The kids had their Mother’s Day Out Christmas program on Friday. Corin sang with his class, we had brunch, and Santa made his appearance. It was a fun time, and Corin was especially thrilled that his Mimi made the long trip up just for the morning in order to be there.
I have some bragging to do about a winter backpacking trip we took with the kids last weekend, but I have to get Jon to send me the few pictures we managed to take to provide photographic proof of our derring-do. Stay posted.
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.
Christmas is finally in full swing around here. The tree is up, the decorating is (almost) done, and I’m finally in the spirit. (I was beginning to think we’d just have to celebrate in February, because it felt like it should still be October.)
For most of our married life and all of our children’s lives, we’ve had a fake “slim profile” tree, which was the only thing to fit in our tiny living room. This first Christmas in the new house marks the long-awaited return to a real tree. I had idealistic plans for a rooted tree that could be planted outside after the holiday, but our trip to a local nursery yesterday doused that dream in reality. Turns out, we had completely underestimated the size of the root ball for a 6-foot tree. As Jon emphatically pointed out – to my disappointed protests – there was no way we could lift that tree, much less carry it up the stairs and into the living room. I couldn’t reconcile myself to the tiny tree we might be able to lift (with still considerable effort), so we headed to the section with the cut trees and chose the modest (and considerably more maneuverable) Fraser fir which now adorns our living room. I keep breathing deeply; I’d forgotten how lovely that smell is. I even like that it’s a smidge crooked. Our simple tree’s not-perfection is just right.
The “ordaments” (Corin’s rendition) are a mishmash we’ve collected over the years. Some are cheap plastic, some are beautiful, delicate glass (located at the top of the tree these days), and some are rough, hand-made crafts covered in kids’ fingerprints. A big part of the Christmas tree tradition for me has always been unwrapping the same ornaments every December, the protective paper yellowing and eventually having to be replaced, the memories stacking atop one another as the years roll by. It was that way all through my childhood, and it’s one of my favorite parts of the holiday. Decorating the tree is always helter-skelter with small kids, but those ornaments and the attached memories are precious to me.
We are trying to keep things simple this year. There has been very little shopping, save a special outing with my dad. Relatives have been warned: prepare for homemade! It keeps holiday expenses more manageable, but really, I think I prefer it this way. (I can’t speak for how the relatives feel.)
So, here we go. The Christmas whirlwind whirls, and we do what we can to slow it down, grasping fleeting moments to stop and savor.
I’ve discovered the key to taking photos of my son. “Corin, whatever you do, don’t get in this picture.”
Getting a huge kick out of trying to eat the rocks
I mean, people, look at the size of those root balls!
In illustration of the usual state of my sinuses, Corin insisted the delicate tea pot ornament was a neti pot.
Yes, Lina decorated the tree without a shirt. No, I don’t really know why.
A new favorite from last year: father-son hiking boots
“The Night Before Christmas”
Lina has taken a couple independent steps several times over the last few days. I feel like she keeps teetering on the brink of really taking off. Her physical therapist sent us home with a walker this week so she can keep practicing and improving her strength and confidence. She’s a pro at standing independently, but the therapist thinks it’s just a matter of that extra bit of strength and confidence to balance on one foot as she steps forward. She has a great foundation of good technique and all that bilateral crawling is actually fantastic for brain development.
Lina is in an interesting in-between stage right now. She’s not really a baby, but because she isn’t walking yet, it doesn’t seem quite right to call her a toddler. Her receptive language in particular is improving, and there are small gains with her expressive, though her therapist thinks that is taking a back seat as she focuses on gross motor. (Just one more reason we’d really like to get that girl walking!) Her play is changing significantly, which her therapists credit to her time with typical peers at Mother’s Day Out. She engages in more focused and pretend play with toys, rather than just exploring them and then throwing them aside (although she still does that some, too). She might pretend to feed me and herself with her baby’s bottle, or spend more time actually driving a car around on the floor, or maybe put people in the proper spots inside the bus. She might be able to focus long enough to put shapes in the proper spots in a shape sorter. We still haven’t gotten much traction with puzzles, and attention span can still be a challenge at story time, though she usually will sit through her favorite books at least once.
We’ve also been experiencing a big recurrence of hair pulling. She’d been doing much better until Thanksgiving, when the house was full of unfamiliar people and constant noise, and my poor little 22-month-old nephew was right at her level with his tempting locks (regrettably now much thinner than they were). The overstimulation set Lina back a long way on this one, and her Mother’s Day Out teacher reported that she terrorized everyone in reach on her first day back post-holiday. Here our tender scalps were just recovering… Back to the slow, steady “redirect and reinforce” approach.
Her sense of humor keeps growing, as does her desire to imitate. She can express herself loudly, especially when she’s frustrated. She loves to use song motions to communicate. For example, she points to her face for happy, as in, “If you’re happy and you know it, then your face will surely show it.” We also get a lot of the round and round motion for the wheels on the bus, and the occasional itsy, bitsy spider thrown in for fun.
I’m not going to lie: her slower pace of progress can be very frustrating. My arms can testify to the challenges of lugging around a two-year-old (albeit a small one). Inside our little family, we celebrate each step, each sign of progress, each little milestone and feel gratitude and pride in her achievements. It gets harder when we’re in public and strangers ask her age; I brace myself before responding, knowing they are expecting a child much younger. It gets harder when she’s side-by-side with her peers and obviously not at their level. It gets harder in the little kids’ class at church, where managing her short attention span, toy throwing and hair pulling demands every ounce of energy I have.
I was thinking about this the other day as we were driving home from an outing, and I felt an almost overwhelming urge to rush her home, hold her close and never leave the house again. I suppose every parent experiences the urge to shield their children from the harsh realities of the world, but I find that to be magnified with Lina. I know it’s an urge I will have to fight her whole life, as I encourage her to take those baby steps to each new milestone, out into a world that will not always greet her with the love and understanding she finds at home. It pierces my heart to know someone might even be thinking something unkind about her. I can hardly stand to contemplate the jeers and misunderstanding she may encounter as she grows and ventures out from the nest.
But just like with Corin and with every parent and child, it’s my job to equip her for that big, wide world. I know full well that sheltering Lina at home would do a tremendous disservice, to her and to the world she will enrich. She needs my full-voiced support urging her forward, giving her the confidence for each of those steps forward. Our family will always be a safe haven, but it has to be a launching pad, not a hideout. The trick is to find ways to work now to make the world the place I want it to be for her. I suppose that’s why I keep writing and posting pictures here.
For now, when parents ask if she’s walking, I smile and say, “She’s working very hard on it.” When other kids her age race by her, I am thankful she has them to imitate. When she won’t stay on the blanket at story time, I sit with her, knowing she learns through constant practice. As I exercise patience and cheer Lina’s baby steps now, I know each one is a tiny step toward the future we dream of for her.
a story unfolding
Empowering through the Arts
"Creating, sharing, and amplifying disability media and culture"
a story unfolding
a story unfolding
a story unfolding
a story unfolding
a story unfolding
a story unfolding
A Dash of the Unexpected 