Story of Hope: Marley

The last thing I wanted to share today on World Autism Awareness Day ~ 2014 was a story of hope. Actually it is Marley’s story of hope. I  recently was asked by the Washington Autism Alliance and Advocacy organization if I would like to contribute my son’s story to share with others during the awareness month of April. With no hesitation, I dropped everything I was doing at the moment, which was alot and sat down to type a shorten version of Marley’s journey. I wanted to participate for so many reasons. First of which was to give hope to someone else who might come across the article and to share that when you think all hope is gone, it never really is. Secondly, WAAA is the first organization I sought help from when arriving in Washington. They are hands down the best. They have a group of wonderful advocates who have help me navigate both the medical and educational avenues here in Washington. Lastly I wanted to share Marley with everyone. He is an amazing young man, and honestly I wish he could meet everyone in the world. He has a unique quirkiness to him, that is so infectious it should be shared with as many as possible. After meeting him you really will see things in ways you have never seen them before.

 

Story of Hope: Marley

Where is the reset button?  Whenever I would think about my son, I would find myself asking this question.

Marley 8 months

What a journey it has been with my son Marley, who has autism. On St. Patrick’s Day, he turned 12 and I spent the majority of the day in deep reflection over the last 12 years of his life. I remember fondly the day he was born, his gorgeous curls, his first words, his first birthday, and most of all the “beautiful beams of happy” that would flow from him. His personality was infectious.

But this happy trip down memory lane always seems to turn dark when I reflect back on the year everything went silent. I took my son for his yearly checkup and shots shortly after his second birthday. As soon as we got home from the doctor, my son spiked a fever that kept rising and he started to have mild seizures. We later found out he had contracted measles, which befuddled me since the shot he had received was the MMR.

That evening was the scariest night of my whole life. After Marley recovered, I had this sinking feeling something was still wrong with my son. My chatty boy was no longer chatty. My child who could cram anything and everything in his mouth, was now only eating peanut butter sandwiches. Playtime did a complete 180 and went from my son scattering the house with toys to sitting in a chair with his favorite spinning toy, staring blankly with no emotions. It was as if someone had come in and reprogrammed my child.

Confirmation of his diagnosis of autism came about six months later, something that was very difficult for my husband and I to hear. For the next six years, I fretted over what could have caused my son to have autism. I spent nearly all my free time researching about the next “cure” for autism. From 2004 to 2010, I must have experimented with everything I could find on the Internet from chelation therapies, to gluten-free diets, to some rather kooky, off- the-wall therapies. Nothing worked. Nothing changed. My son still had no speech, was still not potty trained, and still was a picky eater. What was I doing wrong? Then one day I met a woman who suggested to me that I look into Applied Behavior Analysis (ABA) therapy for my son, a therapy I had not heard of or tried yet.

Marley 2 years old

But my hopes were soon crushed because we found out our insurance did not cover ABA therapy. If we were going to want services for our son, it would cost $300 every two weeks. I started working graveyard shifts and selling clothing online to have the money for his therapy. He made such great progress in such a small amount of time. In just one month, he was trying new foods and drinks. But his successful therapy was short lived. Three months later I could not physically do it anymore. For months I continually beat myself up for not being able to provide him with the therapy he badly needed. I knew I couldn’t continue to be so depressed, so I gave up. I stopped looking into therapies, stop scouring the internet for the “next big thing” on autism, and started to focus on just making my son happy.

If my son wanted to only eat peanut butter & jelly sandwiches and spaghetti, well then, so be it. If he loved spending hours on end with printers, fax machines, and looking at the tail pipes (mufflers) of cars, well then that’s what we were going to do. I gave up, but it turned out to be the best thing I had ever done for my son. I came up with “mommy therapies”– what I call my creative ways to teach my son. These “mommy therapies” helped me finally potty train my son at the age of six. My son loves to dance and thoroughly enjoyed listening to music. So I used that as a way to teach him to learn to speak. And by the age of eight he was no longer grunting and pointing at what he desired but was formulating words. But I was still very hard on myself for not doing more.

Then the greatest thing happened to our family. I lost my job. Yep, I lost my job, and my husband did, too.  It couldn’t get any worse than that. For a couple of weeks,  I thought everything was going to come crumbling down around me. It was so hard and stressful contemplating our family’s future.

The only thing I found happiness in was my son. I wanted happiness for him, but was not happy in our current situation. The town we lived in in Kentucky offered no future for my son, educational or otherwise. Maybe we could move? I knew I wanted to be where my son could have the best shot at an independent future and a better educational experience. I wanted to live in an active city, a diverse city, a city with its eyes on the future and technology, but also a city I personally could find peace in. We decided Seattle was the place!

Marley 12yrs old

 

This was last year. I sent my husband out first to find a job and housing. My son and I drove cross country from Kentucky in what I thought would be the worst road trip ever, but actually turned out to be the most memorable experience I have ever had with my son. My husband found a job in Redmond. Next he found a place for us to live and registered our son for school.

On the second day of school, I attended my son’s school PTA meeting and was surprised to find out after introducing myself that everyone in the room already knew my son and found him to be a very happy and loving young man. I was soon being asked to be the school’s Special Needs Parent Liaison. I had never volunteered in a PTA in my life, but I had always wanted to. I also started blogging on the school’s website about events, activities, meetings and resources available in Redmond and surrounding King County.

Posting about a training workshop is where I first found out about Washington Autism Alliance & Advocacy. Since I was a newbie to the area, there were so many questions that I had about available resources and services in the area. I quickly joined WAAA’s Facebook group and was soon inundated with so much helpful information. WAAA advocate Trish Thrush has been my go-to person. We have had some small hurdles since arriving here with insurance, trying to get evaluations, dealing with  the state Health Care Authority (HCA), to trying to secure ABA therapy, and I found WAAA to be very helpful in figuring all the information out. But it didn’t stop there, Trish helped me during a recent crisis I was having with my son’s IEP meeting and dealing with the powers that be in the school district. Thanks to her advice, our son’s IEP this year went off without a problem. Our family is so fortunate to have found such a great advocacy group and a great advocate in Trish Thrush.

My son’s school is wonderful and he has made many friends this year (something he has never experienced before). He is making great strides and is officially learning to read. In just the small amount of time that we have been in Washington, he has gone from reading three words to over 40 words. He heads off to middle school next year and I am confident that he will continue to be successful.

Marley and MeSo where is the reset button? Nowadays I only think about this question because I wish I had not spent so many years worrying, fretting, and wasting time and money on all those therapies and so called “cures for autism.”  I am not focusing on a “do-over” anymore. I have found my happiness. Everything is still not a bed of roses by a long shot and I know the years ahead advocating and teaching my son to advocate for himself will be hard.

I just want to share with other parents who read my journey, not to waste time worrying about causes and cures. My advice to others is to share your experience, and in turn learn from others and their experiences with disabilities. I know now, through advocacy, the more we create a greater understanding and acceptance for our sons/ daughters, the happier and more successful our children will be in the future.

Please if you are looking for answers and don’t know where to find them, contact WAAA. There were founded in 2007, and exists to remove barriers to timely access to evidence based treatment, effective education programs,  sustainable community based services and supports for children and adults statewide.

Their mission is to dramatically improve access to autism insurance benefits and effective services in schools and communities regardless of personal financial background.

Their Vision:

  • Remove barriers to insurance coverage of effective autism treatment in the state of Washington
  • Promote Clinical Practice Guidelines for evidence based treatment of autism
  • Promote an adequate network of healthcare providers (including behavioral and allied health treatments) with bonafide autism experience statewide, regardless of funding source (Medicaid, private insurance)
  • Provide support, guidance, and resources to families and professionals towards making effective autism treatment and socially significant habilitative programs attainable statewide

– See more at: http://www.washingtonautismadvocacy.org

 

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