The struggle of Autism

On May 19, 2016; my world as I knew it was turned upside down. I sat there as the doctors said those fateful words. My little man, my buddy was on the Autism Spectrum and they diagnosed him with a Sensory Processing Disorder. I knew walking in that the Autism was a possibility but I didn’t know anything about Sensory Processing Disorders. I asked where on the Autism Spectrum he was and what that meant for him. They explained that he was High functioning, what they would call Asperger’s but with the Autism Spectrum Disorder they don’t use the term Asperger’s anymore. The doctors explained the Autism Registry and told me about the Early Intervention Programs and sent us on our way.
The drive home was silent. I was in shock. How could I have missed the signs, did I do something wrong? Did my Postpartum Depression make him Autistic? Did giving him vaccines make him this way? I was filled with so many questions and felt so lost.
That night I read over the few reports that were completed finished, scanning for any new information that might be able to help me grasp what went wrong. Little did I know at that time, that nothing was wrong with him. I immediately began research ASD and SPD. I came across a lot of myths and eventually found my way to Autism Speaks. I was so engulfed in learning everything I could in order to help him be the best he could be.
Occupational Therapy started right away and I noticed that it helped with the meltdowns and improved how he sat. He loved going to see Ms. Kelsey every Thursday. I started to grasp that he was a sensory craver. Another term is Sensory Offensiveness. He is constantly seeking out activities to give his starving sensory system the input it needs.
Speech Therapy took over six months to get started. He was on the waiting list and finally they got to him. He had to be re-evaluated and found that with school and not allowing him to merely point at things was paying off. However, he still had areas that needed improvement. We went through 3 months of Speech Therapy and learned how to help him ask for things. He would say I have instead of I want. He would also just take what he wanted or just point. He wasn’t as excited for Speech Therapy as he was Occupational Therapy.
Meanwhile, we decided to have his hearing tested to see if he was hearing us properly because we could talk and he would just stare blankly at us. Over times, he would complain that the sounds around him were too loud. Other times, it seemed like loud noises didn’t bother him. They found nothing wrong with his hearing, even though he wasn’t that cooperative with the testing. The audiologist suggested that he needed more behavioral therapy.
We also struggled with Child Study Teams. Burlington City couldn’t give him an IEP because he scored average on their standardized tests, however, they admitted he was delayed in some areas. Even with all the reports, they only offered him a 504 plan. We moved to Trenton and they only looked at the test scores and refused to retest. We have since moved to Florence, and Florence will not give us an appointment unless I enroll him in public school. He is currently attending private school.
With all the day to day struggles, I filed an application with Perform Care, which is an agency that assigns, CMO’s and other services to help children with neurological and behavioral issues. It has been almost a year and I am still waiting for an answer to see if he meets their DD eligibility.
Even a year later I am constantly researching and looking for any programs that could help my son thrive in a world that doesn’t quite understand him. It seems like every time I feel like we are making a step forward, we get knocked back down.
I recently had to call Mobile Response and even though he doesn’t have the DD eligibility through Perform Care they started therapy and even assigned him a Behavioral Assistant. They are too new to see the impact but I am hopeful that the services they provide will help him.
I am hoping that he is approved through Perform Care and we can start ABA therapies and see what improvements that makes. I am hopeful that we can get him the IEP that he needs and the CMO so that other services become available.
Every day brings new rewards and new struggles. I am hoping that soon his insurance will start covering some of the therapies that he needs. I am hoping that by getting him the proper services now, I can ensure that his bright light stays that way.
Children’s Specialized Hospital also offers a Learning Test that will detect any other learning problems he has because his teacher stated that since school started he failed to retain any new information. Currently our insurance doesn’t cover that evaluation but I am hoping that Perform Care could help us with that.
I have even created a binder filled with all the reports I received and every organization I have reached out too as well as all the information I have come across.
Throughout this journey, I have learned that we are not alone in our struggles. My goal is to not only help my son but offer support to other parents going through the same thing.

 

4 thoughts on “The struggle of Autism

  1. Thank you for sharing your story on your experience. I too have a little one who is on the spectrum and newly diagnosed. She has lots of other medical issues but reading this helpful, We do lots of therapy with her and are starting ABA. The journey ahead is hard but as parents we have to do whats best for our little ones, hang in there and I hope the best for you guys! Take care!!

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