What if my Child is Diagnosed with a Developmental Disability?

  

When a professional first tells you your child has a developmental
disability, you’re probably going to have a million questions – and a
lot of emotions. So here’s who you can call:

First, talk to your spouse or partner, another close family member, or someone else you trust and love. Look for someone you can count
on to do a lot more listening than talking, and someone who will
give you support and reassurance.

Next, talk to someone you know who has a child with a disability
(preferably a developmental disability). Everyone’s experience is
different, but talking to someone else who’s been down this road can make it a lot easier. You’re opening a dialogue that could well go on
for years; for now, you can ask for advice about local resources,
support groups and programs.

Finally, contact your local Infant Development program. They will
send a consultant to talk to you, and you get to call the shots on the
kind of support you need.

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One Response to What if my Child is Diagnosed with a Developmental Disability?

  1. Kevin Lusignan says:

    As a society, we think of birth as a time of celebration as we welcome our child into the world. For us, our daughter’s birth process was difficult and the cause of her intellectual disability. It was hard to celebrate at the time and her future was uncertain. After a few weeks, she got stronger and left the hospital to come home. About a year later we were told by the doctor that she was mentally handicapped and would have to be institionalized. I remember how angry and helpless I was. As a young man with limited experience, it was hard for me to see a future for my daughter. At the same time, I knew that there was no friggin way she was going into any institution.

    So, Angela grew up with a family and love. When she was younger she was the first child with a disability who was integrated into her elementary school. From there she went on to graduate from high school although it was harder to integrate her into into typical classes and the closer she got to grade 12 the more time she spent in the resource room. I know that her school years were very important to her and she learned a great deal. After she graduated from high school she had a one-on-one staff to assist her in her daily activities. She is now 27, has a full life and is doing just fine. As I reflect on the time from her birth, I feel so very blessed that Angela is part of my life. I know that there are many other people who feel the way I do. It is clear to me that Angela has had a significant positive impact on my life in so many ways.

    At the same time, raising a child with a disability is not easy. So I would like to offer the following advice:

    1. Actively grieve your loss. What I mean by this is don’t delay it by avoiding the pain or by being in denial. This took me a long time but eventually, I shifted from "what could have been" to "what is."

    2. Be kind to yourself. Exercise, find ways to have your own time, and have healthy habits.

    3. Lean on family and friends.

    4. Contact your local association for community Living and see if there is a support group. I have made many friends by being associated with BACI. And I met my lovely wife in the parent group.

    5. Men often really suffer because they are not good at expressing their feelings. Therefore, it is important to ensure they are supported. More information...

    6. Get into the system as soon as you can. Figure it out and get good at being an advocate. Make sure that you fight for respite so you can take a break now and then. There is support out there if you need help.

    7. Relationships must be strengthened to make sure that you stay solid even with the added emotional stress. Look after each other.

    8. Remember that your child has rights as expressed in the Canadian Charter of Rights and Freedoms. Hold your head high when you ask for services and ask for what they need, not what you’ll think you’ll get.

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