Below is a comment I made recently on another blogger’s post (See: I can’t let it go). Due to the long-windedness of it, one might assume it was in opposition to what was written. Believe it or not, it was not. I did agree with much of the author’s points and began my comment by saying just that. It just so happened that this was the time and this was the post that I randomly chose to get it all out of my system. Apparently I did not accomplish my mission to get it all out, because writing it in a comment did not keep the subject from gnawing at me so I am copying most of it here and adding the things I have already said said over and over again after the comment.

“I have done my share of complaining *on my blog* but the complaining is never directed at my son, it is directed at the people who do not understand my child or the people/professionals who should know better. I do not go into detail about melt-downs or behaviors and I certainly share and celebrate all of his accomplishments.

I do not mourn my child.

I do not mourn my life.

The only thing that I mourn or worry continuously about is his life after I am gone. He cannot live on his own. He cannot take care of himself. He does not understand danger. He does not understand when/if someone is taking advantage of him. He has no siblings *so there is no one that I can count on to take care of him after all of the adults that have been appointed are gone*. He is verbal but communication is *difficult* so he cannot communicate when something is wrong.

Even though I have taken all of the steps that I can to make sure that as much as possible is in place for him when that time comes, he will, I am sure have to live in a group home when I am gone and that terrifies me. He will be at the mercy of strangers.

I want him to be as happy as he is right now for the rest of his life. I do not want to think about him being abused, hurt or treated poorly. I do not want to think about him not having his beloved books, markers, band aids, dolls or computer. I do not want to think about him not understanding why – *if  any of the above concerns come to be*, this treatment is happening to him.

This is why I write about him. This is why I tell stories about him so that maybe people will understand how his mind works and understand that not all autistic individuals are the same. This is all that I can think of – every . day . of . my . life. I love my child more than I could ever have imagined that I could love anyone and I live in terror of what will happen to him when I am not there to protect him.

This is not about my life, it’s about his – his future. 

*Maybe other parents who have more than one child do not worry about the “later” as much as I do because they know their child will be taken care of, but this is my reality.*

Although I do not agree with some of the blogs, articles and videos out there, at all. I do think we need to shine a light on the fact that everyone is not the same. Maybe not in the way it has been done recently and not in the words that were used – but we do need to see every side. We don’t need to share every detail – I don’t but I understand that some people do. It is sad that all of this is causing so much upheaval in the *autism community* – there has been enough of that already.“

This is not to say that I don’t have hope. I always have hope. DC, even at this age continues to make progress – little things and small steps, but it is there. I hope that I will be able to find someone his age that is willing, not to take him in but to be there to see that he is being treated the way I want him to be treated, to see that he has the things that he needs and wants, to see that he gets the proper medical attention, to see that he is able to go places and participate in the activities that he loves.  This is where my hope lies.

I had a coworker who after listening to a now ex-coworker complain about having kids, having to work and the fact that no one understood her situation, said “Are you kidding me? Vickie has given up her whole life for her son”. I suppose that was meant to be a compliment, but no; I have not given up my life and it is sad that some people might see it that way. He is my life. I do not feel as though I have given up anything. Sure there are times when I would like to leave the house without having to find someone to watch him, or go to the store without waiting for him to go though his entire ritual before we can leave – where I could have been there and back by the time all of that happens. I would like to not have to worry so much about him when he is not right there with me. This is not giving up my life. I am sure I complain at times; as anyone might complain about their children once in a while.  This is my life. I do not feel as though I am missing out on anything.

DC is happy. That is apparent to everyone who meets him or knows him. He has his days, but doesn’t everyone? He is happy. He is healthy. He loves his life. I know this.

I tell stories, sometimes with humor; sometimes not. I tell stories because if I were to try to explain autism – his autism to anyone, I would be talking for hours and still never be able to give a true picture.

I tell stories to show you how his mind works. I tell stories to show that even when your child hits adulthood (he is 26), you could be going along on your journey and BAM, seizures start at 24 – or BAM, new or old behaviors crop up.

I tell stories because NO ONE is the same.

Everyone’s life is different. Every child is different.

I wrote a piece a while back about death. I wrote about the death of my stepfather because I was not and really am not sure that DC understands death.  I had someone comment that her son is autistic and she was there to tell me that DC absolutely does understand.

No! It does not work that way.

Everyone is different.

I wrote a piece about whether or not DC understands that he has autism (we talk about it because I never want him to think it is a bad thing) and I got a comment saying “I am autistic and believe me, he understands”.

No! It does not work that way.

Everyone is different and unless you know my child and have spent a lot of time with him, you can not tell me what he does or doesn’t understand.

I wrote a piece about all of these worries before, the comment: “I am autistic and I can live on my own – he will be fine”

No! It does not work that way.

Everyone is different.

I guess this has been my point all along. Everyone is different. We need to see that instead of bunching everyone under the same umbrella.

We may not agree with the videos and posts that have been out there recently and I agree that no one should be made to feel as though they are a burden, these people are talking about their children, not autism in general. They are trying to show the side we do not normally see. I do not agree with a lot of it but I do not think that they are trying to demonize autism. They are talking about their life and only their life and oftentimes are posting these items during some very raw moments.

Let’s face it; we all can feel sorry for ourselves once in a while. It happens to all of us. Maybe when we see or read something like this we should not begin with bashing. Maybe we can try to look deeper and maybe even have a discussion. No one will ever be able to see a different perspective when we begin with hostility.

Everyone is not the same.

*****

*Added to the comment for further clarification here