Routines....

This morning my alarm didn't go off. Ryan and Eric missed the school bus and I had to bring them to school. Everything was fine until we pulled to the front of the school and I walked the boys inside. When I was talking to the office lady, Ryan was standing there hanging his head. As we walked toward his classroom, a little girl I recognized from his class walked by on her way to the bathroom and said "Hi Ryan!!" I was thrilled by this because that means that she likes him but when he didn't respond to her I told him that it's rude not to say hi back to someone and that he didn't want to hurt her feelings by ignoring her. I hate to admit it, but I also don't want him to be disliked because he doesn't understand the 'social norms'. He gave a loud sigh and hung his head again. We got to his locker and I waited for him to start removing his winter stuff and backback. He just stood there; staring at the lockers. I knelt down and put my hand on his back. He started crying. I took off his backpack and helped him remove his hat, gloves and coat. He was trying so hard to fight back the tears, but they won. He gave me a big hug and cried into my shoulder. His teacher came out and said "Hi Ryan, are you feeling better?" (He missed school on Friday due to illness) He grumpily looked at her and said "yes". I explained to her that he was having a little trouble adjusting to the change in the routine and I'd send him in after he had regained control. He asked me to help him wipe his eyes off and he kept saying "they're still wet!" because he was still crying....my heart ached. My stomach hurt. I was pissed off. Not at Ryan. But at Autism. WHY is it so hard for my son to change a routine like this? Some kids might LOVE the chance for mom to take them to school instead of riding the bus. Some kids like the routine to be changed up once in awhile. Not Ryan. He likes...no, he THRIVES when things are exactly the same all the time. I wish for him that the world worked like that. I wish we could map out every day so that he never had to feel that chaos in his body, in his mind. I will probably never understand why it's so difficult for him. And I'll never be able to fully help him through those times. And that sucks. All I can do for him is hug him, wipe his tears away as many times as he needs me to and just know that he'll be fine in a few minutes. And buy a second alarm clock.

Thanksgiving

Today I am so thankful for many things. I am thankful for my son Ryan (all my children of course, but this blog is mostly about him) and really, I am thankful for his Autism. This may be shocking (maybe not) but there are so many times I am just HAPPY that he is who he is. Ryan has overcome so many things...and he doesn't even know that. He doesn't realize that some kids have an easier time with things. He doesn't realize that he is so smart and funny. He doesn't realize that he's my hero.
Ryan wakes up every morning smiling and happy; ready to greet the day. He asks me what he's doing that day and doesn't dwell on the hurt or disappointment of yesterday (many of us could take a lesson from this). He gets excited over things most people take for granted. He is gracious and thankful without meaning to be...he just IS. To Ryan, a hug or a kiss is a wonderful gift. Ryan doesn't care about how many toys he has or if he gets the latest gadget for Christmas. He is truly happy. He is the sunshine to my soul when I have a dark day.
Ryan struggles with social situations. He has a hard time placing himself in other people's shoes. He tells me that sharing is "boring". He has great difficulty in letting his little sister play with any toy of his. When things don't go how he expects them to or wants them to he will have a meltdown. But these challenges make him strong. They make me strong.
I owe Autism a thank you.
Thank you for allowing me the opportunity to love a child that opens my eyes to a new perspective every single day. Thank you for giving me more patience than I ever thought I could have. Thank you for bringing me close to other families who have children with Autism- those people have enriched my life in a way I could never fully describe and have been the backbone of support I've needed when I thought I can't make it through one more day. Thank you for helping me gain an understanding for those who are "different" that I wouldn't have had otherwise. Thank you for showing me that those "differences" are what make this world beautiful. Thank you, Autism. You may kick me down, spit in my face and tear my heart apart some days...but when I stand up again, I'm stronger. I'm a better mother because of you. And I thank you.

Music & Music Therapy

Music has always been something that has connected with Ryan. I think a lot of children who have special needs connect well with music because they don't have to think about it, they don't have to answer to it, the music doesn't bug them or ask them to "say this, do that", it just lets them FEEL. And there isn't ever anything wrong with that.
Ryan has been in Music Therapy for a long time now. When we began it was in my home, and I was a part of it, participating with him. But for the last several months, he's been going to MT at a clinic and I don't go in with him. Two weeks ago as I was dropping him off, I decided to stay and see how things have been going and what sorts of things they are doing. It was an amazing experience. Anna (his music therapist) usually has one other boy with Ryan but he was not there this day. Ryan sang, danced and just...shone. He was in a happy place. His speech was clearer than ever. He asked Anna to sing a song, and when she began playing the guitar, he 'shushed' her and said that he wanted to sing it himself. He sang in perfect pitch. I couldn't stop the happy tears from falling down my cheeks.

Chiropractor

While we were at the Autism Speaks Walk Now For Autism in Minneapolis this year, Ryan saw a booth that had a model of a spine on it. He asked to go see the bones, so we went to check it out. The booth was that of a Neurological Chiropractor. Ryan asked the doctor about the bones and he squatted down to Ryan's level and began to explain to Ryan what the spine is, what it does etc. The model had nerves sticking out of it and the doc was holding them and telling Ryan what they did.
Doctor: Do you know what this nerve does? (which made laugh...) It helps to control your lungs. Do you know what your lungs do?
Ryan: They help you to breathe.
Doctor: That's right! Do you know what this nerve does?
Ryan: No.
Doctor: This one helps control your heart.
Me: Ryan, it helps your heart to beat.
Ryan: And it helps you to love.

The doctor and I looked at eachother and smiled and laughed. I had tears in my eyes and I said "yes, Ryan that's true" and the doctor (after being speechless for a moment) said "that's right, buddy, that's right." Then he said that he was going to use that with his patients.
These are the moments that I cherish about Autism. The pure innocence. The untainted thought process. Ryan knows that your heart helps you to love. It only makes sense. And I know my heart was overflowing with love that day.

Diversity

I have always been an advocate for diversity. I've always hated race, gender, religious, and sexual orientation jokes. And after my son was born, I became a strong advocate for those with disabilities of all kinds. I truly believe that God created us in all shapes, sizes, and colors. He gave us all different views, different way to express love and different gifts to offer to the world.
There has been so many children who have taken their lives based upon the fact that "other" kids make them feel "different". What I want to scream is WE ARE ALL DIFFERENT... all of us!! White people are all different...Christian people are all different...Gay people are all different. We are different in so many ways. But we are ALL the same. Every person that walks this Earth is the same. We ALL love. We ALL hurt. We ALL want to be happy. This sameness is what makes our differences beautiful. My son is "different" but yet...he's BETTER in many ways. He loves unconditionally. He doesn't see people with a different skin color than him as anything other than a person. The way he 'sees' this world sometimes blows my mind. And the thought that anyone else could make him feel BAD for being this person that he is, well, it's just maddening. My son has a disability. But he's perfect. I pray that he always knows, really knows, how special and amazing he is because of his differences and that he never feels he's less than anyone else. Because I know for a fact, he's better than most of us. I send my thoughts and prayers out tonight to all those kids who feel different for whatever reason...You are special and amazing. God made you who you are for a reason. Hang in there long enough to let that reason SHINE for all to see.

Behaviors

Ryan has always been...wait...let me start over. Ryan is typically a mellow, easy going, happy child. Years ago when he was a toddler and into age 5 he struggled with his Autism-related issues. He spoke only single words, he had an extremely difficult time transitioning, he would hardly eat any foods, he was very particular about how he wanted things done (to the point where we had to do things several times sometimes to have it done 'just right'), he would meltdown over seemingly simple things, he would self-stimulate, he wouldn't make eye contact, he couldn't hold any kind of conversation, etc etc etc I could go on and on. However, with the intense therapy he's recieved since his diagnosis, I have had the pleasure of watching him blossom into the amazing child he is today. He grew so much in Kindergarten last year. He still struggles with some things but some of the issues and behaviors he had 4 years ago have disappeared completely, or are so rare that it's not worth mentioning. BUT now...now I'm facing a whole new round of behaviors that I'm unfamiliar with. Ryan has become somewhat violent. And defiant. For example, he choked a boy on the bus, he shoved his not-quite-2-year-old sister into a wall, he yells at me, he stomps, he throws things, he bit his sister on the arm... and I don't know how to stop these things, because I have no experience in this area, especially with a child with Autism.
I kind of feel that I may have become slack in my dealing with Ryan. He's been doing so well the last year and a half that perhaps I've let my guard down a bit. But since he's been written up twice at school this year, I need to step up my game again. I have begun reading and researching again. I need to know WHY he is doing these things in order to help him. Some of you may not understand why this is such a challenge in itself. The mind of a child with Autism is a puzzle...it's a maze...it's a mystery. It's finding all these pieces and trying them in this combination, then that combination only to throw half the pieces away and starting over with new ones. Sometimes a child with Autism is hitting because s/he is constipated. Or because s/he is hungry. Or hot. Or mad because someone hurt them and they can't verbally communicate what happened. Or the tag in their shirt is bugging them. THERE ARE SO MANY BIG AND SMALL THINGS that can bother these kids that sometimes we can never figure it out. Most of the time I can with Ryan, especially now that he's pretty verbal...but how does a child tell you why they are frustrated, when they themselves don't even know why.
The trick with Ryan is that I need to help him realize it's OK to be angry, it's OK to be frustrated or hurt or happy or scared or whatever else...but it's NOT OK to hit, choke, slap or bite anyone for any reason. And sometimes, he doesn't even know that he's exhibited poor behaviors. SIGH. It's a giant puzzle. And right now I'm missing the picture that shows me where they go.
But don't worry, Ryan. I'll figure it out. I always do. With the help of the doctors, therapists, books, websites, my Autism mothers who've "been there, done that"...I will put this puzzle together.

Self-Awareness

Ryan spent the weekend with his dad, Casey. He and I were talking today about a few things regarding Ryan, and he said "Oh, there was a story I forgot to tell you. We were on our way to my parent's house and Ryan asked me out of nowhere, 'Dad, what's Autism?'". I asked Casey how he responded and he replied "Well, buddy, it's when a person learns differently than other people" and Ryan said "I have Autism, right, Dad?" Casey said "Yes you do, buddy", to which Ryan said "Oh, okay".

I can't tell this story without crying. He is growing up. He is becoming AWARE. To some, this isn't a big deal, but to a child on the spectrum...it's what can set him/her apart from other children. To my son, he hasn't always noticed what is going on around him. He doesn't look out the window and wonder what people are up to, or where they are going. He sits and tells his Lego Woody doll all the lines from Toy Story 3. So to have a moment where he seems so CONNECTED...its priceless. But then again, it scares me to my core.

Knowing that he has Autism, does that mean he knows he's different? Do the other kids in his class notice? Do they tease him? Does he KNOW that they are teasing him? Do they take advantage of him? All these fears are swirling in my head. I want to protect him. I want to sheild him from this horrible world. I want him to know, to his core, that he is the most special, beautiful amazing person ever to grace this world. I want him to know that he is MORE than Autism; he is Ryan.

But more than any of that, I want the world to know...to know that he IS amazing, beautiful, perfect in all the ways that it is flawed. He doesn't hate, or hurt, or look down upon you. He hugs you and loves you and wants your love back. Please, World...Please don't hurt my baby. He doesn't deserve it.