Becoming a parent does not mean that you automatically have all the answers. As any parent of a child with special needs knows, a diagnosis does not come with a label that reads handbook attached. One of my biggest concerns surrounding Brooklyn’s diagnosis has always been the fear of questions and of not knowing how answer them, and the thought of Cameron (brooklyn’s brother) asking me to explain things that I sometimes don’t even understand myself is terrifying. I begin each day with a simple prayer asking God to lead me through the day and to provide me with insight should I find myself in a situation that I just don’t think I can handle. I have played all kinds of scenarios in my head and have rehearsed what I would say if and when the questions come. Rehearsing what you might say to an adult is definitely different than the answers you would give to a child and especially when that child is your own. How much information is needed and how much can a child at seven really handle? The teacher in me has read almost every book out there on the subject and the parent in me has read almost every single blog or website I can find. The graduate student in me has focused on this as a part of my research and the parent in me has done everything I know how to do just to be prepared.
The funny thing is that every question from Cameron has been the result not of me and of my desire to share and help him understand, it has come from him. Cameron asks me questions in his own time and in his own way, and the fear that seems to have a firm grip on my body at the very thought of handling myself in the right manner and with the right words is replaced with love, with honesty and with genuine conversation. When Cameron asks me questions the conversation is natural and the words just flow. Cameron has taught me that kids just have this amazing ability to let adults know what they need at exactly the time that they need it the most.
Of course I am making this sound a lot easier said than done and having a conversation with your child (regardless of the age) about why your other child/children can’t walk, talk, or play is one of the most heartbreaking and hardest things to do. Hearing your child tell you that his/her friends at school are making fun of him/her or of his/her sibling rips your heart out of your chest and I am not sure that even after you have had that conversation for the 100th time it will ever get any easier or hurt any less.
What I do know is that as the parent of children both typical developing and “non-typical”, I can’t ignore it and I can’t pretend like those conversations will not be had. The fact of the matter is as much as we want to make it all go away (and trust me I do) I have a responsibility to provide my son Cameron with the tools and the information he needs to understand his sister, to deal with society and to appreciate our unique family experience.
Don Meyer (founder of Sibshops) questioned brothers and sisters of children with special health and developmental needs about what they need and want others to know. With a list of 20+ things (which I hope to write about in a later post) a few really stuck out. Siblings want LOTS of opportunities to obtain INFORMATION, to LEARN more about thier sibling’s life and COMMUNICATION. Three key concepts all parents need to know in order to best support the needs of the siblings in thier families. As mentioned, the list was long and a different post will be dedicated to the exploration of this further, but I felt the need to mention these three things first in order to begin conversation about how tough questions are answered. I will reitterate that we don’t have to know the answers, but our typical developing children want to know that at least we are trying, that we are willing to share the information we DO know and Do have with them and that we are there to listen.
As a parent we must always remember that we need to be honest, but we need to provide informaiton that is developmentally appropriate. Next week’s post will focus on developmental stages of coping (what children can understand and deal with at different ages). I sometimes struggle with how to be honest with my children while at the same time making sure the information I give them is something they can process and understand. I picked up a phrase from a friend of mine recently who has been going through a tough divorce. She told me that she handles this by telling her children that she will always be honest with them but that she will never tell them information that is not appropriate. I really liked this phrase and have started using it with Cameron. On a side note- it works well in any situation (especially when my husband and I are trying to have a conversation and little ears are listening and asking us questions about what we are saying and talking about).
I want to close this post with this- we are parents but we are human. We place way to many expectations on who we are are parents and shame ourselves when we make mistakes. We are human and our children need to see this. They need to know when we have the answers and when we don’t. They need to see us laugh, but they also need to see us cry. They need to see us fall but also see us pick ourselves back up and try again. They need us to be honest, but they need us to protect their innocence. They need to know that they world is full of challenges but that it is also full of blessings.
Raising children is tough and the challenges we as parents of children with special needs face daily can sometimes seem unbearable. But if we give the best we can give each and every day and know that in the process we are going to make mistakes and wish we would have handled situations differently
