A Complicated Beauty

It's been a while since I've written. I've started writing a few draft posts but they never got completed because...well, life.

The holidays were wonderful. We all got to spend some extra quality time together. Zayne was especially happy to have me home during the week between Christmas and New Years.

A week before Christmas I came home to find that Zayne had unwrapped every single present under the tree. I was equal parts upset and happy to see this. Zayne has never taken an interest in presents or the process of unwrapping them. Seeing this, I was excited for Christmas morning as I hoped to see his delight when he opened his now rewrapped Christmas presents. Of course, with Zayne you should plan to expect the unexpected. He took no interest in unwrapping his presents and instead, Jake and I spent our Christmas morning chasing him around trying to get him to engage with the rest of us in our Christmas morning routine. It wasn't because he didn't like his presents, he just has no interest in unwrapping gifts (well, outside of that one time).

One of the items Zayne received was a sensory swing and he LOVES this! It hangs in the corner of his room and you will see him bouncing into it, twirling and bopping. It's also a way for us to engage with him as well as he will ask us to swing him in it.

At the end of December, Zayne's school went to remote schooling due to COVID-19. I gained a new found respect for his teachers as it was nearly impossible to get him focused on the activities we needed him to completed. I was extremely thankful to have him return back to classes after New Years. It was also good for Zayne to get back into this routine.

Zayne is attending Speech and Occupational Therapy through school and through private providers weekly. We are starting to notice some differences in the way he is requesting things which is great. We always ask him how his day was at school each evening and he will now respond with "Good" instead of nothing at all (the response we use to get from him). Every once in a while, Jake and I will exchange a glance to each other as he communicates something that is new. This is all really good progress!

Jake and I also started attending Triple P Parenting classes in January. The class is focused on parents of Autistic children. It runs for 6 weeks. We are learning quite a bit and trying to apply what we can at home.

One of the most interesting things I have learned though this experience is that challenges can also be absolutely beautiful. I've had moments over the last few weeks where I broke down sobbing, overwhelmed trying to manage Zayne's behavior. I'm not one to cry in front of my kids but I was literally in a break down moment. And Zayne couldn't recognize my feelings to sympathize or change his behavior, he doesn't understand sadness. Besides the feelings of not being a good parent or not having the answer, knowing that your child can't understand how you are feeling is also a hard part of this journey. He will ask me "are you mad at me?" randomly through the day but he has no concept of what that emotion looks like or what it means for me. The same goes for sadness.

Jake and I have both said to each other that we wonder what is going on in Zayne's head. We wonder how he is really feeling, how he is comprehending things and processing emotions. You can usually tell when Zayne is angry, happy and hurt but the other emotions are hard to see in him.

A newer behavior Zayne that stands out right now is hitting and kicking. He is doing this more now, even outside of the home at school and at his therapies. We are working on strategies we learned in our class to help with this but we don't have a solution yet.

But let's get to the beauty part...when I look at Zayne, my heart just melts. He can do something that is seemingly so mean but then you look into his little blue eyes and you just see this pure innocence. When he smiles, it is the most beautiful and genuine thing in the world. When he is in a state of calm his eyes always seem to be searching, as if they are learning the world around him and just taking things in.

There is beauty in the things that we don't know about him. It's a story waiting to be told and maybe the mystery of it is the best thing.

There is also beauty in having a partner walking alongside of you. In my moment of breakdown, Jake listened and he could relate. He may not express his concern in the same way as me but he gets it and he knows how hard and overwhelming parenting it is to parent an autistic child. I know some mothers who do it alone. I can't imagine that. I am so grateful to have someone at my side through all of this.

As always, I'm encouraged by the progress and trying to focus on the parts that need more support to get better. You sometimes have to rewrap your head around the fact that your child is disabled and that disability doesn't just go away. Autism is a lifelong disability, he will carry this with him for life. I think I forget that sometimes...not because I am embarrassed or because I can't wrap my head around it, but rather because it's natural to think you can cure those things impacting your child.

I want to thank everyone who reads this for giving me a moment to have a voice. It helps to bring some peace and I appreciate being able to create more awareness.

February is my birthday month and I started a fundraiser for Autism Speaks to help with research, support families in need and promote awareness. If you would like to support this cause, please use the following link to support: https://www.facebook.com/donate/245818023707939/