I really feel like I can identify with this fathers message.
Word for word.
This may be his story, about his daughter...
but in a way it is my story too,
and every one who has an Autistic child.
I find it so perplexing, with how common it is these days... that it still feels so isolating.
Maybe because each child on the spectrum is so different, every parent feels like they have it harder.
I don't know.
I sometimes feel so alone in the struggle, like no one understands how hard it is, for me... and especially for Harry. BUT there are so many parents (just like Lou in the video above) who feel the exact same way. It is comforting to know I am not alone, not that I ever really thought I was, but it is nice to know there are other people out there who feel the way I do.
It doesn't make the day to day things easier, but it helps.
I am thankful for the tremendous family support I have, and understanding from my friends.
The past couple weeks I have been reading the book, Thinking In Pictures by Temple Grandin. It is probably one of the most fascinating and insightful books I have ever read. Every night when I would read another passage, I would feel as if my eyes were opened a little more. Even though much of the information wasn't new to me, the way she explained it, made it easier for me to take in, and apply it in my life... and in Harry's life. I can not express how much reading this book had changed my view, on a lot of things. This book opened my eyes, to all of the possibles out there (and also not just for Harry or others with Autism, but certainly more so)... not that I didn't know they were there before, but sometimes when you are down in the trenches, it is hard to see the silver lining.
I admire Ms. Grandin, and her passion. The book explains how she thinks, and how other individuals with Autism may or may not think. It also documents how the unique way she thinks propelled her career, and allowed her to see things from another view, a cow's eye view.
Since last summer I have had her HBO movie on my dvr. I have stopped and started it many many times. Most of the time to overwhelmed by how close it hit to home to finish it. Today I finally finished it, and I am so glad I did (I am also just as glad I read the book before watched it). I thought it was nothing short of brilliant. It showed perfectly the way she thinks, and how much she fought to be heard, and understood. Going through her many symbolic doors, to a new world and new challenges. It is very inspiring, not just for those with Autism, but us "normal" folk as well.
I have spend the better part of this last year coming to terms with Harry's Autism diagnosis. Then, even when I thought I came to terms, and I embraced it, and I decided to fight for and help Harry, I still had to come to terms with the fact that he may never be able to express the genius that is hidden inside of him. He may never speak, or be able to explain to me how he sees things, or what his hidden passions will be. He may never get past his sensory issues enough to be a part of everyday life, school, colleges, relationships. This time next year Harry could be talking in sentences, asking me for things, laughing at jokes, singing songs... or he could be exactly the same. Seeking comfort in his blankets, and being alone, and hardly ever participating with the family. This has been something that I have really struggled with. I can get over the little every day things, if I know where we are going to end up, but it is so hard not knowing. I have to believe it will be something more, something great...even something "normal". And just as much as I have to believe that, I think I also need to be okay with the fact that he may not be those things. He may always live with us, or maybe a group home. He may never go to college, or even a main stream school, he may never serve a mission. We don't know. And I think now I am okay with that. It took awhile to get there, and some days are better than others, but we are all okay with it now.
I am really so excited for this next year. It is going to be scary, stressful, nerve racking, and hard for all of us, BUT it also holds so much hope. I'm excited to see how Harry is going to do it school. I am excited to start his ABA therapy (just as soon as I find someone, I am thinking October). I am praying for positive change, and a better understanding of my little guy. I am excited to learn new ways to teach and help him (and hopefully more energy to do so after I have the baby). I feel like I understand now, more than I did before, how important it is to introduce my children to as many opportunities as possible. Different ways to look at the world around them. It seems like such a simple concept, and it was something I already knew, but I feel more ready and able to do it. (It is so hard to explain). I pray, whole-heartedly, that I can be the Mother that my children need, meet their different needs.
So in conclusion, read the book. Whether you know someone who is Autistic or not, whether you think you know all about it or not... I think it will change the way you see things.
So Clark has this new thing that he does, all the time, that is really cute...
and also really annoying.
He apologizes, for everything... everything.
You must think I am crazy for saying that is annoying, but just you listen and decide for yourself.
I can't even look cross eyed at him without him apologizing profusely at me.
"Sorry Mom, sorry." In this whiny manipulating voice. "Be happy Mom, I'm sorry, BE HAPPY."
And the way he says it, with this overly apologetic tone, so dramatic... I have no idea where he learned how to act like that. Also, I have no idea where this "be happy" thing came from. But I have to be happy and smiling all the time. If not, then we start the "I'm sorry and be happy" speech all over again.
It makes me feel like such a monster.
Like I am so mean to him all the time,
and he feels the need to just constantly walk around saying he is sorry.
The other day he spilled a drink in the car. I didn't say anything. I wasn't even mad. I didn't even sigh in exasperation. I just said oh well. And he went on and on, "I'm sorry Mom, be happy, I'm sorry Mom, be happy". Until I lost it, and I yelled, with the huge fake smile on my face, "I am happy, now shut up".
Nice one Mom. Geez. I just can't win. I wasn't even mad...
This new phase makes disciplining him so hard. Because instead of listening to me, he is so concerned that I am smiling and happy, that I can't even be stern or lecture him about something.
I really don't know where any of this came from, or why it started. I feel like I am happy a lot. I am way lenient with him, and I hardly discipline him like I should. We are a loud family, so I do yell probably more than I should, but most of the time it is not out of anger... I am just trying to be heard over all the noise.
I have been trying to check myself more lately, so I guess that is good, I try to not get as frustrated, and be calmer. I just hate the feeling that I am being manipulated by a 4 year old.
Oy. I'm just hoping this phase passes quickly. I am tired of trying to reassure him that I am happy all the time. And I really wish I could just give him a time out with it becoming such a huge production.
Apparently we can not leave Harry with a baby sitter any more.
He used to be so good when we would drop him off at places,
mostly cause we only use our friends and people the boys are comfortable with.
However, the last couple of times we took Harry to a babysitter, he would scream the whole time. When I went to Harry Potter a few weeks ago he spent the entire time by my friends door, screaming and banging his head on the floor. I mostly thought he didn't like where we were taking him. Maybe there were too many kids, or some strange thing was setting him off. But then other day I dropped him off at my girl friends house, someone he likes a lot and sees multiple times a week, and he still cried and yelled the whole time. He has never done that before at their house, not so much fun for them.
There is really nothing you can do when Harry decides he doesn't like something, nothing at all. Sometimes you can bribe him with food or a change of scene, but most of the time you just have to ride the tantrum out. And the tantrums are never pretty. There is screaming and wailing, and gnashing of teeth.
It can be scary, and I have the bruises to prove it.
I wonder what the change has been.
It started sometime this summer, he never had issues with sitters before.
I wonder.... maybe he is just missing me! Do you think???
Is it possible that he actually likes me??
You would think, and I hope, that he would acknowledge that he likes me when I am actually around, rather than giving me a cold shoulder all the time.
I guess he would just rather wait, and torture the kind people who watch him, to show me his love.
We don't go out that much anyway, and soon even less than we already do when the little baby comes.
Maybe we can look for a new sitter that will come to the house,
and maybe that will help him not be so angry when we leave.
But for know I will just be happy to know that he likes me, even if it's just a little.
It is just the four of us...April, Jason, Clark and Harry. We love trying new things, visiting new places, and being together as a family. This blog is our family journal, our ups and downs, big steps and little steps...all things, big and small.
Harry is 2 years old. He loves music, books and words, he can read all day long. He loves to be outside, he is a quiet, thoughtful explorer. He is determined, curious, and has very ticklish feet. Harry's Autism can be quite challenging most days, and I long to figure out his little mysteries, but I appreciate the new ways he helps me look at the world. He is forever my chubby little nugget, I'm so happy he was sent to our family.
Clark Michael "Big Tuna"
Clark is 4. He is all about having fun, and joking around. These days Clark's world revolves around Star Wars, Mario and Indiana Jones. He loves his friends, and playing video games. He sees everything as a game, and a adventure. I love that he makes me laugh when I am in a bad mood, and how he reminds me not to take things so seriously. We couldn't live without him.
Just the two of us.
April, The MOM.
I am the Mom. I am sassy, plumpy and sometimes shy. I love reading, taking pictures, and watching too much tv. I am learning to be crafty, and I'm forever trying to loose weight. To me nothing is better than hanging out with my family, and friends.
Jason, The Dad.
Jason is a great Dad, he loves his boys so much and works hard for our family. He works for the Coast Guard in the medical field. He loves football, writing, and eating too much junk food. He loves to listen to (boring) talk radio, and is always busy working on his schooling.