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 One

As many may know, today is World Autism Day. According to the CDC   1 in 88 children have autism. For boys, the number is much more prevalent at 1 in 54. Those are some sobering odds. Yet some still don't find it serious enough to stop patting parents on the head and do something. We hear about autism mostly during the month of April and then it's quietly shoved back into the closet to forget. As a parent with a child with autism, I live autism awareness 24 / 7. 
   J is nineteen years old. Although he says a few words appropriately, his communication is mostly through simple sign language, gestures, and pointing. He sometimes will take a trusted person by the hand to show what he wants or needs. Very few get that privilege. Although considered nonverbal, he is not quiet by any means unless he's asleep or contemplative. He is quite vocal whether he's happy, sad, angry, or just wants to tell the world, "Hey! I'm here!"  J loves being the center of attention and will call out in public so that everyone knows he is there. He doesn't care that the attention he nets is usually curious stares or blatant looks of disdain. 
   J isn't fully toilet trained at this point although we haven't given up yet. Adult pull ups work when we are out and about but honestly, he has sensitive skin and does not tolerate them very well at all. He will look for the first opportunity to rid himself of the nuisance and if he can't, there almost certainly will be a meltdown.
   When visiting others, J tends to be quiet unless he's hungry or he's comfortable with the people there. He loves for people to talk directly to him but don't always expect eye contact. If he has decided he likes you, he loves giving hugs. He interacts a lot with men. Women usually merit a shy smile.
  As for his likes and dislikes, J loves food. A typical teenager, the words he uses most are food related. He also loves music. Almost any type will do, but he prefers Latin hip hop, classical, classic rock, International, and Michael Jackson. He rocks to almost anything upbeat.  He's not big on movies and television, but will watch if there is a lot of action and/or music. Although surrounded by cats, he's not a big fan of them. He merely tolerates them in his world but he prefers them to be out of his room and off of the furniture. In the past he has shown a like for horses and bigger dogs such as retrievers.  Smaller dogs get the same treatment as cats.
   As far as whether J was born with autism, although one doctor said he was, I disagree to a certain extent. Looking back, even as an infant he had a certain quality that set off the "mommy radar" but that really didn't show up until he had a well baby visit that included a vaccine or two. Although I had no qualms with his brother getting vaccinated, without even hearing any of the controversy (I was blissfully unaware until J was 6), I felt in every fiber of my being that vaccines were wrong for J. Especially when he emitted a high pitched wail that I've never ever heard another infant make. He also held his breath, which is something that he does to this day when needles are involved. After that (and I was told his reaction was normal, btw) I noticed he loved watching ceiling fans. There wasn't a lot of eye contact from him, even during nursing. 
  As I watched J grow, I was somewhat in a fog because we had lost J's older brother at the age of two and J was 6 months old. J didn't babble the way kids his age did. He did some, but it wasn't to the point of trying words. `He hit other milestones pretty much on time, holding a spoon, walking at 13 months, that kind of thing. Words didn't come till later. I expressed concern about this at a checkup and was again patted on the head. "Do you talk to him?" the nurse asked with a smile. I think I answered Of course, but what I was thinking was, "NO! I stick him in a corner all day and ignore him! Sheesh!"  Of course I talked to him! I talked, I read to him, sang to him. 
  I saw him walk on his tiptoes a lot, and he turned his head to scream sometimes. I thought he was simply playing when he did things like that. He spoke about ten words at 15 months. At 18 months he began losing those words. He would sit and play by himself, stacking legos taller than himself or spinning objects. I would call his name and he would ignore me. I thought he had a hearing loss. I talked to his doctor and got the brush off many times. I was just a mom, what did I know?  I finally convinced the doctor about the hearing problem (only when my husband came with me and agreed there was a problem) and he was sent to an audiologist.  The audiologist tested him as best he could: J paid attention the first time or two and then tuned him out. We were told two things: J could hear just fine but there seemed to be a developmental delay. That diagnosis, along with setting J on the floor and letting him do his normal thing convinced the family doctor to send us to the specialist. The specialist took about ten minutes before diagnosing autism.  Of course, we had to have tests run and this and that done before it was official. So just a few months before J turned three his pdd(pervasive developmental disorder)/autism diagnosis was confirmed. 
    If you've read this far, thank you. I'm not sure where I'm going on this, but I want J's story to be told. I want him to not be ignored or discounted. I am his voice. I want to encourage other parents who have that  mommy or daddy sense to be able to speak up. I want parents to be educated and to be able to speak up for their child or children. We as parents know our children better than doctors, teachers, anyone out there.