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10 Things I Wish People Knew About Parenting a Child With a Disability

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Dear family and friends,

Here are 10 things I would like you to know about being a family with a child with a disability:

1. Remember the time when your kids were babies? Remember the exhausting days and sleepless nights? They may be a thing of the past for you, but they are still very much in the present for many families like mine.

2. We are often exhausted from taking care of our children’s needs every day, from feeding, toileting, bathing and grooming, to taking them to school, keeping them engaged, taking them to therapies, encouraging them to socialize and teaching them to be independent.

3. We are really worried about our children. The thoughts of what will happen to them when we are gone or too old to take care of them keep us awake at night.

4. We may not remember the last time we went on a vacation, went out to a dinner or a movie, or even took a relaxing bath, leisurely sipped a cup of tea or coffee, ate a meal in one sitting or got a good night’s sleep.

5. We would love to come when you invite us for a dinner/get-together/party but we may not be able to because social gatherings can be a sensory nightmare for our kids, with all the people and the noise. We may not be able to leave them at home or anywhere else because no one other than us is equipped to or ready to take care of them.

6. We would love to invite you to our house, but our house is always a mess, and we may not have the time or the energy to clean it up and make it presentable for you. We may be afraid of you judging us for it, so we keep postponing our invitation.

7. We would love to talk to you, even though it may not seem like it if we don’t call you or we don’t answer when you call. We are often occupied taking care of our children, so try texting or messaging us instead.

8. We would like you to show interest in our and our children’s lives and try to understand what we are going through. We would also like to know about your children and your lives and know what you are going through.

9. We would be grateful if you sensitized your children towards children with disabilities and taught them to be compassionate towards them, and to befriend them.

10. We love our children more than anything else in the world. They are our world as we are theirs. If you accept them as a part of your world, we will accept you as a part of ours.

Getty image by Michael Jung.

Originally published: November 3, 2019
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