Mama Bear & Her Grand-Babies

Jonathan

Mama Bear

Jarod

A GRANDMOTHER’S PERSPECTIVE ON AUTISM

During the acknowledgement of parents of special needs children, my daughter Cheryl suggested that I write from a Mom Mom point of view. I had to think because the feelings I felt really don’t have words that can accurately describe how I felt.

When Jonathan was 1 year, my husband and I thought something was wrong, but didn’t want to say anything, thinking he was just a slow starter. As he became 1-1/2 we were very concerned because he didn’t seem to hear.. If you called him, or came up in back of him and made a loud noise, he wouldn’t even flinch, but if you played one of his videos or Sesame Street he would come running. This left us with a very large question mark.

Hearing tests showed he could hear. Fortunately, our daughter is not the "queen of de-Nile"…..she went immediately into full battle mode for her son... . Cheryl went for a full evaluation on Jonathan. I was there when she got back and her face told it all. It was not good. Jonathan was autistic. My husband and I knew very little about autism, but have learned more than we every wanted to know.

Cheryl wanted to be a "stay at home mother", but instead she had to take her son to school when he was 2 years old. I went with her and to say my heart broke would be the reason I don’t think there are words that describe how I felt.

When you have children, you never even think of the time when you will not only worry about your children, but their children as well. Sort of like a double barreled deal. The worry doesn’t stop. Each stage of development brings its own problems and worries. I think the only thing that has really helped me is that we dedicated Jonathan to God and sometimes I have to stop and remind myself that he is a very special child of God and he is watched over.

Asking why in this world is a waste of time. When someone asked Cheryl why you, her answer was "well, why not me?" It can happen to anyone. It changes the whole complexion of child rearing. I can use some of my child rearing skills on Jonathan, but must rely on Cheryl to tell me the best way to deal with him. Fortunately, Cheryl and I have a very open relationship and communicate well on the best approach for Jonathan.

Jonathan is in a very loving environment at school and home. He is surrounded with people who love and do the best for him. Like my daughter said, we have to get into his world, he can’t get into ours.

I can say I understand what my daughter goes thru when I have Jonathan on the weekends, but this would not be true. She lives with it constantly. Not only the physical strain, but the mental stress of worry is always present. Every achievement is a gift, when he regresses you try not to get depressed and start over. Whatever works. The disruption in family life is astronomical. All the things you thought you were going to do with your grandson have to be readjusted. Knowing how it has affected us, the affect on our daughter is so much greater.

When your children are growing up, you can fix a lot of things for them. This is one thing we can’t fix. The feeling of helplessness is tremendous. The best thing is to "be there" and listen. Never underestimate the power of communication. Sometimes Cheryl just needs to "vent" to someone who can understand her pain.

Now for a more uplifting word – We find a sense of humor in some of the things Jonathan does. Our philosophy is you can laugh or cry. Laughing is much more fun. A sense of humor can make things more bearable.

I consider Jonathan a very special child because he has to depend so much on how we treat him. That is a very big responsibility not to be taken lightly. Saying this, it still does not help after an all day session of trying to keep up with him. This is why parents of special needs children need help. No matter how much the parents love them, they are still human and have their "breaking points". They have very little privacy and no freedom. We all need to "feed our spirit" at times, and to do this we need space and quite. An essential part of life.

Sometimes it takes a tragedy in order to focus on those who need our help and understanding. No amount of words could ever describe the strain and difficulties of caring for a special needs child. It is non-stop.

Marcia Kelley, aka "MamaBear"               
        
                                                                                                

1/20/00    

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