What's in a name?

I've been itching to get this post up for awhile now. I started this blog with no clear idea of what direction it would take or what subject matter I would cover. I now know that the answer to that is lots of directions and lots of subject matter. I mostly talk about Autism because that is what I know and see everyday. But I also talk about other "generic" mommy things.  One thing has remained constant however, and that is the name of my blog. I recently connected it to my Facebook page so people are able to follow it there. On that page, I also share other articles or blog posts I follow and that I find relevant to my life and hopefully to a few of yours. And once in awhile I might share a funny meme. Because how are we expected to survive parenthood if we can't laugh about it?

I don't even remember how I came up with the name for my blog but I am really surprised I haven't grown tired of it and changed it like I usually do with most things in my life. But it still encapsulates me and what I want to say. If you're reading this, you are more than likely a mom (or a fan of moms), and you more than likely put your mom responsibilities before everything else in your life (hence, "mommy first"). But then there is another side to all of us that we don't get to partake in all that often: our rockstar side. You know, your 18-year-old self that wanted to grow up and be ______(fill-in-the-blank). Maybe you followed your dream, or maybe you took a more practical path. Or maybe your dream was the practical path (I never was very practical). Whatever path you took, we are all here together now, stuck somewhere between diapers and college tuition) trying our best. Occasionally, we are rockstar mommies, but more often than not, we are just mommies. And that's okay. But just because we might have had to put some of our personal dreams or passions on hold for a few years (or 18), doesn't mean they're not still part of us. We all have a little rockstar inside us and maybe someday we will be rockstars FIRST, but if not, that's okay. Because being a mom IS being a rockstar.

k.

What if I hadn't

As parents, we spend so much time wondering "what if I had..." when it comes to our children. For example, what if I had ordered more speech therapy for my child? What if I had doubled up on their play therapy hours? What if I had enrolled them in that Autism school instead of public school? What if I had spent more time interacting with them instead of watching tv/reading/sleeping? What if I had taken them to a different doctor? What if I had caught it sooner? You can spend the rest of your life asking "what if I had" questions and, believe me, you will NEVER find the answers. By definition, it is impossible. Unless you figure out how to rewind time. In which case, please let me know.

So instead, I recommend an alternative to asking "what if I had" questions. Try asking "what if I hadn't". Ask anyone that knows me and they will tell you I am typically a glass half-empty type of person. So trust me, it is not any more difficult for you to follow this exercise than it is for me. But after all, us parents work SO hard for our kids every single day and will continue to do so for the rest of our lives. This goes double for single parents, and quadruple (or more) for parents with children on the Autism spectrum (or other disabilities). So, give yourself a break for 5 minutes a day and ask yourself "what if I hadn't?" What if I hadn't recognized that something was amiss with my child? What if I hadn't started asking questions and doing research? What if I hadn't had them evaluated? What if I hadn't taken them to therapy last week? Or the week before that? What if I hadn't read that article on that intervention that offered a breakthrough for my child?

Sometimes we get so focused on what STILL needs to be done that we forget what we already HAVE done. Of course it is EASY to get discouraged when you compare certain aspects of your child's development to a neurotypical child. But it is counterproductive to compare even two neurotypical children. Instead, compare your child to your child one year ago. Or two years ago. Chances are you have seen great progress. So instead of asking yourself "what if I had", ask yourself "what if I hadn't" and give yourself a pat on the back.

k.

Last day of preschool 2014-2015.

Today I know that my son likes pizza

Today we went to my kids' favorite place in the entire world...the zoo. I'm not going to lie, it might be my favorite place too. If you know us or follow my blog, you know that both my son and daughter are on the autism spectrum. My daughter has had a fascination (aka obsession) with elephants since she was barely 3 years old. Last night, laying in bed, I could barely sleep because I knew today was such a big day for us. Not just because we were going to the zoo; we've been to the zoo lots of times. But this was our first trip since last summer and I knew today would be different. Different because so much has happened in our lives since then. None of the usual changes that a typical family would mention, but changes that have altered the way my children and I are able to communicate and engage with each other.

One year ago today, my daughter said "mommy" to me for the first time. She was 4. She had probably used the word 1,000 times before, but in reference to some movie she was reciting. That was the first time she had said it to ME, with purpose. 

My son regressed when he was 18 months old and lost all of his words. We were back to square one. Maybe even lower than that because before we could get him to talk we had to figure out WHY he had stopped talking. He started picking up a couple of words again around his 2nd birthday and then really took off around 2 1/2 years. Today, at age 3, he said "lion", "giraffe", "elephant", "gorilla", "look! Over there!", "outside", "this way!", "mommy", "zoo", "eat", "water". You name it, he said it. There is never a question about what his wants and needs are anymore. When we got home he said "pizza!" He wanted pizza for dinner. What a simple thing for a child to ask for and yet to me, in that moment, it was the most amazing thing in the world. The fact that he can now not only say the word "pizza" but that he knew what he wanted and thought to ask for it floors me. And while I hope I never take for granted moments like that, the truth is I probably will. But right now, on this day, it is still so fresh in my mind what it was like 1 year ago, 2 years ago, when neither of my kids could/would tell me what they wanted, or what they were thinking about, or what they enjoyed. But today I know that my daughter likes to run through the zoo taking in every animal exhibit as quickly as she can. And today I know that my son wants pizza.

k.

How Do I Do It?

I get asked all the time, "how do you do it?" I got asked that question when I was a single mom of one. I got asked it even more when I became a single mom of two. Then even more after they were both diagnosed with Autism. I've never had a good answer for that question. And not because I don't know how I do it, but because some days I DON'T do it. Some days I am a good mom. And some days I'm not. Of course on the days I don't feel like being a mom no one usually sees me because I'm hiding in my bed. No one sees those days. But every mom has them. Even moms of typical children that have husbands for support. Everyone needs to go into hiding once in awhile. But I've been reflecting on the whole "parenting" thing a lot lately, and I think a good answer to that question is that even on the days I want to hide, I still get up the next day and do it all over again. Sometimes I miss a beat, but I keep singing the song. (Not literally of course. No one wants to hear that.) I'm not the only person in the world that's life didn't turn out the way they'd planned. I'm not the only single mom. I'm not the only person that hurts.

I remember being asked the same question anytime I reached a goal or accomplishment. "How do you do it?" I always remember thinking "I did it because I wasn't scared. Because I had seen people before me do it, so why couldn't I?" While I don't think people should take that same approach to deciding whether to have children or not (you should be very afraid), it did work for me in almost every other area of my life. But I did make the choice to have my children, so now I am choosing to put on a brave face (almost) everyday (and faking it the other days). Are there days when I think maybe I should not have been trusted to raise little humans? Of course! (Lots of them). But there are other days when I think "we're alright...we're doing alright".

k.

A trip to the candy store

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.

k.

2014 Cleveland Walk Now for Autism Speaks

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.

k. 

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 walknowforautismspeaks.org/cleveland/karysandkai.

Thank you all for your love and support!
k.