A Letter to Families: Know You Are Not Alone

I know the stress that comes with having a child diagnosed with a disability. I have experienced the sleepless nights, the fear of the unknown, the never-ending confusion and the absolute exhaustion. I understand the feeling of isolation, anger, sadness, pain, and helplessness. I know what it feels like when a decision is made by government that leaves you anxious, afraid and uncertain.

Our son, Eric, had severe physical and intellectual disabilities and his health was very fragile. There was no diagnosis given to us. There were no answers, no tips, no idea about the future. The emotional ups and downs were overwhelming.

When the time came for Eric to go to preschool, I was afraid.  I worried that even trained professionals would not be able to manage his complex care and I was also reluctant to impose my situation onto others. However, I needed more support and day-to-day assistance, so I knew that it was important to move forward. It only made sense to choose the preschool at the John McGivney Children’s Centre.

Three months later Eric was ready for a community based preschool.  We were pleased with the transition and Eric was well supported. As a matter of fact, the staff made an extra effort and advocated to local government on our behalf. As a result, we received some flexible funding that improved our in home support.

When your son or daughter has a disability, there is so much that is unpredictable and misgiving and quite often you don’t know where to turn. It is not easy to entrust your child in the care of others.

Truthfully speaking, that the more people you have access to in a positive, and mutually beneficial relationship, the more support you have when you need it and these relationships are paramount to your family’s journey and your child’s development.

In order to ensure the change is positive for you and your child, there are some things that I encourage you to do:

• Speak up. Believe that you can make a difference and you will.

• Communicate in an honest and considerate manner.

• Be a partner. Supporting your child is a team effort and you have a major role in this partnership.

• Advocate for choice. Every family travels this journey at a different pace and your individuality should be respected.

• Have reasonable expectations and be open to consider a variety of suggestions and options.

• Find the courage to share your child with others; respect and trust them. They will learn so much.

• Ask questions and don’t be afraid to ask for clarification.

• Share all helpful information about your child.

Contribute your knowledge and expertise. Draw upon your vast experiences and tell your stories. This will help others to gain a better understanding of what you may be trying to explain.

Your success in getting someone to understand your point of view will depend upon the approach that you use. A positive approach will get you positive results. Allow yourself to discover your own strength and to recognize the benefits that you will gain from this journey. Here, you will realize hope for the future.

I wish all the best for you and your family. You are not alone.

Published in The Windsor Star, April 16, 2015