Gratituesday: Light It UP Blue 2013

It's that time of year again.

 

If you have never read my blog before, let me introduce you to J Man. 

Yep, that's him. The first picture is an older one from a few years ago, with his uncle Bobby. He adores my brother. The second is one of his quiet moments here at home. J is now twenty years old and he has severe autism. He is not verbal although he is almost never quiet. He is loud, loving, and happy on most occasions. The happier he is, the louder he gets sometimes. If, at the grocery store, you hear a  loud shriek and an infectious giggle, it could be J, letting everyone at the store know that he has arrived. If you see a twenty year old sitting in the aisle looking bored or even lying down, he's not staging a protest of anything but standing. He does not like to stand and wait around while mom and dad hem and haw over what to choose.

   Today I'm thankful to be his mother. (Well, I'm thankful to be his mother every day, even the ones that break my heart, but hopefully you know what I mean). I'm thankful for all the mothers and fathers who are in the trenches day after day, working with their kids, loving them, caring for them, and I'm thankful for the ones who end up making the most painful decision ever : to place their darling child in a school or institution because it's no longer wise to keep the child at home. It's not a decision made lightly and it's done with a lot of swinging pendulum emotions, I imagine. We haven't come to a decision like that yet, but we've seen it on the horizon of our journey a few times. 

    I'm also thankful today for Autism Speaks   and all of the businesses and families and individuals who who participate in Light It UP Blue and promote autism awareness. It's becoming more and more prevalent, with current stats at 1 child in 88 being diagnosed with autism, 1 in 54 for boys. Some put the current stats as 1 in 50 children being diagnosed on the spectrum. Whether because the numbers are growing due to whatever is causing it (I have my own ideas and there seems to be myriad theories out there) or as some would like to suggest, they're simply better at diagnosing it, those numbers are heading in the wrong direction. 

  So what is autism?  (Lifted straight from Autism Speaks: What is Autism) 

  Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.
Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Increasing autism awareness is a key aspect of this work and one in which our families and volunteers play an invaluable role. Learn more …
  I tend to say "kids with autism" a lot when discussing it, but the "kids" that people see and tend to accept behaviors of once they know it's autism, grow up to be adults with autism. Mine is one of them. Yes, at times you will see a 20 year old in the throes of a full on melt down. Or you will see him happily waving his arms and singing in his own language. No, he's not on drugs other than medicines prescribed for his seizure disorder. No, he's not drunk or insane. He's either happy or upset or in some cases, having a type of seizure. If you can help, by all means do. If you can't, and simply are judging or in the way when something happens, please move along. Children and adults with autism are not zoo animals to be stared at, nor should they all be "locked up away from society so we will be safe" as one lady put it after a recent shooter was said to be on the autism spectrum. 
  Learn about autism. Ask questions. Wear blue today in honor of our kids and maybe Light it up Blue with the rest of us. Have a blue light on your porch or in your window. Say a prayer for the kids themselves and the parents and dedicated doctors, therapists and caregivers who work with them. And please, teach others.
  This post is share with Heavenly Homemakers for Gratituesday.
Join us for Gratituesday at Heavenly Homemakers!  You'll find many other bloggers that you may enjoy as well. Feel free to add your own post there or tell me in the comments here what you are thankful for. I always enjoy hearing from you..
  

 

     

The Story of J, Part Two

 As you may know, April is Autism Awareness month. On World Autism Day, April 2, I wrote The Story of J, Part One .   This part of the story tells a bit about his personality.

These days I typically wake up around four o'clock in the morning. It's not because I like getting up that early or that I have a paid job that requires it. No, it's usually because I hear J in his room giggling and singing, or I hear water running and his singing. What does he sing about? Food, mostly. Like any teenager the moment he wakes up his mind is on how hungry he is. If it isn't about food, sometimes it's hard to tell what he's singing, but there is a recognizable melody most times. 
   If J were ever to work with or become an interior designer or an organizational specialist, I would not be surprised. He has definite opinions as to what belongs where, and his taste is rather definite. In J's world, things should be put away. I agree with him, but it doesn't always happen as quickly as either of us would like sometimes so he takes it upon himself to place it where he thinks it should be. Usually in a hidden place only he knows about. If you catch it quick enough, all you have to do is say, "All right J, where's it at?" (Bad English skills there, but yup, that's what happens at home sometimes). This elicits a blank look, especially if for whatever reason the name of the object isn't making a connection for him. Then we point to the space where the object had been and command, Go get it. That he understands, most of the time. I've caught glimpses of his sense of humor as he sometimes waits for that one magic word that sadly I say a lot: NOW! Then he smiles and retrieves whatever it was we were looking for.
   As for J's design taste, it apparently clashes with mine. It's hard to describe what it is he likes for certain, but he knows what he doesn't like and the offending items usually go out the window. Literally, out the window. Granted, that tends to be his method of cleaning his room sometimes. I walk outside and under his window there may be clothes, a blanket, or a pair of shoes that he's thrown out at least three times in two days. (We've checked: the shoes fit, and he seems to be comfortable when he wears them, he just doesn't like them).  Other things that haven't made the grade: a plate I made in the 90's. He didnt want it displayed so he shoved it behind my china cabinet before I could hang it up on the wall. I put it inside the cabinet and all was well for awhile. He has taken it out and pretended to bite it.  A figurine I've had for years, he despises. It is currently under my kitchen sink, right where he placed it. It fared better than a decorative Christmas piece I was given, though. I don't know what about that house he didn't like but in his mind it had to go. First was a part that he broke off. Annoying, but I could fix it. Then he placed it under the kitchen sink. Not good enough. While I was in another room I heard him in the bathroom, then I heard a crash.  I investigated the bathroom and saw nothing. Then I went outside. On my porch, which is just close enough to the bathroom window (don't blame me, it's an older house that was designed badly) was the Christmas decoration, smashed to bits. 
  He wasn't angry, didn't have a meltdown. He simply did not like it. I have yet to figure out his thought process on what is acceptable and what isn't. Although I'm not happy to see things destroyed, I guess I should be grateful that the stuff he detests isn't valuable and he hasn't hurt himself or anyone else getting rid of it. 
  Water has always been a soothing element for J. Although I fear for my water bill, I don't usually say much when he heads for the shower. He knows it calms him. It might prove cheaper in the long run to have a pool but two things prevent that: one, we don't have the room in our yard. Most importantly, even if I tried my hardest I can't watch him every second of the day and night and pools are too much of a temptation for many with autism. I've heard too many accounts of a child with autism going missing and then being found dead in a body of water. Even if a child isn't autistic drowning happens all too often. It's not a risk I'm willing to take. I'm actually grateful that J rarely goes outside by himself and he hasn't noticed that just inside a neighbor's gate is a pool. 
   As far as exercise is concerned, J isn't one to volunteer for it. He's much rather sit and listen to music. Lately I've figured out that I need exercise, and my family does too. While I could walk faster and longer without J, I don't really like leaving him alone so for the past week, minus a few days, he's been walking with me and The Hubby. 
  This is something we've done sporadically in the past, but I want it to be a more permanent fixture. We've learned rather quickly that the car has to be locked, otherwise J will plant himself firmly in his seat and it nearly takes an act of Congress to get him to budge. Much to his surprise though, he is actually enjoying getting outside and walking. 
  All in all, J is happy. He likes routine, his own brand of order, and just being comfy. Most of the time he likes going to church. He is comfortable there, and many talk directly to him. He enjoys the singing. He watches everything going on. Yes, there are times when he's tired to the point of being silly but we try to keep him quiet. He has areas there that allow him to calm down if he's over stimulated. 
  This post seems a little choppy, but then, J's life is like that: mostly routine, but his mind and body are rarely still for long. As for me, I'm grateful he's allowed me to sit and write this long. I'm glad you've glimpsed a little more into J's life, but if you'll excuse us, it's breakfast time.