Staying Optimistic

I am very happy to report that Raquel has gone back to her somewhat normal sleeping patterns. Besides staying up a bit later, she's sleeping pretty sound again and has stopped giving me - knock on wood - my 3:30am wake up call.

She's still just really out of sorts and I don't know what to make of it all - except hearing that mother tell me that things can go backwards at any given time. Maybe that is what happened this last week or so. We did not do the bloodwork last Friday because it was such a rough morning, so I'm planning on taking her this Friday instead.

Raquel is still very much about routine, but it seems as though her routine is constantly changing, if that can even make sense to anyone but me. She no longer enjoys going on walks - perhaps it's just the stroller she's not liking anymore - but she can't tell me what the problem is. Halfway up the street she starts freaking out and we have to come home. Gabby thinks the sun in her eyes is bothering her, which is definitely a possibility with her sensory issues, and she doesn't seem to mind being pushed around the mall, so that's where we go sometimes before the stores open for our morning walk.

She does seem to be talking more - especially in the morning when she wakes up. Some of it I understand, some I don't. She may have developed her own language of sorts. She gets really animated and her pitch changes as well as her facial expressions. I definitely feel she is talking to me and trying to communicate, and I just answer her back, acknowledging the words like I was taught to do.

There are two things that have never changed: Raquel's love for (1) music, and (2) water. Both are secret weapons that snap her out of her tantrums almost immediately and I am constantly rotating between the two. The water can be a bit tricky at times because if she's not ready to get out, it can get pretty ugly. And you definitely cannot say, "water", "bath", "pool", or "wa-wa" without following through. Music works great - especially when we are out and about. I have her favorite songs on my cell phone that can be easily played in elevators, grocery stores, parks, etc. and make trips back to the car much more pleasant.

Actually, there is a third secret weapon - the Moose & Zee characters on Noggin. If she is playing in her room and Gabby is watching tv, she'll yell, "Raquel! It's Moose!" and Raqi comes running down the hall to watch. (NOTE: I have been unsuccessful at locating a Moose stuffed animal or blanket. If anyone knows where I can find one, please let me know. They are not sold on Noggin, as far as I can tell.)

I'm still in the process of getting Raquel's therapy resumed. Her pediatrician refused to sign the form stating therapy was a necessity, so now it goes to her neurologist. I'm sure he won't have an issue signing the form, especially with LKS in the picture. I thought I should have started with him in the first place but was obeying the chain of command I was given. Again, more valuable time wasted. When will I start listening to my gut?

I also spoke recently with Bev, my education consultant. She continues to be such a wealth of information. I don't know what I'd do without her input and guidance. And she makes herself so available to me - days, weekends, evenings. Anyone with a special needs child should definitely have a Bev in their corner providing accurate information. When I asked about her thoughts of putting Raquel in a "typical" daycare setting instead of a school one, she made a really great point about how the school is supposed to be working on potty training and self-care issues, and to make sure a typical daycare would be focusing on that as well. Just more to think about in the next month or two.

Besides a rough morning, Raquel had a really great day (so far) and I'm optimistic that things will get back on track a bit this week.