New diagnosis, new therapy, new opportunities…

We’ve had our fair share of diagnosis days with Emelyn. Some were scary, some were puzzling, and some were welcomed with open arms. In June we headed to UVa with Emelyn to see her developmental pediatrician, Dr. Norwood. Our major goal at that appointment was to officially have Emelyn diagnosed with autism spectrum disorder (ASD). Why? Is an additional label really necessary? We felt it was and so did Dr. Norwood.

Prior to our appointment we spent time documenting Emelyn’s communication, behavior, and socialization skills/deficits to help make a case for the diagnosis. These are the criteria, as outlined in the DSM-V, medical professionals use to diagnose ASD. After having several people say, “Autism – Emelyn doesn’t have autism,” I thought we might be in for a battle. With four pages of notes, we were ready. Turns out Dr. Norwood had been thinking of an autism diagnosis for Emelyn since he first met her, but wanted us to first uncover the genetic components of her delays.

While Dr. Norwood had been thinking an ASD was in Emelyn’s future, it really hadn’t entered our mind until we visited Chicago in April. It was only after meeting several thriving girls with DDX3X that we realized why they were making the strides they were, especially in the area of communication – they had intensive applied behavior analysis (ABA) therapy (they too, often, but not always, had an ASD diagnosis). In looking at the original study (and only study at this point) published about the DDX3X mutation, 53% of girls have documented “behavior problems” such as ASD. As I learned more about ABA therapy it started to make sense why it was helping these girls and why it would have the potential to help Emelyn as well.

Upon receiving Emelyn’s ASD diagnosis, we immediately began the process of enrolling her at ABCs of ABA which is an ABA-based clinic. In addition to having to have the ASD diagnosis to do this, it also meant we had to withdraw Emelyn from Salem’s special education preschool program. At ABCs Emelyn receives treatment five days a week for just over four hours each day. While it’s called a clinic by insurance and medical standards, it looks and feels like a preschool setting. Emelyn has a team of ABA therapist/technicians who work with her day after day to overcome barriers to communicating, socializing, and learning. For each child at ABCs, just like for every child with ASD, the barriers are different. Emelyn’s plan of care is specific to her and feeds off of her other therapy goals.

Emelyn’s ABA therapy is built around positive reinforcement, which sometimes is just a hug or encouraging “yeah, Emmy – you did it!” and sometimes it’s a chance to splash in water after walking ten steps in her gait trainer. What I can tell you is we’ve seen remarkable changes in Emelyn in the eight weeks since she started there. She’s using her hands more, she’s become much more in tune to her surroundings and other people, and she’s starting to use her iPad to make choices between two different options. These are things we’ve been working on for more than a year now with little success, but in eight weeks at ABCs she’s made huge strides.

It’s not uncommon to pick Emelyn (or Emmy as she’s affectionately called at ABCs) up from school and hear, “She’s mad at us today. We really worked her hard.” Yet the next morning her smiles and giggles tell us she’s ready to go back for another day of hard work and cheers from her peers and therapists. Just saying the word school lights up her eyes.  

It's easy to see why one of the moms at
ABCs told me her son said, "Emmy just
laugh and laugh and laugh." 

While receiving an autism spectrum disorder diagnosis may have previously sounded scary to us, we welcomed this diagnosis because of the opportunity it offers Emelyn to reach her full potential. We still remain hopeful that Emelyn will one-day be able to communicate with us, and we feel ABA therapy has the best potential to help her reach this goal.      

At least she didn't say bah humbug to school...

Who would have thought it, but Emelyn may have enjoyed school more than she enjoyed Christmas. Leading up to Christmas, Emelyn seemed into the holidays. She enjoyed the Advent services at church on Sundays, she listened to Christmas music with interest, and she even cracked up every time we asked her if she wanted to sing Jingle Bells. You would have thought celebrating Christmas with family and friends would have been fun too, right? What two year old doesn’t love presents, lots of cousins to play with, and unseasonably warm December days? Not Emelyn, that’s who! It was all just a little too much for her. Even the wrapping paper and bows were met with tears. She was over it before Christmas day even arrived. While Aubrey opened presents (typically everyone’s presents for them), Emelyn attempted to crawl out of the room, sometimes before the first present was even opened. And when we attempted to return her to the group, we were met with a very cranky little two year old. By the Monday following Christmas, she was back to her chipper self and while she had some new toys to play with, she still ventured to her old ones, as if to say, "I’m really not into the whole Christmas thing." I guess there’s always next year.

Emelyn with the giggles on Jan. 5, her first
day of preschool at East Salem Elementary School.

School, on the other hand, seems to be a winner in Emelyn’s book! She went from high-strung and cranky to laid-back and up-for-anything…in other words, back to her normal self. She got on the bus like a champ. The look on her face as she rode the chairlift in her stroller was priceless. And circle time, complete with story and singing, went well too. I was a little worried she might decide she could crawl away if she wasn’t interested, like she does at home when I pick a less than thrilling book or song. Luckily, we’re off to a good start. Thanks for all the love and excitement as Emelyn began her new journey this week. We’ll be sure to keep you posted as her journey continues.

Daddy showing Emelyn the bus on the first day.

Hippotherapy

No, it’s not therapy on a hippopotamus – though wouldn’t that be fun. No, hippotherapy is a form of therapy using a horse. Emelyn began hippotherapy in August with her occupational therapist. While I wasn’t sure what I was expecting, I’ve been incredibly excited to see how she’s progressed. It’s not just the progress she’s made on the horse, it’s the progress she’s made because of the horse.

Emelyn cracking up her therapist, Megan, and the
volunteers at Healing Strides.

Hippotherapy uses the gait of the horse to provide input similar to a human’s gait. When Emelyn started in August she required quite a bit of core support on the horse, however, within just a few short weeks Emelyn now requires very minimal support. And more importantly, those advancements on the horse are translating into her everyday development skills. When Emelyn started hippotherapy she would drop an object in her right hand if you placed an object in her left hand. She didn’t seem to have the ability to coordinate both hands at the same time. Fast forward six weeks and she’s now able hold an object in each hand simultaneously for nearly half a minute. 

Clearly riding side saddle is just as funny.

There are large motor benefits to hippotherapy as well. The gait of the horse improves stability, balance and strength, while helping to “normalize” muscle tone (read my layman’s explanation of low muscle tone here). These are all areas of weakness for Emelyn that have shown improvement over the past several weeks.

Backwards...why not!?

While we’re thrilled with the physical improvements we’re seeing in Emelyn from hippotherapy, it’s also a blast to see her so happy while riding. I’m definitely a believer in this non-traditional form of therapy. Special thanks to Healing Strides of Virginia in Boones Mill, as well as the numerous volunteers, for the good work you do for so many little kiddos who benefit from hippotherapy and therapeutic riding. 

Summer Progress

Splashing in the pool, playing in the grass, blowing bubbles in the warm sun, and flying through the air in her swing – these are a few of Emelyn’s very favorite things. If she could speak, I’m confident Emelyn would tell you her season of choice is summer. As summer 2015 wraps, I can’t help but be grateful for the progress Emelyn has made over the past several months.

In June, Emelyn started pulling herself from her belly to a sitting position. This comes after more than a year of working on hands-and-knees in physical therapy. By the time mid-July came around, Emelyn was army crawling several feet, then popping up with ease into a sitting position. Of course this put her in the dreaded W-sit position. However, the W-sit brought another development, this time on the cognitive front. When we asked Emelyn to, “fix your legs,” she would swing her legs around in front of her. Shortly after that, we started noticing her following other verbal instructions, such as, “stand up” and “give me a hug.” This was adding to her growing vocabulary of receptive language. 

In early August Emelyn began pulling herself straight up onto her knees. Within just a few weeks we heard a crash one night. Emelyn had pulled herself from her knees to her feet and knocked over her quilt rack in her room. We were ecstatic, and of course, promptly lowered her crib down to the lowest setting. We didn’t want the next crash to be her! 

Emelyn pulling herself to her knees.

Emelyn pulling herself to her feet. You
can see the quilt rack she knocked over.

While we’re making progress in the receptive language category, expressive language is still fairly limited. We’ve worked over the summer to give Emelyn a voice. In July we introduced the Speak for Yourself app. However, we’re still struggling to get Emelyn to use the app consistently. The verdict is still out on whether Emelyn’s cognitive skills are the challenge, or whether her motor skills are the challenge. Overall though, we’ve been thrilled with Emelyn’s progress this summer. We look forward to an equally productive fall.