Before your first child is born (or adopted) you start to ruminate about typical things: baby clothes, diapers, bottles or breast, maternity/paternity leave, day care, pediatricians, and all the stuff you need to buy. You may realize that your social life will be impacted: fewer movie nights, fewer nights out on the town, fewer restaurants. Very few parents consider the reality of how their lives will change if the child is born with some sort of challenge (e.g. physical, psychiatric, psychological, genetic, etc.). We all say, “All we want is a healthy baby.” Do we really prepare ourselves for the possibility of not having a healthy baby?
Many parents of children on the ASD spectrum, born with genetic or physical abnormalities, or neurological problems, experience an upheaval of their lives they were never prepared for nor could they ever imagine. These children are wildly… inconvenient.
To give you an idea of what inconvenient looks like (and this is just a small sampling):
- Endless appointments with many different doctors during the work day
- Constant worry you are missing something
- Emotional grieving over the child you thought you were going to have
- A child who needs constant supervision with someone who is highly experienced or trained to handle any possible situation (these kids are great at manifesting bizarre situations no one could ever predict)
- The end of the social calendar as you imagined it
- Loss of friends and connection with family
- Constant interaction with schools and specialists who may or may not be helping
- Never ending research hoping to find a new approach, new medical treatment or anything that might lessen your child’s suffering or relieve some of yours
- Loss of relationships in every aspect of your life due to lack of time and energy or the inability of the other people to cope with your situation
- Marital problems
- Emotional problems (having a child with issues of any sort is draining and incredibly emotional)
- Fear, fear and more fear of an uncertain future
- Coping with a child that may never leave home or be able to live independently
- Financial problems due to therapies and treatments that typically are not covered by insurance
- Guilt over not being able to afford or have the time or energy for the interventions one would like to provide for the child
When an inconvenient child comes into your life by whatever means (birth, adoption, fostering), your life changes forever. Your life, your relationships, and especially you, will never be the same. You will transform. How you will transform is to what I would like to bring attention.
Here is how I transformed (the very high level version). The stories about the kids would take volumes so let’s just focus on me.
When I first realized I had an extraordinary child, I believed I could and would do anything required to help my child thrive and possibly even fix my child. I had drive and seemingly endless energy. I felt optimistic and strong. I began the journey. Then, as the years passed and the progress was poor and more children came along with more issues, I began to become tired. Not tired like if I had a good night’s sleep I would feel refreshed. Tired like a constant state of being, a medical condition if you will.
School years started and then came the worry, fear and dread. I started comparing my experiences to other parents, and my experience was not measuring up…at all…not even close. I worried that I was not able to figure out the best path. I feared that my child’s suffering was really impacting him negatively. I dreaded that there was no real answer or help to be found for my children.
This state lasted a long time while I continued searching, trying, and praying. The rest of my life was not on hold, it ceased to exist. My children became my world. I don’t remember anything from 1997 until about 2007. No movies, no current events, no evenings out, no friends, and very little interaction with my spouse. I was very sad, lonely, and worried. I became sick.
Then came the awakening.
On yet another quest for help, someone asked me if I needed support. The notion shocked me. Me? Someone wanted to focus on me instead of the children? I think I forgot I was a person – independent and important. At first, I was hurt that someone thought I wasn’t good enough just as I was given my Herculean effort. I had no concept that this person saw me as exhausted and lost to myself. There was a deep down part of me that was crying for help, apparently it wasn’t loud enough for most people to hear. I could not even hear my own cries. This person did see me and understood that I needed support.
I accepted the help being offered (although is was initially a struggle and still can be in moments). The focus was on me and my reactions and struggles dealing with the children and my now unrecognizable life. I never chose any of this. I felt like a victim of a random crime. Why me? I deserved more. And I believed it would never end, and there was no way out of my personal hell.
This was not true, and is not true for anyone. I was not and am not a victim. I had choices. I just didn’t know that I was focusing on the wrong things.
Most of my attention was on what was wrong and the never ending problems. I never thought to redirect my attention to what was going right and the small successes that were there. I was energizing the negative. I had to learn how to energize the positive – no easy task when there is so much negative to distract you.
Yes, my children are inconvenient. They eat up all the available hours on my schedule. They are exhausting if I forget to take time for myself. They challenge me to work on my issues daily if not hourly. I am learning all of my triggers. When I react to the children, it is my opportunity to do my work to return to a peaceful, wise me. I can only do the best I can with the resources and knowledge I have at a particular moment in time. If I do that, I can feel at peace. If I struggle to find peace despite doing my best, then I need to look for some belief that is no longer serving me. If I have a belief that all my children should attend college, I might need to revisit that belief and its origin and decide if that is actually in line with my true values now.
We often find clients (and ourselves) to have beliefs that are driving frustration and angst. Beliefs are not true. They have been thought up by us typically in childhood based on our experiences as a child. Sometimes we adopt our parents beliefs, and sometimes we create beliefs that are completely the opposite of our parents, intentionally. It is important to look at these beliefs throughout our lives and decide if we want to continue to cling to these beliefs. Surprisingly, beliefs do not always serve us as adults. It is ok to let go of beliefs. Many people find this difficult, but I equate it to throwing out garbage. Just chuck it and move on.
A belief we often run into is that we must as parents make everything ok for our children. That might look like carrying the child through life. We do more than we should. We solve problems for the child. We do not ask much of the child because they are frail or not as capable as normal children. We insulate the child and try to make things as easy as possible for them. Seems noble. However, this is a mistake. Overdoing for any child is disempowering and lowers their self esteem.
So, what to do about the inconvenient child instead of feeling victimized by a seemingly hopeless situation:
- Energize the positive in your child and yourself – everyone has wonderful traits and abilities (take the focus off of what is ‘wrong’)
- Celebrate the forward movement and little successes
- Practice gratitude for all that you do have – a roof over your head, food, clothing, warmth, clean water, a caring friend, a cuddly pet, whatever you can come up with…
- Pat yourself on the back for doing your best regardless of the outcome (this is especially important because no one else will know to do this)
- Love yourself and care for yourself as you would want your children to do for themselves (model good self care)
- Spend time alone
- Spend time with friends and/or your partner
- Work outside the home – I don’t care how long or if it is volunteering (you must find a way to feel like you are contributing to mankind beyond your children or you will go nuts)
- Ask for help
- Seek support for yourself – the biggest shifts I have ever seen in children with special needs come when the parent does their own personal growth work
- Recognize your frustrations and triggers are just red flags which in reality are helpful indicators of what you need to work on (it is not a conspiracy on the part of the universe to drive you crazy or punish you)
- Reframe your inconvenient child as a gift from the universe
I often hear, “I love my child, but I do not like them.” If this is anyway true for you, please, recognize this as a cry for help from somewhere inside of you. You are not a bad parent. You have an inconvenient child and need to go to extraordinary measures to rise above it all to find your way to becoming more of who you really are. Someday you will look back and be incredibly grateful to your child and realize them for who they really are – your greatest teacher in life.