The title to this blog says it all. When we were finding out what was wrong with Luke our world as we knew it had turned upside down. As any parent with a special needs child understands that every day is a new challenge and some days are just harder than others. For us the autism diagnosis was devastating to hear especially after experiencing two miscarriages. We lost two special babies that we would not get to know or love. Our older son, Matthew was sent by God to us a little past a year of losing our second child. Then when Matthew was 5, Luke was born. Everything was “normal.” Luke loved his brother and would interact with him and us too very well. Luke met every milestone and was saying words. He was so loving and smiled all the time. He actually tried to play with toys with his brother and loved watching “Curious George.” Everything was perfect.
I am not sure what happened to Luke. A child that just stops talking, has no eye contact or gestures, or no interaction with us was such a scary time. After realizing that something was not right we knew Luke needed help.
He needed all the therapy that we could get for him. We took Luke to the doctor in hopes for an answer or something that could help him. Unfortunately autism has no cure, and really has no medical detection. The only “test” that doctors can give is just an observation of the child in a room full of toys.
After learning all about autism, some autism facts that I found out was that autism affects 1 in 54 children and boys are nearly 5 times more likely than girls to have autism. Autism is the fastest-growing developmental disability in the U.S. On average, autism costs an estimated $60,000 a year through childhood, with the bulk of the costs in special services/therapies and lost wages related to increased demands on one or both parents. Autism is a very stressful, demanding full time job and the actually research that autism receives is less than 5% of the funding of many less prevalent childhood diseases.
Like most families we had a very hard time getting insurance to pay for therapy services, and we live in a rural area and most of the needed therapies that Luke needed we did not have locally. Every child should have the therapies that they need. We were fortunate to have a speech therapist and play therapist come to our house but Luke needed more than just an hour or two a week. He needed much more therapy and I started researching on the internet about what kind of autism therapies were available. I found that ABA therapy was one of the best therapies for autism but unfortunately it was not offered in our area. At that time the closest ABA therapist was almost 2 hours away. I started researching online about ABA and learned a lot about ABA therapy through You Tube and other resources. I started to help Luke myself the best that I could do by what I had learned online. I knew then I would have to fight for Luke to get him the therapy he needed so much. I prayed that ABA would be available soon for us in our area. I joined a local autism group which was very helpful in knowing that other parents were going through the same issues as we were. Autism is a very stressful time on a family, but when you can not get all the services that your child needs just makes things worse.
I spent most of my days crying, or blaming myself the way Luke was. That time in my life was the lowest and most depressed I have ever been. I know one day while having a meeting with his speech therapist, psychologist, and CDSA coordinator I just broke down and started crying. I was screaming on the inside and I wanted them ALL out of my house and I wanted this nightmare to go away!!! I could not eat or sleep. If I did go to sleep I would sometimes wake in the middle of the night just to realize that the nightmare was still there and Luke still had autism. I worried about his future, I worried about what I could do to help him more. My mind was always worried and wondering would Luke ever talk again. I prayed that the little boy I once knew would just wake up one day and look at me and say “Mommie.” I prayed that he would tell me what he wanted to eat or drink. It was the simple things that I so prayed for and something I would never take for granted again…. God was definitely with us during this time and God helped us get through each day. I thank God everyday for the peace and comfort he gave us during this traumatic time in our lives.
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He is my heart, I am his voice…..
