10 good things about being an autism parent

I am not an optimist by nature, so writing this post is somewhat ironic. But if you are an autism parent, you already know all the hard things about it. You don't need me to remind you (although I would love for others to get a glimpse of what we go through). So, instead, I came up with 10 good things about being an autism parent. Undoubtedly, there are more than 10 good things. You just have to be in the right frame of mind to notice them. So, I hope this list will provide you with a refreshing break from the hard things, if only for a few minutes.

1. Your child is ______(insert best trait here). Everyone has a good trait, a talent, a gift. My daughter is an empath (odd for an ASD, I know). She is empathetic to the point of getting her own feelings hurt for someone else, or crying their tears. My son is athletic. Neither of my kids have motor skill deficits, but my son is particularly active and talented when it comes to sports. He is also a sore loser, but I will not elaborate on that here. (Good things, remember?)

2. Your child does not ask to go to the toy store every time they see a commercial on television. I don't have any neurotypical children but I do know some and every time a commercial comes on or they see another kid's cool toy, they ask their parents for one. Not the case with mine. I don't think they even knew toy stores existed until the past few months when I've been bribing them with potty prize trips to the store to pick out a new toy. I used to have to use picture symbols to prepare them for trips to the store. Now, they understand if I just say "we're going to the toy store", but they still don't initiate the idea. Which is perfectly okay for my sanity...and my wallet.

3. Your child doesn't start talking about Christmas 5 months in advance. My kids don't know what Christmas is unless I show them pictures from past Christmases. They don't know they can ask Santa for presents (I should have started taking advantage of that year's ago). My son has recently (this week) started telling me he wants to be a skeleton for Halloween, which is a HUGE breakthrough. My daughter has still never asked for something like that in advance.

4. Your grocery list could be shortened to 10 items and the kids would be perfectly okay with that. Hot dogs, chips, carrots, yogurt, chicken nuggets, eggs, toast, crackers, ice cream and french fries for my kids. I, on the other hand...

5. Your child does not know what Disney World is. Enough said. 

6. Your child does not repeat cuss words. Unless they have echolalia, as my daughter did. But by some miracle, she never picked up any bad words. I know some 5 year olds that know dirtier words than even me, but my kids appear to still be fairly innocent.

7. If they have OCD tendencies, like my daughter and so many others do, they can buckle themselves in their booster seat when you forget. (This has only happened a handful of times I swear...okay maybe 6). Neurotypical kids would start bouncing around the car yelling "I'm free!", but kids with autism can't help but stick to the good ol' routine.

8. You save money on buying new movies because they watch the same one over and over. You better just pray they don't get stuck on one while it's still in theaters.

9. Birthday parties are cheap and easy. Kids with autism are, by definition, not great at making friends, so the invite list is usually limited to family. Luckily for my kids, I love throwing extravagant parties and inviting everyone and their dog anyway.

10. You don't have to stop what you're doing every 15 minutes to take them to the bathroom because they're probably not potty trained anyway. And you don't have to sit in the bathroom for hours on end entertaining them while you're trying to potty train them. Of course the drawback is that you're paying out the ass (literally) for diapers, but time is money too...right?

What would my neurotypical child be like?

That is the question most autism parents have thought but never said out loud because they're afraid it means they don't love or appreciate their child as they are.

My kids were both diagnosed on the mild end of the autism spectrum. I will admit, it makes my life a little easier and my worries a little less than what they could be. But they are still on the spectrum, and so I do worry. Sometimes I feel guilty for worrying so much about my kids. Like a parent's level of worry should depend on which end of the spectrum their child falls. I know there are individuals that struggle far more than my kids with communication, sensory issues, motor skills, etc. so sometimes I tell myself that my kids must not be on the spectrum. They can talk, they have no motor skill deficits, very few sensory issues. I tell myself I am imagining or exaggerating the whole thing and they should have never been diagnosed or that they have "outgrown" it. I tell myself that they seem almost typical....almost. But what I've learned is that it doesn't matter which end of the spectrum they are on. There is not a competition between individuals on the spectrum to see who needs less or more therapy or who can speak the most words or have the least amount of meltdowns. We all have our struggles and our journeys. We have all had to adjust our lives to accommodate therapies, behavior issues, and our finances, among many other things. I am allowed to worry.

I worry the most on days I get to witness neurotypical (NT) children talking and playing. When you have never had a NT child, you don't know which milestones your child "should" be reaching based on their age because you've never seen it firsthand and after a certain point you lose track of the milestones charts the doctors give you and you start using your own imaginary, slow-motion chart. The older my kids get, the easier it is to see the developmental "gap" between them and their NT peers. I watched a video of a NT girl today, and just watching the way she talked and interacted with her parents was hard to watch. She went to a mall with her mom in the video and didn't have a meltdown. Her mom never had to drag her out of a store. The daughter never screamed or punched or head-butted her mom. She didn't wander off, sending the mother on a full-blown search crawling under garment racks and behind dressing room doors. I looked up the girl's age, hoping she was at least 6 or 7. She was 5. She acted much older than my daughter, but they were the same age.

It's hard to watch NT kids the same age as your child and realize how much distance is between them developmentally and behaviorally. It's hard because you spend all of your time being so proud of your child for all the progress they've been making the past few months/years and then after watching a 5 minute video all you can think of is what you must be doing wrong. And then you feel guilty for comparing your child to another child, because you know you shouldn't. But still you wonder, what would my NT daughter be like? I know you cannot separate the autism from the person, and it is not the "quirks" I struggle with. I love my daughter's personality and her quirks are what make her her. It is her inability to regulate her emotions, or to verbally express certain things to us, or to manage her auditory sensitivity that I struggle with (and by "I", I mean "her"). Those are the parts of her autism that make our lives difficult. I'm tired of the meltdowns, the scratching and hitting, the crying and screaming. And not because it makes my life more challenging, but because I want to know how to help HER life be less challenging. I don't want to trade kids with anyone or make my kid "better". I want to see the smile on her face that I see on NT kids' faces. Not that they are happy all the time and not that she is never happy, but you can see on their faces that they are not struggling internally with anything. On the other hand, you can see on my daughter's face that she is fighting a big battle almost daily. And any good parent hates to see their kid struggle. Especially so young.

So even though I hate to admit it, yes, there are some days I wonder what my neurotypical daughter would be like. Not because I don't love my daughter, but because I DO.

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.