Thursday, December 12, 2013

THAT Mom...

I had the pleasure of becoming personally acquainted with Jo Ashline this past year. I'm counting her as one of the many gifts I've received.  We periodically exchange messages and/or phone calls. Typically, I'm seeking HER guidance to avoid offending people or to understand some of the history involved in the evolution of how we, as a community, view autism.

Over the Thanksgiving holiday, we exchanged messages and I told her that I was thankful for our friendship. She replied with the same sentiments and added that our friendship gives her strength - that I made "autism seem a little less scary."  Her words stuck with me and I started to ponder the 'autism times' that were the most challenging and fearful for me.

As I reflected back to the day Mike was diagnosed, I think the biggest shock was where we were as a society. It was 1997, I fully expected that our country cared about and provided for our most vulnerable citizens. As it turns out, I walked away with little more than a diagnosis and a 'good luck'.  

There were no programs or therapists within a 50 mile radius, and there was NO FUNDING. The two-year old, who had FULL medical coverage was denied treatment for his autism.

For the love of my child, I fought, lobbied, volunteered, walked, read EVERYTHING about autism, spent money I didn't have, and even became certified in several therapies along the way. I made many new friends and we faced the challenges together. We accomplished some wonderful goals and we did WHATEVER was necessary to help our children.

Mike has received EVERYTHING I believed would help him. I NEVER allowed anyone to deny him. I simply REFUSED to accept less than what he deserved. There are people who despise me and I couldn't be happier about it! There have been times when I knew I had made a friend, simply by sharing the same enemies. I intuitively knew that she was MY kind of mom. Many of those friendships continue to this day.

While I've shed a million tears about autism, and I'm sure I've got a million more to go, I've NEVER questioned 'why'.  I've never wondered why I was the mom.  The ONE mom out of the 500 (rate at the time) moms who delivered babies that day. The mom who left the hospital with an unknown destiny -autism.  

Knowing what I know today, I can assure you that if given the choice, I would still take the child with autism. Not because I LOVE my son or I'm amazed at how beautiful their minds work. Not because of their innocence or unique perspectives. I would take the child because I know what I have done for my son and countless others. I'm a fighter and I will not excuse people from doing what is right for EVERYONE with a disability.  I will not tolerate discrimination or the dismissal of people, simply because they have different challenges. 

My eyes are WIDE open to the lack of compassion and misunderstanding that exists in our society.  There is NO turning back for me. You see, as I replied to Jo, it was never the autism that scared me - it was the possibility of losing the fight.  The possibility that my son and countless others could benefit from treatment that they couldn't receive. The possibility that someone would deny my son an opportunity to reach his potential. Those were my darkest days and my biggest fears.

As Mike transitions to adulthood and adult services, I'm scared, not so much for Mike but for our community.  I'm scared to see that we are facing an epidemic number of young adults that we are not prepared for.  I'm heartbroken for the countless adults with disabilities that are spending their days and nights sitting in group homes. I'm appalled by the funding that is provided to care for adults with disabilities. I'm scared for my son's longterm future and the generations that are following him.

I've often posted that if you don't demand that every person with a disability have the right to a respectable life, you can't expect one for your child. If we, as parents, family members, and as a community are able to turn our backs on the adults that are in need, who will care? Who will care for OUR children when we no longer have the ability to fight?

During this holiday season, I encourage you to reach out within your community. Find a way, no matter how small, to make it better. Send pizzas to a group home or adult day program - thank the staff who care for adults. Remind them that their job is valuable and that you admire their commitment.

When the holidays are over, I challenge everyone to fast forward their own lives. If your child were entering adult services TODAY, what would you be facing?  If you are, as I am, scared at what you find - DO SOMETHING ABOUT IT!!

1 comment:

  1. I was scared at first when I heard autism like many of families like ours. I didn't know what to expect and most of all, I didn't know if I could be a good mom to a child with special needs. Now, I wouldn't change it for the world! There is so much that I have learned about being a parent, a person, and most of all - the world we live in. I hope that other parents feel this way as well. Love this posting by the way :-)