Wednesday, August 7, 2013

One Year Ago Today...

One year ago today, my world came crashing down around me. My life, our life, has never been the same since.

That day, August 7, 2012, started off like any other day. I was getting ready to leave for work. My mother had just arrived to my home to care for Noah. She casually mentioned Noah's upcoming pediatrician visit and said to me "you should mention to the pediatrician that Noah is avoiding eye contact." Hearing this confirmed something deep inside of me that I had been brushing off for many many months. I had been uneasy about Noah for a long time, but I was dismissed by the doctor and other medical professionals on many occasions.

So, I went upstairs to my computer and typed into the Google search bar "toddler avoiding eye contact" and I was not prepared for what glared back at me----


My heart dropped. I searched frantically through the search entries, looking at all of the signs and symptoms of autism in a toddler....I tried to find any entry that eased my worry. But there weren't any. The more I read, the more I realized we had a huge problem. I was certain that Noah met all of the diagnostic criteria for a diagnosis of autism. I knew that very day what my son had. I kept this to myself because my husband and family would not have been prepared for this knife to the heart.

The agony that followed from knowing what my son had was nothing I have EVER experienced in my life. I called out from work for an entire week following that day. I could barely get out of bed (my family thought I had the flu). The grief swept over me......My only son had autism.... Every emotion poured over me: regrets, failure, fear, grief, and huge amounts of anxiety. I had severe depression and anxiety for over 6 months following this. And I continue to have bouts to this day. I cried all of the time- driving, at work, at home, in the shower, in my sleep even. I stopped eating. My husband had a hard time coming to terms with the possibility of his son having autism. My mother was in denial and we were constantly at odds. Everyone handles their grief in different ways. I handled it head on, they did not. This just made this time even more difficult for me.

Looking back over this last year, so much of it I cannot remember. The pain was so great that I don't recall much, except for key events and services that I fought to get for Noah. One thing I do recall vividly, is this intense DRIVE that took over my body...  I felt that I MUST find a way to pull Noah out of this dark hole that was consuming him. This drive propelled me to immediately start implementing interventions, finding help and services for my son. I fought for as many services as I possibly could get for him. Early Intervention was implemented (at my insistence- the pediatrician didn't think to do this either!), a diagnosis was made shortly after EI began and I worked hard so that Noah could get ABA therapy and his Medicaid Waiver. I hit dead ends, red tape, no answers. I knew more than the case managers, the doctors, the so called specialists- how can this be? This scares me because these "professionals" are supposed to help parents when this happens. I just did not find this in my experience.

I have been a social worker for many years and I have fought many fights on behalf of my clients. I have to say, this fight-- navigating through this broken system of services for my son to get him what he needed was the absolute HARDEST fight of my life. This just shouldn't be....

In February, Noah began ABA therapy and CEASE Therapy. This was a turning point for our family and for Noah. CEASE therapy removed the fog Noah was consumed in and ABA therapy helped Noah catch up on many things he had not yet learned. After every dose of Hep B, we saw aggravations and gains. By May, Noah had begun to talk. This was such an answer to my prayers.

I can now say that I see a distant light at the end of this tunnel. We have much farther to travel but I have hope to one day leave this dark place and see the day when my son is healed and fully recovered from this horrible condition. CEASE therapy has been the main intervention we have seen the most gains from. It is helping his body heal from vaccination injury. It is removing toxins that are hindering healthy development.

I must also say that the Lord was with me throughout this year when most of my friends and family disappeared. He was there comforting me in the darkness as I cried my heart out. And He is here still giving us the wisdom and strength to face each day and to have faith for our future.  I am so thankful to Him for his comfort, guidance and provision. I am so thankful for His healing. He is healing my son and he is healing my family.

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