Symbiosis

Ava and I are like two halves of a communication whole. When it comes to common routine things I almost always know what she wants and what she’s trying to communicate. I know that she wants a snack when she gets up from nap. Usually we go through a question and answer routine. Do you want a banana…some yogurt…some milk…etc? She’s remarkably eloquent with intonation and vowels. I wonder if my ability to read her and to facilitate her communication is a mixed blessing. I’m pretty sure she’s less frustrated than other kids with her level of verbal skills because I’m so good at helping her. However, she’s reluctant to spend time with anyone but me. Also, she may not try as hard to verbalize because she doesn’t have to.

Recently we’ve begun teaching her sign. We also put up a communication board with the most common things she wants from the kitchen on the wall in the kitchen. I’m expecting her to actually ask for what she wants in one of those two ways (usually accompanied by a verbalization) instead of just guessing until I get it right. I think she likes it. She’s excited about being able to ask for what she wants using the communication board. She’s spontaneously using the signs for milk, please, and help. It’s really a lot of progress for only about a week of using these interventions.

There’s just so much more locked in that little head. She’s almost two. She should have at least 50 words and be using 2-3 word phrases. I don’t know that many signs, and our communication board only has 8 pictures. You can just tell that she’s wanting to communicate more complex thoughts and just doesn’t have the tools to do it. I wish I were fluent in sign so that I could open up a whole different method of communication for her. I want to hear what she has to say. I don’t care right now how she says it.

Schedules

The rhythms of life as a stay at home parent have gone through such distinct stages. There’s the sleep deprivation / breastfeeding stage where night and day blend together as do the days of the week. All time is the same. It drove me crazy a bit. And with my two babies only 15 months apart, in some ways I felt like I spent two straight years in that stage.

Next there was the stage of two toddlers. This was actually quite nice. I liked it here. The days and nights become distinct again. Days start to have regularly scheduled appointments like nursery school two mornings a week. Regular playdates are set. Conversations begin to return with adults aside from your husband and on topics other than the feeding, sleeping, changing, and development of babies.

And now there’s something new. Parent of a child with special needs. I’m barely starting this and I’m realizing that appointment are beginning to be difficult to keep track of. There’s school two mornings a week. Two half hour therapy sessions a week with the private therapist. The IFSP meeting coming up. The hearing test coming up. Then we’ll be scheduling the first steps therapy session(s). That will probably be once a week for an hour which is their typical schedule. I’m going to try to advocate for half hour sessions twice a week though. It’s better for kids with apraxia and I have the citations to prove it. I doubt any speech-path knowledgeable about apraxia would argue the point, but sometimes practicality wins. They serve you in your home. If you factor in driving time, you are asking them to fit in extra time into a busy schedule serving other families too. It can’t hurt to ask though, right? So that will bring us up to three or four therapy appointments a week. Plus two mornings of preschool. We also have two regular playdates. I hate to let those go, but I begin to wonder where we’ll fit it all in. The kids still nap in the afternoon. And don’t they get to just hang out at home any more? Balance… does it even matter? Or is the therapy more important?

Family.

Well, yesterday’s post must have been cathartic somehow. I managed to do some web browsing last night on the topic that was fairly productive. There’s a lot of good information at the www.apraxia-kids.org website for both parents and therapists and I spent several hours browsing both sections. It’s a start I suppose. I stayed up way too late and then had trouble falling asleep so I’m glad this morning is a preschool morning for the kids.

I was feeling pretty good about having been productive and managing to avoid the emotional black hole of the mental pathway that begins with the desperate wail….. ”But what about her future!!!” Then my dad called. My parents are wonderful. They live five minutes away and have been taking Michael for one night every weekend since he was about two months old. When Ava was born they started taking turns. One weekend they’ll take Michael and the next they’ll take Ava. My children have the blessing of being extremely close with their grandparents and we have the blessing of getting regular one-on-one time with the kids. Usually communication in my family goes along the lines of my mom as mediator. I’ll talk to my mom and she’ll talk to my dad. Or dad’ll talk to mom and then she’ll talk to me. My dad and I have a great relationship, but I just talk to my mom more often.

Well, yesterday afternoon I called my mom and gave her the good (she qualifies) and bad (she tests like a 6 month old) news. Mom was upset, but supportive. I was upset, but avoided a complete meltdown. Additional details aren’t really necessary. To be honest, I didn’t even really think about whether she’d discuss it with dad overnight.

So his call this morning was a complete surprise. He just called to personally say that we have his complete support. That Ava’s a wonderful girl with a family that loves her and we’ll all travel this path together. The call was relatively brief, completely unexpected, and touching. And now I’m a complete mess again. This experience is such a roller coaster.