It's Not Denial, It's Hope and Survival!

I don't spend too much time thinking about the future when it comes to Nicky. I would rather focus on the present where I can live in a place dominated by hope and possibility.

I get that some people call that "denial" and maybe it is. I hear people when they ask me “Am I planning for the future” as if to say “have you really accepted the severity of his disability and his need for life long care”. The answer is "yes, sorta". I’m planning just like I plan for my daughters future. I am putting money aside and I have a special needs trust. I know I have to prepare for the likelihood that he will need life long care, but I don’t have to pick out the facility. I prefer to prepare like people prepare for an earthquake in California, we all know it will happen someday, but we don’t live in fear of it everyday.

I really only live one day at a time. I give him all I have in hopes that maybe, just maybe all the therapy will create that magic connection or they will find a cure. Right now, short of a cure the unknown is my friend, it tells me never say never. The truth is nobody knows what causes’ Autism, they don’t know why my son has autism so they don’t know if it can be cured. To me that means maybe it can. So I do every therapy I can, treat him as normal as I can, fight like hell to give him the best shot at life and I move forward everyday treating him like a great kid who’s future is full of possibility, because from that perspective there is hope, and hope keeps me sane.

A Peek into Divorce and Family Through Nickys Eyes

Fact: 86% of the marriages fail in families who have children with autism.

Nicky and I both celebrated our birthdays last weekend. Part of the celebration included a friend taking us to dinner. Our friend was very careful to find a restaurant that would be nice for me and great for Nicky. The solution a nice restaurant with a variety of food and beautiful enclosed booths for privacy. It was terrific, everyone got something they wanted. I was able to enjoy my birthday with my kids at an adult restaurant. No kiddo’s running everywhere, no cartoon character cups, paper place mats and a selection that did not include pizza or chicken fingers for adults! Yippee, it was a grown up evening all around. I even ordered lobster! Evyn got to taste her first soufflé. She tried the lobster and decided she did not like eating food that looked just like it looked in the ocean. The “whole lobster” thing really freaked her out. It was very funny. Nicky got the fanciest chicken and shrimp strips on the planet and he, unlike Evyn ate the lobster and asked for more. He also loved the soufflés.

It was quiet at the table as we ate our dinner, when suddenly Nicky looked up pointed to each of us and said “Mother, Father, Sister, Brother”. Evyn looked at me as if to say “No, and that’s weird mom”. It was a little awkward, so no one said anything. Then Nicky repeated, but a bit louder “Mother, Father, Sister, Brother” and he smiled and went back to his dinner. Wow, what now? Nicky has not seen his dad in 2 years. At the same time I know Nicky has not forgotten him. I know Evyn was thinking that she wished her Dad was there and my guess is the comment was a big fat reminder that our family was not whole in the way she once knew or in the way she wished it to be. I sensed a mild wave of sadness and loss pass through me and Evyn. I even felt for my friend who could not help but notice the significance of the moment.

Then I started to wonder what was going on inside of Nicky. Why did he say that? What was he trying to tell me? I think it was pretty simple. Every kid wants a family and family is defined most places (especially in his favorite kids video’s) as a Mom, a Dad and the kids. Nicky wants a family. He said out loud what each of us from broken homes thinks quietly, what each of us wishes we had, a complete family. He was able to say what he felt and what he thought of the scene before him. To him a man, a woman, him and his sister, all together was a family. I actually think that in that moment, it was enough for Nicky and he was happy. Wow. Talk about living in the moment.

Sadly, 86% of the marriages fail in families who have children with autism. I think we can all agree this is because the parents can’t cope. I know it’s hard on the kids, but it seems that maybe they cope better than we do. As always, Nicky keeps teaching me things.

Playdates and Possibilities not Disabilities!

Things that make me wonder…who really are the disabled ones?

To look at these pictures you would never know that you were looking at any kids with ASD. I dare you to tell me which of these kids has ASD...I say you can't. Because in these special moments it is clear that they are not "their disability". They are just their spirits, they are happy children, they are kids having fun participating in the world.

I can’t tell you how great these moments are, the moments where our kids are just like all the neuron-typicals…in a good way, the best way, they have friends, they are having fun and they are simply blending in. It’s such a big moment for us because so often we just want to blend in, go un-noticed and we don’t. Our kids stand out, because of the not so cool social behaviors they are engaged in, or because they are totally un-engaged and in a world of their own. But, not in these pictures!

Of course, beyond these pictures are the real stories of these kids and they have challenges too, but none of that matters. What matters is that these kids love each other. They love each other unconditionally and they love each other because they can. They love without judgment, they never compete, they are never jealous, they never seek “pay back”, they never say things to intentionally hurt each other and they never stay mad. They just love each other the best that they can and they accept each other in a way that is so precious and so sincere. They have fun in a way that is pure joy, because they are not distracted by the world and it’s ideas about how things should be. They really do live in the moment and experience unconditional love.

Clearly in this case they are not the ones with a disability :-)

CNN covers Autism all day today!

Today CNN is covering autism all day! Seven years ago almost no one knew what autism was, or what it looked like. Television coverage was rare and the only reference most people had about autism was the movie Rain man. I remember how people responded with sadness when I said Nicky had autism, but it wasn't until they saw Nicky and spent time just hanging out with us that they began to understand. I think it's impossible to comprehend what it's like to live with autism unless you've done it.

There are so many little things you just don't see when you see these kids - you don't see what it means when a child doesn't understand danger, or what it means when a child can't control their body, or what it means when a child can't tell you when they hurt or where they hurt, or what it means to have a child who can't tell you if someone hurt them. It's hard to imagine what its like to know that you won't be here one day and who will care for your child who is so vulnerable, or to struggle over and over for a school placement, support services, medical services, therapy intervention, proper educational programs and simply getting the right food in their stomachs.

I know we may not find any answers to cure Nicky of his autism, but I am hopeful that coverage like CNN's all day today will help with Nicky's future. I hope it will make more doctors and parents aware of the early warning signs. I hope it creates pressure for the insurance company's and I pray that attention to the severity of this issue may create changes in how people think about our children. I hope it will get people thinking about how we can create jobs for our children as they come of age. It may help to make everyone aware of how vulnerable our children are and the global impact these kids will have on us all.

Thanks CNN.

Aggression and Spaghetti Straps Don't Go Together

Last night I went through 5 outfits before I could find the right thing to wear to go out with a friend.

Little things you never really think about. It's spring, so the idea of wearing something cute and sleeveless sounded like a good idea, until I put it on and saw my arms. Then I realized how they looked and that I really didn't want people staring wondering what had happened to me. My arms were covered with scratches and bruises. Nicky loses control and without the verbal skills other kids use to express frustration or anger he resorts to hitting, kicking, scratching and pinching. When he pinches he tends to grab my upper arms, lock his fingers in and squeeze as tight as he can - which leaves bruises that look like someone's using me as a punching bag. When I'm home I forget about it. They come, and they go. Just like make up and manicures...so what. But in this moment, when I'm so excited to go out, I wanted to feel pretty, I wanted to be like everyone else and I'm reminded that I'm not.