Being a parent of a special needs child can be a challenge but it takes a special parent to make it work.
All babies are special and all loving parents will tell you so. Will you still think the same if you found out that your child is a special needs child with a disability? I am referring to children born with an impairment or handicap. You suddenly find out that your perfect little angel is diagnosed as autistic, or deaf, or visually impaired, or some other disabilities. It feels like the end of the world.
Denial. Anger. Bargaining. Depression. Acceptance.
Elisabeth Kubler-Ross came up with these stages of grief in her book about death and dying. But it can also apply to this situation when you find out that you have a very “special” and handicapped child.
Discovery of their disability or impairment could have been anticipated or a surprise. It can happen early on after birth or later on as they grow. The stage when you find out never lessens the hurt parents feel upon knowing their child has a handicap. And I know because I am a parent of a special child.
Denial. We can deny all we want but it will not change the facts. Getting a second opinion, or even a third opinion from the best doctors all come up with the same result. This can’t be happening, my child is perfect! The tests are all mistakes! Why is this happening to us?
Anger. Parents become angry at themselves, at each other, at other people. What caused this? Who is to blame? It’s my fault! Are we getting the right medical advice? Are you doing the best you can?
Bargaining. And maybe parents feel so overwhelmed that they think about “what if’s” and say, “It should be me instead of my child.” “I will give up my favourite things as long as my child gets better.” Who really do we bargain with?
Depression. It feels like the whole world is crushing down on you. It hurts to see your child this way and you feel so helpless to give a cure. You may become extremely depressed and not want to work, eat, and sleep. You just want time to turn back.
Acceptance. The truth has hit home. Your child is a special child and needs you. This is your turning point; there are many things you can do. It is not the end of the world.
People go through these stages differently. I must say that we were lucky to have the loving support of our family and friends through our trying times. It helps when parents communicate their feelings with each other. There is no use to find blame. Someone once said to me, “What caused it isn’t important now; it’s what you do after that counts.”
Let me be honest with you, you will go through these stages many more times. It’s not a one-time phase where as long as you get to accept it the disability, the worst is over. Sorry, but that’s a lie. As your child grows, life goes on and there will be happy developments and there will be bad days when things seem to go worse. And you go through the same cycle again. And again.
However, I will not stop here. I want to share a secret. Parents of special children are special themselves.
Who but you could come up with a special way to communicate with your deaf child? Who but you could find the words to describe a sunrise to one who could not see it? Who but you would take extra care and time to play with your special baby?
You have that inner strength that drives you to bring your handicapped child to therapy no matter how far it is. You have that magic touch that brings a smile to your child while being treated in the hospital. You have the perseverance to work and strive to maintain a normal life for your family. You have the biggest heart that loves your special needs child no matter what.
But special parents have special responsibilities too. We must educate, support and advocate.
Educate. Learn about what your handicapped child has. What is you’re your child’s disability? What can I do to help my child? Nowadays, we are lucky to live in a technologically advanced world. We can access the internet from a phone, a laptop, or a desktop computer. There are public libraries where you can get information. My personal experience was reading books and corresponding with a support center. When talking with your doctor’s ask them to explain to you. If you don’t understand their medical terms, write them down then find out what they mean. Once, I remember a doctor asked me if I had a medical background because I was using medical terms to describe my child’s condition to him. (I don’t.) Knowledge is power.
Support. Welcome the help. We are only human and cannot carry the weight on our own. Do not turn away support from other people. You will encounter many people who sincerely wish to help in many ways, either financial or emotional. Maybe a few minutes to watch your child while you take a quick shower or a meal they cook for you, small toys for your child, let them know what can help you if they ask. And keep your circle of family and friends. They will help provide a normal and safe environment for your child. Seek out government or non-profit agencies that can help you with financial or other resources.
Advocate. You represent your special child. Speak up for your child. Find time to join a group that shares your views about your child’s condition. In your circle of family and friends, educate them on how to communicate with your child. Sometimes, people are just ignorant on what to do and need you to take the lead. And remember to pay it forward. Help another parent going through similar experiences by sharing yours. I remember many parents who shared with us and many more whom I hope I have helped by sharing our story.
On a personal note, I also added prayer. I respect everyone’s opinion and ask yours for mine. But prayer does help me in good times and bad. I pray for strength when I experience setbacks and ask for guidance when I am at a loss what to do next. I give thanks for all the blessings including the many milestones that my special needs child achieves each day.
For all the special parents with special children, I admire your bravery and hope that you continue to be strong. You are special too.