Highs and lows

Today was a perfect illustration of how parenting a child with special needs can be a bit of a whiplash experience.

We’ll start with the low.

I mentioned that Thanksgiving induced a hair pulling relapse for Lina. Last Tuesday – her first day back to Mother’s Day Out after the holiday – her teacher greeted me at pick-up with a report of a day spent terrorizing her classmates. Today, I was met at pick-up by the program director. Yeah. Never a good sign.

She was very sweet, but the tone was serious. They plan to bring the special education teacher into the room to observe and hopefully make some suggestions on strategies. (She is normally a teacher in Corin’s room.) I talked to the director about what we’re doing at home, and she admitted that today had been better than last week but didn’t hold back from a series of dangling sentences: “If it doesn’t improve, we may not be able to… Not that we’re even close to that yet, so I don’t want you to think… But I need to let you know that if it doesn’t improve, she won’t be able to…” I understood the warning very well.

Believe me, I get why this is a problem. It’s a sensory issue without a quick fix. My girl has a death grip, and it is horrifying to see her attempting to yank hair out of the heads of small, helpless children who invariably manage to look simultaneously confused and pain-struck. It’s a problem at home, too, and we are working hard on it. We’re regaining ground, and I think we’ll get back to a much better place. I don’t expect it to result in Lina actually getting kicked out of Mother’s Day Out, but you can imagine how the entire exchange made me feel.

The good news is the day didn’t end there. Tuesdays, we head straight from Mother’s Day Out to speech therapy at Vanderbilt.

And man, did Lina kick some speech therapy butt today. Her attention to task was phenomenal, she was consistently responding appropriately with words or signs to questions and prompts, her vocabulary had expanded, and her whole manner of communicating was well ahead of where she was just a week ago. Her therapist was floored. I wasn’t too surprised; after all, as I was getting her ready for nap time yesterday, she told me, without prompting, everything she’d just eaten (her version of “cheese,” “raisins,” and “crackers”).

And so it goes. There are highs and lows, sometimes right on top of each other. The thing I’m learning about having a kid with Down syndrome is the struggles are not so different from parenting any kid. It’s just that Lina’s timetable is slower, and her challenges are magnified. But her triumphs are magnified, too. It’s like trying to explain to a person without kids why having them is so hard but also so amazing. Parenting a kid with Down syndrome is really hard. It’s also really amazing. And just like in that conversation about having kids, the take-away is unequivocal: it’s absolutely worth it.

5 thoughts on “Highs and lows

  1. warriorgirl2 says:

    I love the thoughtful point you made. Her challenges are magnified but then as a result of that, so are her triumphs.

  2. Betty says:

    You are a beautiful writer and judging from the story a beautiful parent as well.

  3. Poi says:

    Death grip is no need to see the program director. A keen eye and a close teacher can help! If the class needs an extra helper the whole class likely needs it; not just one student. If it’s public school — get one if its private go observe the class and give them tips. Jump on a DS Facebook page and ask for suggestions. Biting & hair pulling are COMMON. Are kids not able to whatever the rest of the directors sentence is when typical kids have behavior issues? if

    • Jolene says:

      Poi, good tips! You’re right, this is not unusual behavior for a two-year-old. Thankfully, this was a short resurgence, and things have gotten much better again. We have gotten some excellent advice from the OT at the Vanderbilt Down syndrome clinic for alleviating sensory-seeking behavior (joint compression and massage, toys that require pulling, etc.). It’s a private Mother’s Day Out program, but if it does become a problem again, going in and observing is a great idea.

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