Thursday, March 31, 2016

AutismLove


Jad turned four a few weeks ago. In a day, all media around us will start talking about Autism and featuring stories of other children and adults and families living "on the spectrum". Because incidentally, Jad's birthday is closely followed by Autism Awareness Month/Day.



It is good. It helps. We need more awareness and we need to educate people because there is still so much to be done for our society to be truly whole and equal. Integration should not be a particular effort we are praised for.  Integration of all people, all kinds of people, should be the natural order of things in our modern, informed world. It is not though. And this is why Autism Awareness is so important.

But every time I want to write objectively on what Autism is and what it means and maybe how and what to do, I just freeze.

All I can think about right now is Jad is four. Jad is growing. He is absolutely beautiful. But he is growing. And as much as it brings me joy and pride to see him grow into a loving, fantastic little boy, to me right now, it also means, another year has passed and Jad remains non verbal.

Of course the reasonable part of me has accepted that Jad may never be fully verbal, or not at all. I have read enough to understand that this is a possibility.

It is a good thing I am typing right now because usually, at this point of the conversation my voice is already breaking and burning tears are rolling down my cheeks even though I truly do not mean to cry. So I guess I am grateful for that other part of me.

The mommy part that still hopes in spite of all the reasoning. It is timid. It does its praying on the inside,  in silence. Maybe it doesn't want to jinx it. I don't know. But that part hangs on to that story of a few children who finally said their first words at eight. Eight is a good number. I like it. It is arbitrary. It means nothing from a scientific standpoint. But I like it. It gives us time. It gives us another four whole years. Who knows what could happen in four years, right?

And then there is the reality. Not the pessimistic me. Not the hopeful me. Just the every day me. The one who lives with Jad in every moment of his life.

That me is sad today.

Don't get me wrong. I am not a sad person. Jad gives me joy a thousand times a day.

But still, if I have to sum up and rate my day in one word, the rating would be "sad" for today.

I can't help but play that one afternoon over and over again in my mind. We walked by the marina at Festival City and there was this awesome set up of games and food stands for kids. Mia insisted on playing mini-golf so her dad took her while Jad and I stayed on the improvised wooden stairs that served as benches in front of a small stage. He loved it. He was free to run along while I could be at peace knowing the space for this freedom was well defined within actual wooden borders. All he did was run back and forth on one bench. Over and over and over again. He seemed happy. He was laughing and "saying things". I don't know what. Not words. Just sounds. But I was relieved he seemed and sounded content. And then he suddenly stopped. He just sat there, staring in the distance, babbling calmly now, almost whispering to himself. So I looked to see what might have caught his attention. I couldn't tell. I asked him and of course that was silly. He had no way of telling me and I had no indication  he had even understood my question. Still I touched his hand and asked again. He just continued his babbling as he released his little hand from under my fingers. And my heart broke.  I stared at him in silence while he babbled staring in the distance. And I fought the tears because you don't want to break down and cry in front of your children. Or an entire crowd of strangers for that matter. I just kept on doing the only thing I could do. I watched him talking to himself in his little bubble and I just prayed. I just prayed he was happy.  I wanted so badly to know what he was feeling in that moment because as a parent, all you want is for your kids to be happy and to be able to be there should they need you. And for lack of better options like, I don't know, read his mind or something, I just sat on that silly bench praying he knew I was there and hoping he didn't need more than that in that moment. And hopefully, that he was happy or at the very least not sad.

All this talk about me and my feelings. While I know it is not about me. But I guess today I need to let some of it out because it is stuck in my throat and I am suffocating. Tomorrow is another day and things will be better.

Jad may be the one on the spectrum but our entire family has autism. And if there is one thing people can take from this testimonial, it is this. Be kind and understanding to families with special needs. We run out of patience with the world because patience is a luxury we need to save for our difficult moments at home. Give us space. Give us understanding. And most importantly, love our children. Because the one fear we have is to one day leave this world and abandon our children at the mercy of a tough and often cold society.






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