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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-Becoming advocates for kids with special needs was not part of our parenting job description when we were expecting our first child. It probably wasn’t part of yours, and it wasn’t part of John and Michelle Bartlett’s either. But after their son Jake was born, Michelle morphed into an extraordinary advocate for their son. Over the next few days, Michelle shares her journey with DifferentDream.com readers. Today, in Part 1 she describes how she became her son’s advocate.

Michelle’s Special Needs Advocacy Journey

Jacob was first diagnosed with 4p- syndrome when he was 7 months of age. We were told he would not live to 2 years of age. This year he will be 12 years old. We have had a few close calls over the years, but we are truly blessed to have him here still with us. He is also diagnosed with epilepsy, CP, PDD-NOS, osteopenia, and Mitochondrial Disorder. Jake has been in and out of the hospitals for various surgeries for club feet, ear tubes, and hypospadias, but he has been in the hospital the most for uncontrollable seizures. The tonic-clonic seizures are from fever-related illnesses, and one time due to a surgery.

We have spent a lot of time battling with the school districts to get Jake an appropriate education, and I have appealed many times with insurance companies to get things covered for him.  I could easily write a book on schools, and one on insurance companies. I would also have to add a book about dealing with doctors as well.  At times it is hard to get people to see past the diagnosis to the child. I tell families that the diagnosis is just words to describe a medical condition; it does not define who my child is. In fact how would we define a super cute, snuggly, awesome little boy?   He is impossible to define. He is Super Cool Man!

I guess you could say our special needs journey has been pretty awesome. I have learned more than I ever thought possible. I always tell people parenting a typically developing child it has it sharp peaks when things happens, but you pretty much stay in the middle as far as what life gives you. With a child like Jake it is a constant up and down journey, but a journey I would do over again a million times over. We have lots of ups and downs and don’t spend a lot of time in the middle. It is an intense roller coaster ride, but a blessed coaster.

How Parenting Jake Changed Michelle and John

I am a much better person, and Jake challenges me daily. Our first priority in life is taking care of our son and providing him the best care possible. When he was younger, we spoiled Jake a lot since we were told he would not be with us a long time. I think subconsciously we did this without realizing we were spoiling him. He is now an 11-year-old boy that even though he is nonverbal he lets us know when he is unhappy. He yells at us when he is angry. So in the last year, we had to start treating him more like a typically developing 11-year-old and putting him in his room when he is being naughty. It felt weird at first putting him in a time out, but it was actually refreshing because we saw how much alike Jake was to other kids. He may be developmentally delayed, but behaviorally he is right on track.

There are certain things that I focus on more than other things. An example would be that I am always working on his walking and using his legs, and do not work as hard on his academic skills. I think every family is different, so how a child functions not only depends on the level of disability but early intervention, schools, and what the parents focus on. I hope this makes sense. The other thing I learned was that Jake will do things when he wants to, and not when I want him to do it. It can be hard to back off on teaching a skill when you really want them to do it, but sometimes it is necessary. I have learned to have more patience, and let Jake develop at his own pace.

How Parenting Jake Turned Michelle into a Special Needs Advocate

The things I have learned from Jake have carried over into every aspect of my life. My passion in life is now helping other families that have children with disabilities.  I also learned to be an incredible advocate when it comes to the medical community and was able to provide information to my father in his last years of life.  People have asked my advice on many other issues and having Jake has helped me prepare for so many things. My best advice for families is to slow down and climb into your child’s world instead of making them fit into our world. Once I let go of developmental milestones things became so much better, and we have so much fun. Jacob has taught me to slow down and rejoice in the little things.

What’s Your Advocacy Story?

If you’re the parent of a child with special needs, you’ve learned to be an advocate, too. So share your advocacy story in the comment box and come back tomorrow to learn more. See you then!

Advocacy 101: A Mom Became a Special Needs Advocate, Part 2
Advocacy 101: A Mom Became a Special Needs Advocate, Part 3

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.