This post, brought to you by the letter A.

groverSo many significant things in my life begin with the letter A. The obvious, autism, plus my overwhelming love for my favorite dogs, australian shepherds. I do have a somewhat new “A” in my life, a rather unwelcome one, but one that I knew would probably be there: Alzheimer’s. My mom has it, my grandmother had it. You may think I’m nuts, which if you are reading this blog on a regular basis this may be a foregone conclusion, but I think that autism and alzheimer’s are diametrically opposed, yet fundamentally, there are so many similarities, I have to share my thoughts. They are not the same in the most basic way, with autism, there is always the hope, chance, drive for improvement, goal reaching, achievement. With Alzheimer’s there is only the ability to slow down, contain, hold off the inevitable end. So how are they alike you might be thinking? They are invisible disorders/diseases. If you were to see my beautiful mom, even yesterday, she looked as lovely as ever. Hair and make up perfect, all of her clothes matching, especially shoes and purse. ( My dad picked everything out for her, in case you are wondering if she really has the big A). If we were to walk into a restaurant or store, you would think to yourself, what a handsome couple. Bryan looks like a big beefy teenager, no visible traces of anything amiss. But if you tried to have a conversation with my mom, you would be stumped, flabbergasted and sad. I am trying very hard to process the slipping away of my sweet mom, but when she is right there in front of you, it’s bizarre to say the least. I am not dealing with it well, because on some level I am not dealing with it at all. Does this make sense? Not really, but what I mean to say is, I have not really explored the loss that is right in front of me. It is so like autism here, yet not.

I say autism and Alzheimer’s are diametrically opposed. I say that because one is getting better and one is not. One is coming alive, learning growing and the other is retreating, shrinking. Yet, they are the same. Here is someone you love more than words can say and you cannot have a real conversation with them. You can share your thoughts, they understand them, but they do not process like you or I do. With my mom, the new conversations are short, fleeting. With Bryan he remembers everything and can retrieve it at any time. Oh the goddamned irony!

My Dad is the ever present caretaker and I have not been as involved as I should be or would like to be. I know I have my life and my responsibilities but there is never enough time in a day to deal with everything. On some level it is almost too painful. My Dad is now realizing first hand just how hard it is to be with someone you love and yet cannot reach them in the way you want. He is realizing just how tough it is to be patient when someone you love is not behaving or reacting in the way the typical world does. While very very difficult for him to handle, we have bonded over the insight he now has in my dealing with autism. So profound if you are me. So profound if you are Bryan. Most people that see Bryan or know us, see a small glimpse of what is like to be with a kid on the spectrum. But to get it, you have to live it. I wish he didn’t have to do this, my Dad, but supporting him through this, is helping me deal with my mom.

Another A, always hanging out, is anxiety. Yesterday Bryan was very upset with me because our plans had changed suddenly. He said, “I have anxiety”. So while I’m not very fond of that A, I was so happy that Bryan could identify what he was feeling and tell me.  At the end of everything, the most important A of all is acceptance. We accept our autism and our alzheimer’s and love our family as much as we can.

Have courage and be kind….

cinderellaThere is truly no end to negativity surrounding people with disabilities. When it is your child, no matter how many times you encounter new people and their reactions to your kid, you feel like you were hit with a brick. Sometimes I shake my head and think, are people really that out of touch? Are people really that insensitive or ignorant? I try to give everyone the benefit of the doubt; maybe they don’t know much about autism, maybe they have not experienced it first hand. Here’s what I do know:  you do not have to have something first hand to be kind. We just saw the new Cinderella movie on Friday. I will admit I was the only mom with teenage and pre-teenage boys in the theater, but Bryan loves all movies and Jason is a good sport. It was pretty good for an old story, (Lauren Henschel-the actress looks very much like you do but not as pretty) and the mom’s message, before she dies (all moms die in Disney movies) is to have courage and  be kind.This may now be my new mantra. I have always been a fierce protector of Bryan but having courage is a good one. I do have the courage to speak up for my boy, to educate, raise awareness, and let people know what is and what is not ok.

Here are some simple rules, as I see them, when faced with the unfamiliar autism spectrum disorder.

1. Do not judge my parenting skills. You have no idea how you will behave if you have not slept well in days and your large teenage kid is screaming and pinching you and his sibling.

2.  Do not judge his future. You have no idea how smart he is, what he is capable of, or where he will land. If you do, call Diane Sawyer and get your ass on TV as a genius.

3. Do not judge him by his disorder, open your mind to his charm. He is not the bad behaviors, that is only a component of him, I guarantee he is 10x smarter than you can ever imagine and is sweeter than sugar.

4. Do not judge his communication skills as the barometer of his level of understanding. Receptive learning is much easier than speaking.

Since I try to learn from every situation, I have learned this. I love autism! It pushes me beyond my comfort zone as a person, it challenges me every day to dig deeper, to learn, to grow and to push. I am where I am in my life not in spite of it but because of it. I know who I want to be with and how I want to handle myself. Thank you Bryan for teaching me the ultimate you can’t judge a book by its cover.

So I say to all of my peeps out there if you can’t have courage to deal with autism, at least be kind to the parents.

Recalculating….

Bryan’s new thing is to use the GPS on my phone to go everywhere. He is not too happy when I change the route but he has to go with it. We are at the beginning of our new route and the irony is not lost on me. In this process of getting divorced and moving out of our family home, I am learning so much about myself and my kids. I lived alone for 7 years in Manhattan before I was married so I have none of those fears of being on my own during timesharing with their Dad. This is my first weekend alone and I am better than ok. I am also not that girl I was long ago wondering if I would  get married, have kids, do the traditional thing. Although I do wish I could have the complete fairy tale of a life long growing marriage, I am to be where I am, capable and empowered. The “do over” of your romantic life is both exciting and terrifying at the same time.

The question most often asked is “how are the boys doing?” It’s the most normal question in the world. I have a variety of answers depending upon the day and time. The second day after we moved in Bryan came home with homework from school; he told his teacher he needed to do homework in his new house. I thought that was so charming, like it wasn’t officially his home until he did homework there. The boys have been very protective of me too. Jason has told me several times he is “the man of the house now” and to let him know if I need anything. So these are the good times, the good stuff of the new life. However, divorce is not without its daggers to the heart as a parent. Jason has cried many times; he has told me he is dealing with all of this too. He is very good at expressing his feelings and all I can do now is let him know that no subject is off-limits. We have had our share of tough times too. Bryan has melted down and he broke the shower curtain in the boys bathroom. This event happened after I left the boys alone for 2 hours and Bryan pinched Jason and dug his nails into him. Jason said “let’s call Daddy”. I knew what he meant. Bryan is big and strong and that can be very frightening. Of course we did not. I told him, “no, I can handle it” and I did. After spending time a long time alone with Bryan, which included cutting his nails way down, he calmed down and was his very remorseful self. Jason gets the autism part of Bryan, the inability to control himself at times, but he is still a kid in the middle of divorce trying to show he can handle things. The emotional grab of all of this is huge. I keep reminding myself  to take it one day at a time and all of these firsts and changes are part of the roadmap. I am on the journey and my canteen is full. (I’m not saying what is in my canteen, however).gps