Wednesday, September 17, 2014

I am Spoiled

I am spoiled. There, I said it. For the first three years I was a mom I felt sorry for myself: "poor me, single mom, being left to fend for myself and my daughter". Like I was the only single parent in the WORLD. But things don't always work out the way you expect. Most of my family had been transferred out of state during my first pregnancy. So there I was, essentially alone, with the exception of one or two family members. But looking back, I didn't have THAT much to complain about. I had an amazing, well-paying job with flexible hours and understanding bosses. And I did have family, even if they weren't in close proximity. And, most importantly, my babies were healthy. Unfortunately, most days all I could focus on was my failed relationship. It didn't even bother me that much to be a single mom, I had always been independent. It was more about the rejection, and now I would have to find the hard way out by myself.

Fast forward five years. I now have LOTS of family around, that help out in every way possible. I still have the same well-paying job with flexible hours and understanding bosses, but now I have the bonus of working from home also. Both of my kids were diagnosed with an Autism Spectrum Disorder this year, but that is not stopping us. We also bought a house this year, and my daughter started taking therapeautic horse riding lessons and is in her third year of dance lessons. My kids are still both, essentially, healthy. I. am. spoiled. And I know it.

I love writing, and I write every chance I get in some form or fashion. (Be thankful you only see a portion of it.) I was recently featured on the Autism Speaks blog. I love writing about our journey with Autism. But sometimes I feel guilty. My kids were both diagnosed with "mild" Autism Spectrum Disorder. Meaning, we don't have to live with a lot of the things other families raising children with ASD have to live with. So when my story gets told and theirs doesn't, I feel a tad guilty. And not because I don't think our story should be heard too. But because a lot of other parents and families don't ever get a chance to write their story. For a lot of them, Autism consumes every second of every day of their lives. They're so exhausted by the end of the day that they don't have energy to do anything else. I know families like this, I've seen families like this, I have even had days like this. And I don't know how they feel when they read our story or see our pictures, but I hope that they know that I know what they go through. I know my kids' and my experience with Autism is probably not a tenth as stressful and overwhelming as theirs. We are lucky we don't have many medical expenses due to Autism. We are lucky we are able to attend events and other activities that are so overwhelming for others. Believe me, there are some events we avoid as well. But for the most part, we are lucky. I hope when they read our story, they don't think I am asking for sympathy from anyone, especially them. I hope they know that the reason we attend these events and the reason I write is not only on behalf of my kids, but on behalf of their's too.


2014 Cleveland Walk Now for Autism Speaks

Monday, September 15, 2014

Mommy Has Bad Days Too

One of the hardest things as a parent of a child on the autism spectrum is hearing people say "but he/she seems fine". I just want to say, well they are fine. But they have good days and bad days just like the rest of us. And I have learned which places/activities will help foster good days and happy moods and which things will not. And like any too-busy, overwhelmed, stressed out mother would do, we try to avoid the not-so-happy places. But it has taken me four years to get to where we are now and to give my children the least-stressful, most fulfilling life possible. Chances are, if someone is saying "he/she seems fine", we are in a happy place. So of course my kids are going to be on their best behavior. What those people don't see are the bad days, which seem to be getting fewer and farther between...or maybe I've just gotten used to them. They don't see the tantrums when we go somewhere unexpectedly or when I don't tuck her in the right way or put the right movie in. They don't hear the yelling when I drive a different route to school or when I let her food touch on her plate or when I try to brush her hair or get her ready for school. Luckily, we are overcoming those things one at a time, but when people say "he/she seems fine" it belittles how much progress we've made. It could also be seen as a sign of HOW MUCH progress we've made, and on some days I do look at it as that, but not today. I AM thankful for all of the progress we've made, but I also know how much further we have to go.
If you look closely, you will see Karys in the background against the window. There is nothing wrong with this picture. I have seen Karys do this many times when I visit her school or daycare, and she is probably happy as can be playing by herself with some little plastic toy animal. This is how I usually find her when I visit or pick her up...playing alone. Not participating in the activities that most of the other kids enjoy. Most days this does not bother me. I know this is just part of her personality and it's what she enjoys and she's happy. But today is different. As selfish as it may be, someday I want to see her just sitting at the table painting with the other kids. And loving it. It seems like such a simple thing that most parents probably take for granted, but it would be one of the best days of my life. She loves to paint and draw and she's actually very good at it, but I know the reason she will not participate is because of the social aspect. If I brought out paints at home she would light up. In fact she even asks for the paints if she sees our art bin. So for the people that feel like saying "he/she seems fine" to me or any other parent, please try to remember that you don't see the whole picture. The moments of our lives I share on my social media are the good times, when everyone is smiling. I don't stop my kids in the middle of a tantrum to take their picture. You don't see those times, just as I probably don't see the hard times in your lives. So please don't underestimate our struggle.


Friday, September 5, 2014

The Big One

Well, this post is the big one. Karys and Kai both had their autism evaluations with their Developmental Pediatrician a few weeks ago and they were both diagnosed with mild Autism Spectrum Disorder (ASD). This is the diagnosis we were expecting, but it is still such a shock to think that just 1 year ago we had no idea what the past 12 months would hold in store for us. And BOTH of them?! I want to say "what are the odds of that?", but I can tell you...15%. There's a 15% chance that if a child has autism, his/her siblings will also have it. We submitted a swab for genetic testing on Kai to see if it could provide any clues about what is causing the autism. We should have the results in 3-4 weeks and I will give you an update then.

The good news is that the kids are already enrolled in the best possible programs and are receiving the best possible therapy. So all we have to do is keep doing what we're doing. And they are both making a tremendous amount of progress. I can't ask for anything more than that! Kai has picked up 10-15 new words just in the past 2 weeks. It was a tad stressful having them both diagnosed a day apart, but might as well lay it on thick if you're going to lay it on at all, right? I just wanted closure as soon as possible to this first step of our lifelong journey. Now we can officially say we have a diagnosis and we can move forward with our future, whatever that may hold in store for us.

Our first step in the rest of this journey is doing whatever we can to contribute to autism research and helping other families. Karys, Kai, and I, along with other members of my family will be participating in the Autism Society of Northwest Ohio Lace It Face It Walk tomorrow morning! ASNO provides support and resources to individuals with autism and their families across 12 counties in Northwest Ohio. Then next weekend, we will be participating in Walk Now for Autism Speaks in Cleveland and raising money for Autism Speaks. If you would like to join us or make a donation on behalf of our team, our team page is located at

Thank you all for your love and support!