Advocate. Not the word that springs to mind when most young dads and moms describe their job as parents. But advocacy is a way of life for parents of kids with special needs. And in the past two days, Michelle Bartlett had given us a picture of life as a parent advocate in Part 1 and Part 2 of the series, Advocacy 101. Today, Michelle is back to wrap up the series by sharing her best tips on where to find encouragement and how to become an effective advocate for your child.
Encouragement for Parents raising kids with Special Needs
My biggest words of encouragement is try to treat your child more alike than different from other kids, and don’t forget to go into their world. It is easy to get lost in trying to make them meet all of those developmental mile stones, but sometimes it is better to put that list away.
If you read the Caregiver’s Ladder affirmations there are a lot of things I encourage families to constantly be working on. Understanding the stages of grief helps to understand how you react to certain situations. When the school would tell me everything my son could not do, I would go into denial mode since the school had no hope. In the grief stage of denial I was not realistic, but I was frustrated with them not seeing Jake. Our kids are just different, and being different is NOT a bad thing. It is all right to take a break and get a babysitter, and try to find friends with kids with disabilities so you have someone to talk with about the ups and downs. And most importantly never ever lose hope; God does miraculous things every day.
How Parents Can Become Effective Advocates
- Read as much as you can about your child’s diagnosis. At least every 6 months or so, do a search on his syndrome for new medical journals. Don’t be afraid to teach doctors about your child and the syndrome/medical condition. It is almost impossible to find a doctor who knows everything about every syndrome, and you know your child best. Each child is their own unique person and will not be exactly like another child with the same disorder. There will be similarities but they will not be exactly alike.
- Partner up with other families that have kids with special needs, and take turns going to various conferences and share the information with each other. Locate a support group like Caregivers Ladder or any other group to meet other families. Many families have time saving information to share.
- Learn as much as you can about Special Education Law. It is also good to attend one another’s children’s IEP’s. Remember: You do not have to have a child with the exact same diagnosis to help one another.
- If you are having issues at a hospital find your Patient Support Representative to resolve the issues. Don’t be afraid to file a complaint. If you are at a military facility you have the right to a patient advocate.
- When the law is getting ready to change write your state representative. You are your child’s voice. We testified in Nebraska with Jake once and it was a great experience, with our testimony and others testimonies it prevented a change in Medicaid waivers for a year.
- Don’t forget to ask questions, ask questions, and ask questions.
- If you feel like giving up, DON’T. We teach our kids to push hard to learn to walk, talk, and we can push hard just like they do.
Recommended Advocacy Resources
- To start off, I love Jolene’s book, Different Dream Parenting, so I highly recommend that.Editor’s note: I did not ask Michelle to say that, but thanks Michelle!
- Every family should own Wrights Law Special Education guide.
- You can also access a lot of information about any medical condition online; just stick to .gov. or .edu sites.
- Facebook is also a great way to find other families out there with kids with a similar diagnosis, or with kids with other types of disabilities. There are families out there that have been through similar experiences and can share with you how they dealt with certain situations.
- When working with insurance companies make sure to highlight medical journals when you are appealing denials for equipment, supplies etc. It gives them a better idea of your child’s diagnosis.
- A CARE notebook is also a very necessary tool, and super helpful to doctors/respite providers.
- Again support groups, support groups, support groups.
How Churches, Schools, Friends, and Family Can Encourage and Advocate
We need people to LISTEN to us. Help us to help our children become valued members in our communities. We see them as valued, and we want you to also. We are usually too busy to ask for help but something as simple as holding a door open to us means the world. I also love it when my neighbor brings over food. One of the things that means the world to me is smiling at my child and not staring. I also do not mind questions, but please smile at him and acknowledge his existence.
What’s Your Best Advocacy Advice
Thank you, Michelle, for sharing the story of how you became Jake’s advocate. Now, peeps, it’s your turn to share how you advocate on behalf of your child. In the comment box, share your best advocacy tips. And if you’re looking for a support group, visit Caregiver’s Ladder to get ideas on how to create one.