We can get frustrated as parents when no one seems to understand our children. I spent years being defensive and angry with lack of understanding for Billy Ray. It felt like people who did not have clue what we experienced were judging Billy Ray and me.
One day in a conversation with a friend, I tried to explain why Billy Ray is often dressed well and I am in jeans with wet hair and no makeup when we get to church on a Sunday morning. Doing my makeup, hair and getting dressed before giving Billy Ray’s bath is a waste of time because he splashes water and I get lotions and toothpaste, etc. all over me getting him ready. Once he is ready to go, he thinks it is time to go. To make him wait too long for me to get ready will likely agitate him to the point he may flop on the floor in confusion or agitation and be unwilling to go out the door. Sometimes it is a choice to go without the primping I would like to do for my own appearance or to stay home.
I was hurt by her seeming lack of interest in my explanation. Later as I thought about the conversation, it was like a light dawning. How could she absorb what I was so laboriously heaping on her. Would I have been able to do that before Autism came into our life? Probably not.
During my husband’s recent visit to his sons in California, my consultant friend, Keddie, came over to spend the evening and night with us. She left the guest room door open because she said she wanted to get a better picture of what our nights are like. The next morning she told me that while the journal we maintain on Billy Ray’s computer show the times we are awake in the night she would never had realized what the nights are really like had she not come for the night. Keddie is a skilled consultant who has many years of experience with people who experience of variety of disabilities. If she needed to see it to grasp the bouncing, noise, and interrupted sleep how we expect the general public to comprehend it.
The same is true of professionals or people we meet in the community. They see our children as they are when they meet us. What we experience everyday alludes them because our children may behave one way in one environment and another way in a different place.
One of the biggest jobs we have as parents is to educate those involved with our children. It is just as unrealistic for us to expect them to understand as it is for them to expect our children to act in certain ways.
I just wanted to add too that the our children have a big job in educating us as parents. On occasion when I will instruct Billy Ray to be a little quieter in the morning he will say “I can’t”. My lack of understanding must frustrate him at times as much as society frustrates us as parents.
Peggy Lou Morgan