Saturday, April 2, 2016

When We Need Autism Awareness

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. 

9 comments:

  1. I went through a lot of the same things with our foster son, It was horrid, a challenge, a constant fight for him and with him. He passed a few years ago. I would give my right arm to be able to have him have behaviors for just one minute. He is at peace now. And for that I am thankful. I pray for Kreed and his family. also for the Dr.s, nurses and other staff.

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  2. My 13 year old son sounds very similar to yours. His self-harm isn't as bad but not too far off. He also can't communicate & I'm a single parent fighting for everything I can for him against the Dr's, school, therapists, etc... He was tried on a medication to help with behaviors once but it caused severe UTI's all the time so he is not on anything now.
    He is an elopement risk as well so there are alarms on every window & door in the home at all times. His medical services coordinator is no help; I was hoping when he got assigned to a different worker that would change but it hasn't. Living in a small community where everyone knows him is best as far as the behaviors/wandering but makes it hard to get any real help for him from any type of services.
    I can't work because he needs me 24/7 & now I have to home school him because of behavior with transportation to/from school & in school. Living on his small fixed income is also a challenge & he isn't my only child. Luckily my daughters love their little brother & are great with him! The only break I have is when they watch him so I can do the shopping.
    Now we will soon be homeless because my landlord is being foreclosed on for non-payment even though I paid him (he made his last payment the month after I moved in) & I can't afford to try buying the place myself. Having no credit doesn't help but having no countable income is worse.
    I do not get welfare; his checks are too much for us to qualify for anything other than medical & a small amount of food stamps. I used to work in a facility when he was younger & know how they are so will never allow him to be put into one when I can physically take care of him myself & he does better with me & his sisters than in any other environment (another reason for the home schooling).
    It gets so frustrating; April 2nd is also just another day to us! It's great that awareness is being sought but unless people see it on a daily basis they forget all about it every day of the year including this one. Other family/friends might wear blue & "light it up blue" for someone they know on the spectrum but I find it to be hypocritical. If they can't be there other days of the year then why bother on this one day?!

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  3. My 13 year old son sounds very similar to yours. His self-harm isn't as bad but not too far off. He also can't communicate & I'm a single parent fighting for everything I can for him against the Dr's, school, therapists, etc... He was tried on a medication to help with behaviors once but it caused severe UTI's all the time so he is not on anything now.
    He is an elopement risk as well so there are alarms on every window & door in the home at all times. His medical services coordinator is no help; I was hoping when he got assigned to a different worker that would change but it hasn't. Living in a small community where everyone knows him is best as far as the behaviors/wandering but makes it hard to get any real help for him from any type of services.
    I can't work because he needs me 24/7 & now I have to home school him because of behavior with transportation to/from school & in school. Living on his small fixed income is also a challenge & he isn't my only child. Luckily my daughters love their little brother & are great with him! The only break I have is when they watch him so I can do the shopping.
    Now we will soon be homeless because my landlord is being foreclosed on for non-payment even though I paid him (he made his last payment the month after I moved in) & I can't afford to try buying the place myself. Having no credit doesn't help but having no countable income is worse.
    I do not get welfare; his checks are too much for us to qualify for anything other than medical & a small amount of food stamps. I used to work in a facility when he was younger & know how they are so will never allow him to be put into one when I can physically take care of him myself & he does better with me & his sisters than in any other environment (another reason for the home schooling).
    It gets so frustrating; April 2nd is also just another day to us! It's great that awareness is being sought but unless people see it on a daily basis they forget all about it every day of the year including this one. Other family/friends might wear blue & "light it up blue" for someone they know on the spectrum but I find it to be hypocritical. If they can't be there other days of the year then why bother on this one day?!

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  4. My 2.5 year old is very similar. 6 self inflicted concussions. People think his helmet is for siezures but in reality its to protect him from himself. My heart goes out to you. I am a single mother with little to no support besides the 16 medical professionals involved in my sons case. A perfectly happy and normal developing child until age 18 months. All of a sudden he started clawing at his face, bashing his head, and would try to chew off fingers and toes. Your post made me cry so hard as i truly can relate! I also do not have a blue light. The sleep clinic told me blue would make his insomnia worse. Prayers to you and your wonderful Kreed.

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  5. My2.5 yr old son sounds very similar. He wears a helmet and has had 6 self inflicted concussions. At one point he would find a way to unsnap the helmet just to bash his head on the hardest surface he could find. My heart goes out to you. I am a single mother with no support other then the 16 medical proffesionals in my sons life. A perfect developing and happy child until march of last year. I remember the day he started self harming. It was horrific. Watching a toddler claw at his face and try to chew his fingers and toes off. Your post brought so many tears i have been fighting for days. Prayers to you snd your precious Kreed.

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  6. we love you Erin and Kreed so much. I will set up a paypal account tomorrow so I can donate and help as much as I can. I tell you you are a hero every time I talk to you. i think you are amazing. i hope you get answers soon and somehow find the strength to make it through tomorrow xxx

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  7. My son has autism and I'm also not a fan of "light it up blue". The only thing it inspires people to do is give donations to an organization that does very little for the families it claims to be fighting for.

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  8. I just happened accross a repost on facebook about Kreeds passing. I have never followed your page or read your blog.... until today and I wanted to say thank you. My heart hurts for you and your family and what you must be going through. I am not close to anyone with autism nor have I even encountered anyone with autism (not that I was aware of anyway). Although I can't imagine the depth of sadness you must be feeling right now, the post I saw on Facebook led me to your page and this blog which has changed my world. Thank you for having the courage to fight for your son and not only talk about his challenges but show them here as well. I hope I am only one of MANY people who see this and understand what truly supporting families dealing with autism means. Thank you again for your courage even in the face of your loss and educating those of us without experience with autism.

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