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.

Genes

Well, my husband is my perfect partner. That sounds terribly sappy, but it’s true all the same. I would not trade him for anything. I think we combine in a way that makes amazing, sweet, smart, kind children. However, those children do not have typical language development.

Ava has been the main topic here because we’re dealing with her diagnosis of apraxia, but that story actually begins with Michael. My pregnancy with Michael was completely normal and full term. Natural, uncomplicated birth. Healthy 8 lb, 6 oz. baby boy. He did have rather severe newborn jaundice which wasn’t well treated, but that’s a story for another time. He screamed for months. I kid you not. Somewhere 6 months in or so I remember asking my husband if he would ever be happy and awake at the same time. I was worried even then. He didn’t make eye contact. He was more interested in the lights or ceiling fan than in faces. We didn’t get the smiles or coos. There was very little interaction. Almost no babbling. He didn’t even make vowel sounds until 8 months of age. When he’d play with toys he was more interested in the screws on the bottom of the toy than in actually playing with it. He wasn’t interested in turn taking games like pat-a-cake. Red flags were everywhere and a speech-pathologist I saw them. But I was a new mom and insecure, and no one else seemed to be listening.

He had no words at his one year pediatrician visit. Our pediatrician told me if he didn’t have three words at his 15 month visit we’d begin testing. He had three- barely - at that visit and they all had come in that week. (Ava was born, incidentally only 2 weeks after that 15 month pediatrician visit). When he did begin talking, his first sounds were very atypical. He had /k/ and /g/ and enjoyed making clicking sounds with his mouth. I was very concerned. And about more than just his speech.

And then it just clicked. The words came more and more quickly. Ten words, then 50, then more than we could count. Two to three word combinations came between 20-22 months of age and he was using 3-5 word sentences at two. At three he’s pretty much completely intelligible to strangers and using long sentences with complex structures and vocabulary.

It was our own little miracle. A breathtaking relief. And the experience completely colored the way we looked at Ava’s development.