Every loving family deserves a happy and rewarding relationship with their child, even if he/she is affected with cerebral palsy.
And every child deserves a Thriving and Flourishing development,
even if he/she is brain-injured.
There’s no instruction book on how to be a parent (and ESPECIALLY not one for being a parent of a child with special needs).
Not only is there is no instruction guide, but there is not reference whatsoever, no model to follow. People around you cannot help.
You can’t share your challenges and fears with your sister, your cousin or even your best friend, no matter how close they are to you. Trying to explain them what you are going through is a challenge in itself
My special child is 21 years old. He is a young man VERY severely affected with Cerebral Palsy and our daily lives have been quite ‘rock’roll’ over all those years.
Is it possible to find harmony in spite of all the turmoils that living with a disabled child entails?
But it doesn’t come naturally. You have to work at it. You must step back and reconsider what you thought your parenting experience would be and adapt it to your ‘special life’. Here are a few hints that I developed throughout the years….
Create a mission statement for your special child
This is the first and most important thing to do.
Otherwise, you will be wandering aimlessly, tossed like a piece of wood floating on a raging sea, constantly torn between contradictory opinions, opposing rehabilitation approaches, ambiguous priorities…
Our mission statement for my son is to prioritize a pain-free life, surround him with unconditional love, regardless of what he can or cannot do. Our vision for him is actually what we envision for ourselves as a family and HAPPINESS is the key word.
If any of us falls into the trap of victimization, all the other members would suffer… and mostly our special son Nicolas.
Before we elaborated our mission statement, we were frantically going from one approach to the other,
exhausting ourselves and wearing out our son. Happiness depended on his next milestones… and we were reaping more often disappointment than bliss.
From the moment we elaborated a mission statement for Nicolas, our decisions became clear: no surgeries, no invasive treatment, no grueling efforts constantly leaving him and us defeated. We decided to go with peacenik techniques likely to make him flourish as a human being… gently improving his musculo-skeletal structure so that functional improvements would be spontaneous rather than forced on him.
From that moment on, Nicolas’ health flourished, he was more comfortable in his body and he started smiling as he never did before.
Be flexible with strategy to reach your goals
Setting expectations are important but being flexible with the means is just as important.
Don’t be too hard on yourself if your expectations change, it is often inevitable.
You don’t learn to walk by following rules. You learn by doing and falling over. (Richard Branson)
Very often you will think you’re making the right decision, but you have no way of knowing.
So, “regardless of whether this is the right decision or not, this is the best decision you could ever make with the information you had at that moment and if tomorrow you happen to have different information, you will change your decision accordingly.”
In retrospect, there will be making a lot of great decisions and a lot of decisions that you would not never make again but that’s okay… that’s experience.
Celebrate small victories…but losses as well!
Celebrating small victories are just as important as celebrating big victories. Rewarding regularly your child builds strength and reinforces self-esteem.
It’s also important to celebrate losses, too, because when you recognize a loss or a failure you have the opportunity to learn from it and keep it as a reminder of what not to do.
Hold on! Getting through the hard times and having the perseverance to do so is how you get to the good times.
But find way to help you get through the tough times: surround yourself with a great network of people.
Facebook groups are ideal for this! They live the same things as you. You can rely on them to remind you that the bad times are not permanent.
One of my favorite posts I saw on Facebook was: Relax…whether things go right or wrong…they won’t not last!’
Dealing with disappointment
Dealing with bad news or disappointment is part of the game. It’s how we react to it that makes the difference. If you throw your hands up and just quit, you will have learned nothing, but if you map out a plan to work around the problem, and mold that plan to fit the end goal, you’ll walk away knowing that you came out ahead.
Have a mentor or coach
In raising a child with special needs, it’s helpful to have someone or something to guide you.
This could be conferences for special needs, parental groups, etc – it’s always comforting to have the guidance of an experienced individual.
Do not isolate yourself…ask for help, but ask the right people… the ones who can walk in your shoes.
Nothing replaces experience.
Can you think of any other advice that could be applied to parenting a special needs child? Let’s open the discussion and share our experiences. Send me your comments and I will share them next time!