Advocacy: The Role of the Parent, Part 3 – Teaching Self-Advocacy
In Part 1 of our “Advocacy” series, we discussed the many roles parents play in their children’s lives. We also introduced a new role, the role of a parent advocate. We examined our feelings about living with labels and emphasized the importance of educating yourself about your child’s learning differences. Finally, we touched on how and when to disclose diagnostic information.
In Part 2, we talked about the importance of community and helped you find ways to recruit support, including how to deal with naysayers, doubters, and critics by setting boundaries.
Today, in Part 3, we explore the topic of Self-Advocacy. We focus on how to talk with your child about their diagnosis and discuss the importance of helping your child find their voice in speaking up for themselves.
Self-Awareness Before Self-Advocacy
Self-awareness is key in learning to self-advocate.
Help Your Child “Know Thyself.” Before your child can learn how to self-advocate, they must first be made aware of their diagnosis.
In my pre-homeschool mom life, I was a therapist and an educator. Whether the diagnosis was medical, mental health or learning differences based, one of the biggest questions I fielded from parents was whether or not to inform their child of their diagnosis.
As with any disclosure in general, the fears were common and unfortunately not always unfounded.
“What will others think of my child?”
“What will my child think of himself/herself?”
“How will this impact my child’s future?”
While these are valid concerns, I submit to you my reasons why I think it is wise to inform your child of his or her diagnosis.
Children notice more than we think they do. It is a natural part of human development to observe and interact with the world around us. Whether it is with siblings, cousins, playmates, or peers, it is human nature to compare our abilities to others. In these comparisons, differences are noted whether it is height, eye color, or athletic ability. Once kids start making comparisons they begin to ask questions and expect answers.
Children will fill in the blanks with their own (frequently inaccurate) information. If we do not give children a valid explanation for these differences, while also positively and lovingly affirming their sense of self and identity in Christ, then children will fill in the blanks on their own. More often than not, their explanations are neither filled with love nor are they life-affirming. Our children look to us, their parents, for reassurance that they are loved, worthy, and enough.
Babies don’t keep. Oh, how I would love to put my son in a bubble and keep him home with me forever. (Ok, so there are some days when I would like to FedEx him to his grandparents’ house, but those days are rare.) In reality, our children will not always be underfoot and underwing.
The days are long, but the years are short. If we do our jobs right, our children will leave our homes somewhere around the beginning mark of their second decade of life. (I know. When I think of how many decades I have been on this planet, or better yet, how few years I have left with my son before he leaves home to build a life of his own? I get a bit weepy.)
Part of preparing our children to embark on an independent life of their own involves empowering them with knowledge. Specifically, 1. Knowledge of faith, 2. Knowledge of the world, including how to live in this world without being of this world, and 3. Knowledge of themselves.
Informing your child of their diagnosis is no different than teaching them health education, human development, or hygiene information. If you had a child with diabetes, would you not teach them the importance of proper nutrition, monitoring blood sugar, and taking prescribed medication?
It prepares them to live independently with confidence. Children cannot advocate for what they do not understand. In my experience, parents often keep diagnostic information from their children under the guise of “protecting them.” They fear their children will judge themselves too harshly, use the diagnosis as an excuse to perform poorly, or see themselves as only the diagnosis rather than as a person with a diagnosis.
As with anything, it is often not what we say, but how we say it. Attitude is everything. It’s all in how you approach it. Prepare what you are going to say in advance. Practice with your spouse.
If you find yourself stumped or are simply intimidated about how to broach the subject with your child, then please keep reading. I have some suggestions that can hopefully put you at ease.
The “Talk”
For when it is time to have “the talk.”
In most of my online parent support groups, I am presented with two main questions when it comes to “the talk.”
When.
And how.
Let’s start with when. To be honest, this is a very personal decision. “When” to have the “talk” depends on a number of factors particular to your family. More important than the chronological age of your child, I would say you should consider your child’s emotional and cognitive maturity level.
Do they understand the basics of how their bodies work? While this is not necessarily a “birds and bees” discussion mind you, a basic understanding of typical development and how the brain works on an elementary school-age level is quite helpful.
And now for the how. Being different is beautiful. We are living breathing examples of our Heavenly Father’s appreciation for diversity! Neurodiversity is no different.
Teaching this appreciation for diversity was a big focus in our home long before we ever knew of our son’s learning challenges. It is a central component of our faith and was a regular topic in our bedtime stories.
While we did not formally discuss our son’s Developmental Coordination Disorder diagnosis with him until he was around age 7 (more on that conversation in upcoming blog posts), we did talk early on about his motor coordination and mobility challenges and help him learn ways to communicate with others (including with us as his parents and at the time, his kindergarten teachers) when he needed help.
Keep it simple. When in doubt, parsimony is best. The “talk” need not be lengthy. Short, sweet, and to the point (sometimes over several conversations) is ideal. In reality, by the time you reach the subject of the actual diagnosis itself, you will have had multiple conversations leading up to and preparing you for the “big talk.” It’s true! All of your previous “little talks” are helping lay the foundation.
Ask for help. You should not expect yourself to be the sole source of information for “the talk.” There is great comfort in community. Your “village” is an invaluable resource. During your preparation phase, reach out to your child’s therapy crew for age-appropriate materials, ask for help in parent forums or groups, or reach out to your pediatrician. Two amazing resources for information are www.canchild.ca, a Canadian-based research center, and www.understood.org, an information-based website for Learning Differences.
(For a list of suggested resources, please check out our next in-depth, self-advocacy blog post series, “Ten Ways to Teach Your Child to Self-Advocate” and “Top Ten Resources for Teaching Self-Advocacy.”)
Remind your child of “whose” they are. A diagnosis is only one part of a person, not the whole. I cannot stress this point enough. On the tougher days, with an endless rotation of appointments, frustrations with academic work, or challenges with getting support, it is easy to become discouraged and have “diagnosis tunnel vision.” During these times, it is easy to lose sight of the bigger picture. As a family of faith, our identity in Christ is paramount. God makes no mistakes. You will see me come back to this point again and again through my writings, my videos, and my podcast episodes. It is just that important.
How Do I Handle My Child’s Questions?
Questions are normal, natural, and to be expected. Prepare yourself beforehand by educating yourself about your child’s diagnosis.
But do not expect to know everything. That is both impossible and unrealistic. Besides, kids are pretty good at throwing us curveballs just when we think we have it all figured out anyway. Even the experts have kids who can stump them.
Surround yourselves with others who know more than you do. Join support groups, speak with your therapy crew, or reach out to parents of kiddos who share your child’s diagnosis and ask them for tips on how they handled “the talk.” Bottom line? You do not have to do this alone.
It’s ok to say, “I don’t know.” None of us can have all of the answers all of the time. You can reassure your child (and yourself), by letting your child know that you will search for the answers together.
Be ok with uncertainty. Sometimes we simply do not have an answer. And that’s ok. Let me say it again. It is ok to not have an answer. We do not know that things will work out. We do not know what the future holds. And you know what? We do not have to.
We DO, however, have certainty in one thing. God is on the throne. He has a plan. Sometimes we are privy to his plan, sometimes we are not. While this can be incredibly unsettling for Type A planners like myself, it is an ongoing lesson that I have been learning (and will probably continue to learn) throughout my lifetime.
The Power of Choice
Once you and your child have been properly educated about their diagnosis you may be ready to begin teaching them how to advocate for themselves.
Beyond the absolute “need to know basis,” children should have a say in where, how, and when their information is shared. In Part 1 of this series, we touched on the importance of disclosure as a family decision. Discuss with your child the pros and cons of sharing one’s personal information with others.
Self-Advocacy: Our Experience
Learning how to speak up for oneself is an invaluable life skill. Learning how to ask for what you need and how to protect yourself when you struggle with communication is crucial. One clinician explained that having DCD is like “walking around with weights on, all over your body, all day.”
Simple everyday tasks that a person without DCD likely takes for granted such as sitting upright in a chair, holding a pencil with proper grip, walking without tripping or falling every few steps, or tying shoes require loads of energy and monumental effort. DCD is a lifelong “invisible disability” in that others without the diagnosis are unable to see the “thinking energy” those with DCD expend every minute of every day to accomplish simple tasks.
Over time, DCD can take a toll on a child’s self-esteem. Kids (and adults) can be curious, careless in their comments, or even cruel. From an early age, we made a conscious effort to educate our son on the importance of appreciating diversity. Over the years, we have read countless books on appreciating differences of all kinds. Utilizing a strengths-based approach, we helped him highlight his strengths. For a list of some of our favorite books on teaching an appreciation for diversity, please visit our Book Club page.
Although we homeschool, we outsource many extracurricular activities and classes. Oftentimes, in these classes, our son is the first neurodiverse person the other kids have met. Our son stims, hands flapping wildly when excited. Occasionally, he has a vocal stim of humming (which can be distracting at best and annoying at worst to fellow students trying to concentrate.) He is an oral sensory seeker and has chewed every eraser within reach to a nub. (We tried providing chewelry but he felt this drew too much attention from his curious classmates.) His body craves proprioceptive and vestibular input, meaning he frequently wants to crash into things, spin in a chair, bounce on a yoga ball, or jump on a trampoline to self-regulate.
Some kids are curious. Some are direct. Some are downright rude. Teaching our son how to speak up for himself, set boundaries, and self-advocate on a daily basis has been one of the toughest parenting challenges we have faced and continue to face.
Some days are easier than others. Most of the time, with gentle feedback from either the teacher, coach, or my son himself, the other kids are receptive and the comments subside. However, if we change activities, or if a new kid is added to the mix, we start over with square one.
Wash. Rinse. Repeat.
A cycle that can be tiresome. On the worst of days, when emotions run high and sleep has been low, we feel the deepest and darkest feelings. On those days, I give my son (and myself) permission to feel what we feel. The anger. The disappointment. The sadness. The sheer unfairness of it all.
Yes. Feel it. Feel ALL of it.
But you don’t get to stay in it.
You can have your moment (mom, too), but then we are moving on. We are squaring our shoulders, putting our chin up, and standing tall.
Because we know WHOSE we are. He has called us His own. And nothing on earth can defeat that.
COMING UP
When I came up with the plan for this Advocacy series, I originally thought three parts would be sufficient. The more I wrote, the more I realized I had to share. Voila! A bonus post!
While we are a homeschool family, we do attend some classes outside the home. (I will share more in future blog posts about our family’s latest adventure with hybrid homeschooling.) I recognize there may be some readers who may attend school or classes outside the home. So, next week, I share some tips for recruiting support with educators and teachers to foster collaboration and help your child achieve success.
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Blessings,
Kimberly
IOH Mom
This website is not a professional counseling website and nothing here should be construed as professional counseling advice. Although Kimberly Bennett, LPC is a Licensed Professional Counselor, she is not your counselor, and no counselor-client relationship is established unless she has signed an agreement with you. All information provided through this website is for informational and educational purposes only.This post may contain affiliate links. Please read my disclosure statement. Thanks for visiting!
The Spirit of God has made me,and the breath of the Almighty gives me life.
Job 33:4
