Let me start this post out with this: As many of you know my Mav has Autism. I've wrote about Mav here on my blog many times then I took a step back thinking maybe I shouldn't share my private life on here because what if some one...Then I thought I can't let someone that doesn't know me stop me from sharing Mav's story because the more people that know about Autism the better this world and life will be for Mav. So all this month I will share a little bit of what life is like living with Autism.
Repetitive Behavior
This is one thing that we have dealt with since before the word Autism popped up. Mav's intense repetitive behavior was one of the first things that had me thinking there is something different about my child.
The information below was borrowed from Wikipedia. I did change the word Autistic to the individuals with Autism. I don't like to call Mav my Autistic child for me it would be like introducing your child who has cancer as hey here's my cancer child. You just wouldn't do that. I know you may be rolling your eyes but that's you not me. It might not be a big difference for you but it is for me. When talking with others I do usually correct the wording so when a friend says "so Mav is Autistic what's that like?" I will answer with "Yes, Mav has Autism and it's hard as Hell!" I am honest, I am real, and I am living this life.
Repetitive behavior
Individuals with Autism display many forms of repetitive or restricted behavior, which the Repetitive Behavior Scale-Revised (RBS-R)[36] categorizes as follows.
- Stereotypy is repetitive movement, such as hand flapping, head rolling, or body rocking.
- Compulsive behavior is intended and appears to follow rules, such as arranging objects in stacks or lines.
- Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted.
- Ritualistic behavior involves an unvarying pattern of daily activities, such as an unchanging menu or a dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors.[36]
- Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program, toy, or game.
- Self-injury includes movements that injure or can injure the person, such as eye poking, skin picking, hand biting, and head banging.[4] A 2007 study reported that self-injury at some point affected about 30% of children with ASD.[29]
No single repetitive or self-injurious behavior seems to be specific to autism, but only autism appears to have an elevated pattern of occurrence and severity of these behaviors.[37]
Stereotypy Mav style: he does rock, pace, and has a repetitive thing he does all the time. It's just a Mav thing and hard to describe and put into words. He did have the hand flapping for awhile but it soon moved on to other things.
Compulsive behavior Mav Style: he always arranges his items he totes around by color if for some reason they mix all hell breaks loose and we quickly get it fixed. He lines everything up always has. At 18 months he would sit in front of the recliner with his cars of trains lining them up over and over again. Even now he still lines everything up. He stacks his blocks the same way.
Sameness Mav Style: Sweet Jesus this child loves his things the SAME WAY!! He notices EVERYTHING! seriously the bus driver no longer needed a bus with the wheelchair door so she asked for a bus with all seats thinking nobody would care well guess what Mav cared. He stopped short of the step knowing the number was wrong so he had a throw down, got on the bus noticed there was no place for wheelchairs so he was a lil pissed, he noticed that his name tag was at the right seat but not in the same spot. THe bus driver said it was crazy everything he noticed and had a fit about. Here at home he notices things but doesn't have as big of a fit he usually goes in silent i'll take it at my own pace then let you know its ok later mode. Like when we added the boxer twins to the fam he took no interest and wouldn't even acknowledge them for a week. He notices when my hair gets cut and has been pissed off ever since I got it cut short like 5 years ago. He loves long hair and I went short not cool!
Ritualistic behavior Mav Style: we have a routine we follow everyday during the school year and if it changes slightly he is upset. He knows how many minutes he has in the show, what will be put on him first when I dress him, how long he has to watch toons & eat his poptart before the bus is suppose to be here. During the summer he gives me a break and the routine varies a little bit but it takes awhile to get it ok'd with him so for a few days-weeks you can guarantee that there will be throw down the world is ending attitude from the dude. His eating habits could fall under this too because he mostly eats things that are white in color and mostly bread like products( waffles, sandwiches, fries, pizza rolls, cookies, apples, pop tarts, chicken nuggets etc) absolutely NO NOODLES! He rarely eats meat or veggies unless you count pizza sauce, ketchup and french fries. He's not big into fruit either only watermelon and apples. He can eat the same things days on end. He does switch it up every few months just because I make him switch it up.
Restricted behavior Mav Style: I call this Mav cycles because he usually has 3-4 things that he is restricted to every 3-4 months then he changes. Let me try to explain right now the Mav Cycle is carrying around a bag with thomas the train & friends(you bettter believe that he knows their names, color, size, how many fit in the bag and if one is missing), he is on a Winnie the Pooh movie binge(If anyone knows where I can find Winnie the Pooh A Very Merry Pooh Year DVD please help a sister out this is making me crazy), he has a ball he carries around the yard, and he likes play station. His next cycle will more than likely be carrying around a bag of wooden spools or stamps, Thomas movies, Jumping all day with a few minutes in the sand box, playing on his iPad. It's crazy how after a few cycles we begin over with the first one again like everything is all new. Sometimes I love to see a cycle come back other times I want to pull my hair out.
Self-injury Mav Style: I'm gonna be real honest with this one it scares the shit out of me when it happens and thank goodness it doesn't happen often. This is something I think about too as the years go by and he grows how this might change. He is a big dude already and I know he will be bigger than me some day.How will I stop the behavior what will I be able to do so he doesn't hurt himself?
When he was littler he would throw himself to the ground or hit his head on stuff but he doesn't do that now. He will throw himself occasionally but it's over something major. He will pinch, hit, scratch and bite himself but this isn't a daily or even a weekly thing. When he had to have reconstructive foot surgery in 2011 it was so hard to watch him put himself in pain because he didn't know how to deal with the pain of his feet. I hate to see him in pain and will do anything in my power so that he doesn't injure himself even if that means I get the teeth or fist. He does get aggressive but I guess if you were stuck in a box and couldn't express in words what you wanted, needed, or were thinking you'd get pissed and aggressive too I know I would. Sometimes I think that aggression isn't him it comes from something else because after the fact he will get upset and tell you sorry. He doesn't like to hurt you or himself.
Don't forget the giveaway in the post below. Have a great day! ~MK
PS.. HAPPY BIRTHDAY to the BEST GMA in the WHOLE WORLD!! 71 looks fab on you!
6 comments:
I love reading this. I work with a lot of children with Autism, and it is very interesting to see how every child is so unique. I feel like "Autism" is such a big umbrella...and people who have never personally known a child with Autism have so many misconceptions. Anyway, it's just nice learning more about Mav. :)
see! Right there, that's another reason I love yOU!
No gloss, just guts and real.
LOVE YOU!
So raw. So real. So you. Love you!
Mandy! I've really enjoyed your posts today and yesterday in honor of Autism Awareness month! We've been "living the autism lifestyle" for 6 1/2 years now, plus 7 years before that without having a name for it. Hugs to you and your hubby, to Mav, and to his sisters for the daily challenges, and the daily amazingness that Autism adds to your lives. Oh, and I am TOTALLY with you on the "child with autism" vs. "autistic child" thing. I've explained it to people as, "Yes, he has autism, but he is so much more than that. For example, I am not a big-nosed person, but a person with a big nose. I have a lot of other traits, too--some more becoming than others!!" Lol!
What a beautiful person you seem to be after reading your blog and this post. The creator sure knew what he was doing when he blessed you with Mav! You have what it takes to be the blessed mama Mav needs! Thank you so much for sharing so much of yourself with your reading fans. I am blown away by you! This yardsale/estate sale/ 2nd hand store junkie will keep an eye out for your special requests such as the Winnie the Pooh year DVD. Has any of the other sistas found that for you yet? If I keep a list with me of requests; I am more apt to remember those wants and needs for keeping an eye out for those goodies when I am out doing the deed all summer long with my eldest sister Lenora. I love how you broke us in with the a person with Autism and not the other way around. You are surely right when you stated that you never introduce your fam as Meet Mav my child with Autism and not meet Mav my autistic child. Mav is obviously so much more than his Autism!! I look forward to your future posts - no rolling eyes here- in my inbox! It's becoming a rare thing to find serioulsy real people in the WWW world these days as so many portray themselves as they think others would like to see and not the real person. Have a great Full Moon Day! Signed one new very interested blog readin' fan! Bean
You are all so strong. xoxo
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