Lost in a Moment Without Autism

Sometimes I get lost in the moments and forget that Hailey has autism. It is something that I never thought would happen. When she was diagnosed, as strong as I seemed to be about it I was sad and scared for the future. I had to grieve the child I thought I was going to have and adapt life to the situation we were in. I grieved for the friends she wouldn’t have, the vacations we wouldn’t  go on, the songs we wouldn’t sing together and the games we wouldn’t play. I felt like this heavy stone of autism would forever sit on my shoulders and on my heart. A cloud of hard situations and missed opportunities would hang over my head for a lifetime. I thought I would always be aware of the differences.

We are 5 years after the diagnosis and I am so happy to say I was wrong. SO WRONG! Today I realize I did not have to grieve all of those things, I just had to adapt the expectations. Hailey has been to Disneyland, the Santa Cruz Beach Boardwalk, and many of the other places I ventured as a child. We do these things a little differently, we get a special pass to not wait in line (BONUS) and we have to be a little more careful with where we pick to eat, and take more breaks but other than that, we have a blast every time!

Recently her and I took a camping trip together, just the two of us. She was in awe of staying in an air-stream (an adjustment I would have assumed years ago would be hard). We laughed and played and went to the beach and made s’mores. We did everything I would have done with her if she were typically developing. We connected and bonded and made lifetime memories. Nothing about the autism got in the way of it being a joyous experience. When it was just the two of us, I often forget she even had autism, it seemed all she had was fun!

A few weeks prior to the camping trip we attended a classmates Birthday party. Yes, the little girl also has autism and they did not interact much at the party but she was invited and was sooooo excited. I cried when we got the invitation. Another life experience my mind had robbed her of at an earlier stage in the diagnosis. It was amazing to watch her sing Happy Birthday to the little girl with the other kids, to watch her eat cake and laugh when her peers did.

Speaking of singing. Hailey and I sing Happy Birthday probably more times in a day than most people do in a year. She loves to sing, and dance. Our Whitney Houston dance party in the living room is always a hit. We even sing songs she has made up. Her creativity is truly one of a kind. 

This past weekend we were at the pool and she was playing in the water with her dolls and splashing and kicking, just like I would of at her age. Nothing seemed weird, different, overwhelming. I wasn’t at the pool with my autistic daughter, I was just at the pool with my daughter. What a relief!

It is so refreshing to have this new view, five years out. To see that things work out and that adaptations are just a part of life but that doesn’t make the life any less memorable or enjoyable. The moments when I forget about the autism are coming more and more frequently. That is not to say that some situations aren’t still hard. . . . (sooo hard) but they are becoming less and less. My worries fade a little more each day as my heart and our bond grows.

For all those mamas new in the diagnosis stage, I know what I am saying it hard to believe. You can’t see it now but your life will not be consumed by Autism forever. Everyone important in your life will learn to adapt with you and one day you will be in a moment with your child and it will just be that. . . . your child, having fun, just the way they are supposed to be.

My Social Media Life Vs. My Real Life

You know those happy family portraits from your friends that pop up in your Facebook feed while you are having a crappy day? Don’t let the things get you down. I am here to tell you that they are not true. I used to post pictures of how perfect my life was while in the background it was breaking into a million little pieces. I hid the imperfections, the failures and the fears behind happy photos with heartwarming captions. 

When I posted that picture of my husband (at the time) and the flowers he had waiting for me at home along with a newly cleaned house and I captioned it with how lucky I was blah blah blah (barf!). . . What I was hiding with that picture was that a few nights prior he had come home drunk . . . again, and mad that I was on the phone with my mother and not liking the way I loaded the dishwasher. That rage turned into a verbal attack of my character, my looks, parenting skills and my future and then ended up with his fist through our wall and a promise that if I didn’t listen to him I would not be happy with the consequences.  A few nights before that, he didn’t bother to come home at all, it interfered with the affair he was having.  I never mentioned any of this in my post.

When I posted the picture of my daughter smiling in her autism shirt and I said how her smile lit up my heart and I was so over the moon in love with being her mom no matter her differences . . . What I was hiding was I had slept for about 2 hours the night before, and they were not in a row. My daughter had woken up several times due to her autism and sensory issues and thought it was time to play in the middle of the night. What I didn’t mention was that the 24 hours prior to that I had battled her to eat meals, get dressed, go to school, basically do anything but yell. Meltdown after meltdown made it hard to leave the house for that time period and I was in belief that the only word she was interested in was NO! (Please don’t get me wrong I do love my daughter unconditionally and feel I was born to be her mom but I never mentioned how hard it was)

When I posted that quote about being a strong, independent woman and then I wrote that I was so happy with the progress I had made in starting my new life as a single mom. . .What I was hiding with that post was I was scared shitless. While being out of an abusive marriage was a step in the right direction I was strapped for cash, not having any time to myself, realizing how many things I did not know how to do around the house, and feeling soooooo incredibly lonely. I was pretty sure I would be alone, poor, and confused for the rest of my life, some strength and independence that was!

When I posted about my new boyfriend and our kids playing on New Year’s Day and I said I was so happy they got along and what a wonderful year this was going to be. . . What I was hiding was his daughter drove me and my daughter absolutely NUTS! I mean I have never been around a child that needed that much attention in my life. It was a constant circus and as much as I loved my boyfriend at the time I could not wait to go home after that weekend! I also didn’t mention that I was noticing our relationship changing and I was not sure we would make it through the year (Spoiler alert: we did not!).  He went from thinking I was an amazing woman to thinking that I did nothing right. I was too overweight, I didn’t dress in the style he liked, I let my nail polish chip, and I was too involved with my child. A great year? It was a miserable two months before we finally ended it but no one on social media knew that.

When I posted about the next guy I dated and I hash tagged it #newbeginnings(corny I know). . .What I was hiding then was I was scared to even begin anything. What would make it work with this guy when it had failed with all the others? He was amazing with my daughter and we had a lot in common but what about the red flags I was already seeing? The girls that would text him all the time, the fact that he didn’t want me to meet anyone in his life, that he was always at the bar spending most of his time and money and when he could squeeze me in I was expected to be relieved to see him and pay for everything.  If this was the “new beginning”, how would the end be? (Another spoiler: this guy ended up to be a good guy and I was just over reacting to red flags and the kinks got worked out)

When I posted the picture of the firetruck at my old job with cancer awareness banners on them and I said that I was happy to work for a place that cared about the well being of people . . . What I was hiding is that this was the most toxic place I had ever worked. The people in my department couldn’t give two shits about the well being of anyone (ironic being that they were in emergency services but that is a whole different story). I woke up miserable every day that I had to go there but it was a well-kept secret on my profile feeds.

What I am telling you is that we never know what is behind a picture so we can’t let it affect our lives. What we can do is start the trend to be more honest about our lives on social media. To let others know that it sucks for us too sometimes! That life happens.  I have come a long way. If something good happened I will still share it but it will be true and it will be posted along with all the bad things, all the stresses, the funny times, the sad times, the real times. It is scary to be out there saying “hey this shit isn’t perfect and TOTALLY not how I thought my life would be but I am surviving”. But you know what else it is? It is freeing and I encourage you to try it!