Parents who have Children with Physical Disabilities
I was asked to write a list of "10 Tips for Parents who have Children with Physical Disabilities," so I went back through some of my previous posts to find the messages that I feel are most important. These are the few that really stuck out for me, and I hope they will resonate with you as well!
It takes strength and courage to raise a child with a physical disability... but you can do it! It is an enormous responsibility, yes, but the challenges are far outweighed by the joy your child will bring into your life.
Focus on your child's strengths. Put emphasis on what your child can do, instead of what they cannot do. They may do things a little differently, but that's ok! Be open to your child doing things in a way that feels most comfortable to them.
Remember these important F-Words: In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter published a paper titled: "The 'F-words' in Childhood Disability: I swear this is how we should think!" The paper features six 'F-words' that the authors claim should be the focus in childhood disability. They believe, as I do, that we need to move away from the concept of “fixing” disabilities and focus instead on Function, Family, Fitness, Fun, Friends and the Future!
Don't sweat the small stuff. You will realize soon enough that there are plenty of things you have to fight for, so you are going to want to pick your battles. Avoid any unnecessary arguments and save your energy for when you really need it. Remember, you have a limited amount of time and patience, and you can't afford to blow it on stuff that doesn't really matter. Equal treatment and inclusion? Worth fighting for. A few toys left around the house? Not so much.
Take care of yourself! While your life may be consumed with meeting the needs of your child, it is important to recognize the need to look after yourself as well. Having a strong support network and take time to do the things that make you happy are necessities when faced with the complex and challenging yet immeasurably rewarding job of raising a child with a disability. Feed your soul. Put on your own oxygen mask first before assisting someone else. Those flight attendants know what they're talking about!
Find your tribe. Connect with other parents and families who are facing similar challenges. As a parent of a child with a physical disability, I know how important it is to connect with others who can relate to what you are going through. No one truly understands the physical, emotional, social and practical challenges of parenting a child with special needs better than another parent.
Let your child be your teacher. There is so much that we can learn from people with disabilities. They teach us to slow down and appreciate the little things. They teach us about compassion, joy, and unconditional love. They teach us that sometimes life doesn't go exactly as planned, but that it can end up being even greater than we could have imagined!
You are the expert on your child. No one knows your child better than you do, so while reading a medical file may tell you about their disability, it does not give a complete picture of your child as a whole person. As their parent, you are able to provide real-life insight on how their diagnosis affects their day to day life. I hope that parents feel empowered with this knowledge, and feel comfortable expressing their thoughts and feelings to health care professionals.
Some days will be hard. Really hard. But you will get through it. I won't deny that I do struggle and it does hurt sometimes, seeing my child go through all that he has had to go through because of his disability. It is hard for a parent to accept. But whatever pain I have felt is far surpassed by the joy of each moment I spend with my son.
Focus on the positive things, and think of all the things you are thankful for. Life may not be going the way you had planned, but that doesn’t mean it can’t be awesome! Find happiness in your child, and that will get you through anything!