No More Puzzles

Kayla and I decided that it was time to put away the puzzle pieces and give our blog a much-needed facelift.

The truth is, we have never felt that Hudson was a "puzzle". He isn't someone that has to be solved to be understood, or someone that is almost complete (minus a couple of pieces missing somewhere). He didn't come from a box with a picture-perfect image on the front of what he is supposed to look like. There are no pages to follow on how to construct him properly, and no models to go by.

Hudson is beautifully perfect as he is. He is loving, caring, funny, and sensitive. He's also vibrant and loud, incredibly ambitious, and the smartest kid that we likely will ever meet. We will never stop learning who Hudson is as he grows; but he's certainly the furthest thing from a puzzle to us.

Autism Speaks helped bring the puzzle piece forward as a symbol for autism awareness. And here recently, advocacy groups have started speaking out against the derogatory undertones that the puzzle piece represents. To many, the puzzle piece is symbolic to individuals with autism not fitting into society, or being just slightly out of place.

While it is true that the neurotypical world has a ways to go to fully accept what autism is, we can see that many are trying. We are putting away the puzzle pieces forever and choosing to embrace the vision that we had for this blog when we started it two years ago. The infinity symbol represents that autism has been... is... and always will be... here forever. There is no fad or cure to make the spectrum disappear. And honestly, after seeing all the gifts that Hudson has, we couldn't imagine a world without autism.

Kayla and I appreciate everyone who follows our blog and shares it with others. We are just getting started on our journey to promote Autism Acceptance and hope that you'll stick with us as we continue to learn and grow along the way.

We could not have made this facelift without the help of my extremely talented co-worker. David - thank you for the late hours you spent helping us redesign the theme of our site. We are eternally grateful for your contribution!

Finding Solidarity Through Social Media

Before Hudson was diagnosed I knew very little of autism. It’s embarrassing to admit (considering I work in education) but it never directly impacted me much and I never gave it a lot of thought.

When he was diagnosed I was lost, sad, and confused.

It felt like something you see happen to other people... but now it had become our reality.

I so badly wanted someone to take my hand and tell me “I’ve been through this. It’s going to be ok”. But no one I was close with - or really even knew - had a child with autism.

We were received with love from many people who would try and comfort us. But it was hard hearing their words when they didn’t really understand. Their children were perfect and there was no way they could understand this feeling.

Some people said some horrible things; tried to tell me he was fine, or that autism wasn’t a real thing. Some people didn’t know what to say so they just didn’t say anything, which honestly was just as hurtful.

I don’t exactly remember how I came about this, maybe I was having a rough day or maybe someone had told me to look at some blogs but one day I decided to Google "autism blog." I found one almost right away called Finding Cooper’s Voice. I’m not sure if it was Kate’s beautiful words or her blonde-haired boy (which reminded me so much of Hudson) that drew me in, but I sat and read post after post.

Kate’s son Cooper is very different than Hudson. He is nonverbal and has been diagnosed with severe autism, but she said so many things that I could still relate to. She mentioned the sting of seeing kids who are typical versus her own children, and the black hole of depression she would sometimes fall into. I finally felt as if I found someone who got it.

We even were pregnant at the same time; she was pregnant with her third and I was pregnant with Finn. She had her son a month earlier than I had Finn and I remember being glued to her feed because I was curious how Cooper would receive a new baby, a fear I had for Hudson when Finn arrived.

I’ve looked at Kate as a role model and someone who helped me accept the diagnosis and see that there is hope. She helped me to see I wasn’t alone and it was ok to feel things about Hudson’s diagnosis. She’s inspired me to want to do that for others because I know how lonely it is.

She recently wrote a book, "Forever Boy: A Mother's Memoir of Autism and Finding Joy". I rushed out to buy out it as soon as it came out (even though Matt had preordered it as a gift for me). I devoured it in days. I laughed and cried. I learned a lot of things I didn’t know. As I read her story I felt seen and validated in so many of my feelings. Even if you don’t have an autistic child I highly recommend this book. Not only is this a beautiful story but Kate is a fantastic writer. Read it, then share it with someone.

This past week I received a signed copy of her book. Inside she write me a beautiful message that made me cry like a baby:

“Hi Kayla thanks for being such a loyal follower and advocate and most importantly a mama! Always remember you are more. Keep sharing, educating and protecting Hudson.”

My Journey from 'Awareness' to 'Acceptance'

This month is a celebration; one in which we celebrate Autism Awareness. I’m still somewhat of a newbie at this... but with this “celebration” is the call for not only autism awareness, but also for acceptance. I think it’s easy for anyone to be “aware” of autism. Acceptance, though; that’s tricky. Acceptance doesn’t always come that easy. In fact, we received Hudson’s diagnosis over three years ago and I think just this year I started to actually accept it. When he first received his diagnosis I remember being somewhat in shock… even though we knew it was coming. The day after I desperately made phone calls, sent emails and messages while in hysterics hoping that I could find someone… anyone… who could help me fix my son. Matt and I only told close family and friends at first. It wasn’t something I wanted out in the open mostly for two reasons:

I didn’t want him labeled. I wasn’t ready for that.

I hadn’t accepted it yet. It took me almost 10 months before I could say the words “my son has autism” out loud.

I was grieving. It sounds silly to grieve over something like that, but I was also lost and confused. I had no idea what the future looked like for Hudson.

Would he lose his words?

Would he become aggressive?

Would he have friends?

Even when he was diagnosed the doctors couldn’t answer those questions or even tell us how severe his autism might be. There was a lot of unknown. I felt so much sadness for him, and for us, too. All our dreams for him felt like they were floating away. I also felt angry. I was angry with God for making my son this way. I would cry, “Why him? Why my beautiful boy?” And then I felt… guilt.

Autism isn’t a death sentence so I shouldn’t feel this way. There were so many other people out there who had it so much worse, so shame on me for feeling like this.

It was exhausting. But after three years I’d say I’m mostly there. I still have my moments. Even some I hate to admit, like the time I cried after a particularly difficult school meeting asking “why can’t he be normal?” Once I said it, I immediately regretted it. Some autism parents will tell you they felt relief when they got the diagnosis. It validated their feelings and opened up their world to more help. I wish I could say it was like that for me, but it wasn’t. I just felt so much sadness.

And I’ve learned it’s ok to feel sad. It’s ok to be relieved.

Feeling either way doesn’t make you a bad person. It makes you human. All anyone wants is the best for their child. Now I can openly talk about his diagnosis. I actually like when people bring it up because it offers me a chance to teach them about our experience with autism. It’s why we started this blog; to inform and help others to understand this world.