Emotional Journey

By nature I have a pretty cheerful, positive personality. I use that energy to spend positive days at home with my children and in my dynamic with my husband where my more bubbly personality tends to raise the energy in the household in a positive way. When Ava qualified for early intervention services with a likely diagnosis of apraxia it hit me hard. I was depressed and on the verge of tears pretty much every waking moment. It made it difficult to be a good parent to my children and changed the whole tone of my interactions with my husband. Here I wondered how long it would last before I’d be able to think past the fear and sadness of the diagnosis and become a little more functional and a little more myself.

Well, it turns out that for me the worst of it lasted about 2-3 weeks. Blogging helped actually. Normally I’m a hide my wounds and lick them in private kinda girl, but talking about everything both online and off has helped a lot. I think the holidays helped too simply because I was too busy to obsess.

I’m also consciously avoiding lines of thought that aren’t productive. Any train of thought that goes something like, “What will school be like for her? or How will she make friends if she can’t talk to them? or I think she’d be closer to her brother if only they could talk to each other. or Will she have the language and reading problems that often accompany apraxia when she gets older?” gets cut off immediately. I don’t know yet how she’ll respond to therapy or how fast she’ll progress. It just doesn’t make sense to worry about tomorrow’s possible problems when there are enough things to deal with today. I can handle today’s problems. I can work out solutions. I can’t do anything about fears for things that –might- happen in the future.

So now I’m in a flurry of activity and I feel pretty good about it. It makes me feel better to have a list of things I want to accomplish and to actually be crossing some of those things off. In my next few posts I’ll talk about some of the things we’re doing and setting up right now.

Genes, Part 3

So, there you go. Same two parents. Two kids. Both children are smart, funny, beautiful, kind, healthy, and every other positive thing every parent believes about their own children. However, neither child has typical language development. And one has a pretty serious speech disorder that will probably change the rest of her life.

I tread lightly here because I firmly believe that what is right and obvious for me and my family is not necessarily right for everyone. If you make different choices I applaud you for them and pass no judgment on them simply because they are different from mine.

Having said that…. Having a child with special needs is a situation I need to devote a significant amount of resources to. Those resources include emotional ones, financial ones, and time. I always felt that two children were enough for our family but I’ll admit that I was sad to think I’d never be pregnant or nurse an infant again. I might have considered more children at some point. Now I just can’t. All my resources need to go to the two children I already have. And that would be the case even if I could get some guarantee that my next child would have typical development. And doesn’t that seem unlikely.

And so I find myself in a rather common human condition. I didn’t really want more children. Not really. But I certainly didn’t want that choice to be taken away from me. And even if it is irrational, I feel like the set of circumstances I find myself in has taken that choice away from me. And I resent it. It’s irrational, but still, that’s the way I feel.

Genes, Part 2

So, Ava arrived about 15 and a half months after her brother. My pregnancy with her was also completely normal and full term. Her birth was also natural and uncomplicated. My mother, who was in the delivery room, said that she felt that Ava spent a little more time than normal before getting her shoulders out. I pay attention to this only because my mom was a practicing ob/gyn nurse 30 years or so ago. However, when I mentioned that to my ob later, he said that he thought everything was fine. She was a healthy 8 lb, 12 oz. baby. She also had severe newborn jaundice which was treated well and cleared up in under a week. She wasn’t an easy baby, but she was easier than her brother. She had reflux for which she was medicated for the first year of her life or so, but that’s the only medical history of note. She was more interactive. She made some vocalizations. I don’t remember what exactly, but I remember that it was “more than Michael did at her age, and look how he turned out – she’s fine.” She didn’t have any of the unusual staring at lights or fascination with screws type behaviors. Her eye contact and turn taking were more appropriate as well. I was just so relieved to not have a repeat of Michael’s first 15 months that I didn’t really take her red flags seriously enough. Because in retrospect, they were there. If you remove the lens of “this is better than Michael, so it’s all going to be ok”, there was plenty to be concerned about on her own merit.

Yes, she had more vocalizations than Michael, but they weren’t enough, at the right age, or of the right types. She had a few vowels, but almost no consonants. No sense of vocal play. No reduplicated syllables. She didn’t imitate at all. Even though I’m a speech-pathologist, I’ve never raised a baby with typical speech development. Therefore, I didn’t really appreciate how behind her babbling was. She had a few “words” at her 18 month pediatrician visit. We thought she had an approximation for Michael and one for kitty. I don’t remember the rest. They pretty much all disappeared. By the time I called First Steps at 21 months of age the only words she used regularly were “yeah”, “da” (that), and “mo” (more). We’d also occasionally hear “uh oh” and “ha” (hot).

At the 18 month pediatrician visit, she seemed to be trying, and I was still entrenched in the she’s almost where Michael was at this age and he turned out fine mentality. Three months later she had lost what little she had and the lack of progress at a time when she should have been starting to talk more and more triggered enough concern that I couldn’t keep my head in the sand any more. And I started to make phone calls.

If it hadn’t been for our experience with Michael, I’m pretty sure I would have had Ava evaluated months earlier. So be it. We all do the best we can.