Autism: The line that at times divides

My fantastic Sister-in-Law bought me a copy of a book Temple Grandin’s Mother wrote “A Thorn in my Pocket”I urge anyone who is given the opportunity to read it.

I savored every word the eloquent Eustacia Cutler wrote. She is a very intelligent woman, who is honest in her writings. Her experiences echo our shared experiences. Her guilt, her passion, her undying love for her children.

Mrs. Cutler was brave enough to tell the story of how Autism changed her life. Changed her family. Changed the path she thought she was going to walk down.

I have always tried to be as positive as possible about autism’s place in our life.

I think this is a healthy way to view this challenge and I embrace the fact my son is different.

Different, not inadequate. Different, not flawed. Different, not anything less then perfect.

He is a beautiful soul. A warm heart. A big sense of humor. A deep thinker. He is my baby. My little boy who is quickly turning in to a young man. A young man I am extremely proud of.

Having a child with a special need is taxing though. There is no way around that.

We must be steadfast in our fight to help him find peace in life. We must push just a little harder to ensure he gets all the opportunities he needs to be afforded.

At night, our sigh is just a little louder.

We worry about the “hows”  a bit more. HOW is my son going to function? HOW will he endure the taunting? HOW will we survive grade school? HOW will we get him to conform to societies expectations? HOW will I survive this? HOW can we be sure he is happy?

Mrs Cutler (formerly Grandin) gives us a look inside her marriage. I find this most helpful because as a Wife I know first hand how dividing a diagnosis of Autism can be on a marriage, even if the marriage survives.

Inside the Grandin family there seemed to be a ticking time bomb. Autism was the slow burning fuse that would eventually explode the family to pieces.

Does Autism have to be this way?

I don’t believe it has to be forever, but yes. I think it is fair to say this is a reasonable reaction, at least temporarily.

My Husband loves my son wholehearted and he beams with pride when he recounts Lincolns accomplishments. He has accepted his diagnosis and he wants to move forward to make life better for him. Better for us.

I think he would agree though that when the diagnosis was first handed down he was shattered. He felt he let Lincoln down. He felt cheated.

I shared this same feeling. Autism consumed me. When I was given a checklist to complete for ASD I remember how badly my hand shook and how empty I felt reading the words, those unspoken words, over and over in my head. AUTISM.

Anyone that knows me knows that I refuse to be beaten. I ran with the diagnosis and did everything I could to help my son. When the wait list was too long, I called someone else. I hired privately when the money was available. I dedicated myself to figuring out Autism so I could then help my son.

I don’t remember asking my Husband if he wanted to be a part of the decision-making, I was too afraid to pause fo fear I would fall down and never be strong enough to stand back up.

Why didn’t I notice that I was neglecting my marriage? I did. I just didn’t have time to worry about the consequences. I didn’t have a choice in the matter. My heart was tied to the imploring look in my son’s eyes and I didn’t have enough to give to the other set of eyes that begged to be comforted too. I imagine there were a third pair of eyes pleading for help, if I only took the time to look in the mirror. I didn’t have the time. And that was that.

As a couple though, I witnessed Autism lighting that fuse that if left simmering, would eventually blow us skyward, into a million pieces we could not possibly recollect and fit together again to be whole.

Thankfully we managed in a busy home of 4 children, 2 pets and 2 working parents to smother the spark and gain control of the situation.

We accepted the hand life dealt us, we learned to see our son for the joy he is instead of a label of AUTISM  and we pulled up on the throttle and got our life back.

We still stumble about but I think we have learned to work together, to expect a little distance, a little frustration and understand we do not stand alone but united.

Some parents will not be able to come to terms with a diagnosis and we cannot look badly at them for this. It takes a big person to admit they are not strong enough to deal with a situation like this. I would rather see them out of the picture then in the picture grudgling and impeding progress.

Temple Grandin’s mother came to terms with the fact her Husband could not accept Temple as she was, nor did her believe in her, Believe that she could thrive, grow, succeed. She did. I mean, WOW! did she ever.

Autism will try to divide you. Don’t let it.

Give yourself and your partner/spouse time to grieve over the loss of your “typical functioning” child and then embrace your “non typical” one.

View your child for the gift they are. Don’t see only gray, see the colours.

Remember your family is YOURS. Fight for it.

Dylan Thomas wrote “Do not go gentle into that good night” And although it was a different death he wanted refused  I think this heeds good warning to parents of Autistic kids. Do not let your love die. Do not let you marriage die. Rage, rage and fight.

Out of the ashes let your love become fruitful. Let it fuel the journey you need to take to find the happily ever after you all deserve.

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