Low functioning Autism has got to be the most frustrating thing I have ever had to deal with. Everything in my life revolves around Mickie. I just keep thinking that there will be no place for him in the world if he stays the way he is now. So I keep looking for ways to get him out of himself, so when I'm gone he can fight for himself.
When he was diagnosed at 22 months I thought he would just start learning if he had intensive therapy, but he didn't and in fact got worse. By the age of four he was completely lost in his world. Chelation therapy did help get some of his eye contact back.
On Mickie's 10th birthday I made the decision to start doing something more about my frustration with his slow progress. I had stopped video taping him right after the diagnosis of Autism. The life just kind of went right out of me. I started making videos of him again. I signed on to Youtube and created a channel for Mickie.
The response to Mickie's videos has been interesting to say the least. Most people are very gracious, but some of the others are just plain nasty. Interesting enough some of the most negative comments have come from mothers of Autistic kids. I an not in any way ashamed of him, not by a long shot.
Some have accused me of portraying Autism in a negative way. I just record Mickie being himself or what I like to call, "Mickie in the Raw". I'm guessing Mickie is not what the majority of people with Autism act like. I just got tired of seeing it portrayed as something just perfectly normal. It is what is; and, what is not is a dirty little secret that has to be hidden so that it won't offend the sensibilities of some.
It's a cruel world out there! It's evident when I take him out in public and people do stare and give dirty looks and shush him, because he can get really loud and there just no way to stop him. Perhaps they have never seen anyone like Mickie, because Autism is portrayed as something else.
Autism isolates the entire family, not just the afflicted child. It is difficult to visit and to have visitors. It is very hard and expensive to find appropriate childcare.
It is very tough to describe what it feels like to see your child suffer and not be able to help him. The pain of knowing that no amount of therapy and no amount of money will ever give him back the potential he was born with, can seem at times, unbearable. The love that I feel for this little boy is more than I could imagine, but at the same time I morn every day for the child he once was and might never be again.
Once in a blue moon I get a glance at the precious little person trapped inside his confused body - that person who views the world so different than me. And it's at those moments that I remember why I was meant to be his mother. It's hard to see everyone else's life around you go on as if everything was just fine, yet you know it's not ever going to be the same for you.
Sometimes when I touch bottom and I imagine this little guy as a grown man, and me too old to watch over him, I realize that this is as close as I have ever been to hell.
Am I bitter? Yes! Am I happy? No!! This days happiness is just a word, a front for the rest of world to see, because in the end; I just want my son back.
Zurama
7 comments:
You know? I read in a forum recently someone say "Bite me" regarding encountering autism red tape and issues. I have begun to say it more and more.
To heck with the starers and the nasty autism moms. You do what is best for you and your son. Everyone should be supportive and just agree to disagree sometimes instead of fighting with each other. I wrote a similar post in my blog about the
"parent wars" one day when I was fed up too.
Those people are not worth your time and energy.
I was watching the video footage you did of your sons and it brought tears to my eyes because your son could be my sons twin. The be3haviors you are showing are Virgil too. I have left churches over the "Your not welcome here anymore" Feelings I have had. The stares and the can't you get him to be quiet. Or the people who ask me what is wrong with him. I say nothing he is Autistic and all conversations end. I have no real friends until this last year and they except Virgil without limitations and for that I am blessed for. But for the last 6 years since his diagnoses I was the only one who pushed him beyond the normal limits including his school, they say wer can't force him and I say No But I can. My son learned to read on My watch not in school. People ask if he is homeschooled and I say yes part time. Half school half homeschool. Keep up the posts cause you are blessed with a beautiful boy who is going to come out the Autism window and into the real world and that day will be a true celebration.
God Bless you,
Sara Marcelo
sara.marcelo@sbcglobal.net
You know, just keep pushing on him to learn. It will payoff soon.
I started reading your posts from the top/most recent and then I decided I should go back to the beggining. This post really hit home...I agree with you sadly know all this too well.
The devastation of Mickie's particular autism is unbearable at times, but you just keep on and quietly hope that he will God willing, make significant improvements.
Hello Zurama,
I got to say you do a great job already!, and never forget that!
I myself have Autism, and people are actually scared of me, why?, because I am different according to them.
But don't ever forget that there are more people like your son!
And though I know that it's hard for you to see your son grow up and have major problems with almost everything, there are still people left that will understand your boy!
So he might not life the life others will, but he probably will still have a good life!
Why?, Because for example the love you give him!
Although you might not notice, when your son will watch back later on what you've did for him, he will be proud, because he got such a loving mom!
You can be very proud of yourself actually, There are enough parents that would have just given up, and just brought him to an adoption home or whatsoever to hope that somebody else can do better.
The main thing important for someone is his/her parents, especially as an autistic child.
And let's not forget what sarbear23 said,
You're blessed with a beautiful boy!
And like almost all of the kids I know with Autism he will probably be just a kind sweet lovely boy later on, where maybe you still can see that he is autistic, but he will have improved a lot!
I love your blog by the way, and I am surely going to read every single post, as I see not so many blogs about autism actually(Or I just don't look right)
And as my autistic self I will also say that your boy will probably grow up fine, it might need more attention, but look at the serious side,
Aren't you actually blessed with such a handsome boy? ;)
Thankyou for your blog-it really brings home a lot of things. I hope that you'll find this link to autism apps useful http://gametrender.blogspot.com/2011/10/smartphone-apps-for-autism.html
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