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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, May 8, 2015

Happy Mother's Day?

            Mother's Day is a day to celebrate all the wonderful things we love about our mothers, but some moms may not have such a happy Mother’s Day this year or any year. There may be internal struggles of guilt and frustration which Mother’s Day cannot take away. I have written about this topic before in my post called Mother Guilt, but this is something many, many parents experience with their children and so I want to address it again. The issue is keeping your child or adult entertained. They have no friends; at least not in the traditional sense of the word. They do not have the capacity to find entertainment for themselves or to create opportunities to entertain themselves. It is one of the most difficult things to endure for the person with disabilities and for the caregivers, especially once the child is no longer in school. There is no job to go to every day to keep them occupied. For many people with intellectual disabilities the television, DVDs, and music are the only things available to them for entertainment. Some people are able to access the internet to find games and groups to interact with, but for individuals with lower I.Q.s and communication issues, the TV and music must suffice. Even when they can access other resources, it is never enough so boredom and loneliness set in, once again.
        Some families find that their adult children have become so accustomed to being at home with nothing to do that when there is something to do, they won’t leave the house. Parents in this situation find it difficult to have any kind of social life away from their child. Mothers and fathers long to experience a date night, but are unable to convince their child that an activity with a group of their peers would be fun. Many mothers never get free time to focus on themselves or to do activities they want to do. It feels like they are imprisoned in their home with little opportunity for escape. 
           There is another kind of imprisonment for parents whose children can never find enough to do outside of the home. It is heart-wrenching for me to see my son bored, flipping through the DVDs that he has watched a million times, not being able to choose one because none of them are exciting anymore. Even new ones don’t have the appeal they used to have. They get old too fast when that is your main activity most of the time. My son goes to a day program three days each week and does other activities with our local park district’s special recreation program. That equals 21 to 30 hours of time away from the house for my son, plus another 24 hour period at his grandparent’s house every other week. This is time for me to do necessary things around the house without him following me around and time to do things that I want to do for me. I cannot ever express how grateful we both are for these programs and for family support. I honestly do not know how we would manage without them. They truly are a gift from God. That said, there is another 80 to 90 waking hours to fill each week. Even if you take some time to do household chores with your child, that’s still a lot of hours to fill. I can imagine it is lonely, frustrating, and boring as hell to be a person with disabilities; a prison all its own. That is why we moms feel the guilt, frustration, and sympathy for our kids.
            At times, I want to be his friend and his playmate, but he does not want to be mine. I am his mom and I don’t blame him for not wanting to hang out with me. We do not share the same interests, so even when he is willing to participate in the games I plan I can’t do it for very long because I am a 49-year-old woman who has no desire to play these games. I am only doing it to give him something to do. Then I feel bad for not enjoying it and for not trying harder. When I try really, really hard and am very enthusiastic I end up feeling like a fool because he does not share my enthusiasm. He looks at me like I am a crazy person and waves his hand – his way of saying I want to go somewhere. My son loves to go places, but where is there to go? It’s like trying to be an activities director on a cruise ship in the middle of the ocean with no resources. We grocery shop and if we are lucky we will need items from other stores so that we can spend extra time away from home and the TV. I can think of several things I can do around the house and try to get him to do them with me, but he never wants to. He will do things with others that he won’t do with me. I am Mom, after all, not some exciting person his own age. I go outside to plant flowers or pull weeds and he comes along side me as I work and waves bye-bye. My heart sinks… again. As I do my housecleaning, bye-bye. Heart sink. I try to study up on various housing options for people with disabilities so that when I am gone he has some place loving and accepting to live. Bye-bye? No, Dear One, there is no place to go today. Change movies? No, My Love, we just changed them a half hour ago. I am the person he expects to free him from his prison and it feels like I am failing him.
            I am as patient and as understanding as I can be, but I can never make up for everything that he has to endure in his life. It feels like we are both being punished for something unknown. I know it’s not true and that it is my ego that feels that way. This is a problem without a solution that so many parents and children are having. Feeling guilty over this issue comes and goes, but feeling sympathy for him never goes away. It is heartbreak I have no answer for. Feeling guilty about this is slowly starting to fade because I know I did not create this problem and I would fix it if I could. I love him and do what I can for him. A celebration of Mother’s Day will be a wonderful distraction for me and Joshua, but I know so many other moms will not be able to get away from the feeling of being unjustly imprisoned. Mother's Day will probably only make the feeling worse for many moms dealing with these issues. If you are one of those moms, my heart is with you. I know how you feel. 
            Acceptance is the only way to get any relief from this feeling of helplessness, but it is hard to accept the suffering of your child. It is really, really hard! What else can we do? My Friends, I have no solution for this problem other than to say what I said in Mother Guilt: Just keep loving them and doing your best, knowing that in every moment you are always doing your best even if it does not feel like it. I hope I have not made you feel any worse about your situation than you already did. I just thought that if you are anything at all like me you will feel just the tiniest bit better to know that somewhere out here in the world is a mom feeling just like you on any given day. I sincerely hope you will have a Very Happy Mother’s Day.

Here’s someone else’s blog post to let you know, once again, that you are not alone and hopefully this one will put a smile on your face: Job Offer Letter I'd Give New Autism Parents

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