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.

This can't be happening to her.

My daughter isn’t talking. Well, she isn’t talking much. Warning bells have been ringing in the back of my head for months, but I ignored them because her older brother was a late talker too and now is significantly above average at just a little over three. Whenever I would express my concerns to other people, they’d just say that she was fine. She obviously understands everything said around her and her brother turned out fine, didn’t he? So I waited, and waited. I just wanted it to “kick in” so I wouldn’t have to worry any more.

The funny thing is that I’m a speech-language pathologist. I know how normal speech development works. I knew this was different. But I still procrastinated convincing myself that I could wait because everything turned out fine with Michael.

Finally I just couldn’t wait any more. I started making phone calls about a month ago. I called her pediatrician. She told me to start with a hearing evaluation. It’s scheduled for the end of January. Two months to confirm what I’m pretty sure I know – she can hear. Found out that our insurance doesn’t cover speech therapy for children unless they had it and lost it (like with a head injury). Started her with a private therapist who agrees that things aren’t right. Twice a week for 30 minutes. Seems like so little time to try to fix so much.

Called Missouri’s First Steps program. This is the program in Missouri that serves the birth to three population. They scheduled an evaluation, but doubted she’d qualify. In order to qualify, she’d have to score as low as a child half her age – 11 months on a language subtest that combines how she understands language as well as how she speaks language. Well, she understands just fine which was bound to bring the score up. I scheduled the evaluation anyway. At the very least she’d be evaluated by someone with a lot of experience with little ones who could confirm my concerns even if she didn’t qualify. I called the local university’s speech clinic and investigated the possibility of her being seen there. Anyway, I made a lot of phone calls and set up a lot of appointments. Then it was the holiday season and things were so busy I escaped for a while.

What I can’t seem to do is think about the situation on an emotional level. Every time I try to think about the fact that my baby has a severe speech delay I just completely break down. Which is completely useless and unproductive. I’m a speech pathologist. Who better to try to help a child with a speech delay? And I just can’t seem to do it yet. I need a clear head to research and plan goals. I need a clear head to sit down with her and work with her like a professional rather than an extremely upset mom. And I just can’t. And I feel incredibly guilty about it. Ever since making the phone calls I’ve been trying to just tune out. Try not to think about it. At least it keeps me functional as a parent who’s the primary caretaker of two small children.

Today was her first steps evaluation. Good news is that in every single area except expressive language (speech) she’s above average. Tests at 2 years of age or older. Bad news is that she scores like a 6 month old on the language portion of the test. 6 months old!! That’s nearly a two year gap between her ability to talk to people and everything else. She’s not even two years old yet.

And unofficially, it looks a lot like childhood apraxia of speech. Which I knew. I’m a speech pathologist, of course I knew. But it sucks to have someone else agree. No one would officially diagnose her at this age. But she’s normal everywhere else. No sensory issues. No social issues. So few consonants (only two). So few vowels. No imitation. No vocal play. I suppose I should just be grateful she’s going to qualify for services. And I am. Really, I am.

But I’m mostly just incredibly sad. Not for me. Just for her. I’m terrified of a future in which my bright, cheerful, independent, sweet girl cannot express her thoughts and feelings to the people most important to her. Of how peers and school will treat a little one who continues to be silent when all around her are talking. She’s so smart and no one will know. How will she continue to keep up when she doesn’t get to participate in conversation with her family? She can’t ask questions about things that interest her. She can’t comment on things she thinks are funny. She can’t ask for help. She can’t tell us why she’s sad.

And I have to help her. I have to. It’s my job. I’m her mommy. And I can’t yet because my emotions won’t cooperate. When does it get better? When does this stupid diagnosis stop being the only thing I think about all day? It’s there when I get up. It’s there when I’m trying to go to sleep. It sneaks up on me during every quiet moment of the day.

I’d love to come up with some succinct summary of this mess, but I simply don’t have anything else to say right now.