Tuesday, March 28, 2017

Progress

Yesterday we took Hartley for her follow up appointment at Children's Hospital with her Developmental Pediatrician. Brian and I talked the night before how, for once, we weren't dreading an appointment because we could plainly see all of the phenomenal progress Hartley has made since starting school. 

When we got there the doctor could see the change within the first few minutes; it is that noticeable! And maybe 30 minutes into the appointment she told us that Hartley's amazing transformation, in such a short period of time, was the best she's seen in her eight years of working. Brian and I already knew that her progress has been nothing short of incredible. We went from an appointment in the fall where she wouldn't respond to her name, wouldn't give eye contact, and wouldn't answer questions to having a child who could do almost everything that was asked of her. 

I said to the doctor that I think Hartley's teachers are miracle workers. That's seriously how I view them. Her doctor said that while she's sure Hartley has wonderful teachers, not to discount Hartley. She said that even back last fall we knew Hartley was very bright. The fact that she is very intelligent and very willing also deserves credit for her great progress. When I think of it that way, it kind of makes me realize she had all of this inside of her, and her teachers and school seemed to be the magic key to unlock it for us. There will never, ever be words to express how grateful I am for that, and how much I truly believe that early intervention is a life-changing tool for children like Hartley. 

For now, her doctor still thinks Hartley's Autism Spectrum diagnosis is still appropriate for her. She is making incredible strides but her social communication skills are still not completely in line with what you'd typically see for a girl her age. The doctor did said, however, that she could foresee Hartley progressing to a point where a Social Communication Disorder diagnosis would be more appropriate or even possibly someday outgrowing any sort of diagnosis! 

For us, we don't get too caught up in worrying about diagnoses or labels. In the beginning her ASD diagnosis was helpful to me because it felt like an explanation for some of her eccentricities. Now it's helpful because it is giving her access to these services that are helping her so much. However, I can't lie and say that I wasn't excited at that though that Hartley could be in the small percentage of young children that do outgrow their ASD diagnosis. 

She gave us our homework. Someday I'll come on here and elaborate about this. I kind of wish I'd documented from the beginning the various tips and exercises that we've been given throughout the last year or so. I actually think it would be helpful to look back on for ideas of things to do with Patrick! 

And Hartley will be seen again at Children's downtown office in the fall after school starts to do more in depth diagnostic testing. I love how thorough this doctor is. Something Brian and I vowed when we first heard that Hartley was "behind" (doctor's words, not ours) last winter was that we would never allow Hartley to slip through the cracks. We vowed that we would take her to receive whatever testing she needed, and we would follow up to get her whatever help she needed, and we would do all that we could. Now that Hartley is getting better, we will still forge on with the same attitude; she's getting better BECAUSE of these professionals and services. Her doctor said that yesterday. She likened it to antidepressants. She said if someone starts taking antidepressants and they feel better, it doesn't mean they shouldn't continue on with treatment because it is the treatment that's making them better. Hartley's services through the county and her doctor are making her better, but that definitely doesn't mean she shouldn't continue with them. 

All in all, this appointment wasn't exactly new information. As Hartley's mom, and the world's leading Hartley expert, I already knew that she had drastically improved since her last appointment. But there's nothing like a doctor at a renowned children's hospital be blown away by the progress you've been lucky enough to witness. 

If I could talk to me back in September, the woman wiping away tears while she heard her daughter receive her "official" diagnosis, I would give her the biggest hug. If I were to tell her it would all be okay, she wouldn't have believed me. She loved/loves her child so much that she couldn't help but worry for her. But I would tell her that next spring her daughter would be able to tell her about her favorite things and her feelings. I would tell her that Hartley would grow to become the absolute best big sister, so maternal. I would tell her that Hartley would engage her! She would ask her to come to the playroom to have a tea party! I would tell her Hartley would be picking out her outfits and her snacks. That she would put on her own rain boots and proudly boast, "Mama, I did it!" All of those little things that so many parents out there are wishing and praying for, I get to have every day. 

It is never, ever lost on me how lucky Brian and I are. I know that it's a beautiful combination of hard work from lots of various people in our lives including ourselves and our little girl, and someone up above looking out for us.


Saturday, March 18, 2017

Baby Ballet

A week ago I was on Facebook and the picture that popped up on my "On This Day" feature was a picture of Hartley at her very first ballet class. I remembered like it was yesterday how hard it was to take that picture. She was beaming because the teacher had given her a purple foam sticker on her hand for a great first class. We, however, didn't actually have a great first class.


Hartley was so excited to go to ballet that day. But as soon as we got there, that changed. It was a new setting with new faces, and she wanted to go home. She clung to me like a tree frog for the entire class. So I galloped and her hopped and danced with her little leotard clad body plastered right against mine. From time to time she would cry. Conservatively she cried at least a quarter of the class. I wanted to cry. I wanted to just storm out and go home. But I didn't. I stayed as calm as I could. I comforted her as my tired body did the moves that all the tiny ballerinas were attempting alongside their moms; I was doing it with the added weight of my 2 year old on my hip. 

I remember talking on the phone with my mom after the class about how I was going to give it a couple more classes at least but my true goal was to make it to every session unless we were sick. But I cried. I knew Hartley was one of the youngest in the class. She wasn't the youngest because another mom of a sweet little blonde girl confessed to me that she signed up for the class even though her daughter was just shy of turning two. 
I also knew that being a Saturday class there were probably some working moms in the bunch, and their daughters had a leg up on being in a "classroom setting" at daycare. So I knew I couldn't expect Hartley to exactly be in the upper echelon of the class. But Hartley stood out in class like a sore thumb. She was the only one who cried, the only one who had to be carried the majority of the class. She was the only one who couldn't even attempt most of the moves. 

Now before you think I'm being tough on her, that not all girls are cut out for dance - this class wasn't/isn't about "dancing" for me. Sure, I think it's wonderful to expose even the youngest of children to the arts & sports but these classes are mainly to learn other skills. You learn social skills, being in a structured environment, following directions, respectful behavior. Heck, Hartley took swimming lessons as an infant. That wasn't about her learning how to swim. It was her getting acclimated to a new environment (the water) and new people/faces. I've heard parents say classes like these are pointless because the child isn't learning the actual skill that young but that's not why we do these activities with our kids. Hartley has taken swimming lessons, music classes, ballet & basketball - not to be a prodigy but to try new things and socialize. 

I'm also not saying that I expected my two year old to obediently follow directions like some perfect little solider either but I'll admit, I was a little surprised just how much we stood out. 

Each class got a little better than the one before. I only had to carry her about half the duration of the second class, and she only cried a couple times. Most of the girls weren't being carried at all and none of the other girls cried. The first handful of sessions of my goals for her didn't have much to do with following directions - mainly just to walk on her own and not have any meltdowns. 

As time went on, I'd push to have her maybe try a few moves throughout class. Usually me contorting her body into a stretch unless she fought me greatly. 

I'd find the songs from class on YouTube and try to get her to practice at home. I got her to practice the forward roll at home. She eventually did it during class with help but I was the only parent who had to walk up each class to stand next to their child and help them. The teacher actually pulled me off to the side one day and told me what a great job I was doing; she could see us getting better each class. Our goals were very different from the other mother daughter pairs but we were accomplishing them little by little! 

One day I was sick and couldn't attend so I sent Brian in my place. I was surprised when they were home so soon after leaving the house. Brian said Hartley kept trying to run out of the room, and when he'd bring her back in she would cry. He said it was awful so they only made it about 15 minutes before throwing in the towel. I knew what he was talking about because that happened in the beginning for me, too. The next week the teacher told me that Hartley was much more comfortable with me than with Brian so we should stick with me bringing her. 

Now, we were making progress but when I say we stood out - I mean that. We did. I wasn't always okay with that either. This was a chapter in my life when there was a big part of me knew something wasn't quite right, and there was another big part of me that wasn't willing to accept that. 

Well, her "recital" ended up being one of the hardest moments of parenthood for me to date. It was terrible. All of the progress we'd seemed to have made over 12 weeks disappeared on the day that family members were invited to watch our class routine. It wasn't just "not following directions", it was running around interrupting all of the other girls trying to dance and focus. The other girls were accepting their certificates. Their proud dads snapping pictures of their perfect ballerinas standing with the teacher and beaming for the camera. And my daughter entered the scene like a tornado taking down anything in her path. She ran in front of the girls as their parents were trying to capture the moment. She'd throw herself in front of them on the mat and wouldn't get up. So I'd run and pick up her thrashing body. She'd be laughing like a mad man or shouting. 

Before they could even call Hartley's name to get her certificate, I did it - I stormed out of the classroom for the first time. I absolutely couldn't do it anymore. I couldn't be the calm, patient mom anymore because what she was doing was no longer just a trivial annoyance. She was ruining things for the other girls in her class, and I wasn't okay with that. Brian and Patrick followed us out of the room. Once we were all in the van and the doors were closed - I bawled. It was like I finally just hit this wall, and everything came out. 

And I'll never ever forget what I said to Brian in the car. I said, "do those people think I'm the world's worst mother or do you think they can tell?" 

"They can tell, Page." 

I think after 12 weeks of seeing her around peers - seeing where we were and where they were, I knew. And even though I said on the ride home I would never do another baby ballet class ever again, I went home and researched adaptive ballet for children on the autism spectrum. I didn't want my daughter not to get to do something just because it was harder for her. Alas, there are no adaptive ballet classes offered in our area. I'll never forget the amount of frustration and helplessness I felt that day. 

And yes, over something as silly as baby ballet. But I said it before, it wasn't ballet. How was she ever going to learn to focus or listen or follow a direction? How was she going to learn to partner with a classmate or take turns or sit still when she needed to? These things aren't perfect for even the most advanced of toddlers but they were (and sometimes still are) mountains for us. The answer as to how she would learn these things? We had/have to do them over and over and over again, far more times than her peers. 

Hartley wanted to take ballet again in the fall. I had no desire to go back but I did it anyway. The first class was great. We still stood out but we picked up where we left off at the end of the spring session. So I didn't have to carry her and there were no tears. Each class, she improved. And get this, for her recital, she accepted her certificate proudly and got her picture taken. She didn't interrupt any of the other girls' spotlight moments. 


A month ago I met a woman in my MOMS Club, and I thought she looked familiar. She asked if I was "Hartley's mom" - turns out she'd been in fall ballet with us. When she asked if that's who I was, I knew that my girl and I still weren't hard to miss. I'm now much more okay with that. I wonder far less about "do they know?" I think most people do, and that's okay. My daughter marches to the beat of her own drummer; that's who she is, and it's not a bad thing.

And I will say this, while some parents have seemed put off by us at times, there actually have also been some really cool parents out there, too. Her spring and fall sessions there were parents who identified that Hartley was unique, and they did the coolest thing about it - they pushed their daughters to partner with Hartley. Hartley never wanted to chasse with a partner, and a few mom's would seek Hartley out and have their daughters take her hands and guide her. Those moments made my heart so happy. And I'll say it, those are great parents who will raise great kids. 

Kicking off her third season of baby ballet has been very smooth. Her first session last week I felt so good. We do have a leg up because these other little ladies are doing this for the first time and we aren't but she now keeps up well. We are still very much learning though. She still loves to do things her own special way. Today wasn't quite as good as last class as far as focusing and following directions, and we'll have days like that, and that's okay. 

Someone recently said to Brian and I that you can always seek comfort in the fact that no matter how your child is behaving, there's always someone else's kid in the room behaving worse. Well, while Brian and I can appreciate that that sentiment is true for most parents, we've had the humbling experience of being the parents wrangling the child who is doing things far differently from other kids. It isn't always easy. You always hope people around you will be kind and understanding, well knowing that not all will be. But we keep trying. And Hartley is incredible at how she keeps trying, too. And I've come to learn at the end of the day, that's what makes good parents and good kids. They keep trying. I learned that from baby ballet ;)