can do. I know IVIG might help both of them, but it’s extremely expensive, does come with risks, and is invasive, as it’s a 48 hour IV drip every time they need a treatment, which is monthly for some kids. Someone please tell me this is all going to work out…

Onto laundry I guess, and focusing on the last five days of school… Please pray for us, if you’re the praying type.

Food Fails

I’m seriously failing when it comes to feeding my children. I mean yes, they are fed, they are growing, no concerns there. But they are not eating healthy. And we’re supposed to be cutting out gluten and dairy, and they have definitely been eating plenty of both. Not celiac, but still. Everyone tells me children won’t starve themselves. Give them healthy food and they will eat. But I’m convinced this isn’t the case with Nora. I think her issue is more than picky eating, as she is still spitting out quite a bit of chewed food. I’m so frustrated. Meals feel too overwhelming for me lately.

Nora’s special education evaluation meeting is finally scheduled. For the second to last day of school, which is May 19th. I don’t know what was determined, meaning, I don’t know if she actually qualifies for special education services yet or not. That is what will be discussed during the meeting. Why couldn’t they just send me a report to review, instead of making me wait weeks??

Ten days of school left…