"Don't feed the Autistic Kid"

I find myself at a point in my life where I never expected to be. On Thursday I took my youngest son Grant who is almost 2 1/2 to the doctor to address certain concerns that I had. He has always been a very peculiar child as he is set in his own ways since birth. He has an aversion to certain food textures as well as food shapes. Food has to be given in a certain order each time but in what order he wants it that meal is always a guess. My son doesn't talk much other than "Momma, Dadda, Itty (Kitty), No and Here You Go." We recently noticed that he can say other words but he will say a word out of nowhere and then we will never hear it again. Sometimes it is a whole sentence! He has other things that we have picked up on and so that is why I took him in to be seen.


I explained my concerns with the pediatrician and even though she did not provide the level of care that I would have liked, she did agree that he needed to be seen by a specialist. So now here we find ourselves anxiously awaiting an appointment with The Autism Network which is scheduled for the end of March. I don't know what to say. I don't know what to think. When I tried to voice my fears on my facebook I was kindly reminded of how great an early diagnosis is and also how God has a special purpose and plan. I was reassured of all of the other great kids that they knew of who had Autism and how well they have done.


I wonder how many actually see the behind the scenes of what goes on and all of the endless tears that fall.  As they give me reassurance All I can think of how most days are filled with hours on end of screaming. I think of how food no matter how great I try to prepare it and no matter how much I try it ALWAYS ends up thrown on the floor over and over again.


I am also consumed with concern for his safety as he doesn't seem to fear a whole lot of anything. He  has a very high tolerance to normal pain and seems to at times even lack any sense of physical pain. I feel overwhelmed! I am his mom and both my husband and I are responsible for his safety and it scares the SHIT out of me that as he grows what if he doesn't grow out of it. How do we keep him safe? He is very strong and at times he will start throwing things and not just little things but BIG things. Instead of a lego he picks up the small doll house and will chunk that. He can at times become a bit violent as he will swing his head and just keep knocking you with it. Today I tried to give him a hug and he head butted my lip. He doesn't mean to. I can see that. He doesn't know nor can he really control his own strength it seems. But still AUTISM? What does this mean for my son?


People tell me not to worry and think of the future that it is too out there. But how can I not? How can I not wonder what will happen to him once we are gone? His future right now seems so uncertain. When you have children you have dreams, hopes, and maybe even a seemingly naïve sense of assurance that your child will be okay in the whole scheme of things in life. Right now that whole rug is being pulled from under me. Right now this is how I feel and I will not make any apologizes for it. I am sure that as time goes by a new normal will come about but for right now this seems so foreign and honestly I am terrified.


I wonder how people will treat him. The past year we haven't really gone anywhere because he is a more difficult child to deal with and we don't want to draw attention in public. And it doesn't help that these past couple of months he picked up an usual habit. It used to be that he would rock himself as a soothing mechanism but that got replaced with him (this is so mortifying to open up with but I do it in hopes that there are others out there) playing with his nipples instead. He will literally pull up his shirt and start pulling on them. God I hope that the sick pervs don't get off to this but this is our reality.


I told my husband the other day that as mean as it sounds that perhaps we should have shirts made up that say "Don't feed the Autistic Kid" that way people will be mad at us and 1) will not notice or care that our son is grabbing at his nipples in public and 2) that way people will be inclined to defend him instead of ridicule him any further. I would much rather take the insults and the stares than to leave them for him to have to endure. You see I love our son with every beat of my heart and want him to grow up in a world that is filled with love and compassion even if it is only really possible in his own unique world.




*Originally written a few days after Jan 30th