“We must let go of the life we had planned so as to have the life that is waiting for us”-Joseph Campbell
Conductor: “This train is going to the first level of Acceptance-‘After the Diagnosis’. Everyone here has an open ticket and the flexibility to make as many stops along the way as you desire. You are also welcome to revisit some places whenever you like. Take as much or as little time as you need.”
Michele: “Blake, do you have the tickets?”
Blake: “Yes, they are right here. But, I am going to want to go off on my own a little bit.”
Michele: “That’s fine. I have my own exploring to do as well.”
Conductor: “You will find a guidebook in the seat pocket in front of you. We have a long journey ahead of us with many stops along the way. Some of you may wish to stay on the train and rest at certain points as your fellow passengers tour sites. There will be places for photo opportunities, marked by the camera symbol, and beautiful overlooks with clear views to acceptance. These are noted on your maps by the word ‘Hallelujah’.
There will be tour guides, wearing green vests, who will be available to assist you particularly at typically difficult areas of terrain. These areas are marked by the black diamonds on your tour maps. They require extra self-care and compassion.
We are committed to allowing you to plan your own unique itinerary. However, we have found that you have to use all of your senses and feel your way through some of these places and spaces, rather than just trying to intellectually process your feelings. Visiting and discovering the different emotional terrain is essential to moving forward on your continued journey of acceptance.
We have suggested itineraries for all travelers with different inclinations and backgrounds. Some tours include: adventures, religious pathways, haunted emotional places, group tours and survival tours. We have all-inclusive packages as well as al a carte options. Remember that ultimately this is your experience. You may have company along the way, and choose your own path, but no one can experience the journey for you.
Unfortunately, sometimes people stray into high-risk areas– leading to emotional instability. We suggest you bypass these experiences if at all possible. Occasionally tours have powerful vortexes that can pull you down into them without you realizing it. Wherever possible these areas are noted on your maps by the swirling icon. The further you go into these vortexes the more difficult and confusing the terrain becomes. We will equip you with several resources and alternate routes to help you find your way back if you find yourself on one of these paths.
When you reach the first level of acceptance the terrain often levels out and your luggage becomes lighter and more manageable. You will still have ongoing journeys that require your continued courage and acceptance but you will see that it’s easier to breathe, see, and plan future journeys from here.
For our more seasoned travelers you may wish to ask about our ‘path of least resistance’ tours. This tour requires that you have experienced and previously completed at least four emotional tours. They are particularly appealing to passengers who wish to fulfill their continuing education requirements. If you have visited certain areas before, but are seeking further cleansing of old emotional habits on the way to clarity, this may be the tour for you.
Again welcome aboard, and remember we are always here to answer your questions and to offer you a place of rest whenever you need it. Please see our respite coordinator for details. There are many people around you that you may wish to meet or partner with as well. Everyone’s journey is unique, but it often helps to hear about what fellow passengers are experiencing on his or her journey.”
Michele: “Now let’s see what this guidebook has to say. We’re gonna need some help.”
Why the journey to acceptance?
As you allow yourself to grieve and let go of your pain, your mind and heart have an opportunity to begin to move to a place of acceptance. Having acceptance about your child’s condition helps you develop a more peaceful place within yourself. New solutions emerge that you couldn’t see when you were distracted, scrambling around, or spending your time and energy trying to save your child from the effects of CP (a normal and understandable coping mechanism.) It is easy to get stuck when you keep revisiting what has happened and attaching the same old thoughts and ideas to those events. You may find yourself dwelling on feelings of guilt, injustice, or regret. When this happens consider new ways of thinking about your child’s diagnosis and take some time to give new ideas a chance. In time, you may see that your feelings change as you challenge your old ideas with new thoughts.
Common emotional terrain you may experience along the way:
-Feeling overwhelmed and underprepared
-An unceasing obsession with trying to “fix” your child
-Grieving about unfulfilled expectations
-Blaming yourself or others for what has happened
-Feeling sorry for yourself and your child
-Feeling angry at yourself and envious of other people
-Denial or distancing yourself from the diagnosis and your child
-Scrambling to find, fund, and try any and every possible intervention for your child
-Fear about the present and the future
-Obsessing about the past, present, future
-Desire to find meaning in your child’s condition
-Having past traumas and related feelings resurface
-Feelings of gratitude about life and restructuring what is important to you
-Changes in how you relate to people-This can be positive!
*Acceptance is an ongoing process. Many of these feelings may stay a while with you or leave and resurface from time to time. As different issues arise with your child they may trigger old feelings and thoughts that you need to process again (hence the reference to continuing education credits).
Every person is unique in his or her histories, emotions, and perspectives. Just because another person seems to be having an easier time than you processing his/her emotions doesn’t mean you are doing something wrong. Each person’s response to hearing that someone they love has CP will vary in the range of emotions, timing and triggers, as well as how the individual will cope with various feelings. There will be different periods of grief for each person as they move further along. Grieving is a stepping-stone to acceptance.
Watch out for times when you are struggling too much emotionally and don’t be afraid to admit to these struggles. Know that whatever you do to improve your ability to handle your circumstances will help your child and family as well. It’s important to reach out for help, and sometimes this means contacting a professional. There is no shame in this.
Balancing acceptance with persistence:
As a parent it is normal to feel compelled to do whatever you possibly can to help your child get ahead developmentally. Keep in mind that as much as you push yourself to design the treatment plan for your child, your child will be putting forth the effort to participate and experience the plan you develop. As you come closer to acceptance, you will become better attuned to your child’s rhythms and when it may or may not be appropriate to push him/her (and perhaps yourself and your family).
It may be hard to see how to reconcile acceptance with the anxiety that is so common for parents who feel like they are racing against time. This is particularly difficult when children are in their very early neurological development, when the child’s brain is often most receptive to change, and you often have an unknown or very unclear developmental future. You keep pushing yourself and your child, and wondering about possibilities for change; perhaps several times each day. It often feels like an ongoing tug-of-war inside—with so many emotions and complex roles to play. You become a parent with many hats including therapy assistant, advocate, and researcher. Often parents are fighting for their children out of love but also out of pain, guilt, and fear.
Perhaps approach thinking about your child’s development from the standpoint of supporting her development in her own time, rather than trying to chase after a typical development chart or someone’s idea of what one should like for your child. *You may have goals or guide posts, but don’t become consumed with meeting them by a certain time. Doing so may lead to your disappointment and your child may perceive your feelings as her failure.
Know that coming to meet your child and accepting her wherever she is developmentally lets her know and feel that she is ok. There is no greater gift, therapy or intervention that you can give your child than unconditional love. Making decisions from a place of acceptance while simultaneously fighting to help your child is a powerful combination.
*I wish to credit this idea to Anat Baniel who refers to this as “holding goals loosely”.
It is our hope that you never lose your balance as you embark on this journey. If you do, remember you won’t be the first one to feel lost or discouraged. There are plenty of parents who have fallen and gotten up. They make the commitment to move ahead and you can do this as well.
Michele: “Well, we are almost at the first stop. Do you want to join me and have a look around?”
Blake: “It’s not going to be easy but we might as well get started.”
Some Personal Notes:
I have my days and sometimes longer stretches where my emotions about Maya are right under the surface. They may be related to my own guilt, my impatience to see her get ahead, or my fear that I may not being doing enough for her. The most important thing I have learned to do is to not talk myself into feeling worse. I allow my feelings to come up and out of me while I busy my mind with another activity. If a particular feeling keeps surfacing it’s usually because I am having trouble accepting an aspect of her condition that requires further attention and examination and not necessarily more effort to help Maya.
At times, all I could do at a given moment or day was to acknowledge that I was having difficulty accepting what I was feeling and the obstacles we were facing at that time. Other times I have had the energy to explore why I was having difficulty with a particular issue. What was I afraid of? Could I fix it? If so, how? Could my husband or someone else I am close to help talk me through it? Did I need a professional to guide me?
One strategy that I have found helpful has been to set aside time to be with Maya without thinking and evaluating her progress. I have found that when my mind takes a break, I connect with her in a different way and new solutions spontaneously emerge.
The following is a quote from Anat Baniel speaking about “connecting with” versus trying to “fix” the child. You may find thinking about your child in this way helpful regardless of whether you use her approach during the course of your journey.
“The whole ABM method and approach is based on the understanding that to reach goals we need to pull back from the desire and direct attempts to fix the child and try to ‘make’ them do what they can’t …that actually backing off from these attempts, connecting with a child, are by far much more potent and much more harmonious with the way brains grow and find solutions, even in the face of great challenges. The shifting from the fixing approach to the connecting approach is a powerful way, and in my experience and understanding, a superior and more effective way for giving the child better outcomes. That shift is internal to us and requires our own internal evolution and has nothing to do with the child even though it holds potentially great consequences for the child.”
The longer we are on this path, the more I have seen the truth and magic in Anat Baniel’s approach. I know some parents say that it was their willingness to push their child beyond reason and prognosis that made their child with disabilities so successful later in life. I think there is an important place for this type of drive in raising a child with special needs. However, by pulling back occasionally from trying to “fix” our child’s body, we began to notice, appreciate and even celebrate Maya’s many seemingly small victories. These moments have brought Blake and I both great joy and have helped to build Maya’s confidence and propel her forward. Despite the ongoing struggles she faces, I believe our patience with Maya’s development has helped her to find joy in pushing herself ahead rather than feeling driven by a desire please one of us or her therapists.
For us, peace and progress have come from finding acceptance and combining it with persistence and an open mind rather than complacency or forcing Maya down a certain path. When you act from acceptance you approach your child with love, but when your planning comes from unrecognized fear, you risk transferring that feeling and confusion to your child.
Over time tough topics have been easier to think about and talk about as I have gained more acceptance about Maya’s cerebral palsy. This is particularly true when I speak to Maya about her condition. I also have realized that sometimes she may be asking a question about her challenges with pure curiosity (rather than anxiety), but I bring my own anxiety to the table thinking that she is thinking and feeling what I am. By setting my anxiety aside, she has room to generate innovative and creative solutions to her problems and limitations.
This isn’t an easy ride. Your resilience, persistence, and faith will all be tested. In an effort to come to a new place of acceptance, you will face and transform your own pain, prejudices, ideas about yourself and the world, and how you relate to other people. While daunting, it is also an opportunity for your own healing.
Don’t ever feel you are alone in what you are feeling or thinking. One of us has been there before you. At times I have found stamina and comfort in knowing that another parent has traveled the same emotional roads before me. I imagine myself thinking about these parents, and gathering strength for my day knowing that they made it through the valley, and found life and happiness on the other side. If they could do it, surely we can too.
Copyright 2012, CP Daily Living, Michele Shusterman, all rights reserved.
Some article about acceptance written by dads of kids with special needs:
The following book review/personal account for “Far From the Tree” offers honest and insightful remarks about the journey to acceptance from a father with a teenage son who has autism. We may have children with different challenges, but special needs parents often move through similar emotional stages and phases along the way:
Here is an article written by a journalist whose son has Asperger’s syndrome. It’s well written, honest, and intriguing (the story documents visits to two former US Presidents!). Plus, it’s written by a father and male voices are often hard to come by for these subjects: