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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 22, 2015

Memories

            Looking back on my life with my son I can clearly see things I wish I had done differently, things I wish I had understood differently, and the many fears I had in life. I wish I had appreciated the little things more. The problem is that most people don’t know that those little things are actually the big things. When you look back over decades of photos is when you see how big they were. You retell the story when you look back. You can see how everything is flipped around and how the big was really small and the small was really big. My son had hair on his head that stood straight up all the time. I put gel on it to get it to lie down, but it would not. I was constantly brushing it to the side with my hand to get it to lie down. I complained about how it always stood straight up no matter what I did. Guess which pictures are most precious to me now? They are the ones where his hair is sticking straight up!
He was such a doll. I don’t know why I cared about it so much, or why I did not see how damn cute it was! In many of the pictures, it looks as if the wind is blowing it to the side, even though we are indoors because it is not completely down or completely up due to my efforts to get it down. I was crazy, obviously. Anyway, here is word you may have never heard or read:

Anakephalaiosasthai
(Possibly pronounced ana – ka – fay – lo – ay – sas – tie, but do not hold me to it!)

            That is an actual word, rather a combination of two words. It is a Greek word and it can mean several things: everything in heaven and on earth, to sum up, to bring unity to, or to retell. I heard of this word through Rob Bell. He does a weekly podcast he calls the RobCast. He spoke of this word in podcast number 16, named 19 Letters! Click the name to hear it. He posted a picture of this word on his Instagram and he asked people to post a photo of them anakephalaiosasthai-ing. That is probably not a word, but you understand what he means. By the way, at the end of this post, you will see some funny photos of me and Joshua. I was trying to take a selfie of us with our new T-shirts and the results are hilarious!
            Anakephalaiosasthai is what I do with this blog. I retell our story and I sum it up. I wish I had someone do that for me when I was a young mother trying to figure out how to cope with this new kind of life I had not anticipated. Well, actually I did have people who did that for me, but it took many years and a few books to put all of the pieces of the puzzle together. The first person helped me to begin to seeing the world and my life a bit differently as I was reading HAPPINESS IS A CHOICE. That person was author Barry Neil Kaufman. Then, some time later I read LIFE STRATEGIES, by Dr. Philip McGraw. I did the work, too. Dr. Phil gives assignments in that book and I did all of them. Wow! That was a real eye opener. He taught me how to look back at my life with clear eyes and see how each person and event impacted the woman I am today. Realizations were popping up left and right for me when I did that. There was some blame going on, but I also had to take responsibility. And then, some time after that, I read A NEW EARTH: AWAKENING TO YOUR LIFE’S PURPOSE, by Eckhart Tolle. Reading that book gave me a clear understanding of my role in my life. I had to take total responsibility at that point because it made me see there was no one impacting my life, but me. Looking back at my life and summing it up I can see that almost all of the decisions I made were fear based, including the ones I thought were love based.
            So with every new book I read, I remembered my life and retold my stories. Each book brought me closer and closer to a new way of seeing my life and my child. Each book showed me, with greater and greater detail, the fear I held inside along the way and how that fear shaped my thinking and my attitude. They showed me the impact my fears had on all of my decisions, on my child, and on all of my relationships. I was able to retell the story of my life with more honesty because the veil of my ego was removed. I saw all of the ugliness I brought to my life without my ego glossing over it. I could clearly see my fears and the fears of others. When you can do that your life changes because you can see where your changes need to be made. You can see the lessons your life is trying to teach you. Most importantly, you can start to retell your stories as they happen.
   Right after I listened to the RobCast about anakephalaiosasthai, I listened to a sermon by Rev. Ed Bacon called LET LOVE FLUSH THE FEAR OUT OF YOUR SYSTEM. Click the title to hear it. He spoke about the ways we are taught to fear, but it made me think about our children with disabilities and all of the fear that surrounds them. He spoke about letting go of our fears and becoming a place where people feel loved and safe when they are around us. He said we can become “a place where love abounds.” It is our purpose to move from fear to love in our lifetime. Fear is the barrier keeping us from a life of complete love. How do we humans, who are so accustomed to living in fear and allowing fear to control our actions, all of a sudden start overcoming it? The first step is to become familiar with it and to recognize it as soon as we feel it.
            Keeping your child in mind, I want you to think about your life and your attitude about your life. Think about your feelings towards your child and your feelings about their disability. Think about the decisions you have made, the things you have said, and the things you have done. Were you motivated by fear? Any action you took that was negative, harsh, manipulative, or harmful was motivated by fear. How did you feel at the time? Get in touch with your fear, so you will recognize it as soon as it comes up. Notice how it feels in your body. Notice what it does to your mind; the thoughts that arise when you feel fear.
            Now put yourself in the place of your child. Imagine being them. How scary is it? What do you think causes fear to arise in your child? What stories might they tell in their mind about your actions and reactions toward them? Think about what their life would be like if their caregiver – you – did not live in fear. Imagine how it might free them to get free of their own fears. Rev. Bacon says we are meant to “become healing, whole making agents of God’s love in any anxious setting or transaction.” Imagine recognizing your fear as soon as you feel it and deciding to overcome it in that moment so that your child can know they are in a safe place with you. You can be their safe harbor. You can be the place where they can rid themselves of anxiety and relax into your love. All you have to do is recognize the fear and retell the story from a place of love. To quote Rob Bell, you say to yourself, “Yes, this is a hell on earth. Yes, this is awful and difficult, and yet right now I’m going to trust that it won’t last forever and at some point I’m going to get through this. And I’m going to be so grateful that I got through this. What you’re already doing in that moment is you’re anakephalaiosasthai-ing that thing.”
            One more thought before I close: Memorial Day is a time when many people remember their lost loved ones. Often, when remembering them, we retell the story in a softer way than we would if they were still with us. Being separated by death can cause us to realize the problems we had with someone were not as bad as we thought when they were alive. We rethink and retell the story of that person as we realize the impermanence of life. Maybe we wish there was a second chance to say things we did not say. Maybe we wish we had not been quite so petty about little things. Once again, as we do when going through old photographs, we see that the things we thought were big were actually very, very small. After someone has passed we are able to look back at our relationship with them more honestly and see our own mistakes; mistakes we could not take responsibility for when they were alive. Suddenly our ego can let go of pride. We are able to see the fear we brought to the relationship and how the fear impacted our interactions. Sometimes the person we lost was not easy to love. This person treated people badly, picked fights, had to always be right, and was self-centered. Now that they are not here to defend their ego or to fight with us, we can see that they were vulnerable and scared. We can see that they were desperate for love and afraid they would never receive it. We can see how fear of rejection motivated them to act the way they acted. We can see that they could not receive love because their self-worth would not allow them to believe they were worthy of it. They acted as if they did not care about others because they were protecting their heart. Once this person is gone from our life, our ego no longer has a reason to defend itself and we can clearly see their fear. We can also see the ways we chose not to show our love for them. They made it difficult, and maybe we did not see their vulnerability at the time, but we can now see areas where we could have reached out with love toward them. We can look back and see times they tried to reach out to us, but our prideful ego blocked their efforts. Suddenly their actions and words make more sense. Looking honestly at our fears and recognizing their fears, we can retell their story, healing the relationship within our own mind and heart.
            Michael Singer wrote in THE UNTETHERED SOUL that if death were to come knocking on your door you would say please give me one more week, one more day. It would say back to you, look at all the weeks and days I already gave you, what did you do with them? That is a sobering thought. What did I do with them? Did I love as freely as I could have? Did I spend them working at the expense of time with my family? Did I take much from them and only give a little in return? Did I worry too much about cleaning the house rather than spending time with my child? Did I live my life in fear? Start recognizing fear now, in yourself and in others.
            The single most important thing you can do in your life is to overcome your fears and show love to the people you love. We all think we have some big purpose in life, some great achievement we need to do for the world, but our one and only purpose is to learn to love. Love unconditionally; love freely; love with inhibition; love without fear. That is your purpose in life. If you can let love flush the fear out of your system you have achieved your purpose in life and you have completed a great achievement for the world. I believe Satan is fear and God is love. Kick Satan to the curb, anakephalaiosasthai your memories and your current events, and live in the abounding love of God. Happy Memorial Day! Now, grab some tissues because these photos are so funny you may cry!



Opening Doors Here is a way one young man decided to retell his story. 


I have a Facebook page called Love Button Worthy! It features photos, blogs, quotes, and other content full of positivity and inspiration. Click here to check it out. Please like the page if it suits you and don’t forget to invite your friends to like it, too.  

Click here for books I love. I hope this blog helps you to create a more peaceful life. Keep in touch by the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Comment by using the comment link below or write to me with your comments and questions at mindchange4all@gmail.com  I look forward to hearing from you!

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

I have a Facebook page called Love Button Worthy! It features photos, blogs, quotes, and other content full of positivity and inspiration. Click here to check it out. Please like the page if it suits you and don’t forget to invite your friends to like it, too.  


Click here for books I love. I hope this blog helps you to create a more peaceful life. Keep in touch by the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Comment by using the comment link below or write to me with your comments and questions at mindchange4all@gmail.com  I look forward to hearing from you!