First of all, let me say, I have two ends of the spectrum living in my home. For personal and privacy reasons I do not share my older son’s issues, challenges and struggles as an aspie. He is grown today, has friends and a career, so marking him, just isn’t cool. I’ll be happy to answer any question about him in a private email. When I refer to aspie as “Autism Lite”, know that it is not coming from judging situations I view as easier, but my own personal experience with both ends of Autism. Had I not had John, I am sure I would have spent a lot more time defending and educating people on Aspergers. When John came along, it was enough to shake my world to the core and show me, hey, the older one has it made in so many ways, stop making a big deal out of small issues and give him more credit.
No, I don’t “Light it Up Blue” for Autism Awareness Month. I joined the light it up black squad a couple of years ago and run with the darker side. We have a different agenda, sharing something beyond the feel good happy autism lite stories that seem to be all the new reporters can find to discuss. Frankly, we are sick of awareness. Enough all ready who is not aware of autism. I live in a neighborhood of 17 houses and two of them have kids with autism living in them. Cross the road, walk a mile, no houses here, but the first one you see, yep autism again. What will spending money on lighting up bridges, civic centers ect. do? Could you not put that money into the homes of people with needs? Couldn’t you fund an autism center for a month rather than spending all that money to buy a blue awareness tee-shirt for 75 people and hosting a blue day gala costing hundreds of dollars? I think so. My own home state felt the need to light up the capital blue at the same time the Mississippi Legislature voted against our special needs children and their ability to seek a private education using some of our taxpayer money. IE allowing children with autism to have extended ABA and or other programs beyond the school setting especially in areas that have nothing for children with autism. Light it up blue, but don’t help me is what this says to me.
We also think the news media needs to stop saying things like, “Different way of being” or “Socially disconnected.” or whatever feel good dribble sounds nice, and not too negative. We want the news media to show the down and dirty side of autism. When John was at his worst, I lived second to second. His life revolved around screaming non-stop, running into traffic, head butting anyone, self abusing, having bowel movements seven or so times a day, nice sticky smelly run to the floor poo, endless cravings for food, which when he got he shoved into this mouth and swallowed…whole…without chewing…shredding brooms and twirling broom straw and oh vomit seizures. We once added up 5 years worth meant he had 1,810 give or take a few. He slept in short shifts which when we were lucky lasted two hours. I never took my eyes off him, I slept with him, if I bathed, I bathed with him in the shower. If I ate, he took food out of my hands and shoved it into his mouth, I would duck and try to eat all while being head butted and pinched. I never see this end on the news, I don’t see the hard minute to minute autism life. What I see is more moving and touching, but not heart stopping enough to make viewers stop and pay attention.
During our hardest times when our older son really needed help too, he would be hiding in his room reading a book, getting on with life the best he could. It was unfair to him, grossly so, but where was help? And that, is why awareness is a joke to me, so what if people are aware, are they aware of the intense needs some families have? Are the feel good news reporters going to come to that house, the one with broken windows, grass growing a foot high and a screaming poo smearing child running into traffic a zillion miles an hour? I haven’t see it yet. That Momma didn’t have time to call up the news paper and ask for some blue light coverage, she is too busy trying not to get evicted and or dealing with CPS who tells her there are homes for kids like this, get him in one.
I received a phone call that spoke volumes on awareness. The conversation when something like this.
“How do you do it, how did you do it how will I make it, I need real help and I need it now!”
“Can’t you hear the screaming? We have been in the car for hours, if I stop even for a red light he starts again, I haven’t had a bath in three days, I eat as I drive from fast food places, I don’t remember the last time I had sleep and I called, yes called the church and ask for someone to come just for half a day and take him and let me sleep, but no, nobody will. All I hear is call me if you need help, but when I call, they are busy or have to get a hair cut, or have plans, the reality is nobody will help me with my autistic child and I loosing my mind!”
“I guess I should not tell you today is world autism awareness day hum?”
“Oh so freaking funny, you know what, nobody is aware of the reality we live, not unless they live it, come to Texas, please come save me.”
“If only I could I would, you know that. I would make it all work out for you I would.”
I mean it I would. I would take the worse of the worst cases and give Mom a much needed break, because I was that Momma once. I am the Momma who pulled up pee and poo covered carpet and walked on bare concrete for two years. I am the Mom who stopped screaming at the dog not to eat John’s poo off his legs and floor and started calling the dog over for a lick. I am the Mom who sent her unable to read body language well enough to understand what people are saying son into stores alone to buy a hot plate of food for supper. And I felt guilt every time I did. I am the Momma who was told over and over and over to put her son in a home and get on with life. John was not like the 10 year old on the front page of the news paper who is an honor student, but quirky and went undiagnosed as autistic until last year. He is the poster child for light it up blue, at least so said the news reporter. Trust me, when your nine year old is non-verbal and not potty trained, you know something is wrong nobody has to tell. As for not knowing your child is spectrum until they are older, didn’t bells ring when your toddler demanded to visit the appliance store rather than a toy store? When your very hungry child went into a 30 minute melt down and could not eat because his food touched? Or the fish stick was cut in half not thirds? Did you not question it? Bells didn’t just ring when that was our son, we knew, and we knew before we were even told by the school system to look into it. By then he had already logged thousands of hours of play therapy.
Where are we today? Our entire family credits John for making us the strong people we are. Thanks to John many of our older son’s issues were resolved. As I sought help for John, doors opened for therapy and biomed for his brother. In many ways John saved his brother, and we are all thankful for that. Because of John I am painfully aware of the environment, unhealthy foods, food additives, and toxins in our food as well as health and beauty products. I am beyond painfully aware of vaccine damage and all that comes with it. I can tell you volumes on the gut brain connection. I am also painfully aware that awareness is just that, you know a little about something, but not enough. I am aware of breast cancer and all the pink ribbon stands for, but I have no clue what it is like to actually have cancer, nor do I have a clue how to best serve a person dealing with cancer.
That’s why we light it up black at our house, for us, the time for awareness has long passed. It’s time for action, it’s time for families to get the help they truly need not lip service and a slap on the back. If you are a family who is offended by my off handed flippant statement of autism lite, please know that more than once I have stood up for aspies and HFA stating that in some ways, this end is much harder in the real world. I know how difficult it is when a child does not fit in and people expect them to because they are so smart. When a child never gets picked for a ball team because they don’t understand teams. When sensory issues makes attending public school virtually impossible. I had that child that could not walk down some grocery store isles due to irrational fears of commercial characters on cereal boxes. Trust me, I do get that end and I know it has it’s own host of invisible issues the public does not understand.
If you are a parent dealing with smeared poo on the couch, a child that breaks out windows and screams non-stop, I understand that that end as well. If you are seeking help, I can’t come baby sit, I wish I could, but I can tell you there are some autism organizations out there with grants for help, biomed, attending training classes and other services. Please check out the following links and ask for help, I promise, someone is listening.
I hope your April was all you wanted it to be, that your walks were not rained out, that funds were raised as needed for your community. If it makes you happy, leave your blue light in all year long. Who knows the new neighbors down the block might see it and come visit, and introduce you to their spectrum child. If you see a black light, ask them please how you can help. Then do it. Let’s make 2015 the year of helping each other by putting awareness into action.
Latest posts by Cheryl Bailey (see all)
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- Navigating Public Places with a Child with Special Needs | An Open Letter to Rude People - September 10, 2014