When Beliefs and Reality Collide

By Connie Horn

It has been 24 hours since the phone call.

My grandson was having tests done. I was patiently waiting for the phone call to hear the results. I was also thinking about some of the behavior changes I’ve seen in him over the past few months. He used to respond when you called his name, now I can say his name over and over, with no response. Not even a glance my way. He used to let me hold and snuggle with him, now it is a struggle to get him to hug me or to sit on my lap.

Then the call came.

It is not easy to hear your grandson has autism.

My heart sank and for a brief moment my world stopped. Several thoughts went through my head. “How do I come to terms with the fact my grandson has autism? How will I cope with this? What can I do to help my son and daughter-in-law? How will this change their life? After all, their life will be different than what they expected it to be.”

I work for an organization that supports people with intellectual and developmental disabilities.

People who know me know I am an advocate for the people we support. As adults, I believe they should choose the life they want without having unnecessary restrictions placed upon them from their parents or guardians.

Years ago I worked as a direct support staff. As many of you know, that means working closely with the people you support and their parent/guardian. There were some parents/guardians who weren’t as involved as others, and to be honest it made your job a lot easier. But then there were the parents/guardians who seemed to always be involved and interfere.  Well, that is what I thought anyway. Some of you know what I am talking about! The parent or guardian who wanted to ensure their loved one is protected and cared for by being constantly involved and making all or most of the decisions for the person.

I could never understand why they wanted so much control over their child. Didn’t they want them to experience things? Didn’t they want them to make their own decisions and learn from them? Didn’t they want them to grow up? And at Christmas time and birthdays I never really understood why they would give their adult child a Mickey Mouse coloring book or pop-up toy made for a one year old!

For a brief moment, my belief changed.

As you can imagine, hearing this news fills you with many emotions. Shock and anger were among them. But one emotion seemed to overcome the rest, and that was protection. How was I going to protect my grandson from whatever in my mind, could possibly hurt him? He is only two, but my thoughts about how to protect him were working their way into his adulthood.

I had a timeline in my head! I thought to myself, what will happen when he starts school? Will other kids make fun of him? What about high school? Will he ever play football or go to a dance? After he graduates, will he be able to live on his own or get a job? Will he get married and have children? In that brief moment I was determined that if I had to hover over him, be involved in every part of his life or give him a toy that he would have fun playing with but wasn’t what some would view as age appropriate, so be it! I needed to be involved and protect him!

Then something happened to me.

I thought about the parents and guardians that I used to think interfered too much and were too protective of their child, and now I understand. But the fact is, whether a person has a disability or not, they should make choices and decisions about their life. Protecting someone from certain life situations is an honorable thing, as long as it is done without unnecessary restrictions.

As I support my son and daughter-in-law I will keep this in mind and hopefully help them make the right decisions for my grandson.

2 Responses

  1. Such phone calls are inevitably painful. I work with kids and parents who face diagnoses and move on with their lives. Luckily, for many children with an Autism diagnosis, the prognosis is becoming much better. Given the efforts presently being placed on understanding and helping with Autism, I am very hopeful for the future. I am also aware that Autism treatment is very demanding of family, person, and providers alike.

    That said, each child is unique, and we d not know how things will work out. We can be supportive and hopeful. We may also remember there are many happy, successful adults who carry the Autism diagnosis. Still, it is a challenging road, and your grandchild will need all of the support you can provide. Goof or you for caring so much.

  2. Thanks for sharing. Thanks for caring. I appreciated the honest look at “the other side” of life. Your article helps those who are on both sides of loving and caring for someone with autism.

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