On to the next thing

Yesterday was Corin’s last day of preschool. He was a little sad, but he mostly seems excited about moving on to kindergarten. His teachers made him an awesome yearbook binder of photos and art projects from the year. It was so fun to see his progress since last August. Tomorrow is technically the last day of school and graduation, but we’re skipping in favor of a four-day camping trip in Virginia. I figure he’ll have plenty more graduations in his life. For now, I’ll just feel a little nostalgic over the passing of this milestone, and then it’s on to the next thing.

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Best preschool teachers ever

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Awesome classroom assistant

Yesterday was also Lina’s last day at Mother’s Day Out. We’re taking the summer off, and then it’s on to the early childhood preschool in September.

Of course, by taking the summer off, I mean we’ll be running around to various therapy appointments every week, in addition to potentially being enrolled in a Vanderbilt research study that would involve four appointments a week plus periodic visits to Vandy for progress evaluations. We won’t exactly be kicking back and taking it easy.

We’ll also be working very, very hard on the sensory issues at the root of Lina’s hair pulling. We had our first visit with a new OT on Monday, and I am very hopeful she will really be able to help. It will take some time, but I think we could be in a much better place in a few weeks. I can’t tell you how much I need that to be true. We stopped at one of our favorite farmer’s markets yesterday afternoon, and the kids had a great time on the playground. Lina loves the playground, but it is exhausting trying to police her every move. No matter how fast I am, I can’t entirely prevent her from pulling hair. Parents have been so understanding, but what can you really say when your child comes away with a handful of another kid’s hair? Her aggression has spread to pinching and hitting. She is clearly so frustrated and anxious; I think soon we’ll have a much better handle on why and how to help.

2 and Under at GiGi’s Playhouse

I was asked a few months ago to be a new co-leader for the 2 and Under group at GiGi’s Playhouse. If you’re not familiar, GiGi’s Playhouse Down Syndrome Achievement Centers offer free educational and therapeutic programs for people with Down syndrome, their families and the community. These centers are amazing places, and we are so lucky to have one just a few minutes away.

The 2 and Under group is obviously for the really little ones. It’s a welcoming and supportive place for families who are perhaps still coming to terms with a diagnosis or who may have questions about early intervention, therapies, medical issues, and everyday kid stuff that comes up in those first years. It’s also a great opportunity just to connect and socialize with some really lovely people. A fantastic OT volunteers her time to help lead the group, and we sometimes bring in presenters to address various topics. Today, a physical therapist talked to the group about gross motor challenges for our kids and the importance of early therapy to help them develop healthy muscles and skills to build on as they grow. I love getting to be a part of this group, not the least because it means I get to play with some of the cutest itty bittys on the planet, even as Lina is rapidly leaving that stage behind.

I took the camera today and got permission from the parents to share some pictures of these precious kiddos. I’ll get to those shortly, but it would be an incomplete account if I didn’t disclose that for the duration of today’s session, Lina terrorized the room with an epic display of hair pulling. The minute we stepped in the door, I felt her little body tense, and it was downhill from there. I did joint compressions and tried to calm her, to no avail. She made the babies cry, she made the big kids cry, she yanked a mommy half-way to the ground. So, here’s my blanket apology to all the people Lina attempted to scalp today. That wasn’t exactly the warm and comforting environment GiGi’s aims to provide. We have a new OT lined up and are working on it, I promise.

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A much more peaceful Lina at home

Hair pulling, continued

Today, I dropped Lina off at Mother’s Day Out with more nervousness than I’ve felt since her first day there.

She was wearing a mini backpack, purchased at Toys R Us for $9 and loaded with two books weighing almost exactly two pounds. (I know, because I weighed them on the kitchen scale.) A textured ribbon was tied to the straps. She had calming essential oils massaged into the soles of her feet. I had quickly run through our sets of 10 joint compressions in the car before coming in. I’d forgotten the nubby chew tube I ordered to help with molar teething and oral sensory input, but we’ll remember next week. Just before I left, the program director took a drop-off picture to finish out the visual schedule they’ve been preparing for her.

ALL of this is an effort to address the chronic hair-pulling that has become such a pervasive problem every Tuesday. We’ve seen a resurgence everywhere, but it is by far the biggest problem at school. I observed for a half-hour or so from the window recently, and the other kids in the room were clearly terrified of her. They cried and held their hair every time she got close. It was awful.

Thankfully, this Mother’s Day Out program has a mission to include kids like Lina. They have a special education teacher on staff – not Lina’s classroom teacher, but available for support – and one of the program directors herself has two kids with special needs. They get where we’re coming from, and they are willing to work hard to address the problem. My sit-down with the director, special ed teacher and classroom teacher a couple weeks ago was really hard, but so constructive. I am hopeful that the plan we created together will help Lina work through this.

I don’t know what the report will be today. I don’t expect an immediate cure. I’m just hoping that we can find constructive ways for her to channel the frustration and sensory needs that she currently expresses by yanking the hair from innocent children’s heads. If anyone out there has experience with this, I am open to any and all suggestions. 

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.