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.

Someday I will wish there were sand in my bed...

Tonight as I climbed into bed, I found myself brushing out the sand from my sheets that my son had carried in on his legs and in his hair the day before. I was kicking myself for not throwing my sheets in the washer earlier today. (At least I got my comforter washed.) Instead of complaining (like I might have another day), I found myself being thankful for that sand in my bed. It meant my son had spent time playing and getting dirty outdoors. It meant he had had fun dumping that sand all over himself and making a great big mess. I thought to myself "be thankful in this moment because there will come a day you won't have sand in your bed anymore. You won't have a sandbox in your backyard, or toys in the sunroom/playroom. Someday, it will just be a sunroom. And you will wish you had sand in your bed."

If you had asked me 18 months ago what I saw for my son's future, I would have said "I have no idea". 18 months ago was when we discovered he had Autism, (although he wasn't officially diagnosed until 8 months later). His speech had regressed from 5-10 words to zero. In those 18 months, he has made more progress than I ever thought possible. His speech took off about 10 months ago and he has not slowed down since. He is now speaking in full sentences and is the most social kid on the playground. I no longer hold the fears I once had about his future. He has proven to me that he is capable of literally anything. I now feel that the sky is the limit for his future and he will be able to do anything he sets his mind to. He has already overcome some of the most difficult obstacles he will ever have to face. I cannot wait to watch him and help him explore this world and discover his passions. I know he will do great things.

But until then, I will keep welcoming the sand in my bed.

It would be easier for us to quit. Here's why we don't...

My daughter has been taking dance lessons since she was 18 months old, with the exception of the year my son was born (that was too much for me to handle by myself). I don't know whether she particularly enjoys it or not, but she tolerates it. She tolerated it more this year than last year, probably because she's been going to the same studio and had the same teachers for 2 years so it is a regular part of her routine now. Last year it was a struggle every week to get her dressed and ready for practice...she resisted. This year, it was much easier to get her ready, but during practice she still seemed aloof and uninterested. She has a teacher at the studio that has been by Karys's side since day one. She  has to give Karys one-on-one attention all throughout practice or she would probably just wander around the room while the other students dance.

The teachers or studio director have never once made us feel unwelcome or like we were a burden for them. I'm sure some days they think about how much easier it would be if Karys were not in dance (as do I and as does Karys I'm sure), but we all keep trudging on because we see how much progress she's made in the last two years. She's not an expert dancer at 5 years old by any means, but the progress she has made can be seen in her increased level of participation and in her social skills. It would be easier for us to quit. I think about that nearly every week, and especially at the end of the year during recital week. I have to use her picture schedule to prepare her for putting her costume on and being on stage for 3 nights in a row. I have to make sure she takes a nap and eats enough beforehand so she doesn't have a meltdown in the dressing room. And there is really no way to prepare her for sitting in the dressing room for 3 hours each night. She just has to tough it out....without mommy.

Two out of the three nights last week she did amazing. But Friday night I thought we were going to have to make a run for it and head out before the finale. She got upset in the dressing room so one of the volunteers was walking around the hallway with her and she happened to see her brother and I (who were taking a break) and after that it was utter meltdown chaos for both of them. They were both wailing uncontrollably in the hallway and Karys kept saying she wanted to go bye-bye. I texted my parents for help ASAP because I knew I needed to separate them so I could settle Karys down. After 15-20 minutes of me trying to talk her into returning to the dressing room, one of the AWESOME moms in the dressing room (that was able to relate to Karys last year as well) calmed Karys down enough to talk her into going back on-stage for the finale at the last minute. Each of the past two years, Karys sits on her special teacher's lap during the finale. This is the only thing that keeps her regulated. But during the finale, her teacher has to stand up and accept an award. Friday night (the night of the meltdown), Karys started wailing on-stage, so her teacher went back to sit with her. Saturday night, instead of crying, Karys took it upon herself to walk up to the front of the stage with her teacher to accept the award. She was smiling and waving at all the moms in the audience that looked like me. She finally found me and the rest of the family in the audience and her smile lit up the auditorium.

I know it is not always easy for the teachers, or me, or for Karys. But there are moments that make it all worth it for me, and hopefully for them and her too. I don't keep Karys in dance because I think she loves it (maybe someday). I keep her in it because I want her to stay involved. I want to give her the opportunity to make friends. I want to give her opportunities to build her social skills, and face her auditory sensitivity. I keep her in dance because being around other kids and having these experiences is how she will learn about the world. In just a few weeks I will be in the wedding of my best friend whom I met through dance when I was three years old. Karys may or may not be blessed with those same friendships, but I am not going to deny her those opportunities. No matter how hard it is some days.

Karys's Picture Schedule

Karys with Miss Sarah

My BFF and I at a dance recital in 1989, age 5

Sometimes I try to remember what life was like before my kids were diagnosed with Autism...

Sometimes I try to remember what life was like before my kids were diagnosed with Autism. Before the talk my mom and I had in the kitchen wondering what was going on with my daughter. Wondering why she wouldn't talk directly "to" us, but rather "through" us. Why she wasn't interested in making friends. Why she wouldn't say "mommy" or "milk" or "snack". Then 2 months later, realizing my son had lost all of his words. I now have words for these things: echolalia, regression, Autism. Spectrum. Disorder. Back then, I had heard the word "Autism" but I had very little idea of what it meant. Now, not even 2 years later, I can tell you the most widely-used, evidence-based interventions. I can tell you all of the other challenges that sometimes come along with Autism: words like anxiety, mood disorder, ADHD, OCD. I can tell you what books to read, what websites to research, and how much you will need other Autism parents in your life. I can tell you how hard the right teachers and therapists will try to help your child(ren). I can tell you that the chances of your child making progress are probably really good (even if it's slow). I can also tell you how much progress YOU will make. Not just by learning about,researching and advocating for Autism. But in becoming a better version of yourself.

When I try to remember what life was like before my kids were diagnosed with Autism, what I remember is how selfish I was. We all have our own struggle with selfishness; some more than others. To my credit, I have been there for my babies everyday since the day they were born. I have provided them shelter, food, love...all the basic needs. But, until recently, I never saw things from their point-of-view. The past five years were pretty rough on me, and most days I was more worried about my own feelings so much that it overshadowed their feelings. [Enter Autism diagnosis]. My daughter has a lot of problems with emotional regulation. [Enter stacks of books on this subject]. As I kept reading, I saw a theme emerging. [Spoiler alert]. The secret to helping your child learn to regulate their emotions is to take care of YOURSELF first. Make sure that all of your basic needs are taken care of first before trying to successfully raise an emotionally healthy child. If you are happy, your child will be happy. All of your emotions reflect onto them. No child should have to take on unhealthy emotions that are not their own. Let them start with a blank slate and create their own emotions. And in order to do that, you need to get out of their way. Don't be a barrier. Be a light. So that when you try to remember what life used to be like, all you will be able to see is how much better it is now.