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Monica Pickard spent twenty years of her adult life as a child care provider. During that time, with the help of her husband, she raised her son who has been diagnosed with Autism and Developmental Delay. She learned to navigate a world that was new to her – the world of Special Needs. She now shares these experiences and the wisdom they taught her, with love and heartfelt compassion for the human condition.

Friday, September 5, 2014

Mother Guilt

            I bet when you read the title of this post, at least one thing popped into your mind that you feel guilty about; probably more than one. What is it about us moms that we cannot get free of guilt? We feel it about everything. It does not matter what the subject is; we will find a way to feel guilty about how we handle it. When you have a special needs child your guilt increases by – I want to say a zillion, but that might be a slight over estimate. There seems to be so much more for us to feel guilty about. We special needs moms have a special kind of guilt that starts right from the diagnosis. I did something wrong during my pregnancy. I could have done better during the delivery. I caused this. I don’t know how, but I know it was me.

It continues on from there. I don’t know what I’m doing! I feel like a failure when it comes to dealing with these issues. I am pushing her too hard. I should be able to understand what he wants. I am so impatient with her.
We feel guilty about not having enough time and about how we spend that time with our kids. We should work on something she needs help with, but I just want to relax and watch a movie with her. It’s faster to just do it for him and be done with it, but then I’m not helping him learn to do it himself.

We sometimes choose the right thing but end up feeling guilty about how we handled it. I made her do it herself, but I hurried her along and ended up frustrating us both!

            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. 
            I have been guilty of judging other parents when I didn’t realize how ignorant I was. Happily, I woke up to a new reality one day and realized that we are all on this planet doing the best we can. No one wants to fail; not at life and especially not at raising our kids. Whether it is a parent we are judging or someone that is criticizing our own efforts, it may look on the outside like they don’t care, or that they are too lazy or self-centered to do anything different, but we have no idea what they are struggling with on the inside. Help, compassion, and understanding are what everyone needs. Judgments do no one any good. That is what I remind myself when unwanted advice comes my way.
            When I told my friend I was thinking about writing a blog about mother guilt she encouraged me to do it. My friend started listing all the ways she has felt special needs mother guilt and I have felt every single one of the ways she listed. I told her I did not have an answer for it, though, and that was the reason I was reluctant to write it. I have never been able to stop myself from feeling mother guilt.
            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:

“There is no need for guilt because no human being can act beyond their level of consciousness. At the time, you acted at a lower level and now that you are at a higher level you can do better. The awareness was not there and so you did what you knew then.” ~ Eckhart Tolle 

            When a person does not realize they are acting from their ego rather than from their spirit of love, there is nothing they can do about it until they recognize their ego. I behaved in atrocious ways before I knew I had an ego, but once I learned about it and that I have control over it, I began to choose how I reacted to things and to choose how I felt about things, as well. Realistically, I still do and say stupid things sometimes when I don’t realize I’m lost in my ego. When I do realize it, I can choose my actions and words, and I can choose to be happy. This means there also has to be a choice when it comes to guilt. Why would we choose to feel such a horrible emotion? How do I know we are choosing it when it sure does not feel like a choice we would actively make? For that answer, I remembered what Dr. Phil McGraw has to say about all of our behaviors. Here’s what I came up with.
            Maybe we don’t really want to let go of our guilt. Think about that for a moment. Dr. Phil says that we hang onto things because we get something from it. This is always true; always. He teaches that there is always a payoff for hanging onto to negative behavior and negative emotions. If there was no payoff we would let it go in a heartbeat. We have to consider how guilt is working for us. The one thing I can come up with is that guilt is how we keep from feeling like jerks. When we are feeling guilty about our actions or inactions, maybe there’s a little voice inside saying, I may not have done the right thing but at least I feel bad about it. Maybe that little voice makes us feel like we are just a little bit better people than we really feel like we are at that moment. It’s like a bit of hope or a tiny wish that we are not so bad after all.
            I just have to tell you this real quick because it amazes me every time it happens. I wrote that last paragraph last week and over the weekend I saw BrenĂ© Brown on Super Soul Sunday confirming what I wrote last week! Stuff like this happens all the time when you pose a question to the universe, God, the Creative Force of Love, or whatever you choose to call it. I know I have heard her say this before because I have seen that episode three or more times, so obviously I learned it from her. Anyway, here’s what she confirmed for me:
             BrenĂ© Brown says that the difference between guilt and shame is that when we feel guilt we say to ourselves I did something bad, but when we feel shame we say to ourselves I am bad. Guilt helps us to hold shame at arm’s length. What I have to remind myself when I feel ashamed or guilty is that there is no shame in not being able to entertain my 26-year-old child every minute of every day. I want to, but I can’t do it. There is no shame in wanting time for ourselves or for not having enough energy to do it all.
            The thing is, no matter what we do or don’t do, we are not bad people. We can’t force ourselves to be anything other than the way we are, just like Tolle said. We are not weak, lazy or selfish. We are human beings doing the very best we can every moment of our lives. Even when we know we are choosing the easy way in the moment, we are doing our very best. Has there ever been a time in your life when you said something to yourself like, I know I should do this, but I just can’t right now. I know I should not say this, but I just have to right now? Then you feel bad afterward. Guess what? That was the very best you could do. How do I know this? Because it’s what you did. We never do less than our best, even when it feels like we are choosing to do less. That does not mean we should not constantly strive to be better in each situation, but what good is guilt really? Even when you hear that little at least I feel bad voice that tries to keep shame away, you still feel like a jerk, right? So what good was it? Whoever said that guilt is a useless emotion was absolutely right. 
            At one point in my life, I thought guilt was a motivating factor for doing the right thing, but my uncle cured me of that thought. I once had a conversation with my uncle in which I tried to guilt him into committing to doing something he was not willing to commit to. He said he might do it, but he could not promise to do it. I pulled out my guilt card by telling him he would feel bad later if he didn’t do it, but he looked me straight in the eye and said, “You can’t guilt me.” As soon as the words were out of his mouth I knew he was telling me the truth. I immediately thought about how frightening that was. Imagine not ever feeling guilty about anything. It seemed pretty ominous to me at the time. I wondered how someone would stop themselves from doing bad things. But later I thought about how liberating it must be. Imagine that! You could do what you want, be who you want to be, live your life the way you want to live it, without ever having to feel bad about it. Imagine not feeling the need to answer to anyone. Isn’t that how we are supposed to live our lives? They are our lives, after all. However, we are responsible for our children and, to a degree, we are responsible for how they turn out. So if there is no guilt for not doing what we think we should do, how will we make ourselves do the right thing?  
            The answer is love. You love your kids so you don’t have to guilt yourself into doing the right thing. You do what you can when you can because you love them. Yes, sometimes your ego gets in the way and you are impatient. Yes, sometimes you are tired or overwhelmed or simply don’t feel like it at that moment. Even in those times, you are a human who loves your child. That is all they need to know. That is all you need to remember when guilt creeps in. I believe that if I love this child with all my heart and soul, I can’t go wrong, even if my ego makes me feel like I have gone wrong. If I keep my heart open in love for my child and he knows that even in my impatience he is loved by me, we will both be just fine. Knowing that, what is there to feel guilty about? As long as I have my ego, guilt will probably come. But when it does I will keep reminding myself that I am doing the best I can and my child is unconditionally loved. I’ll let you know how it goes.

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