Earning my autism PhD

I haven't written anything in a while. There is too much in my head and too much in my heart. I want to write DAILY of the victories that we have.
Grayson said 5 words together. At one time. In a sentence. I'm not sure if the impact of that is lost on you, but let me assure you, that's HUGE.

He has recently started not only receiving hugs, but giving them. He's never been opposed to touch, thank God, but he never initiated the contact until now. My child GIVES ME HUGS. Seems so little, right? So simple and small and overlooked.

 He looks to the sky when I point to a bird or a cloud. It's so little and so big all at once.

I'm so encouraged by the progress and ecstatic that he's opening up to the world in the way that seems normal to me but then I doubt myself at how hard we push him. There's nothing wrong with him. I need to alleviate the anxiety and stress that his body feels when things are too much, to help him learn how to cope with that and give his body and mind what it needs. But let me repeat.... there's nothing wrong with him. But he still needs services to be the best little Grayson he can be.

 In a world where we are supposed to be celebrating diversity I still get dirty looks in the mall when my kid decides to interpretive dance, rather than walk. I have to stare the woman in the face sitting across from me in the packed restaurant, at 6 pm, in the middle of the floor because that was the only table and lord help us we needed a booth to keep him sitting, daring her to comment to me on the fact that my child is not sitting quietly on his rear end like her face is telling me he should. And he was SO well behaved. He sat, mostly. He ate. He chattered at us. And to those who know, the unbelievability that we went to this restaurant, because he asked(let that one sink in for a second) and no one left in tears or took him to the car half way through... that is like a freaking Olympic gold. But still. But still our kids with differences, any differences, are stared at. Talked about. Complained about. The need to stay home and tuck him away, keep him safe, keep me and my husband and my older child safe from stares and words is so overwhelmingly large. I've said it before, I'll say it again, some days I want to slap a label that says " I'm autistic! Stop glaring at my mom!" on him so that people get it. Other days I don't want anyone to know there is anything different about my child because some days different=bad. Am I right? But the thing is, I do neither. We go to the mall and we interpretive dance. And some people glare at me, and others laugh and tell me what a joy he is. Because HE IS A JOY. He is a ball of light and happiness and motion 99% of the time.

But here is where my new PhD is coming in. I wish you could have asked me in November what I knew about autism so you could see how far I've come, we've come as a family. Oh the things I thought I knew. I knew nothing. I still feel like I know nothing. This degree is hard earned. It's earned by experience, trauma, joy, melt downs and wins. It's by reading. Oh the reading I do. Sometimes it gets to be too much and my husband finally says " No more blogs for awhile, ok?". Sometimes I'm seeking answers to questions I don't know how to ask. Sometimes I'm seeking comfort, but mostly I'm seeking knowledge. We see an amazing LMT through a study we are a part of. This woman is incredible. She has so much knowledge and insight and all the things I need and want to have and don't know how to gain. We talked yesterday about articles I've been reading and the impact of QMT on autistic kiddos and how it works. And why it works. And all these big words, medical words that I have no idea what they mean other than I can start to wrap my head around the very basics of the make up of an autistic kiddo. And I'm learning, ever so slowly. But I want to know it all now.

 I want to be this fountain of knowledge that can advocate for my child and understand him, his needs. I want to send a thousand emails and make calls to the researchers, doctors, therapists, MOMS AND DADS who get it, who can teach me, who can answer my questions. But I can't. I don't know where to start. And I realize, I must not be the only one feeling this way, right? So, how do I find these people, how do I become one of these people for someone else? How do I help someone with my words the way my favorite blogger, Jess,adiaryofamom.wordpress.com does? I don't know. But I'm trying to figure it out. In time, maybe my posts will become beautifully arranged pieces that will resonate and be impactful. Maybe someday my words will help someone heal or understand or know its ok to not be ok. But for now, they will be scattered, as I am scattered. They will be a mash of joy and fear and jumping from one place to the next. But I'll get there. I hope.

What is normal?

This is a post from my facebook page, Choosing Beautiful- Our life with ASD  from a few weeks back. I'm struggling lately with balance. How much is TOO much for my 4 year old. How many therapies is the magic combination? What will be the best thing for him? In the middle of that, all of this feels so hard. So not normal. Sometimes I want to hide away, hide him away so that no one can ever look at him differently. But, that's not fair to him. He has to learn and grow and interact. I've been quiet the last few weeks because I have so much to say that I can't seem to say anything. But it's coming. In bits and pieces I'm finding the words to help myself and maybe someday help others. Follow my page on FB too!  https://www.facebook.com/Choosingbeautiful 

 

I don't love this photo of myself. But it's one of the few I have of the 2 of us where he's smiling and engaged with me. He wasn't a huge fan of the sand at the beach, at first. And when he was done, he was done. But the space in between was peaceful and beautiful and though I loathe this word, normal. I'm starting to see, in small flashes, the child my baby is becoming. He was engaged with his brother, his dad, his friends. He helped Gavin bury brads feet and he helped brad dig holes. Brad said dig a hole! And Grayson went to work. So, yeah, teachers who tell me my kid does not have the ability to understand let alone follow verbal commands without pictures or being shown, go ahead and suck it. That's not kind but he's showing me daily that the things the professionals in his life tell me are not always true and right and law. We didn't stay in the sand too long, but my ball of constant motion enjoyed the sun and sand and watched the waves. We went in public, on a crowded beach, with success. He didn't run away. He didn't melt down. He let mom sit and watch and enjoy her boys playing together and apart and just be. That's progress, folks. I'll take it.