Tuesday, October 28, 2008

What's it like?

A friend with a typically-developing child asked me this the other day, and in a way, it's really hard to answer. Since Quinn is our only child, it's difficult to say how raising him would be different if he were a typically-developing kid. We have no basis for comparison. But my observations of other parents and their typically-developing kids suggest that in many ways it is similar but more. More appointments, more restrictions on what you can and cannot do, more stuff to worry about in the present and future, more work. Someone else recently asked me if we were planning on having a second kid (and she was clearly unaware what a minefield that question is for carriers of Fragile X), and I said that among the many reasons I wasn't sure about a second child is that it feels like we already have two. Here are some observations of our friends' typically developing kids that lead me to the more hypothesis.

1. We were at an adult dinner party at a friend's house. My out-of-town friend was there with her 18-month-old and had been staying in the friend/host's house for a couple of days prior to the party. The first thing I observed was that the host has a beautiful apartment, full of many breakable items, including floor-length paper lamps and a giant glass vase next to an un-baby-gated fireplace. Amazingly, even though the 18-month-old had been in the home several days, these items were untouched by the child, as were the many choking-hazard-sized foods on the coffee table. The parents did not spend the party chasing the child around, trying desperately to prevent accidents. The child seemed to have an understanding of what was and was not hers, and restricted her behavior accordingly. This was even more amazing when my friend told me it was way past the kid's bedtime, and the kid had jet lag.

2. I was bringing a meal to a friend who had just had a second baby. Her first baby is a few months older than Quinn. The mother had told me she wasn't sure how long I could visit for because her toddler needed a nap. I was at her home for about a half hour. During that time, the newborn slept in a sling without making a sound. Meanwhile, the toddler crawled up on the couch beside the mother, laid down, and fell asleep, also without making a sound. As I was leaving, the mother asked me if I would mind putting the toddler in her big girl bed, so she wouldn't need to lift the toddler while wearing the newborn. I said I would try, but expressed some trepidation about waking the child accidentally. I put the toddler in her big girl bed. She woke briefly, looked at me (a near stranger), smiled, and closed her eyes. The mother later called to thank me, and mentioned that the toddler kept sleeping for another two hours.

3. We were at a friend's child's second birthday party. Despite the allure of a steep staircase with no baby gate, lots of computer equipment, adult musical instruments, and glass beer bottles sitting on low tables, most of the children in attendance simply played with the toys strewn about the house.

4. We were at a party. Another couple was there with their 9-month-old. When it was time for the baby to sleep, they put her in a portable crib upstairs. We didn't hear a peep. The parents said they felt pretty confident it would be no problem to move the baby from the portable crib, put her in her carseat, and then put her to bed when they got home.

I know not all typically-developing children are as easygoing as the above-mentioned kids, and I know that even the above-mentioned kids have bad days. But these above-mentioned scenarios are about as likely in our house as a snowstorm in San Francisco. Here is how these events were or would have been different with Quinn:

1. For party number one, we hired a babysitter, and boy were we glad. Much cheaper than replacing all the beautiful things in my friend's apartment. And going out past 6 PM is a definite no no under any circumstance, unless we want to deal with a screaming, thrashing, red-faced baby. This has been the case since he was just a few weeks old.

2. Though it's getting better, up until a few weeks ago, taking a nap was a looong process involving up to an hour of crib gymnastics, babbling, and/or crying. We often give up on crib naps altogether and resort to stroller or car naps because Quinn gets so cranky, which of course makes us cranky. And moving Quinn once he's asleep is very risky. Until we started Quinn on melatonin about 1 month ago, this was also the case for night-time sleep as well.

3. I spent the party trying to keep Quinn from hurling himself down the staircase, playing with computer equipment and musical instruments, and spilling beer.

4. See numbers 1 and 2.

The other answer to the question about what it is like is to raise Quinn is that I really have no clue what typical development looks like, other than from parenting books I used to read. I am frequently blown away by the accomplishments of Quinn's peers. Until I see a friend's child do something, I don't know it is common or even possible for a toddler to do it. I have seen kids younger than Quinn sing at least some of the alphabet song, say many words in two or three languages, run, climb tall ladders, tell me they have a wet diaper, and engage in pretend play. Sometimes this makes me sad, but more often it just takes me by surprise.


Vicki Davis said...


Can you email me directly again, I wanted to chat about the Folic Acid, I am really curious at how your taking it, and how much it cost... My insurance is changing, so for the next month I might try it differently if it is more cost effective.

I lost your email.


Vicki Davis said...

Just read your post, hadn;t read it before. I can totally identify with you, even though holly only has expressed slight delays so far, my friends have babies that are 2-3 months younger then her, and they are doing some of the same things.. I am so proud of her accomplishments, because I see her learning something new everyday, but then I see a report showing she is about 2 months behind, I have no basis for comparision, so I too am shocked when I see a baby do somehting and ask the parent how old they are, and am amazed.

We are already struggling with the next baby question, have you talked about PGD IVF? We were thinking about this when I still had a job and good insurance, now I wonder if its a possibility...

We should schedule a playdate son, I would love to chat and meet you and quinn

Sarah said...

PGD IVF = very very expensive (like 20K and usually not covered by insurance) and no guarantee of having a child without FXS (still about 5% chance of a baby with FXS). I think I read somewhere that the clinic in Australia with the best success rate has worked with 46 families and among those families, there've only been about 20 some successful births...

I also wonder about the ethics of it - not for others, but for me, personally. I think our most likely options if we decide to have another child are to roll the dice and love the baby that results or adopt a child from the foster care system.

FXSmom said...

I'm glad you did this post. A lot of people don't realize the difference in the kids. It's been years since I had a small fx'er so I forgot a lot of this stuff. Prolly intentionally. It is a different world.

Sarah said...

So it gets easier when they're older, fxsmom? I hope so!

The Other Lion said...

I am also constantly surprised at typical kids. And since I also work with special needs kids, I have lost touch with how to talk to typical ones! Sometimes just their calmness amazes me. And their ability to question and explore.

grishnash said...

I assure you the sleep things you talk about here sound as alien to us as to you. Our typically-developing son has almost never gone to sleep without an hour or so of gymnastics and crying. We would give up naps entirely, but then he ends up an emotional wreck all afternoon and evening. And I can't count the times we've sat in the garage for two hours because he fell asleep in the car seat, but we know we'll lose the nap if we even open a car door.