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Oct 13

4 years

I have been thinking about this post for a while. I have a lot I want to say, many feelings about the subject and yet I sit down to type this up and I am not sure what to say. Sometimes there is too much I feel and think. It becomes a jumbled mess in my head. I will give it an honest try!

This day 4 years ago on October 13, 2009 Brody, who was 3 years old and 4 months, received an official diagnosis of autism. When I think back to that day, I processed the diagnosis two ways. In one way, the diagnosis we expected and Brody’s symptoms of autism had been increasing over the past couple years. A few months previous, the summer Brody turned 3 years old, he was exhibiting many sensory processing issues we had never seen. Due to these circumstances and the fact that the appointment with the clinical psychologist took a couple months, I had time to do my research and read up about autism. I knew the symptoms and realized that with Brody displaying a lack of communication, lack of social interaction, repetitious or restrictive behavior, autism was exactly what the doctor would diagnose. Therefore, in all regards, the diagnosis was something that I was expecting. It was just something we had to do to get the diagnosis on file.

The other way I processed the diagnosis was that it was real, this was happening and our lives as caregivers and parents was going to change even more. The reassurance we received when he was 18 months old, that with some speech therapy he would be fine was something of the past. The stories others told me about a kid they knew who was a late talker but was now fine, was not Brody’s story. I officially let go of the future possibilities that came with the ‘delays’ he had been diagnosed with through Early Intervention and tried to fully realize and comprehend our new one. And what was Brody’s future now…well the tricky little beast that is autism means the future is too unpredictable to really know anything. With work, Brody could get better, or despite all the work, he could get worse. Brody could live independently someday and be a fully functioning adult or he might have to live with us the rest of his life. This is simultaneously hopeful and terrifying!

I believe labels can be positive and negative. Some people hide behind it and let it be their excuse for everything. For others it provides clarity in who or what they are. I arrived somewhere in the middle there that day that Brody was diagnosed. So many meltdowns Brody had, unusual behavior he shows, I had to speak for Brody or tell others he could not talk. Now it all meant something and there was a label. Labels did not restrict us but provided an explanation to strangers, family and friends. I had a word that a doctor diagnosed Brody with so I was not just being a worried, negative, pessimistic or neurotic mother. I could find books, websites and support from others experiencing what I was going through. I did not do all that at once. I let myself have time to digest everything. I took a step back from some family and friends. Nevertheless, at that moment, driving back from the doctor’s office – the reality made me feel like an elephant was sitting on my chest.  Brody had morphed year to year, showing more signs of autism. For so long he had received some therapy, special ed preschool and help. We were trying but none of it had helped because at 3 he was severely delayed and instead of being ‘at-risk’ for autism he now had it. I am not sure where he passed the line. It did not matter because it was happening.

All of it, the two ways I processed the diagnosis, it should have helped me accept my life,  my son, my roles as his mother but that was when the forever fight in my head and heart began. I cannot accept because I want to keep fighting. I accept that Brody has autism but I will not accept that how he is perfectly fine the way he is right now. I know that does not really make sense. But, still I have felt that way ever since that day 4 years ago.  It is because for me accepting who Brody was made all the autism symptoms who he is and I believe that is not what he is.

There is a Brody in there that can answer the simple question, “What is your name?”

There is a Brody in there that can have a conversation with me

There is a Brody in there that wants to play with Ryan

There is a Brody in there that can make and play with friends

There is a Brody in there that can sit and talk with his Dad about the day he had

There is a Brody in there that can go to the store and pick out a Halloween costume

There is a Brody in there that can fight with his brother and say, “he hurt my feelings”

There is a Brody in there that will tell me how he feels

There is a Brody in there that will have his first crush

There is a Brody in there that will be nervous on his first day of Jr. High

I could go on and on but I do not want to seem like I am wading in my sorrows. Just wanting to properly express what did and continues to go through my head when I think of this day 4 years ago.

We have had some amazing successes and wins over these past 4 years and I am sure they will continue because they surely need to! Brody works really hard and he spends so many days with teachers, aides, provider, mom and dad bugging him to do stuff he does not want to do. He really is a trooper with it all and he continues to express his love through so many smiles, giggles, and hugs. Here are some pictures from over the years. They are some snapshots of Brody over the years.

Brody1 061 DSCN9124 DSCN0569 100_6294 100_3743 Brody without red eye

 

 

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