When he was first diagnosed, there were people in my family and circle of friends who just did not believe that it was true. They were convinced that it was simply a behavioral problem, and lack of parental interest in him that caused him to be behind in his development, and his tendency not to conform to “normal” behavior. It literally didn’t matter that I had an arsenal of Dr. appointments and medical documentation to prove the truth. They would say things like, “He watches to much television.” “She doesn’t pay enough attention to him.” “She never works with him.” or my favorite, “I could fix him if he were mine.” Forgive them for they know not what they do. They were trying to help but all of the blame was put on the parents. I read that when autism was first discovered, these children were actually ripped out of their families because the medical community believed the children were affected by a “frigid” mother not giving enough love to the child. That really burns me up. Those poor families were tortured as if having the care issues of a special child was not enough. The wrongful blameing causes a family to become paranoid and withdraw from the world when that is the last thing they need to do.
I have seen that most of the “blame” of these would be helpers always goes on the mother. Let me just clarify that I don’t smoke, I don’t drink, I have never been a drug user, aside perhaps from my genetics (who knows the true cause), I did nothing to cause him to be autistic. I also was a stay at home mom. Heaven knows that he was cuddled and held and loved to pieces. I have had people spread rumors that I did drugs. I have had people bluntly ask if I do a little drinking from time to time. In my case it’s just not true.
Not only are the people we know difficult to deal with, but the people we don’t know are bad to. Once I had to explain to a lady from the gas company that he had autism, because I just could not keep him out of her equipment, and she asked me what drugs I had him on. Am I crazy or is that a little beyond her job description. I had a store clerk yell at me because he spit on her when he spoke. I have been followed around stores by security because he was throwing one of those classic autistic episodes which is really just a horrible fit because he couldn’t take no for an answer when he started obsessing over a toy we couldn’t afford. I have had strangers stick their head in my car to see why he was crying when he was having another episode. The episodes in the car were usually because we just couldn’t stand to take him into another store, so he and I waited outside for my husband to return. He didn’t want to be separated from my husband so he had another episode. The strangers didn’t just look in the car though, they came equipped with dirty looks. I would sit there wondering if they called the cops or not.
Every new day is a new challenge. I read one mother say she would pray every night just to get through one more day one day at a time. The mother is usually the primary care giver. Try to remember when your children were going through their terrible two’s. Remember how you would count the minutes until bedtime? Well that is everyday for the mother of an autistic child. You love them so much, but you need peace and quiet to. You get frustrated, you cry, you yell, then you go to bed and hope that tomorrow things will go better.
My husband has a double burden as far as I am concerned. In this terrible economy he must be the bread earner, but he also has to be my support, my relief, and also deal with all the same things that I have to experience when he is home on the weekends. Imagine how he felt when he came out of that store and saw my son having an episode, his brother mortified by the events, and his wife as mad as a hat because of those “well meaning” strangers. It is no wonder that a very large percentage of families who have and autistic child end in divorce.
Then there is my other son. He is a great big brother. He takes on the roll of babysitter, teacher, and best friend. He struggles with the typical challenges of being a tweenager, as well as trying hard to be a help to his family. Often times he sacrifices playing with peers to spend time with his brother, because normal kids don’t want to be friends with an autistic child. He lives in a home that is constantly under stress. His toys and possesions take a beating from his brother too. I know struggle is good for the soul but there are days when my heart just breaks for him. He agonizes over the things his brother does that prevents him from fitting in with the guys. I see that he spends a lot of time explaining to his brother that he is going to get made fun of for the way he acts.
If you know of a family with an autistic child here is what you can do to help relieve stress. Ask your kids to play with the autistic child. Once they get to know one another a real friendship really is possible. Offer to take the child out to play for a while, so the parents can catch up on housework or even have some personal time together. That personal time is critical to keep the marriage healthy. Listen sympathetically and don’t try to offer ways to fix the child. Be a friend and come to visit even though you know you are going to get bounced off the couch by a jumping child. Most of all love them, just the way you want to be loved.