momtuition

In the movie The Lion King, Simba goes back to fight Scar for his rightful place in the Pride Lands. It’s one of Kuba’s favorite movies – And if it’s only one thing that he learns from that movie… My hope is that it’s the lesson of courage.

Courage to do what’s right and to stand-up for himself and others.

It’s also something that I hope time will tell that we did a good job in shaping in him. And I think a lot of it will come from us modeling that behavior ourselves.

Before autism, and everything that comes along with it, came into my life I didn’t consider myself to be a courageous person. I really didn’t. Actually, I’m not sure if I now do. Add to that, my private life back then was just that… Private!

Then I became mom to an autist and things changed. I realized very quickly that I had two choices; I could do nothing or I could do something. I chose to do something. Anything! Anything that I thought would help him overcome any challenges he had. I never saw it as a courageous act. I didn’t think I was doing no more than any parent of a “typical” kid would do for them. I was speaking out, I was advocating, I was demanding more for my son and for others like him. From time to time I get parents who would say to me; “I read your blog and I think you’re so brave for speaking out and advocating for your son. Where do you get the courage from?”

I say to them; because I owe it to him.

I remember when Kuba was initially diagnosed, we met with a psychiatrist and he asked what did we want for Kuba – And his dad responded and said that we wanted him to be the best he could be, whatever his best was. I couldn’t have said it better because nothing – ABSOLUTELY NOTHING – in this world is more important to me than knowing that Kuba will be ok on his own when we’re no longer around. It is what keeps us up at night – It’s this fear that drives me. The fear that sometimes fills my mind with thoughts of perpetual unemployment, homelessness, drug-addiction and prison – And I was going to do everything in my power to give my child a shot at a better future than that. After all isn’t that the dream of every parent, to have an independent, happy, adult child who’s capable of living on their own. My dreams are no different for my child with autism. But the attitude here is that they will continue to live with us (parents) until one of us dies. After that it’s “Good Luck Chuck”.

To date no government agency has been able to tell us how education will be provided to our kids once they enter the school system much less what happens to them once they reach adulthood. What we know now is purely anecdotal; and the picture is bleak. There’s very little opportunity for them to fully explore their full learning potential or career capabilities. And just for the record… For those of you who, sometimes with the best of intentions, when autism is mentioned, go to your only source of reference and that is the character, Raymond Babbitt, played by Dustin Hoffman in the movie Rain Man and offer a compliment alluding to the myth that we have nothing to worry about because our kids are smart… Thanks but no thanks. What I want you to do; before you think our situation is not so bad and that we all have little Einsteins and Mozarts who will have us rolling in a pile-of-dough soon enough and then we can do whatever we want. Think again. This is a spectrum of disorders all different to varying degrees… No two are the same and no two have the same differences.

In the process of writing this article I decided to do a bit of research to see what other people had to say about courage. How did they define it? I came across a site that described it this way: Courage: the emotional strengths that involve the exercise of will to accomplish goals in the face of opposition, internal or external.

I like the fact that they highlight that the opposition could be either internal or external. There’s still many of us who have not accepted that our ideas of perfection have not been realized in our child. “If only she would just…” or “Why can’t he just…” When you really stop to think about this, and I hope you do. Ask yourself if you have fulfilled all the expectations your parents had for you – And not that this is right or wrong either. It’s just that sometimes; our expectations are just that; our expectations.

You see, I think that Simba was courageous all along. He just didn’t know it. He initially told Nala when she found him; “They don’t need me!” But when she told him about what his uncle Scar had done to the pride lands, he had to go back to save his people. In his eyes that was the only choice for him. I call this “courage that knows” – Knows the risks that lies ahead but still takes action anyway because the consequences of taking no action or lesser action are unacceptable.

I sometimes end up having very intimate conversation with some moms and dads who I’m meeting for the first time and I’m sure it took quite some courage for them to talk to me about certain issues. Perhaps I would have never found my courage if it hadn’t been for son. Perhaps I would have kept on thinking that courage is something only the people who risk their lives have.

So, I still don’t quite see myself as being courageous – But there is something there, whatever it is, that makes me get out of bed each day, no matter how much I sometimes want to give up and… make another call, send another email, write another letter, reach out to someone who I think can help us move forward. Because like I said; there’s nothing – NOTHING – I will not do for my kid. After all, I owe him at least that.

I have a contagious jungle fever. Some call it courage. Don’t worry though; it’s the one you want to get.