Thursday, June 25, 2015

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.

Monday, June 22, 2015

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

Wednesday, June 17, 2015

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.