Advocate is not part of the job description most of us imagined when we thought about becoming parents. But as Michelle Bartlett shared yesterday in Part 1 of her story, parents of kids with special needs learn advocacy skills very quickly. Today, Michelle talks about Caregiver’s Ladder, the parent support organization that sprang from her work as an advocate.

Advocacy and Caregiver’s Ladder

Caregivers Ladder was created because of every person I have encountered who has a disability. It began in 1999 before Jake was born, while working at a sheltered workshop in Texas. Over the years after Jake was born, we started support groups for families at two different military bases. In the spring of 2010, I came up with an idea for a general framework for a support group that could be held anywhere in the world with a clear concise format for caregivers of children with disabilities.

Twelve affirmations (you can find a list here) help keep our discussions on a specific path. It has always bothered me that families that have children with a rare disorder, undiagnosed disorders, or mental health issues did not have a lot of support groups out there for them. The other issue is we all have so many things in common. The biggest is that we all love and care for a child with a disability. The disability unites us, but typically the diagnosis divides us into many other groups. This group will be a great way to connect with families regardless of the type of disability and create a supportive and informed community. The group is designed to be run by families of children with disabilities for families of children with disabilities. I guess you could say this group has been in the making for 13 years now, but officially took form in 2010.

Advocacy Work Beyond Caregiver’s Ladder

In 2007 I became involved with Project DOCC at Genetic Alliance in Nebraska, and I loved it. It is a group that educates medical residents and allied professionals about children with disabilities. Project DOCC is at various hospitals across the country. When we retired to Texas, I became involved with the medical education program at Scott & White.

In the fall of last year, I partnered with a few other families that run different groups in our community for Children with Disabilities, and we had a Fall Festival. We had over 250 people attend a free festival for families of children with special needs. We are beginning to plan this year’s fall festival in October. One thing I have learned about being involved is you get to meet some really awesome people and the events are so much fun for our kids.

How Michelle Finds Support as an Advocate

My husband and I believe that God has a reason for everything. Our son was given to us not just because we could handle being parents of a special need child, but we needed him much more than he needs us. He has become the glue in our family, and he helped us grow up. Our extended family members have been supportive as well. On my side of the family Jake is the youngest grandchild and spoiled by his grandma and aunts. On my husband’s side they view Jake as Jake. Everyone loves him, and we encourage them to ask questions if they don’t understand something. My nieces and nephews have always felt comfortable asking questions, and they are very protective of Jake.

We have also had some amazing doctors along the way who are worth their weight in gold. They respected our decisions and put up with our constant questions. A good doctor will not be upset when you have questions. Doctors typically tell us they feel John and I are incredible parents. We appreciate their support a lot. All the allied health professionals that see Jake and work hard to help him reach his full potential mean so much to us as well.

Another group is all the families that have had kids with disabilities. I am in contact with so many of these families, and they have provided tremendous support to our family. We have been on a lot of ups and downs with each other, and it is nice to have people to talk to. My favorite thing is having events with other families, and we can be ourselves. No one stares when your 11-year-old child has a bathroom accident. They help with the cleanup, and this has happened to us. I think families tend to create our own version of normal, and when we can have that normal out in public with similar families it feels so nice.

Where Do You Find Support as a Special Needs Advocate?

Michelle described her family’s support system. Now’s your chance to brag about the people and organizations who support you. Leave a comment, if you like. And come back tomorrow for Part 3 when Michelle gives advice on how you can advocate for your child.

Advocacy 101: A Mom Became a Special Needs Advocate, Part 1
Advocacy 101: A Mom Became a Special Needs Advocate, Part 3

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