10 Things I’ve Learned in Special Needs Advocacy


There is hardly a one-size-fits-all in advocating for a child with special needs.

Just because Wil has Down syndrome, the way I advocate for him may not necessarily work for another child with Ds. Though individuals with Down syndrome share the genetic make-up of 47 chromosomes, their needs are just as diverse as anyone else’s.

That said, advocacy in most any form, increases acceptance and awareness. I have a strong desire for Wil to lead a fulfilling life doing his part to contribute to society. If his abilities are not recognized and accepted, then his opportunities will be few.

Therefore, I advocate.

I’ve learned a lot in advocating for him through trial and error.  With some experiences, I wish I had a “redo” button, and other times things couldn’t have gone better.

Here is a list of 10 things I have learned, but as everyone’s experiences are unique, take from it what you will:

1. Be kind, but stand your ground.

2. Thank well-meaning others for their encouragement or words of advice, but the final decision is always up to you.

3. Progress reports are good, but they simply can not replace what is gained from a face-to-face conversation.

4. Don’t put too much stock in statistics, or get caught in comparisons. Each child is an individual and will reach their milestones in their own way and own time.

5. Freely share your pictures, joys and success stories about your child. The world needs to see more of our kids’ abilities, there is already plenty of focus on the disability.

6. Don’t be afraid to be the squeaky wheel.

7. Surround yourself with people who support you and will be honest with you. You can’t be a friend to everyone, and not everyone is going to be your friend.

8. Everyone makes mistakes. Whoever’s it is, work to correct it and move on.

9. There is always a way. Maybe not the way you envisioned, but there is always a way.

10.  Take care of you; mind, body and soul, so you can fully be there for your child.

Keep on advocating!



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