Tuesday, March 31, 2015

For The Lost: A Day To Remember

This is an edited repost of a blog entry that was published on November 26, 2014 titled: For The Lost.

   Elopement or wandering is every parents worse nightmare. Every year children and adults with autism lose their lives. There are hundreds more who wander or elope and are later found safe by their loved ones or police. Then there are the ones, the very unlucky ones, who go missing and are never found. The horrible hell that those families go thru. They must live with the knowledge that their child could be dead, harmed, scared... the unthinkable list goes on. Many of these autistic people have medical conditions furthering the urgency of the search.
  When April rolls around everyone begins to talks about Autism awareness and yet there is never a mention of wandering and elopement. I believe that the only way to reduce deaths would be for the public to be aware of the danger. Also, for all of the parents and care givers to know that it is always a possibility and to be prepared. Even if an autistic person hasn't previously wandered there is always a chance for it regardless of age.
   I will give you some statistics. I am sharing these to educate, not to cause fear. Please do your own research too. According to the National Autism Association an estimated 48% of children with autism are likely to wander or bolt from a safe place. That is almost four times that of their non ASD counterparts. A staggering 91% of ASD children 14 years and younger who died during the years 2009-2010, was by accidental drowning. Most of the those were due to elopement. Children with ASD are more likely to be drawn to water.
   Now, if you haven't experienced this you might wonder how it could happen. And even question the parents ability to do their job. It's not that simple. I will share with you some examples of elopement. Unfortunately, these are examples from my personal experience. Yes, I cried as I wrote this.
   Some children are always in the bolting mode. A split second of looking a way can be all that it takes. Having to be in a hyper vigilant state 24/7 is exhausting. Not being able to use the bathroom without your child being locked in the bathroom with you. Never showering without them locked in with you, checking at every sound. Hurrying thru a three minute shower in fear that they had managed to figure out how to get out of the bathroom. Constantly living in fear.
   Another example of elopement, that is a bit trickier, would be a person who blots when they are suddenly overwhelmed. This is the type that catches you completely off guard. They may go months or years in between episodes. You may think that you are in the clear. Maybe, just maybe, they have out grown it. You relax your guard a bit. Then you suddenly find yourself running in flip flops trying to catch them before they make it to a busy road. Your heart is in your throat,(not one time has another parent tried to help me stop him). You promise your self to never let your guard down again.
   One of the scariest, (for the parents or care giver), examples may be someone who when they suddenly become upset not only runs but hides too. Just as you give up and are about to dial 911 you find them. After you get them to calm down, you remind them that they have to answer when you call their name. You tell them how you love them and need to know that they are safe.
   All of the above examples were triggered by sensory overload,(too much noise, people or bright lights), or emotional, (anxiety, fear or being sad). These are just some of many examples. People with Autism process incoming information differently. They can have a slower reaction time to verbal or visual commands. They might be frightened by strangers or the police. Ultimately, my loved one leaves the safe place that he is in not because he is being defiant, naughty, stubborn or malicious. It is much more complex then that. My best defense and only hope is to try and get my son to realize that when he feels that way running will only hurt him.

Before you read the end of this I want you to know that little Malik Drummond is still missing four months later. Please, click on the link.


    Maybe, like me, you will find yourself praying. Praying for those who have lost their child in this tragic way. Praying for those who have someone missing. Praying for your child, that they will never become another statistic. Two days ago little 2 year old Malik Drummond walked out of his Searcy, AR home while his mom was bathing. As of this morning they sill haven't found him. He is whom I pray for today. I pray that, against all odds, he is found safe and alive. I don't know that there exists a solution for every case.  Remember the next time you come across a story like his that it could be you. It could be your child lost and alone. Share their story and pray. The more people who know the facts, then maybe more people will pay attention if they see a child alone.

Lord have mercy on Malik and his family.

If you or someone you know, are in the care of someone who is autistic you can purchase the Big Red Safety box. The National Autism Association, also, has a program where you can get a Big Red Safety Box for free. For more information about wandering and elopement prevention please go to:  http://nationalautismassociation.org/big-red-safety-box/

Saturday, March 21, 2015

This is a little post about World Down Syndrome Day. 

   Up until this last year I had never personally known someone with Down Syndrome. I was raised by a mom who had a passion for special needs adults and children. She passed that on to me along with compassion and acceptance.
  A year ago this last Friday began my first true experience with anyone with down syndrome. It was in the shape of a super sweet little girl. She was kind and compassionate. She helped my son feel at ease in his new school. I will be forever grateful for that. She is now in middle school and no longer at my son's school. Her presence is missed.
    This last fall a new little boy joined my son's class he is almost the same age as my son. When I look at him I see his mom and dad. He looks so much like them. He has an amazing mom who has made herself an expert on Downs Syndrome so that she is able to do what is best for him at all times.
   This little boy I love. No he isn't my kid or related to me. There is something about him that is beyond words. He is smart, kind and so sweet.

He loves my son, so maybe that's apart of my love for him?

   He loves Paw Patrol, dncing and doing the word wall, (he knows every word). Spiders fascinate him. When he used to see me he would point and ask, "what your name?" Now he points and say,"You ,(kid#1), mom!"
   Today is World Down Syndrome Day. Children and adults with Down Syndrome are beautiful and unique. I truly do believe that there is a need in society for everyone. Its our job as a whole to find it. Earlier today I shared a meme on my Facebook page. I think that it sums up exactly what I feel the best.

"Life is the right of every child. Not just a special privilege for the fortunate, the planned and the perfect."

Thursday, March 19, 2015

Full Circle

 I stayed up last night and watched Dancing With the Stars. After Army veteran Noah Galloway danced, I wanted to stand up and cheer.  The judge Carrie Ann Inaba said the very words that rattle me to the core, "You are broadening the scope of what dance looks like."  Yes, yes a million times over YES. Instead of you don't look autistic, say you are redefining what I thought autism looked like. I can't believe that I got to witness that moment of epiphany. Beautiful. 
  My question to you is how do we redefine the world view on autism and all disabilities in such a way that the struggle is both acknowledged and not marginalized. While at the same time opening the eyes of those around them/us see the beauty and potential in that person? Watching the look on her face. That beautiful, "ah, ha" moment. Her world was changed. There needs to be more of that!

#DWTS  #Truth #Autism

Link to a YouTube video of their performance. 

DWTS Season 20 Week 1 - Noah Galloway & Sharna - Cha Cha - Dancing With ...: https://youtu.be/B3KyGXhPrEE

   That is a copy of a post I put on my Facebook page yesterday.  The whole thing got my mind going. One of my fellow blogger Sophie's Mom from On The Train with Sophie told me, "That is what a lot of autistic advocates write about and why I enjoy reading their work- it gives me hope that maybe that is possible." 

    Today, I had my hair appointment. She has been doing my hair for about ten years and has watched my kids grow up. In the process of us chatting my post from yesterday came up. That quickly turned to how she feels about my son.

   I suddenly had a flash back to about a year ago. It was her and me talking. I was telling her about my son's diagnosis.  Her reaction was, wow, I would have never thought. To her he is just him. I remember that I felt like I had to justify my statement.  I quickly pointed out all of his struggles and how hard it was.  I was whining. I completely missed the point of what she was saying. She was saying that my son was him and that was awesome no matter what. Going back to my question, how do we as a society acknowledge and support someone with different needs without marginalizing their struggle?
   There is an elephant in the room when it comes to this subject. It is a big one. One that has to be named before a real discussion can happen. It is autistics against autistic parents.
  On one side is autistics saying that their input as autistic adults is valid and valuable. Really if it were any other disability you would never hear or expect the parents struggle to be apart of the conversation. Or if it was it would be a small part. On the other side is the parents who are saying no you can talk and write so you have no clue what it is like to be my child. There is an automatic assumption that if an autistic adult can advocate, then they are not the same as their child.
   Parents, listen I get it. There is so much that my son struggles with. I don't know what the future holds for him. Some days his struggles look like the tallest mountain that is impossible for him to climb. I, like you, have at times felt like your struggles are being marginalized. You feel like your voice isn't being heard. Also, that all that anyone hears is about what a "blessing" autism is.  That it is all unicorns and rainbows. All the while you are locked in your bathroom so that your child can't hit you again.
  Your struggles are real, the pain you feel is real. There needs to be something done to help you,(us). The reality is that if you took away the autism your child wouldn't suddenly be ok. Your life wouldn't suddenly become , "normal." I'm sorry that you feel like you need to share your nightmare experience with others in order to prove that you aren't crazy. I truly am. It's hard to think rationally when you are sleep deprived and it has been years since you have had a decent night of sleep.

   In my own way, that was what I was doing a year ago to my beautician . I felt like I needed to prove to everyone just how hard I had it.

    What I have concluded is that it is not a helpful or productive path.  It doesn't help you get services or spread, "awareness." It is creating a world that I don't want my kids to grow up in. It is what African Americans fight against, the gay movement and religious rights groups have fought against. Would you expect African Americans, gays or religious people to not be apart of the conversation? NOT including Autistics in the conversation would be unimaginable. Those services, protection and rights? They don't just affect our kid, because they will grow up. They will be the voice for the next generation of children. The voice who will say, yes I can eat where I want, receive medical care, be hired at a job. The voice demanded that all humans be treated... like humans.
   I don't want my son be a victim of a violent crime that gets brushed off because his life has less value. A big organization,(who shall remain name less... hummm kind of like Voldemort... coincidence?),  are the bane of the Neurodiversity movement. They are constantly promoting this idea of autism being an unwanted disease. Once you start down the,"cure" path what are you saying to your child? If there ever were to be a, "cure," it wouldn't help you right now anyway. Ultimately, how are you expect to get real help for someone society deems unworthy of the help?
   I am asking you for something big. Please, take a step back. For those around us to truly be able to see the beauty and potential in our children we must first see it and embrace it. Then we must turn to the law makers and leaders of this country as a united front and demand the tools and services that we need to be successful. As we quickly approach April, instead of lighting it up blue let us embrace the beautiful diversity that surrounds us. Autism is a spectrum I choose to accept and respect every shade.

Graphic From My Friend at: A Legion for Liam! Follow them A Legion For Liam at https://www.facebook.com/ALegionForLiam

Tuesday, March 10, 2015

Words Set Free

   I have written, deleted, thought,written more... copied, pasted... then deleted again. I have been fighting an internal battle of words and thoughts. I don't know what to write and what to keep private, to myself. My already thin filter has been worn out. Which means that you are going to get a very honest me. Yes my blog is an autism blog but it is also about our whole family. I also know that there is a very high percentage of autism moms/autistics, (ones who are both), who are living with autoimmune diseases, cancer, mitochondrial diseases, diabetes and others that I can't bring to mind. How do you live in a constant state of unknown? Life goes on even if you aren't able to.  
   I seem to get the same questions asked over and over, but with different words. I am tired, scared, and I am hating my body. I have thought about making a helpful list that might help you if you are in my situation. I am a list person. I am always making lists. Sometimes my lists have sub lists. 

But... I deleted them too.

My thoughts are only partially formed. Like a bubble, they burst before they have even left the wand.

Disappointment: the feeling of sadness or displeasure caused by the nonfulfillment of one's hopes or expectations.
   The last eight months have been filled with one disappointment after another. I don't know when or how it will end. I have found that I will have one or two good days surrounded by a whole lot of bad ones. Lately, every day tasks like standing and making dinner has been a challenge. I am realizing that I may never be able to name my foe. Living with a rare and unnamed disease is... it's uncharted land and no one can give you an answer. Somehow, I keep thinking that knowing what it is might help me feel better. At this point I think that it is more of a dilution. Or it could be my carrot to keep me going even when its hard. Maybe just one more...blood draw, MRI, biopsy, or other torturous test. Then I can be fixed? 
   I think that I am ready to let the words go. So many in my head, its getting crowded. Writing frees my thoughts from the prison that is my brain.
   I will always be grateful for all of the kind friends that have been there for me. The calls, texts and messages. They have been the sun shining through my cloud filled sky. The understanding words from others are rare treasures. I want to end this with a quote, one of my favorites...

For all of us who have dragons to slay.
"Fairy tales are more
than true; not
because they tell us
 that dragons exist,
but because they tell us that
 dragons can be beaten."
                                       ~G.K Chesterton