Week 1 down

So, we’re one week into therapy, and overall, things were not as awesome as I had hoped they’d be.

So far, we’re only seeing one person: Pam, an infant development specialist, i.e. a teacher. I’m not sure if that means an early childhood educator or what, but they refer to her as a teacher and a IDS interchangeably. Whatever she actually is, I’m gonna roll with it.

We had our first appointment on Wednesday, and I LOVE her. She’s awesome with Scarlett. For the first time EVER, Scarlett was immediately willing to play with another human being without me being right there. Girl usually takes weeks to warm up to people— not so with Pam. Right off the bat, Pam was down on the floor with her, jumping around, chasing S around the room as she walked…she’s awesome, I can already tell. Scarlett was so excited to play, and she was willing to try everything Pam got out for at least a little while.

That being said, Pam asked why our behavioral therapist had kind of ruled out autism, and so I told her, and she just kind of gave me the look. She said that obviously it’s still early and she doesn’t know S as well as the other therapist, but at this point, she sees enough things that are concerning to be unable to rule it out at this point. She said that eventually, she’d probably like to see S evaluated at the Mind Institute…which apparently is UC Davis’ neurodevelopmental clinic that specializes in things like autism, ADHD, and other things like that. I guess they have really in depth evaluation teams and are the people to see if you’re suspecting anything…so, I’ll give it another few weeks and if she still feels the same, I’ll go ahead and schedule that appointment. So, overall, I love our therapist, but am struggling with the things she said.

I’m feeling a lot of different things about the fact that autism is back on the table, if I’m being honest (even though it was never definitively off the table). I don’t even know that I could say what every emotion is, really, because there’s such a mix of them. Above everything else, however, I’m just feeling grateful that we seem to have caught whatever this is as early as we could’ve…because everybody in these fields knows that early intervention is key, and I really couldn’t have gotten Scarlett in for services any sooner than I did.

I’m still most concerned at this point about her feeding. She seems to have reverted quite a lot, in that she doesn’t ever want to touch food any more, unless it’s something simple like a cracker or goldfish. As soon as you give the girl pasta or something, it’s like she has no hands, because she refuses to touch anything. She also still won’t drink more than a sip or two of anything at a time, and even that is a battle. She just lets her jaw hang open and let’s everything fall out. It’s so frustrating. We’re supposed to be getting in for an evaluation with a feeding therapist sometime at the beginning of October, but I still haven’t heard from the therapist to schedule the evaluation, so hopefully that call will come this week. No word on the OT or PT, though, but I’m less worried about those right now.

On this life side of things, we finally move into our house tomorrow! It has been a VERY long five weeks, and while I am very grateful for everything my parents have done to help us out, I am very ready to get out of their hair (and I know they’re feeling the same about us!).

Finally! 

So, last week I had to take Scarlett to the emergency room. She had a nasty cough, refused to eat, was crying constantly, fever, etc. When we got there, she was weighed, and she’s dropped down to 19 pounds (she was almost 20 before we left Denver). 

My heart broke. 

I knew that she hadn’t really been into drinking the almond milk, and still isn’t able to eat a lot of solids…you know, where we’ve been at for the last few months. So, while I figured she hasn’t gained any weight, I don’t know that I necessarily thought she’d dropped so much (12 ounces). So, at this point, we’re down to the 2.5 percentile…and she was in the 95th. I’m so discouraged. 

BUT, we got a call today from her service coordinator stating that her case is now open with the state, and that they can come out and start getting services set up and explain how this whole thing works here. It’s a federal program, so I can’t imagine it’s dramatically different than CO, but we’ll see, I guess. I will say that I was very pleasantly surprised when she told me that they’d be able to come out tomorrow for the meeting, I figured it would take them a few weeks. So, they’ll be here in the morning, and hopefully therapies will start quickly after that. 

Side note: we bought S some see kai run high top shoes that are just DARLING. But, as soon as I put them on her, she FREAKED. She dug into my neck screaming and was clearly terrified, so I just held her close for a few minutes until she stopped screaming. After a good 30 minutes or so, we got to a place where she was content to just relax in my lap, but she was a statue. Wouldn’t move, wouldn’t do anything but sit. So, I let her do that for a while, and then took the shoes off. I guess the hope is that after a few days, she’ll get used to them and be willing to wear them. Girl can’t go barefoot forever. 

Another side note: I did very briefly put her mullet up in a ponytail. I died, it was hilarious. She hated it, so it only lasted a minute or so, but it was totally worth it. 

Slow days 

So, just a few things to update. 

Our girl finally claps! 6 months behind, but who’s counting? 

I called the local early childhood intervention people earlier this week, and was a little frustrated when they told me that it would take them 2 weeks to even return my call about getting an evaluation set up. That wasn’t what I had been told before we left CO, and had I known it would take that long to even schedule an appointment, I would’ve gotten the ball rolling weeks ago. So that was frustrating. 

But, as luck would have it, that wasn’t the case! I got a call back on Friday. I think it’s partly because Scarlett already had an IFSP in place, but I can’t confirm that. The lady I talked to did say that it was really rare for them not to honor another state’s IFSP, which is nice…since that’s something I was worried about. Even though I knew Scarlett was well past the 33% delay benchmark, it was still a little scary to uproot her from therapy she was already receiving to come here, and have to start the process over. 

So, the lady said that since there’s already an IFSP, it should basically guarantee services (barring something crazy). So, I sent the paperwork off today, and she said she’d call me back on Tuesday to schedule the service coordinator to come out and do whatever it is that they do. 

So far, I’m happy with how quickly things are moving, and I hope that they continue to move at this pace. Even though they kind of gave us an all clear for feeding, I’m still feeling like she’s not where I’d like to be, and would like her to get in to see someone ASAP.