“There’s no coming to consciousness without pain.” – Carl Jung
A couple of months ago, I wrote a post about what I would say to parents whose children have cerebral palsy (#safetynet). I have been working with disability writing and information for several months now and feel the need to write a follow up, just like Maysoon Zayid just gave another (equally brilliant and wonderful) TED talk in Athens.
I understand that my parents did (and still do) the very best they can for me. I love them and I come from a good family. I just believe it’s a disservice to treat anyone who has any disability of any kind like he or she is special. It skews perception of the world and the self and doesn’t benefit anyone. I have spent the last several years trying to ‘socially normalize’ myself as a result of being an overprotected and spoiled disabled child.
I’m a good person. I was never a bad person and I would still be a good person even if I had not been made aware of my social immaturity and made the decision to change it. I just wanted to share what I wish I had known and been taught growing up. I think that, if I ever have a family, I will be a tough parent.
Do not spoil your child.
No matter how tempted you are, no matter how guilty you might feel, and no matter the hardships your child faces, do not spoil her. Teach her to pick herself up (literally and figuratively) when she falls down, and teach her that she can’t just do whatever she wants and get whatever she wants whenever she wants it. Let her take some hard knocks, allow her to make her own mistakes, and let her fully experience consequences for her behavior.
Work on social skills and social maturity in the same way you work on physical therapy and physical health.
Having poor social skills can be more of a hindrance than any physical or learning disability. I came into appropriate social interaction and social maturity comparatively late (as a result of being very sheltered and excused from everything). I really wish I had grown up with the same social awareness as my younger brother and sister, and that I still didn’t have to be mindful and work on my social self and maturity all the time. Ensuring your child’s social maturity should start as young as possible. It’s extremely painful for me to know how immature I used to be, and very humbling to have to keep working at it.
Let your child make her own mistakes.
Mistakes are part of life. They are unavoidable. They are the only way that we grow and learn. I was never allowed to fail at anything growing up; someone always stepped in and either got me out of a bad situation or did the work for me that I didn’t do. It wasn’t good for me because I never learned that mistakes are actually natural and healthy and that failure can be useful. It’s only when I got into the working world and had to deal with other people, be accountable, apply criticism quickly, learn new things regardless of my own wishes and desires, and finish things that were hard that I finally learned that mistakes are inevitable and that we learn from them.
Tease your child and teach her sarcasm.
I think this is the most important one I wish I could share with every single parent of a child with any kind of disability. My parents never ever used sarcasm with me and they never teased me in a good-natured way. I never understood when people were sarcastic and I took everything too literally, seriously, and personally. I still have an incredibly difficult time not taking everything to heart. And I mean everything. Make sure that your child can discern between lighthearted and mean spirited teasing, can understand sarcasm (and use it right back) and that she doesn’t take every single thing as a personal attack.
Do not blame yourself for your child’s disability or circumstances.
Blaming yourself for your child’s disability or the hardship he or she faces – whatever the cause of the disability itself – serves no one. It will torture you and it will negatively affect your child, the rest of your family, and other people around you. Do the very best with what you have, who you are, and the support you can build around yourself. A few years ago, a close family friend was pregnant with very sick child. I told her not to blame herself, that it wasn’t her fault, and that she never did anything wrong. I said that my own circumstances were just a ‘shit happens’ case and that no one is to blame for it at all. Blaming yourself for your child’s disability will never amount to anything positive and is a waste of time and energy.
Ask for the support and help you need and allow other people to help you.
A year and a half ago, a friend of mine told me that she and other people around me could tell that I was struggling but that I wouldn’t open up to anyone or allow them to support me. She said that I had to open myself up enough to allow people to support me if I had a problem, and that staying closed while obviously struggling only projected my negative energy onto others and they felt bad. She said this in a supportive way rather than a demeaning or critical way, and I tried to relax and to let others help me. I just realized that I’d been too scared of opening up too much and needing too much help. If you need help, get it and allow other people to support you through tough times.
Have compassion for yourself.