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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, February 21, 2014

Excruciating, Exquisite Life

“Friendship is born at that moment when one man says to another, “What! You, too? I thought that no one but myself…”” ~ C. S. Lewis

            As I drove Joshua to his day program one morning recently I was looking at all the snow piled up along the sides of the roads, sidewalks and especially the big piles alongside the driveways. Where I live we have not seen this much snow piled up in quite a while; at least not for this extended amount of time. I was struck by the yin and yang of the snow. It is exquisitely beautiful in some spots and excruciatingly dull in others. It shines brightly and sparkles in the sunlight along the sides of the roads and in the yards where it is all white and pure. In the street, it is muddy and slushy and ugly, where it has been driven over time and again by dirty tires. During this drive, I saw people shoveling out of driveways and snowplows clearing the snow off of parking lots. One woman was shoveling a lengthy driveway with a look of misery on her face. I felt her agony as I remembered helping my husband shovel our own lengthy driveway when our snow blower stopped working. I was reminded of the help we get from our community. On my street, some of the people with snow blowers and plows help some of the people who don’t have them. It is a beautiful thing to see neighbors helping neighbors. Indeed, it is a beautiful thing to do.
            Looking closely at snow you can see its true brilliance. Every flake is unique, intricate and beautiful, just like people. Sure, we can get muddy and ugly sometimes, but deep down we are pure and brilliant. Challenges pile up in our lives just like the snow this winter. People, including ourselves, drive through our hearts and minds with dirty tires. Unexpected emotional storms arise, laying down fresh challenges to handle. If we keep letting the challenges pile up, if we don’t reach out for emotional support we will forever be trudging through the slush.

            In my attempts to find out if Joshua was on the autism spectrum, we were referred to a couple of different doctors and eventually ended up at a psychiatrist’s office. We were told this doctor would be well equipped to diagnose him one way or the other. She turned out to know even less about autism than I did through the extensive reading I had been doing on the subject. She told me that the fact that he hugs his parents and grandparents meant that he definitely was not autistic. I should have suggested she read the material I had been reading, but I was too timid to do that! This doctor wanted to talk about my feelings of having a child with disabilities. I kept asking her about autism and she kept asking me about my feelings. I stopped taking Josh to see her after about three visits because I did not want to talk to a stranger about my feelings. Plus, insurance was only paying half of the bill; and do you know how much psychiatrists charge per hour? Holy big bucks, Batman!
            Some doctors and other organizations kept telling me about support groups. I never wanted to go to a support group and sit around feeling sorry for myself with a bunch of strangers. Feeling sorry for myself was reserved for my alone time. I was not too keen on hearing their problems either. I had enough of my own. I was tough on the outside. I could handle all of this on the outside. My mother recently said to me that she never knew the extent of my inner struggles all those years until I started writing this blog. My façade worked very well. I think I even had myself convinced sometimes. I let it all pile up inside, hiding my feelings and frustrations in an attempt to look like I knew what I was doing and could handle it all. I could always talk to my husband. In fact, we have had many woe-is-me conversations.

“It is not the critic who counts;
not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.

The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs, who comes short again and again, because there is no effort without error and shortcoming;
but who does actually strive to do the deeds;
who knows great enthusiasms, the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end, the triumph of high achievement, and who at the worst, if he fails, at least, fails while daring greatly.” ~ Theodore Roosevelt

            I can’t read that quote while thinking of my friends, old and new, who have children with special needs, and not get teary eyed! I now have many friends who can relate to my life. There are two couples who have children with Down’s syndrome that have been a great support for me and I hope I have been for them! Until recently I did not share with them some of the messier aspects of parenting Joshua. I did not want to be seen as vulnerable and I did not want them to see my shame; MY shame for being unable to teach him, not his. And I certainly did not share some of my deepest darkest feelings with anyone but my best friends; even that came later. To my shock, what I found once I did start to talk about these things is that I am not alone. Even in my deepest darkest feelings, the ones I thought no other human could relate to, one of my best friends said she felt exactly the same way I did and at times she had the same shame riddled thoughts I had. I won’t be sharing those with you today, however.

            My sorrow over having to shave my adult child’s face, bathe him, pick his nose for him and my fear for his future are many of the same things my friends feel sorrow over with their children. It is the excruciating slush we share. Their kids are capable of doing some of these things for themselves, but even so they don’t judge me or make me feel ashamed because mine can’t. They get it. They know I am trying my best even when my best is not very good because they understand the constant struggle. They know if I could do better I would and I know it about them, too, because we live with similar challenges every day. Most parents of children with special needs are in a club we did not sign up to become members of, and no one else, not our own parents or any other parent who only has typical children will ever understand the challenges as profoundly as we do. You can’t understand it as we do unless you shovel this slush every single day in every single way that we do. Still, there are parents who did sign up for this club; the foster parents and the adoptive parents lined up, shovels in hand, ready for duty. For those parents, I have a special admiration. They have a kind of integrity and a strength I may never achieve. This club is filled with the parents who have learned, in a hard way, why it is never okay to judge and shame another parent, no matter what. While we and all of society can see the exquisite snowflakes within our families, we know the excruciating slush in our own hearts and minds. We don’t like it, but we know where it comes from and we know sometimes that slush is all we can muster.
            I regret not sharing more with my friends sooner because when you are vulnerable with the people you love and who love you, your bond becomes even stronger. You can become a stronger person through vulnerability when you share your stories, your concerns, your issues and your feelings with other people. Even people you may not know but who have had similar experiences to yours share a common bond with you. Sometimes they can offer you a solution you never thought of. Sometimes not. They can and will offer you their complete and total understanding of your deepest hurt, frustrations, and your joy. They will offer you true compassion. And you will feel their compassion deep down to your bones because you know they get it.

“Compassion is a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.” ~ Pema Chödrön

            For those of you who have young children and are new to this special world of needs, please don’t hesitate to befriend other parents with special children. Seek out parents with young children, but also seek out parents who have been in this special world for a while. They can help to alleviate some of your fears and help you to relax a bit with their insights. That is exactly what my best friends did for me very quickly in our relationships. Sharing all of your feelings and frustrations with a spouse is important, but may not always be helpful, however. Men and women with different personalities and different strengths and weaknesses may not always be able to relate to one another’s feelings. If one spouse is strong in one area they may not be able to understand why the other spouse struggles in that area. Listen to your spouse and try to see things from their perspective. It is easy for marriages to fall apart when you are not communicating and sharing. Keep in mind that it is helpful for men to share with other men and women to share with other women because there are gender issues related to parenting children with special needs. A man might feel a profound loss when his son can’t play sports and his wife may not be able to relate to that type of loss, but that is just one example. Conversely, there are issues unique to women’s feelings as well.
            I did not understand the importance of sharing with people who truly get it until I watched an episode of Parenthood on NBC. It was the one where two parents find out their son has Asperger’s Syndrome. Upon finding out the diagnosis, they embraced each other in sorrow and fear. We did not hear the words they said to each other, but we saw the looks on their faces as the husband told the wife the news from the doctor. It brought back the feelings of getting my son’s first diagnosis because it was exactly what I was witnessing on the television screen. Their faces and their embrace brought it flooding back to me in one instant. That is when I knew it had been a mistake to keep my feelings and insecurities hidden all those years. Seeing their raw pain – even while knowing it was a fictional story – made me realize there is a community out there who gets it, just as me and my friends get it. Not only that but even with the painful feelings flooding back to me after all these years, it was healing to witness it in someone else; to feel their pain and know it as my own. I later discovered that people on the staff of that show have children with autism and Asperger’s. I was relieved to find that out, because up to that point I was skeptical that they could keep it real and depict Asperger’s in a realistic way. They have done it immensely well!
            Dare to share your feelings and your stories with others. Just like with the never ending piles of snow in the driveway, your family, friends and even strangers can help you dig your way out of the fear, loneliness and frustrations you encounter on this journey through life. Sharing your stories with one another will help you to know that we all struggle with the same things and we rejoice over the same strange, silly, beautiful things, too. Those who you confide in will understand the absolute, heart swelling, exquisite joy of your ten-year-old signing I love you for the first time. They will understand your elation over the things most parents take for granted such as the joy and relief you feel when your child finally can wipe their own bottom! We all need to share with each other more and to shine more light on the intricate, sometimes dirty nature of our children’s disabilities. Otherwise, our drive through life will remain focused on the dirty, slushy street, never looking to the side of the road where the pure, delicate flakes are sparkling.
            I have learned this lesson over time and Brené Brown shares this wisdom at the very beginning of her book, Daring Greatly:

Vulnerability can be an excruciating emotion.
When shared, vulnerability is exquisite.

            Until next time, you have my love and support. 

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