It’s World Autism Day but you probably won’t see me wearing blue today. I’m wearing whatever shirt I could grab in my sleep deprived state that I won’t mind will be covered in food, pee or blood or all three. I probably won’t have a light bulb that’s blue because we haven’t had time to shop these days or to take the time to screw in some light bulbs to let our neighbors we support autism awareness. I think they are pretty aware when they hear our son’s screams or rages in the driveway
April 2nd is not when I need autism awareness or to spread it. I need it when my child is in pain and decides that destroying his body is a better idea and he bashes his head into the floor.
I need it when my son has a new health mystery because he can’t tell us what’s wrong and he screams and hurts himself in pain.
I need it when he is up all night, throwing his Bipap off, having behaviors or just not wanting to sleep.
I need it when we are alone fighting for service for months on end. While he’s medically unwell and hurting himself and we have no help, no respite and no break of any kind.
This year we are in a hospital fighting for help for him. He is battling hypoxia and a host of issues and has to have two staff with him at all times and restraints on his bed. Are you aware that this is a reality of many of our children? They can’t tell us what’s wrong so everything has to be tested and thought about. Their behaviors can increase as a result of pain and sickness to levels you’ve never seen. I need autism awareness at these times too and hope for doctors who will understand and see more than just behavior.
We need autism awareness in those dark nights where our tears fall and we wonder how we will ever make it through another day and with no help. We need autism awareness when we have to put a UFC helmet on our kid to stop him from banging his head to the point of brain damage. We need autism awareness when we have to get gloves and other protective equipment to protect him from severely injuring himself.
Where is the awareness then? Are people aware of this kind of autism. Kreed is a blessing as himself, but his autism part is not. Kreed and autism are not one in the same. It keeps him from communicating and living even a semi normal life and instead he rips his body apart. Do you know what it’s like to watch your child literally rip his toe nails off with his teeth? Are you that kind of autism aware?
We accept our son for who he is and fight like hell to get him the right kind of help so he can relax and enjoy his life instead of being racked with pain, hurting and not in control of himself. We work like hell to have him live his life in his own way and do the things he wants. We advocate for him and give him all the tools necessary to be successful.
But the world is not aware. As families continue to have to fight for necessary services and often do this alone or have to fight he medical establishments for correct treatment or even schools to provide something as basic as a communication device so they may have a voice. When I don’t hear about these stories anymore, I will know the world is more aware. But one day isn’t going to do it. Not even close. This is why we document and share Kreed’s story. It’s real. It’s uncensored. It’s our truth our life.
And states need to wake up and add autism to the list of conditions for medical cannabis. We wouldn’t even know what to do if we hadn’t been able to try Kreed on cannabis. It relaxes his ravaged body. It stops his head banging. It stops his biting and hitting and hurting. It helps his medical conditions at the same time. So when 48 states deny families the opportunity to see what their child can do just by using a simple plant, we are not autism aware.
So no, we don’t light it up blue or wear other autism colors. Because we still sit in dark moments and working like hell to save our son and give him a better life. We work every day to make this happen and we spread awareness every single day of our life and turn the camera on to show every meltdown, every failure, and every triumph and amazing moment. That’s how this world will become more aware. When the world can see autism and not just hear about it. When the world can see what our kids are capable of when given the right supports and quit fighting us on giving the right supports, that’s when this world will be autism aware. But seeing blue and knowing we have a family with autism in it is not even close to enough or scratches the surface. People see the blue, nod and move on. They don’t “see” the effect it has on our son or our lives and therefore doesn’t make lighting it up blue or whatever color effective.
People need to start getting involved. Help a a family out. Remove roadblocks to care. Include our son in regular activities. Be aware that autism is a spectrum and affects kids differently. Be aware that all the kids have various ways they communicate. Send a mom an iTunes gift card and give their family the gift of a communication app if they don’t have one and give a child a voice. Volunteer at your local day programs and hang out with these awesome adults. Lobby your local businesses to hire more staff with autism so they have a chance at more independence. Be involved. That’s the only way this world will become more autism aware. Lighting it up blue does not help awareness, advocacy or acceptance. DOING something does.
These are our thoughts today. Our truth. Our life. We share it in the open, uncensored every single day so that people can see the realities of nonverbal autism with severe medical problems and then you can truly become aware and understand what would actually help and not just wondering what light it up blue does.
Kreed has been hospitalized almost exclusively since early February. As a result he has needed both parents at home because it takes two people to help deal with Kreed and takes two people to manage the home and be at the hospital for him. Kreed has now suffered through devastating pain with peripheral neuropathy, tonic-clonic seizures with his heart stopping, discovering his rare metabolic disorder that has gone un-treated for 18 years and now a recurrent lung disease. At this point, we don’t know how long he will be in the hospital and then don’t know how long I will have to be out of work for. So many from Kreed’s World have offered to help, so I have set up a paypal account to receive donations. We are appreciative of anyone who can or would like to help.
To make a donation, please use PAYPAL and send to firstname.lastname@example.org