just some updates

Some things are happening around here and I’ve had a tough time figuring out how to parse it all together in my head enough to write about it.

Here’s a short summary:

We started the girls on a gluten- and casein-free diet, which means I am also on a gluten- and casein-free diet because I’m still nursing. (Honestly, I feel a million times better from it anyways as long as I don’t overdo the sugar.) It’s not “scientifically proven” but I hear a lot of promising anecdata, and I already think gluten is a bad thing, and I think at least Chicken reacts to dairy due to her eczema problems, so we’re giving it a try. Honestly, I don’t miss it and the girls seem to be accepting almond milk pretty easily as a substitute, so it’s been no big deal so far. I’ll write more extensively about this soon.

Ham is starting to make a lot more sounds. She’s actually babbling to herself quite a bit more and is starting to repeat things, little by little. It’s pretty wild to be able to say to her “okay, let’s go down the slide. Ready, set… say ‘go!'” and see her look right at me and say “ggghh!” Most of the sounds she’s been making are along the lines of “babababa”, “dayayayaya” and a intonations like a downward sliding high-pitched “AH-hhhh!” It’s so nice to hear her little voice.

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Along with this, she’s discovering a new independent streak. She was a very easygoing and laid-back baby, but no more– we have reached the tip of the “I do it myself!” iceberg. I know a lot of toddler parents dread this day, but I’m thrilled. It’s a different side of parenting over here– the side where we’re actively trying to teach her to use the word “no” (in spoken, signed and typed form). She still doesn’t understand how to say “no” (although she definitely understands it based on the twinkle in her eye when she disregards us saying it to her), but she will actively push our hands away when we try to feed her and is fighting back on some routine care activities. A strong personality goes a long way, especially for a little girl who doesn’t quite have her voice yet… Go get it, Hammy. It’s yours. ❤

Chicken is a sassy little peanut and G-d made her cute for a reason. Oh, the climbing… the mouthing… everything in our house has been in her mouth at some point, I’m sure of it, and we spend most of our time retrieving her from the tops of tables these days.

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(She eats a good 3-4 apples every time we go to my parents’ house.)

We’ve noticed that she seems to have two main speeds: “hyperdrive” and “off,” with an occasional moment here and there of “eating” and “playing quietly on her own.” There is a lot of scrambling onto the couch while bouncing dangerously close to falling off the edge, all the while laughing with a manic near-hysteria as she anticipates us coming to whisk her away. Then there are times like this

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when she just seems to suddenly run out of steam, and that happens a lot, too. I recently went through her ABA notebook to see what the therapists had been writing amongst themselves and saw this theme repeating: “Chicken was very tired today,” “Chicken was easily distracted and had a hard time focusing,” “Chicken was tired so we only ran Program X and Program Y,” “Chicken had a hard time focusing because she was exhausted.” These comments date all the way back to October when we first started ABA. I have a hard time seeing the forest for the trees, as they say, so while I have been there all along when she has tired moments and needs a lot of breaks, I didn’t realize it was so consistent and pervasive a pattern of behavior.

That plus her bouts of staring off into space and not responding to us– I can tap her cheek, tickle her, and jostle her and sometimes get no response or minimal response– has us a bit concerned, so we’re taking her to see a neurologist next week. At the very least, we know that she has difficulty with self-regulation and maintaining attention and focus (our speech therapist basically confirmed that we are looking at a kid who is going to have “not necessarily ADD, but definitely some attention issues down the road”), so this is likely to be a process as we slowly figure out how to help her manage herself as she gets older.

We’re also taking the girls to see a geneticist next week, and while that might help us glean a bit of info about our girls’ specific needs (because autism, really? in fraternal twin girls? 2 for 2?), it’s partly a selfish decision that is going to have a lot to do with future family planning in a way that I am frankly not ready to deal with but we just need to know some things.

We were toying with trying to figure out if we needed to move to another town to get the girls into a better school system, but moving would have required so much money and time and energy that we really just don’t have right now and we were so torn about the decision. I did a LOT of research in the crazy, up-all-night frenetic way that I do (where could Chicken possibly get her manic energy spikes from, hmm?) and ultimately we found that though we don’t live in a highly-rated school district, the special ed programs here seem to be pretty strong, especially when it comes to kids with autism. I’m getting this in part from my gut instinct during our visit to the integrated preschool and in part from what I’m hearing from other parents, both of which I consider to be strong endorsements. So we’re staying here, probably for a good long while. And I am going to OWN this house and yard and all the home improvement projects that need to be done and something will be painted rainbow, mark my words, it will happen. (Sorry, M.)

 

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5 thoughts on “just some updates

  1. It’s nice to be able to read an update from you to put together everything I’ve pieced together through Twitter. It really sounds like the girls have made such huge improvements since starting all of the EI stuff – that makes me so happy!! I know you have some difficult decisions to make about future family planning, etc. Best of luck with that. ((HUGS))

  2. Didn’t realize that Chicken was a Stage 5 climber! LOVE hearing about Hammy’s progress in vocalizing. LOVE IT. 🙂

    Lots of big decisions to come with lots of big info. If anyone is capable of parsing it all out, her name is Jules. Keep on keeping us posted, woman. ❤

  3. So happy to hear your updates, Jules. You do such a wonderful job supporting those girls. They will for sure have everything they need because you are so on top of it and love them so very much; it’s not hard to love them either, they are such sweethearts. Happy to help with whatever I can, even if it’s an Indian lunch, cup of coffee or walk (when the weather is nice again…because it will be…SOMEDAY!)Lots of love to you, lady! XOXO

  4. Yes, you – you are their best and biggest advocate and I have no doubt that all the research you’ve done will be a huge benefit to them! I’m so happy excited to hear the updates on the girls! I hope you get some answers to your questions in the upcoming weeks.

  5. Yay a blog post and I didn’t even see it for 4 days! For shame! I am happy to hear about all the little tidbits you and they are learning. That video you posted on IG of Hammy giggling really made my day – I can just picture the sparkle in her eye as she ignores your “no”s. Good luck with the geneticist and neurologist.

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