I have dealt with all of the above, but lately, the one I have been dealing with is keeping-him-entertained guilt. This one I have dealt with for practically Joshua’s entire life, but there are times it peaks. He cannot drive a car, ride a bike, or walk the neighborhood by himself and he is totally dependent on me to take him places. He can’t just go hang out with his buddies on a whim. A job to keep him occupied is out of the question, so we rely on Special Olympics, his day program, and special recreation programs with the park district to keep him busy. Sometimes there is simply no place to go, but does he understand this? NO! He seems to think I can just create a place to go and something to do anytime I want. Honey, if I could do that both of our lives would be oodles more exciting! You might be thinking, play a game with him, read a book to him, go for a walk in the neighborhood with him, or take a drive with him; however these are not always viable options. My son wants to do things, but he is very picky about what we do. He is also picky about who we must do them with. It cannot just be me, him, and my husband, oh no! It has to include my parents or a friend of his. Many years ago my husband and I took him to Chicago on the train and when we got there we visited the Shedd Aquarium. He loves trains and I felt certain he would love the aquarium. I figured this would be a fantastic day. He whined the whole two hours we were on the train and kept signing grandma, grandpa. I spent two full hours on the train feeling guilty about not inviting my parents along. Then he whined the whole time at the aquarium, too. He just kept whining and signing grandma, grandpa all day.
My guilt came from the fact that I knew it was possible he would not enjoy the aquarium without my parents there. He always wants them there, no matter what we are doing. I honestly thought the train ride would make up for it, though. I was genuinely surprised that it did not. He loves his grandparents and I don’t blame him for always wanting them to be there, but I did not think he would have the strong reaction he had and that it would last the entire day. I thought once he saw how much fun it was he would be fine and it would pave the way for more family time for us. Boy, was I wrong!
Once, when Josh was much younger my neighbor paid her son to come over and play with him. I had no idea that was the reason for him coming over. I just thought he was a great kid! Josh used to stand out in our fenced yard and watch the kids playing up the street. He wanted to go and be with them so much that he would stand at the fence and cry. It used to break my heart. Apparently it broke my neighbor’s heart, as well. So much so that she was willing to pay for him to have a playmate. I did not find this out until months later when her daughter let it slip. And guess what? I felt guilty about it! There is absolutely no logic to that, but I felt it anyway. I don’t even know why. There were many occasions when I played in the yard with him myself, so it’s not like I never made an effort. What possible reason should I have for feeling guilty about her paying her son to come and play with mine? I was actually even a bit perturbed that she had done that. She really had some nerve! But still, I felt guilty, too.
We special needs moms don’t need any extra help at feeling guilty about things, but we tend to get help anyway. We allow guilt to creep in from outside sources. People hide from the struggles we face and then try to appease their own guilt about it by offering us unsolicited advice. Well, maybe if you weren’t so controlling he could do more for himself. If you would stop speaking to him like he was a four-year-old he might start to act more his age. Yes, that’s it! I’m sure it has nothing to do with the fact that he has the IQ of a four-year-old. Please! Maybe if you just give her what she wants you both would be happier. As if we have not thought of that already! These people have good intentions and they don’t mean to criticize, not always anyway. They just aren’t in it like we are. They can take a back seat and let us drive the car, but if something goes wrong they are quick to point out our wrong turns. They don’t know that giving in to her will only make her demands come more frequently until all you do all day is meet her demands. They don’t realize that controlling as much as you can of each situation keeps you sane when you need your sanity the most, or that sometimes it’s not about you; it’s about helping the child get through it without a meltdown. They don’t know this because they don’t deal with it. They think what they are witnessing is bad, but they have not seen how truly bad it can get. Honestly, they probably never will because they are too busy hiding from it. By all means, give me your advice then walk away so I can get back to doing the best I can.
We had a discussion about not being able to overcome it and she suggested that maybe there is no answer and I should write the blog and admit that I don’t have an answer. So I did, but when I went to finish it so I could post it I kept feeling like there had to be an answer. Everything I have learned in the last few years tells me there is an answer for every problem. I have learned enough about the ego to know these guilt feelings come straight from there. So I decided to give myself more time to finish this post. Then I remembered that I read something about guilt and a quote popped into my head. “Guilt is a useless emotion.” Yes, it is! Now I have something to work with! I don’t remember where I read that, but I remember writing this one down in my journal: