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.

Hands Free Mama - Baby Steps

Sometimes you all will just have to listen to me talk about books. At the moment, I am reading Hands Free Mama by Rachel Macy Stafford. I started it several months ago but stopped a couple of chapters in due to the large amount of  guilt that was setting in. I started back where I left off today and I feel like I have a much more positive outlook (and am experiencing a tad less guilt). As Rachel says in the book, "The hopeful part of living Hands Free is not about the past; it is about the critical choices we make today" (@handsfreemama). I have long used the excuse of being a single mom for my addiction to my iPhone. After all, non-single moms have husbands to entertain them, keep them company, and talk to...right? All parents have difficult jobs, but being a single parent is just different. It's lonely. As a single mom, my phone was my outlet to the outside world. When I was stuck in elmo/dirty diaper world, I could pick up my phone and feel like I was somewhere else for a few minutes (or hours). It was my only escape. My smartphone was my social life. Pathetic, I know. Since moving to Ohio and being closer to family, I do have a few more opportunities to engage in a real, non-electronic social life. Although having a two- and four-year old does still limit me.

Social media has started to bore me lately, so instead I have been spending more time writing. While this is a far more productive hobby, I have been growing increasingly aware of how much I have neglected my kids over the past two years. I can sit here and say most of it was done to protect my sanity, as I struggled through a very long period of depression. Also, I had to take a second job for a year or so to make ends meet. But now all of that is over. No more depression and no more second job. So, I have already started putting my phone down more often and playing with my kids. Yes, PLAYING. As in getting down on the floor and actually interacting with them. We play board games, put together puzzles, play cars and dolls and whatever else their little hearts desire. I no longer tell them to go play on their own or with each other or ignore their cries for attention. (At least not as often). I try to remind myself that they will only be little once, and it won't be for long. There will come a day when I long for them to ask me to play with them. "Today my child stands before me wanting, needing, and hoping to be chosen. Tomorrow might be different" (@handsfreemama). I am still not 100% in the habit of this but I am getting better. And I can tell my kids are happier. I want them to have as many great memories of their childhood as I have about mine. I don't remember my parents being glued to their phones or a computer (mostly because we didn't have those things when I was growing up, but still). "Being responsible for someone's childhood is a big deal. We not only create our own memories, but we create our child's memories" (@handsfreemama).

If anyone is interested in reading the book along with me, please feel free to comment on my posts and let me know how it's going! "For the first time in a long time, I was not just managing life, I was living it" (@handsfreemama).

k.

More ketchup...er, I mean catch up

My last entry didn't quite cover everything my family has been up to over the past six months, so I felt like I needed another paragraph or two to cover the important things.

Most importantly, I want to talk about how much progress the kids have made since we sought out intervention, school, therapy, etc. for each of them. Karys turned 4 this past March. Kai turned 2 on February 29 (or February 28 or March 1...he's a Leap Year baby). Back in November, Karys was evaluated by the public schools here and enrolled in PreK and started regular speech and occupational therapy during school. I cannot brag enough about the Port Clinton public school system and their attention to ALL of their children. They have some of the best practices in place for kids with special needs, and they embrace inclusion whole-heartedly, which is something I feel is very important. Anyway, around the same time Karys started school, I started thinking about Kai and his development. He had recently lost all of his speech (about 5-6 words). Words he had started speaking around 14 months old, he was no longer using. While Karys's speech problems raised a red flag, Kai's speech regression brought forth an entire army in my mind. I started doing MORE research, and evaluating him myself with the online questionnaires. The results of his M-CHAT blind-sided me. Not only was he "highly likely" to be autistic...he scored significantly higher than Karys even. Karys's team at school told me to contact Help Me Grow, which is the state-funded program in place for children under three years old (the public schools handle all children over three). I was JUST starting this whole "autism journey" with my daughter, how in the world did I now find myself doing the same thing with my son??? It just didn't make sense...or seem fair. Despite my hesitations, Help Me Grow and the state of Ohio once again surprised me on all levels and far surpassed all of my very low expectations (and they would have surpassed them even if they'd been at their highest). For once, I couldn't believe how well-prepared our government was and what great, quality programs they had in place to take care of families in our situation. I kept asking, "but it's income based, right?" If I'd learned anything from being middle class my entire life, it was that we're the ones that get screwed. We never qualify for any government assistance, yet we don't quite make enough to pay thousands of dollars for private therapies, doctor appointments, etc. And my health insurance had become basically useless over the past four years thanks to healthcare reform, so I knew I was out of luck there (more on that later if you don't believe me). But I kept getting the same answer: "no".  None of it was income-based. Karys was attending school a year earlier than "typical" kids were allowed, at no charge. And Kai would begin receiving services through Help Me Grow for no charge as well. I was finally grateful for something in this big, huge mess. So, Karys started PreK in November, and Kai started therapy with Help Me Grow in December. Oh, and another bonus of HMG...they come to your HOUSE! I didn't have to shuttle him all around the county or state taking him to all these different appointments!

In the eight months since we started this journey, Karys and Kai have both made more progress than I ever expected. We still have a long way to go, trust me, but progress is progress. One of the services Kai receives through HMG is called the P.L.A.Y.  Project. If you have not heard of it, look it up. It was developed by Dr. Richard Solomon, a Developmental Pediatrician located in Ann Arbor, MI. The P.L.A.Y. Project was EXACTLY what I'd been looking for. I loved everything about it. I started doing more research on Dr. Solomon and realized he was within just a couple hours of our house! I called his office and much to my surprise, he was accepting new patients! Karys and Kai already had appointments scheduled with another developmental pediatrician, but by this point I did not want to settle for anything less than Dr. Solomon himself. He is a powerhouse in the autism field in my opinion and his intervention methods were right in line with what were quickly becoming my own personal "autism-mommy commandments". So, I immediately scheduled appointments for Karys and Kai for August 11 and 12, respectively. It seemed like a lifetime away when I made them back in February, but it is now just a little over a month away. I am both nervous and excited. My kids are already both getting the best possible care they can receive in my opinion, but Dr. Solomon will be able to provide them with an official diagnosis of Autism Spectrum Disorder...or not. Either way, it will be the ending of a chapter for us. And, no doubt, the beginning of a new one.

k.