A Mother/Grandmother’s Story…

I had an idea of something interesting I could do for the blog. As some of you know my brother Duane is Autistic as well. So I thought the idea of having her write from her own experiences … from the moment she found out my brother was autistic 30 years ago to when she heard my sons were just a few ago and how the experiences were different… So here it is and I hope you enjoy it… Follow my Momma at https://shesingsagain.wordpress.com/

“I remember the day well when the doctor told me that my son had autism.  He continued on to say that I was a young woman who had my whole life in front of me.  He told me that I could have other children, and that I needed to put my son in an institution and forget I ever had a son.  I remember well the sound of the clock ticking on the wall and as the tears welled up inside of me, I resolved that I would take care of my son.  He was given to me, a precious gift from God.  It was not until I took his little hand and led him to the car that I let the tears fall.

Eventually he was enrolled in a special program at Binghamton University.  Under the direction of Dr. Raymond Romanczyk  he learned to talk and do a lot of things we never expected that he would be able to do.  His sister used to sit with him and try to teach him the alphabet.  And he did learn, as I discovered one day when I opened the closet door and found the ABCs painted on it.  Days like that were the spice of our life, but there were days when I would go into his room and cry hot tears as I stroked his cheek with my fingers.  How we love him.

I asked him one time when he got older where he wanted to live.  I thought he would say that he wanted to live with me  but he said “Duane live in group home.”  As much as I wanted him to live with me, I had to let him go.  He is a happy man now and he is going to a group home in a couple of weeks.  He washes his own clothes, takes care of his room and clears the table.  Our family is so proud of the progress he has made.

Now I stand in another office with another medical professional as they tell my daughter and myself that my four-year-old twin grandsons have autism also.  I catch my breath and look at my beautiful daughter and see the tears in her eyes as she listens intently to what they were saying to us.  I pat her arm and listen to the too-familiar words.

I take one of my grandsons by the hand and we make our way to the car.  We sit quietly for a long moment as my daughter verbalizes what was on both of our minds.  “It’s true, isn’t it mom?”  I never wanted that for my grandchildren and I never wanted that for my daughter.  I just could not imagine what her life would be like raising two autistic sons.

We knew there was something wrong.  With me it was a nagging feeling in the pit of my stomach.  My daughter would tell me how they would wake up at night and just scream.  She said they were inconsolable.   When I witnessed such an occurance one night, it all began to sink in.   Then there were the tantrums and there seemed to be nothing she could do to prevent them.  While they could verbalize they both often spoke in what we thought was twin speak.  At four you would think there would be more language than this strange one.  They seemed to obsess about some of their toys and would scream in frustration if she could not find them.  She mentioned this to her doctor but was told not to worry about it because twins sometimes talk in twinspeak at their age.  She was told to just relax and enjoy them.  My daughter is a unique person who accepts every roadblock in her life and presses through, and she has done an exceptional job with them.  They are so beautiful, so bright but we both still felt that nagging doubt.  We knew something was wrong. I voiced this one time to a doctor that was taking care of them and was told to calm down.

And now at four they finally have a diagnosis.  My daughter is learning how to be an advocate for them.    While she is taking care of them she is completing a degree in restaurant management.  She runs a very disciplined household and does her best to deal with their diagnosis.  She made a decision to put the boys in regular kindergarten.  They have an aide to work with them in the class.   One of them, Hunter, is doing very well and is making a lot of progress.   The other one Tyler, is struggling.

I know the road my daughter will walk will not be an easy one.  There will be tears and laughter and joy and sadness.  We love them, these bright and happy children and we have made a decision that we will do everything in our power to help them.  Just when we feel that it is impossible, one of them will stop in their play and will run up to us and reach their head up to us to give them a kiss, all the while making sure they do not look in our eyes with their beautiful gray-green ones.  Then he will run off to play with his brother.  My daughter watches him run back to his brother and turns to me with a happy smile.  I can see it in her eyes, she will meet the challenge and do all she can to help them have the best life that she can give. “

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2 thoughts on “A Mother/Grandmother’s Story…

  1. Jesie – thank you for sharing. I understand the difficultly you are having but also the joys as well. My sister’s son who is in his 40’s suffered brain damage leaving him with a mentally of 3yr old. Through special education he learned to write his name and grew up with 5 siblings who loved and cared for him. He still lives with his parents and because of the Lord he’s quite a man. The whole family just loves him and appreciate who he is. I saw my sister overcome great difficulties with tears but enjoyed the joys as well. Prayer helped her where nothing else could. I will keep you in my prayers, may you come to know the Fatherhood of our God. For He is Good, Good Father. Love & blessings towards you, Grandma and those lovely boys. — Luisa

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