Monday, March 9, 2015

Hide My Pain

Every day I hide my pain from the world. I would say the majority of special needs mothers hide their pain. We hurt and for some of us, there is no end. The pain will be there until we take our last breath. I use "some of us" because some mothers deal with  mild special needs such as mild autism while others deal with severe special needs and severe autism. Mild and severe autism are not even in the same ballpark. Mild autism doesn't change your life to the degree that severe does. A child with mild autism has a much greater chance in life to achieve independence.

It has been weighing heavy on my heart lately about Trenton's inability to talk and communicate. He is able to say words but as far as daily functional speech, he is considered non-verbal.  He will be 5 years old this summer! Oh how the pain is unbearable! I know how bad my pain is so I can't even imagine how Trenton feels to live in his body.

I have had some horrible moments lately where I have not been able to figure out what Trenton wants. The frustration I see in his eyes when I can't figure it out is pain to my heart. However, it is the sadness and disappointment in his eyes that completely tears me up. It completely shatters me. I am at the point where I found myself saying the other day, "Its okay if he never talks, I just want him to be able to communicate. I don't want him to struggle his whole life without the ability to communicate his needs."
Some individuals with autism are unable to communicate at all. Can you imagine? I know there are things going on in his mind that he wants to let me know but he can't.
For example, how does a child who can't communicate let you know that his stomach hurts? How does he let me know that he wants McDonalds?

Today the boys had appointments with Dr. Harshawat. Dr. Paras Harshawat is a child and adolescent psychiatrist practicing since 1988. He has over 20 years experience in treating mental illness in children, adolescents, adults, and geriatrics. He has extensive experience working with children and adolescents with ADHD, Autism, Bipolar, Depression, and various behavioral issues. He has an established multi-physician private practice, is the medical director of Harsha Behavioral Center and Gibault.Dr. The Harshawats realized that these children and adolescents needed ongoing care to improve the quality of their lives and Harsha Cognitive Center was started.

Needless to say with an amazing past that Dr. Harshawat has, I was excited to take the boys to see him. The reason for their appointment was to get an update on their diagnosis which has to happen from time to time for insurance purposes. I guess it is normal to get my hopes up. Hint the word hope is something that we never give up on! When Dr. Harshawat was talking about Trenton and where he scored he said, " Trenton scored very high on the spectrum." For a split second I had an ounce of hope and I said, "Excuse me?" My mind heard "high" and all I could think was, "He thinks Trenton is going to be more high functioning than I thought!"
Then it hit me when he said, " He scored high on the severe end."

Boom!!!!!!!!!!! I was hit with a wave of emotions and hid my pain for the rest of the appointment. It doesn't matter if you have heard it before, it always hurts to hear "Severe autism"
To be honest, I have been completely down all evening. It is nothing new, I have been down lately anyway thinking about Trenton's communication and his future.
As always, I will survive and continue to hide my pain.  My pain may pull at my heartstrings and leave me an emotional mess daily, but my pain is for my child. The child I brought into the world who suffers everyday.

2 comments:

  1. Sending you a cyberhug from a stranger who can at least empathize with you. It never gets easy, but you do get tougher. And you learn what to value in life. May I humbly suggest reading some of Jean Vanier's works? He founded l'Arche, a network of homes for the disabled with a family setting back in the 60s. It started when he invited two young men with Down's Syndrome living in an institution in France to live in his home with him and it has grown into an international organization. Anyway, his writings have been a huge comfort to me and has helped me to accept and realize that God hasn't abandoned us. Maybe it can help you too?

    Hope you feel better soon. :)

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  2. What a nice comment and post from your "cyber" friend. I cried all the way home from Terre Haute. Even though you know in your heart, it still hurts to hear it, once again, from the "experts" in the field. I try not to think of the future, and "Let Go and Let God" as the saying goes, but HOW???? do you do that???? I wish someone would tell me!!!
    I still love Trenton and Andrew unconditionally!!! They are my "angels" on this earth............and will both be whole one day!!!!
    Nana

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