I will know I did everything I could

I've been told a few times that I do so much for my kids or that I am doing everything I can, or even occasionally that I might overdue it (me?). Within a few months of them both being initially evaluated, I enrolled at a university and am working towards a Master's in Special Education - Autism Spectrum Disorders. I wanted to learn how to help them myself and understand therapist/doctor speak (which is still challenging after 2 years). I keep them fairly busy with school, play dates, trips to museums or the zoo, trampoline parks, speech therapy, play therapy, festivals, water parks, equine therapy, etc., etc., etc. If there is something going on within a 50-mile radius of us, we usually try to go to it. Not just for recreational purposes, but because I try to make up for the therapy I can't afford or don't have time for by providing them with "life-enriching experiences". At least, I hope that's what they are. And I'm also having fun and creating memories with my kids in the process (even though after most outings I come home completely exhausted and at the end of my rope). I try to help them learn through play, but at their age and developmental level, even therapy is play. They don't know that it's even therapy. They don't know that every child doesn't have a Ms. Marsha or Ms. Stacy that comes to their house to "play". They think these women are just their friends (which they have become), and I'm going to keep letting them think that as long as possible.

I do cut myself a little slack.  There are only so many hours in a day I can spend researching, reading, learning. And my brain is only so big. I'm not sure much of what I read anymore even sticks. But hopefully, some things stick long enough for me to try them out and if they're successful you can bet your drum kit I won't ever forget it. I accept that I can't study to be an SLP, OT, teacher, MD, etc. all within the next 5-10 years. Luckily, we have found really good ones so I don't need to! But do I kick myself for not reading more parenting books prior to becoming a parent? Yes! Particularly of the non-baby variety. I wish I'd read more of those too, but what I really wish (and what I think a lot of parents don't do) is that I had learned more about raising KIDS. Not babies, because most of those things pass within a year or two. But KIDS. I wish I'd read more about what happens over the next 16-30 years AFTER the first two. Developmental milestones, behavior management, emotional regulation, etc., etc., etc. It would have been nice if my eyes had crossed over the word "autism" even once during my undergraduate studies in human development. Then I might have had a head start.

I hope people know that I do not go to these great lengths because I "expect" my kids' autism to go away. It's not because I'm embarrassed by them. I couldn't care less what other people think (unless they have something positive to contribute). I try so hard because I don't want them to grow up and still have challenges and struggles and for it to be MY FAULT and then have to live with that for the rest of my life. And by MY FAULT, I don't mean that I gave them their autism (although, genetically speaking, I could have). I mean I don't want to look back and KNOW that I could have enrolled them in more therapy or a better school or read up more on interventions. I want to know, without a doubt, that I did everything in my power that I possibly could. And if they still struggle, we will keep dealing with it, and I will be at peace because I will know that I DID EVERYTHING I COULD.

Notes: There are some days I do NOT do everything I could. Some days I just watch Netflix and drink wine. :)

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.

The puzzle piece is not just a symbol of the individual with autism

Most people know that the puzzle piece is the global symbol for autism. It represents the complexities and nuances of autism spectrum disorder and the diversity of all the people living with the disorder (http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/). But, in my opinion, it represents all the long hours parents and caregivers put in day in and day out, trying different therapies and interventions for their child until they find one that works. For me, the puzzle piece has always represented the challenge of finding methods that work best for each of my children. And we get closer everyday to completing our puzzle. That doesn't mean I am trying to "cure" my children or that I expect to someday not have to use the word "autism". It simply means that each day we get closer to finding interventions that allow them to reach their full potential, whatever that may be. That is what will complete their puzzle.

For example, when my son had regressed and lost all of his speech at 18 months, the puzzle was teaching him how to communicate again. The first puzzle piece was using PECS symbols to make requests. The second puzzle piece was learning how to sign (for me and him). The third puzzle piece was his "first" word at 2 years old (even though we'd already been through that at 14 months old). We slowly kept putting puzzle pieces together until now, at 3 1/2 years old, he speaks in full sentences with very little delay, if any. 

Another puzzle for Kai was social skills. I enrolled him in PLAY Project at 2 years old. When he was first evaluated by early intervention, he didn't make eye contact or respond to his name. He rarely played with objects as they were intended (i.e., he would walk around picking toys up and throw them behind his head over and over). Now, a year and a half later, thanks to PLAY Project, he is fully engaged nearly 100% of the time with whomever he is playing. He is the most social child on the playground and will walk up and say hi to every child he meets. His consultant and I, using the PLAY techniques, slowly put the pieces together for Kai and taught him how to play and socialize. Of course, he did all the manual labor. :)

My daughter's puzzles are a little different from her brother's and a lot more complex. Part of the reason is because she is very intelligent, so she thinks she already has it all figured out. At the time of her evaluation at 3 1/2 years old, she exhibited severe echolalia and delayed echolalia. She has overcome the echolalia for the most part (first puzzle piece), but the delayed echolalia and scripting severely interferes with her ability to strengthen her social and social communication skills. We are still working on that second puzzle piece. I began ordering private speech therapy for her this past April, once a week so she wouldn't regress over summer break. It (among other things) is killing me financially, but I knew that she needed that piece of the puzzle. Just in these short three months, she has made so much progress. I may regret spending money on a lot of things in my life, but therapy for my kids will NEVER be one of them. It is priceless.

Karys also receives equine therapy (puzzle piece #3). She doesn't need it for the physical reason that so many do. Instead, we use it to work on her communication and social skills. She identifies better with animals than humans in a lot of ways, so she is more calm and open around animals, which allows her to learn better. For this reason, I also found myself adopting two cats from the Humane Society earlier this year. (For the record, I always swore I would never have cats. This single-handedly proves how far I am willing to go for my children.)

I am in the process of enrolling Karys in PLAY Project, like her brother. I am excited to see the progress she will make. I have a feeling this will be her fourth puzzle piece.

Karys's other puzzle is her emotion regulation. It interferes with a lot of things in her life. I think part of it is triggered by her auditory sensitivity, but I think there are also some underlying anger/mood issues as well, which we will probably not know a lot about for a few more years. 

One of the trickiest parts of autism is all the underlying sensory and emotional issues. Therapy isn't just about teaching them to talk, walk or socialize; it's figuring out the WHY behind those deficits. We are still trying to put that puzzle together for Karys, and maybe always will be. I'm okay with that (as if I have a choice), as long as we are making progress.  We might only find one puzzle piece per year, but eventually, that puzzle will be complete. Even if we never find all the pieces.

What to do when your life becomes small

My life used to be big. I used to travel to places like Brazil, Jamaica, NYC. I moved to the Florida panhandle for a year just because I felt like it. I threw and attended parties. I had significant others. I rarely knew what the next day had in store for me, let alone the next month or year.

Now, everything is so predictable. My job, my breakfast, the charges on my credit card (definitely not small). And very little of it can be compared to my 5-years-ago self. Before you start thinking I am throwing myself a pity party, let me make it clear that I am okay with this (to a certain extent). When I said "my life used to be big", I didn't mean it was anymore "full" than it is now. In fact, it may have been even less full than it is now in some ways.  But it was, without question, bigger.

Most of my days are now spent within a 5-mile radius of my home. A few times a month I venture out 50 miles or so. Rarely further. What reason is there to? I can't afford a vacation, although taking one would probably do wonderful things for my mental health. I am heading to the great plains of Oklahoma next month for my best friends's wedding. Of course, that trip is more about her than me. Yes, my life is small now, and I have chosen to accept that (as if I have a choice). My kids are young (5 & 3). I want them to grow up to have big, adventurous lives someday. But right now, they need their grandma and grandpa, their cousins, their friends, their toys and blankies, their teachers and therapists. They need schedules and consistency and a home. I have provided them all of those things. And we have found a community we love. So we are here to stay for at least another 10-15 years.  

I don't miss my "big" life, although I am glad I had it. I can't say I really missed out on much. I have no resentments toward my current life (although I'm still kinda pissed no one told me how hard this parenting thing was). There is a simplicity that comes with having a small life; something I never had in my 20s. I still find myself creating new ways to complicate things (i.e., going back to school, attempting to date, etc.). Then other days, I wake up at 6 a.m., sit in my sunroom drinking hot tea and appreciate the smallness. My life may be big again someday, but rather than waiting on that to happen, I'm going to appreciate it being small...and full.

It's cuter to be kind

What will happen when my child with special needs isn't seen as cute? <---- I shared this post awhile back when it was first written, but I thought I'd share it again. It's a touchy subject for sure because no one wants to admit to thinking this way, but in all honesty, we do. If we're lucky, we learn to talk ourselves out of those negative thoughts, somewhere between the ages of 20-30 usually. For the saints among us, maybe sooner.

I will be honest here, I think my kids are adorable, both physically and their personalities. And I'm sure they might even grow up to be "cute". (Just for the record: if not, I'm totally okay with that). But what I find myself thinking more and more lately the older my daughter gets is "what if she talks the way she talks when she's 10? 15? 20?" She walks around repeating these cute little random phrases, probably from some tv show or movie and we all laugh and smile because she's 5 and it is cute. But will it be cute when she's 10? 15? 20? Probably not so much. And how will people respond to her if she walks around talking like that? Will they still give her a chance? Maybe so, maybe not. It's a hard thing for a parent to come to terms with. I'm not going to lose any sleep over it for the time being, because the future is so unknown for all of us. And after all, she is only 5. She may grow out of it. If not, I will still love her just as much as I do now. It's the rest of the world I worry about. So please world, be kind...even if you don't think it's "cute".

When you realize all of your family pics are selfies...

I've always loved taking pictures. Mostly pictures of my kids, as anyone that is friends with me on social media can attest. For my daughter's first year of life I probably posted 10 pictures a day of her. Same outfit, same setting, but maybe a slight turn of the head or a new smirk on her face. Now I might post one picture every day or two of my kids. Sometimes more, sometimes less.

I rarely have time to sift through the thousands (yes, thousands) of pictures I've taken of them over the last 3-5 years. But sometimes I take a peek. What I realized today was that the large majority of our family pictures are selfies. Most of the time I captured one or both of my kids from behind the camera. But I decided way early on that I would be damned if I was going to be left out of our memories. So occasionally, I turned the camera (phone) around and snapped a pic of the three of us. Of course it didn't surprise me to come to the realization that most of our family pics were selfies. I was there, I remember each and every one of those special moments my kids and I shared. What did surprise me was the sheer volume of family selfies we've amassed. And also that I'm still doing it. Over 5 years later. I never thought the "family selfie" would stick around that long. I thought maybe someday there would be someone to stand behind the camera besides me for once. Granted, we now live closer to family so we've gotten more non-selfie pics of our family than ever over the past 2 years. But when we're hanging out at home, a selfie or a mom-left-out pic is the only option. And I prefer to not be left out.

This isn't a pity post. I can't even imagine being in a relationship anymore. I'm at peace with that part of my life for now. This post is more about taking a step back and looking at your life and what it's become and how different it is than you ever dreamed. For better or for worse. All of it. Together. One big selfie.