Let Adversity Make You; Not Break You! By ME of course

Having a child with Autism can be challenging at best and downright difficult at worst. Try this times three and you have the makings of a very bizarre, and interesting home life.  Add to this the regular everyday foibles of caring for an elderly parent with Alzheimer’s, a typically developing daughter in college, a husband who comes home on weekends, a crazy dog, a needy cat, and you now have the three-ring circus I like to call home. (Please note-“like” may be too strong of a word). Life is hard. Nowhere was there a guarantee that I would have an easy life- I never asked for one-but sometimes I question, “Why me?”. I’m sure in the grand scheme of things what I am doing is quite important, but sometimes I wonder, to whom is it important?

Currently in the world of Autism there is so much debate about, ”Do vaccines, or don’t they?” “To go GFCF or not to go?” “Bio treatments, or ABA?” At this point I don’t freaking CARE! Everywhere I look people are losing focus on what really matters! The child! The Family! The family unit is being torn asunder, and it all starts with the diagnosis.  People don’t realize that we need to help the family as a unit! Let’s question why the divorce rate is so much higher within families who have a child diagnosed with a developmental disability. Let’s focus on getting the family treatment. The direst of circumstances becomes more bearable if you have someone to lean on. Why are parents giving up on their child with DD’s? Because it’s HARD! It SUCKS! It’s not what they asked for!  So let’s turn this around. It’s not what they asked for, but it IS what they got.

What many don’t realize is that these families need to grieve their loss. I call this loss “The Death of Dreams”.  When I was pregnant and would sit cuddled in my husband’s arms with his hand on my belly, we would dream. We would laugh and hug and whisper our dreams for our unborn son together. I remember this time fondly. It was as though we were cocooned in our own little sunshiney world where absolutely anything was possible.  We dreamt that he would be tall, and strong. Athletic and brilliant. Kind and resolved. He was going to be an astronaut, a chef, an opera singer, a doctor.  Nowhere on that list were the wishes that he would never have friends, have seizures, have sensory issues.  We never imagined he would have a horrible reaction to his medication that would cause him to be violent towards us. We never imagined the horror of seeing him placed in the back of a police car and driven off to a Behavioral Health Center.  Oh, the horror of horrors! We were faced with the possibility that we would have to place him outside of our home for the protection of our other children. Yes, our dreams came to a screeching and heart wrenching HALT!

The dream had died.

Thankfully, my stubborn streak kicked in, and I refused to let the death of a dream become the death of my family. My husband, Aaron, saw the look in my eye, grabbed the car keys and said “Let’s go”. It took some doing and a call to a lawyer friend (Thanks Dave), but we got my son.  We brought him home, and that’s where the real fight began. They say nothing worth having is ever easy, and they don’t know the half of it.

I have a new dream now. That dream is to advocate for the family. Not just mine (we’re ok now) but for every family who has a child with ANY disability. Because this sucks! The isolation kills dreams and so we must fight to break out of our isolation. No one will ever understand what it is like to have a child with a disability unless we speak up and tell them.

 



One of my friends (we'll call her A) recently posted a status update on Facebook that really upset me. Her daughter "M" (who has ASD) came home from school very excited about a birthday party invite. When "A" went through "M's" backpack the invitation was not there. Thinking her daughter had lost her invitation because all of the other children in the class had received invites A called the mom who responded that "M" was not invited because she doesn't talk and her child likes to talk. OMG I was so flabbergasted and angry. That mother does not realize she is robbing "M" of a very important social learning experience. It is due to these exclusions that our children suffer so much. The discrimination in the case is so very hurtful, just because T is not very verbal doesn't mean she doesn't communicate. And the biggest question of all... Where the HELL was the teacher? These things are not supposed to happen in classrooms. With my children the teachers made it very clear that the only way invitations could be issued at school is if EVERYONE in the class received one. This is why I have chosen the moniker Autismwarrior... Not because I want to fight Autism... There are many willing to take on that cause, but I want to fight the discrimination, intolerance, slights, and negative perceptions the general public have of children with Autism. I don't think there are enough words in the English language to express my anger and disgust!!!
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