Last night, Steve and I attended a town hall meeting about an autism school that could be coming to our area by the fall of this year. I was excited for this new opportunity because our community lacks a lot of resources that would be helpful for parents with children of autism. As I sat and listened, a couple of things became clear. One I was sitting in a room full of desperate parents trying to find anything that will help them with their child. And secondly, I realized I was not alone. My thoughts are the same as other families who face this challenge every day. Some with great esteem, others just trying to make it moment by moment. Sometimes, I get myself into this box where I believe that no one understands what I am going though. How it feels to be hit by your child on a constant basis, or the repetitiveness of their minds. Then I realized, as I listen to a man talk about his son almost crying, we are all in this together. There are other moms, dads, and other caregivers that are dealing with the same meltdown, the same behavior, the same diagnosis.
Again today, I was reminded of the up hill climb that Marissa has to face. As I was sitting in the waiting room, looking at the families wondering what their story is, again I am not alone. Just because I am following doctors orders to a t, I am not in control of this situation. God is. There are times when I just plea with God to heal her or just to let me change places with my little girl. One parent last night said, "haven't I been though the ringer enough?". Unfortunately, the answer is no. Marissa is 7. This is my life. The reality is that she will always need someone to care for her. She maybe able to live semi-independently but she will always be dependent on someone.
For the most part, I am optimistic about her life and our situation. But, at the moment I am feeling rather weary. I am in a valley preparing to climb our next mountain. And as everything, there is a season. This has just been a long season.
Sunday, April 1, 2012
April is Autism Awareness Month. The newest statistic is 1 in 88. Staggering. Each child's autism is different than another and often times the child will also be diagnosed with Sensory Processing Disorder and/or Obsessive Compulsive Disorder. Autism is a challenge to many families and I hope that soon we will find a reason that so many children suffer from this disorder. I pray that day will be soon.
Marissa was diagnosed with Autism in October of 2009. I remember the day perfectly. We had two UVA appointments that were back to back. We went to see the Developmental Pediatrician first. He just kind of said it, almost like we should have known. I think in the deep crevices of my mind I knew but I thought that everything we were experiencing with her was part of her chromosome disorder. As we left his office, I felt like I had just gotten run over by a bus. The car was quiet as Steve and I headed to the next appointment. When we got to the hand doctor, he asked us what was wrong, and we told him that we just found that Marissa had autism. He looked at us puzzled and said, "I thought you knew that". As we made our way home, we barely said a word. That night I cried and cried. I just wanted to know why. She had all of these medical problems do we have to add in autism as well. When I was finished with my pity party, I knew that denial of this situation was not going to help us or Marissa. As hard as it was for us to cope with the magnitude of the diagnosis, it wasn't going to change Marissa. Marissa has autism, Marissa is autistic- Marissa is still Marissa. She was born with a genetic make up like no other and as everything her in life we will take it on. Every day is new, nothing is the same and organization is the key. All we can do is manage her environment the best way we can and push her when we feel it is appropriate. We have learned that there are somethings we still need to avoid. Each day might not hold a success, but at least she has lived for another day.
Autism is hard. It is hard on the families, educators and physicians. We have been very fortunate to have people that love, support, encourage and pray for us on a daily basis. Just when I think we can't do this another day, God puts people in our path always at the right time. I hope that next time, you see a mother or father, who has a child with autism, that you say a small prayer for them. Its amazing what prayer does!