Candia Nicholas has worked as director of Arkansas Support Network’s Community Parent Resource Center for five years. She is the mother of Bentley, her 13-year-old daughter, who has Down syndrome. Candia also directs ASN’s Student Work Experience Program which provides job-related instruction for local high school students who have developmental disabilities. We asked her about her perspectives as a mother and program director and what ideas she might want to share with other parents to help them advocate more effectively for their children. These are some of her observations.
Thoughts on advocacy:
–When I think about being my child’s advocate, I learned early on that I needed to be her voice. I was responsible for speaking for her because she could not speak for herself. It’s often stressful knowing that you have this responsibility. Parenting can be scary, but you must learn to advocate (speak up) for your child, so they can get the services they need and be accepted and understood.
Parents are often the only constant in their child’s life. People come and go all the time in our children’s lives, and just about the time someone gets to know and understand your child, it’s time to move on to the next person (teachers, therapists, etc.), and the process of getting to know each other starts all over again. When I started attending my daughter’s school meetings I quickly realized that I am the expert on my child. I may not be a medical expert, but I am the one who has been by her side, holding her hand through everything. I am the one constant in her life.
Thoughts on following up with professionals providing services:
—As a new parent, I admit that I was not the best with follow-up until I had to figure out the process. As I work with families, I often hear them say that they are missing out on services and opportunities. We expect that once we locate these services and make contact we will get a call back from someone (i.e., professionals, agencies, etc.). I know that most people in this line of work have larger than life caseloads. I recommend that parents kindly follow-up with these professionals if they don’t hear back from them in a reasonable amount of time. Parents often have to be “the squeaky wheel” in order to get the services their child needs. As a parent, I believe we often overthink our actions. Don’t worry so much about offending people. Remember, you are the voice for your child and you are the most important part of their team. You are doing what you need to do.
Example: Common issue we see in our office.
Follow-up is key when dealing with Medicaid Waiver packets. When we send the information in and don’t hear back from the Waiver unit, we can’t just assume that our child has been placed on the waiting list or that someone is going to call us back. We can’t wait and wait, hoping that someone will contact us. I think I learned that early in the process. There are so many forms and applications that you are expected to fill out. I was one of those parents who would wait and wait on a call to be returned or wait on information to be sent through the mail and never receive a reply.
That all changed for me when Bentley went into the hospital for a couple of months and I found that she wasn’t getting what she needed. So I started calling around for resources. I did this over and over until I developed some confidence. When you are learning to advocate you often build confidence the longer you do it. The more involved you get, the more you find your voice and can speak for yourself and your child.
On developing a louder voice on behalf of our children:
–I can tell you the exact moment when I developed a louder, more confident voice. It was when my daughter was in the hospital and she received the wrong medication. I realized this because my mother had been writing down everything– she was the thinker. I was just living in the moment, day-to-day, ignoring the details, and just praying for my daughter to live.
After heart surgery, Bentley was on 21 medications, tube fed, and connected to a number of lifesaving machines. The nurses came and went from her hospital room constantly. The days and numerous shift changes started running together. One day, a nurse brought in formula, put it in Bentley’s stomach tube, and left the room. I looked at the formula running through the tube and told my mother that it looked darker than the formula she had been taking. She looked through her notes to find the name of the formula and when we looked at the can of formula they had just given her we could see that it was different. I had to do/say something.
I was worried about offending the nurse when I asked her about it so I spoke to her very timidly. As a new parent, in a vulnerable situation, I believed that doctors and nurses were somewhat “godlike” and not to be questioned. After all, they were saving my daughter’s life. These two misfortunes made me realize that everyone makes mistakes and that I needed to speak up. I still have the utmost faith in doctors and nurses but it’s important to realize that mistakes can happen with anyone.
Hindsight is 20/20. Years later my mom wrote a beautiful, detailed book about Bentley’s first years of life.
Successful parent advocacy:
–This definition can vary from parent to parent. My definition of successful advocacy for my daughter is…being included in General Education at school, having friendships with typical peers and peers with disabilities, functioning well in the community, being included and accepted, and being confident in advocating for herself.
Advice for other parents:
–Follow your gut instincts, ask questions if you feel you need to, and don’t be afraid or think that your questions are stupid. Doctors and other professionals know a lot that you don’t know, but it’s important for you to share what you know and feel as well.
Here’s an example: I typically give Bentley two consecutive days of being extremely ornery and acting up at school and then it’s off to her PCP. Bentley used to see this doctor that I loved. When she wasn’t acting like herself, I took her to him and told him that I thought she had an ear infection. He gave me a funny look and asked, “Why would you think that?” I said, “She’s been ornery for two days”, and he replied, “Isn’t she always ornery?” He knew Bentley very well, and I chuckled at his response. I replied, “Well yes, but this time it’s more than usual.” I let him know that things were even more difficult at home than at school. When he did the examination, he found that she did have an ear infection.
You learn these things as a parent and they are different with every child. I’m often told that my child does not follow the normal trajectory of a child with Down syndrome; she writes her own book as she goes. After 13 years, I know this to be true. As parents we just have to be really tuned in to our children and figure out what works best for them. My last piece of advice is don’t beat yourself up for every little thing that goes wrong or not as planned. Slow down and enjoy your children, they grow up way too quickly.
Staff of the Family Support Program (including original content as well as curated links to various authors around the web.)