Thursday, July 13, 2017

It takes a village

One year ago today Emelyn started attending ABC’s of ABA. Over the course of this past year, we’ve seen tremendous growth and development. Here are the notable areas we’ve seen:

Self-feeding: Emelyn can feed herself with her fingers, as well as using utensils. It’s not always pretty, but she certainly is proud of herself.

"You want me to use my fingers. I don't think so,
I'm way too sophisticated for that."
Communication: Emelyn still doesn’t have words, but she’s on her way to using an iPad to communicate her needs. She’s also using sign language to say “all done” and “more.” Words may be in her future as her speech therapist is encouraged by the “m” sounds she’s been making.

Walking: Emelyn still requires support, either with a walker, gait trainer, or hand-holding, to walk, but we can honestly say she’s closer than ever to walking independently. When Emelyn started at ABC’s we were lucky to get more than a few steps out of her without her plopping down in protest. ABC’s walks her every single day and collaborates with her physical therapist to be sure they’re using the right techniques to promote independence. Just this week Emelyn has started trying to take steps on her own. We’ve only seen two or so steps at a time, but the fact that she’s wanting to do it is extremely encouraging because what Emelyn wants, Emelyn does.

Watch out, this girl is on a mission.
Fine motor: Emelyn just recently started clapping her hands. She’s also getting the hang of pointing using her index finger. While still inconsistent, she can wave when she wants to as well.

Receptive language: Emelyn’s vocabulary of words she understands has grown tremendously. She’s even following some two-step instructions. She points to our nose, mouth, eyes, ears, and chin. I’m convinced she understands even more than we realize.

Engagement/eye contact: We constantly hear from folks, “I can’t get over how much progress Emelyn is making.” Usually what folks are referring to isn’t her improved mobility or receptive language, it’s her ability to interact with the world. Truly, she’s a completely different child this July versus last July. I remember going to a restaurant with friends last summer and Emelyn stared off into the ceiling mesmerized by the ceiling fans. Despite attempts to get her attention, she remained locked in her own world just staring. This was a frequent occurrence, but not anymore. When we attend church, Emelyn engages with those around us. She holds hands, smiles and giggles, makes eye contact, and responds to her name. Now if we could just get her to refrain from giggling through the prayers.

Head control: A year ago it was not uncommon to see Emelyn’s head fall back several times a minute. This is a major challenge to getting her walking. However, her head control has increased drastically this past year, likely due to her increased walking at ABC’s. As her head control improves, so too does her ability to keep her balance. She still has progress to make before her balance will be at a place where walking is possible, but she’s closer than ever.

Finger chewing: Emelyn, like many of the other DDX3X gals, is a finger chewer. It’s mainly a sensory issue. When Emelyn started at ABC’s we were using a “no-no” which is a brace that prevents her from bending her arm at the elbow. This was an effective way of keeping her finger out of her mouth, but it wasn’t ideal for developing motor skills, especially fine motor skills. We’ve started noticing over the past six months a significant decrease in her finger chewing. In fact, it’s been months since she’s worn her no-no. We do occasionally see an increase in finger chewing, but she’s now easily redirected to other tasks as opposed to mindlessly chewing her finger.

One redirect we've found for finger chewing
is to hand Emelyn a car with wheels she can spin.
Sensory issues: In addition to the decline in finger chewing, we’ve also seen an increase in Emelyn’s tolerance for having her teeth brushed. What used to be a battle is now a fairly effortless task. This was especially helpful when Emelyn went to the dentist for the first time back in January and again yesterday. She was extremely cooperative. Emelyn’s also a teeth grinder and that’s another area we’ve seen decrease tremendously. It’s almost rare for her to grind her teeth now.

Potty training: A year ago I would have never dreamed Emelyn would be in the potty training process, but sure enough, she’s successfully using the potty several times a day. We still have a long road ahead of us, but we’re on the road and that’s pretty exciting.

A proper dismount: Just a few months ago when Emelyn wanted to get off the bed or couch, she just went for it, often head first. There was no consideration for how she went about dismounting, she just went. We’re now seeing her very intentionally turn herself around to go feet first off of furniture and her bed. While it’s a physical skill to execute, it’s a cognitive skill to plan and we think the combination is a pretty big deal.

This is Emelyn's morning sleepyhead look.

Attention span and tantrums: With Emelyn’s new awareness of the world around her we’ve also noticed her attention span has increased. This has helped with tantrums and other escape behaviors. It’s not to say we don’t still have some outbursts, but to some extent, those are to be expected with a non-verbal child. In general, she’s just a happier kid.

Being a sister: This one is probably the greatest of all. Before starting at ABC’s Emelyn paid very little attention to Aubrey. Every so often she might acknowledge Aubrey, but it was inconsistent at best. It was especially hard to watch Aubrey try to engage Emelyn and get little to no reaction. That has completely changed. Emelyn watches Aubrey, laughs at Aubrey, and even plays with Aubrey. With the addition of Hattie, we’ve seen Emelyn quickly form a bond with her new baby sister too. I know this new connection will likely bring on sibling rivalry in the future, but that’s a welcome result of sibling engagement.

It’s been an eye-opening experience reflecting on this past year. We are beyond grateful to ABC’s for believing in our little Emmy. They know she’s far more capable than any assessment or test shows. They see her potential even when we can’t. We’re eagerly anticipating what Emelyn will accomplish in her next year with the loving and caring folks at ABC’s. We’re also so very grateful to the care providers, therapists, grandparents, and others who work with Emelyn on all these new and emerging skills. It’s super cliché, but it seriously takes a village.

One happy middle child.