There are many forms of Autism, if you have met one kid with it, then you have met one kiddo with it. The media tends to tell you all about the "good" forms of autism; the great success stories, the kids that do amazing things, the ones who will help change the world for the better. And believe me, I love hearing those stories, because even seeing one special needs child succeed is awesome in my book. But on this blog post I am going to tell you about our version of autism. The video above is one of our medium meltdowns. This was taken about two years ago, (and believe me the meltdowns got worse).
Also, sorry if this post is a bit jumpy; I want to put so much in, but it only comes out in spurts.
So let me begin by saying I never believed that my life would turn the course that it has.
When I was young all I dreamed about was the perfect life; you know the being an actress, painter, writer.
I never knew anything about autism. It never crossed my mind, sadly I had no idea what it was, (well besides Rain Man.)
Fast forward to when I was pregnant with my first daughter. I made all the plans; you know, where she would go to college, what she would be, how happy she would be, what we would do together.
But it wasn't meant to be. I am not sure, there are days I wonder what I have done in this life or another to deserve the hand I was given. Was it my rebellious stage as a kid? I don't know, but here is our story.
The kiddo started off just fine. Reaching all of her milestones right on time, or even a little bit before. She talked, she smiled, she laughed and was interested in things. A normal little girl.
Then something changed, I being the mom and always around her, just chalked it up to quirks. No problem. But then she lost her speech, but the Dr. said just wait it out, she'll be okay. But things just went downhill from there.
I being a mom, didn't believe anyone when they said it wasn't normal the things she did.
Finally after nights of weird sleeping, (she didn't for more than a few hours), and I am sure it had something to do with my soon-to-be husband prodding me into it, we had her checked out.
Her diagnoses is, (and will most likely always be), severely autistic, with sensory processing disorder, and a learning disability.
That means in a nutshell: she is non-verbal, ( and may never hold a conversation with you) , she is self-injurious, likes routines, and will never learn the in the conventional ways.
Some of those things above may not seem so bad, but.....
I have never heard her say "I love you" without being prompted, she can't tell me if she is sick or hurting, she can't tell me what she likes or dislikes, (well, expect she dislikes her little sister, that we know).
There are great things about her too though, when she laughs or smiles. She is a bit of a comedian, (trying to get us to laugh), she is the best dancer and loves music, (right now it is disco that she is really into).
It has taken years for the good to outweigh the bad, but for now it is. Well now that she is in an autism class for school, (believe me when I tell you that some schools even though they say they know how to work with special needs kids, they don't and they will refuse to listen to the people who know her best, the parents), and that she is in IBI therapy, we have seen dramatic results.
We have been asked to leave "special needs" summer camps, dance classes, etc. (The reason I put special needs in quotation marks is because they were special needs classes, just not "OUR" type of special needs.)
We have had the city called on us from a "concerned" teacher/parent, because of her bruises, (black eyes, bite marks on her arms and hands; self-injurious remember; and most of it happened at school).
We have dealt with the glares, stares, remarks, and downright ugliness from people.
I guess all in all, we are probably stronger people mentally, physically then most "normal" parents. I am not saying at all that being a parent of a neurotypical child isn't hard, we have one of our own. But you have never dealt with any of this, and we live it all-day, everyday, no breaks, no vacation, no babysitters(except family, cause they rock!)
Today being World Autism Day, I wanted to share a bit of our story. Like I said there is so much; and I carry so many scars, (literally from being hit and bit, and also figuratively because I carry scars around my heart and mind), it's hard to put all of it into one blog.
But I do want to thank some of the people who have helped us get to the point we are today. So here goes;
Sarah Shanner: THE BEST EA in the world. Who never gave up on Kenz.
Jodi Kee: Cause you give me and Trevor a break when you can.
http://www.makingwaveshamilton.org/ a special needs swim class that Kenz loves
All of her team at IBI and Westwood School, you guys have made her do a 180, and I can't tell you how much I am grateful for it.
Mary Walters: thanks for always supporting me, and listening to me rant and rave about things.
And last but certainly not least; Trevor Kee: my rock, and bff. Thank you for always being there and helping and not letting this autism thing get the best of you. Not everyone would have stepped up to the plate, but you did and you hit a home run every time.
Okay so to wrap this blog up. Again sorry for the rambles. Maybe I will write more one day about the really bad stuff, but I don't feel like falling into a black void of depression today, so this is what you are getting.
Once again thank you for reading.
Until next time here is a video taken a few weeks ago, (you'll be able to see the change in the kiddo).
Lana
Also, sorry if this post is a bit jumpy; I want to put so much in, but it only comes out in spurts.
So let me begin by saying I never believed that my life would turn the course that it has.
When I was young all I dreamed about was the perfect life; you know the being an actress, painter, writer.
I never knew anything about autism. It never crossed my mind, sadly I had no idea what it was, (well besides Rain Man.)
Fast forward to when I was pregnant with my first daughter. I made all the plans; you know, where she would go to college, what she would be, how happy she would be, what we would do together.
But it wasn't meant to be. I am not sure, there are days I wonder what I have done in this life or another to deserve the hand I was given. Was it my rebellious stage as a kid? I don't know, but here is our story.
The kiddo started off just fine. Reaching all of her milestones right on time, or even a little bit before. She talked, she smiled, she laughed and was interested in things. A normal little girl.
Then something changed, I being the mom and always around her, just chalked it up to quirks. No problem. But then she lost her speech, but the Dr. said just wait it out, she'll be okay. But things just went downhill from there.
I being a mom, didn't believe anyone when they said it wasn't normal the things she did.
Finally after nights of weird sleeping, (she didn't for more than a few hours), and I am sure it had something to do with my soon-to-be husband prodding me into it, we had her checked out.
Her diagnoses is, (and will most likely always be), severely autistic, with sensory processing disorder, and a learning disability.
That means in a nutshell: she is non-verbal, ( and may never hold a conversation with you) , she is self-injurious, likes routines, and will never learn the in the conventional ways.
Some of those things above may not seem so bad, but.....
I have never heard her say "I love you" without being prompted, she can't tell me if she is sick or hurting, she can't tell me what she likes or dislikes, (well, expect she dislikes her little sister, that we know).
There are great things about her too though, when she laughs or smiles. She is a bit of a comedian, (trying to get us to laugh), she is the best dancer and loves music, (right now it is disco that she is really into).
It has taken years for the good to outweigh the bad, but for now it is. Well now that she is in an autism class for school, (believe me when I tell you that some schools even though they say they know how to work with special needs kids, they don't and they will refuse to listen to the people who know her best, the parents), and that she is in IBI therapy, we have seen dramatic results.
We have been asked to leave "special needs" summer camps, dance classes, etc. (The reason I put special needs in quotation marks is because they were special needs classes, just not "OUR" type of special needs.)
We have had the city called on us from a "concerned" teacher/parent, because of her bruises, (black eyes, bite marks on her arms and hands; self-injurious remember; and most of it happened at school).
We have dealt with the glares, stares, remarks, and downright ugliness from people.
I guess all in all, we are probably stronger people mentally, physically then most "normal" parents. I am not saying at all that being a parent of a neurotypical child isn't hard, we have one of our own. But you have never dealt with any of this, and we live it all-day, everyday, no breaks, no vacation, no babysitters(except family, cause they rock!)
Today being World Autism Day, I wanted to share a bit of our story. Like I said there is so much; and I carry so many scars, (literally from being hit and bit, and also figuratively because I carry scars around my heart and mind), it's hard to put all of it into one blog.
But I do want to thank some of the people who have helped us get to the point we are today. So here goes;
Sarah Shanner: THE BEST EA in the world. Who never gave up on Kenz.
Jodi Kee: Cause you give me and Trevor a break when you can.
http://www.makingwaveshamilton.org/ a special needs swim class that Kenz loves
All of her team at IBI and Westwood School, you guys have made her do a 180, and I can't tell you how much I am grateful for it.
Mary Walters: thanks for always supporting me, and listening to me rant and rave about things.
And last but certainly not least; Trevor Kee: my rock, and bff. Thank you for always being there and helping and not letting this autism thing get the best of you. Not everyone would have stepped up to the plate, but you did and you hit a home run every time.
Okay so to wrap this blog up. Again sorry for the rambles. Maybe I will write more one day about the really bad stuff, but I don't feel like falling into a black void of depression today, so this is what you are getting.
Once again thank you for reading.
Until next time here is a video taken a few weeks ago, (you'll be able to see the change in the kiddo).
Lana