Advocacy: The Role of the Parent
Note: For the purposes of this article, I am speaking from our family’s personal experiences with two diagnoses, in particular, Sensory Processing Disorder and Developmental Coordination Disorder. However, please note, the tips are applicable across whatever learning challenges your child may face.
Many Hats
Can you juggle?
Oh, I’ll bet you can! Whether you work, stay at home, homeschool, or some version of all three, (because let’s face it parenting IS a job even if the rewards do not come in the form of a paycheck), then you know what it feels like to have a few balls up in the air at any given time.
We all play roles.
First and foremost, we are parents. Our children are gifts from God and are fearfully and wonderfully made in His image. We love our children as our Father in heaven loves us, unconditionally. 🧡
Long before our children are school-age (and even if we don’t homeschool), we are teachers. From the time they are born, we are teaching our children. We coo to them and they coo back. We answer endless questions as they grow and explore, soaking in knowledge from the world around them. Along with independent living and social skills, we teach our kiddos basic academics like spelling, reading, and math when we have conversations, play games, sing nursery rhymes or read bedtime stories. 👩🏫👨🏫
We are role models. We demonstrate our values and beliefs, embodying the example for them to follow (or at least trying to most days). We set expectations. We give limits. ⚖
We are creative geniuses. We can pull together a birthday party to rival a Pinterest Pro or create a Halloween costume from household items at a moment’s notice. All just to see our kids smile. 🎨
We are magicians. When we accidentally cut our 3-year-old’s waffle into triangles and are met with wails of protest “Noooo! Mommy! Waffles are SUPPOSED to be ROUND!,” we think on our feet and quickly declare, “oh look, sweetie! It’s a puzzle waffle! Quick! See how fast you can put it back together.” 🎩 🔮
We are coaches. We inspire. We motivate. We give gentle feedback. We allow our children to make their own mistakes so they can learn from them. We are their soft place to fall. 🧢
We are our child’s first friends. We manifest compassion and empathy. We soothe the sting of a scraped knee or heal hurt feelings with kind words, a bevy of kisses, and the reassuring comfort of a warm hug. We give and receive grace. 🤲
Most of these aforementioned roles come without thought, brought about by the natural ebbs and flows of everyday life. We switch our hats unconsciously numerous times throughout a single day. At least, I know I do. Yet it wasn’t until we sought treatment for our son’s motor delay that I became aware that I had acquired a new hat. A new role.
The role of Advocate. 🦸♀️
In Your Feelings
Feelings.
The good, the bad, the ugly, and the beautiful.
Love them or hate them, we all have to deal with them.
I liken the early stages of receiving a diagnosis as similar to the stages of grief.
Before our children are born, we have this idea in our minds of how we think our lives are going to play out. When reality does not match the preconceived notion we had in our heads, whatever that may be, we must reconcile the differences.
How we adjust, and how long it takes us to adjust, varies.
But adjust we must.
Like with any other loss, we grieve for what is gone. In our effort to cope, we may first deny – the diagnosis itself, our feelings, or even our circumstances. Next, we may feel anger over having our child face such challenges. We may bargain with ourselves through “If only….” and “What if…” statements in a sort of “magical thinking” attempt to wish the diagnosis away.
If only I hadn’t given in to the “nesting” phase of pregnancy and not scrubbed the bathroom floor on my hands and knees the night before my water broke. Then, I wouldn’t have triggered early labor. FALSE! To this day, my doctors still have no idea why I went into labor six weeks early.
Kimberly, IOH Mom
We may stumble down to the bottom of the well, sliding into depression and filling our minds with all sorts of irrational fears about the future. We may even stay there awhile. Then, finally, someone throws us a rope (or we realize we simply cannot lay in the dirt any longer) and we claw our way back up to the surface. Gradually, we move into acceptance. We draw closer to acknowledging our new reality and, hopefully, grow to see the beauty in it. Out of the darkness and into the light, we long to feel the sun on our faces again.
We see the world differently now. A world filled with new possibilities. Possibilities we could not see before either because we were unwilling or unable to do so.
Speaking as someone who is on the other side of it now, I like to think it was simply because I was not looking for them. I had to dismantle all of my previous schemas about development, education, and learning, in general, to make way for a bigger world filled with neurodiversity, neuroplasticity, and frankly, endless potential ripe for the picking.
We see the world through new eyes now. And once seen, it cannot be unseen. We understand our child will learn things in a different way, perhaps at a different pace, and maybe with different goals.
Different, not less.
With grief, there is no way around it, only through. Give yourself grace. Permission to feel whatever you feel. What we resist, persists. If you lean in, you will learn that no feeling, good or bad, last forever. This too shall pass.
Asking for Help
You may need help processing your feelings and working through your grief.
Healing from loss is a road best not traveled alone.
If you are not sure where to start, here are a few suggestions:
Contact your insurance company. For a list of in-network counseling or mental health professionals in your area, flip your insurance card over to the backside and contact the Member Line to ask for assistance.
Reach out to your clergy member or pastor. Most churches have either clergy or professionals trained in bereavement counseling or can provide you with a list of referrals. Many also have small groups to address grief and loss.
Consider Telemental Health. Telephone, video, and online therapy have been around for many years but the availability of such a resource has greatly expanded since the pandemic. Many mental health professionals have added these virtual services to their traditional in-office sessions out of safety, cost-effectiveness, and convenience for clients. To learn more about telehealth counseling services, check out our Resources page.
Educate Yourself
Once you have a grip on your grief, you can find your footing with faith. As Believers, we are not granted amnesty from trials and tribulations in this life. In fact, quite the opposite. We should expect them.
However, this does not mean we fight our battles alone. Our Redeemer reminds us that we have nothing to fear from this world, as He has overcome the world (John 16:33).
Standing on your firm foundation of faith, you are now ready to educate yourself about your child’s diagnosis.
Learn all that you can about your child’s diagnosis and about diagnoses that may co-occur. Once we received the diagnosis of Developmental Coordination Disorder, I felt relief. Although I had some concerns with labeling in general, as a clinician I knew labels when properly assigned, could be a significant asset in securing funding for resources, and ensuring proper referrals for interventions. Now that we had a common focus with medical and therapy professionals, we could pursue a “team effort” in our son’s care and support a better treatment outcome.
I asked our Occupational and Physical Therapy crew for resources and devoured everything they gave me. I read tons of books, researched articles on Pinterest, visited DCD and Dyspraxia awareness websites, watched hours of YouTube videos depicting Theraplay techniques, and joined support groups on Facebook.
Get to know the learning differences community. My desire for knowledge, community, and support led me to Dr. Priscila Tamplain, a researcher and professor in the Department of Kinesiology at The University of Texas at Arlington. Dr. Tamplain is one of the few research professionals in the United States specializing in Developmental Coordination Disorder. She runs an after-school program called “Little Mavs” – “a community-based motor skill intervention program for children and adolescents with movement/coordination difficulties.” A program that our son participated in in the fall of 2021. (For more on our participation in this wonderful program, check out my blog post here.)
Don’t be afraid to dig deeper. As a Licensed Professional Counselor, I am required to complete a certain number of continuing education hours every two years as part of the biennial license renewal process. Workshops in areas related to counseling such as nursing, social work, psychology, education, and occupational therapy are permitted. I use these opportunities to not only expand my understanding of Developmental Coordination Disorder and Sensory Processing Disorder but also to help me learn teaching strategies so I can make modifications and accommodations to lessons where needed in our homeschool.
You do not need a background in education, counseling, nursing, or any other advanced degree (or any degree at all for that matter). All you need is unconditional love for your child and a willingness to learn. Many of these workshops are online and many are written for laypersons. For a list of trainings please visit our Resources page.
To Disclose or Not To Disclose
In my “Living With Labels” series, I talked about overcoming the fear of stigma with the power of faith. As parents, it is our natural instinct to protect our children from all forms of harm, physical, emotional, spiritual, and mental. This also includes judgment.
Acceptance is a universal human need. And when you are a parent, the desire for the world to love and accept your child as you do is paramount.
Yet, we live in a world where this need often goes unmet. So what do we do?
When the world does its best (and it will) to knock you down, you get on your knees so that you may learn how to stand. Stand in your faith. Stand in His love. Live by His grace.
Before we get to the “how” and “when,” we must first address the “if” when it comes to whether or not to share your child’s diagnosis with others.
Talk it over as a family first. This includes getting your child’s input. After all, disclosure is about them and for them. As much as we wish we could keep them safe with us forever, the reality is babies don’t keep. If we do our job right, our children will one day leave our homes and successfully begin a life of their own away from us.
The choice to disclose is deeply personal and one each family must make together after careful consideration.
When it comes to the sharing of personal information, I have found a range. Some families prefer to keep the information private, disclosing only on a strictly “need to know” basis, such as to medical or educational professionals. Other families fall somewhere in the middle, adding close family members and friends to the “need to know” list slowly over time. Finally, there are those who embrace the decision to be fairly open. While not necessarily flying a flag over their personal residence, they are simply not opposed to speaking freely. They own their labels, feel empowered by them, and feel no need to hide them.
In our family, we fall somewhere right in the middle. After our initial diagnosis, we took our time opening up to immediate family and eventually close friends. Two years post-diagnosis, I found myself advocating for support services for my kindergartener in a small private school. Three years post-diagnosis, I became a homeschool mom. Six years on, I launched a homeschooling and advocacy website and blog, quickly followed by a podcast and YouTube channel.
As you grow in your knowledge, you too may find yourself inspired to educate others about your child’s learning differences.
Advocacy: Our Family’s Decision
When it comes to Developmental Coordination Disorder, I am especially passionate about getting the word out so to speak. While I protect my son’s identity in terms of the digital content I create, I feel the benefit of spreading awareness is the greater good. I step outside my comfort zone with every blog post I write, every podcast episode I record, and every YouTube video I film.
DCD is a commonly occurring disorder, with experts estimating anywhere from 1 in 20 to 1 in 10 kids may fit the criteria for the diagnosis, but very few medical and educational professionals are familiar with the condition. If the professional community is unaware, you had better believe laypersons are even more oblivious. I hope to change this reality through my advocacy work. Doing so requires me to put a bit of my life on display.
But I choose how much to put on display.
If you and your family choose to disclose, start small. Begin with your inner circle and work your way out. Family members, grandparents, and close friends are always a good place to start. As your comfort level grows, you may choose to move on to playgroup moms, church friends, and fellow (home)school parents. Granted, I do not mean to imply you should walk around handing out flyers (unless, of course, you are at an education or medical conference, then by all means go for it!)
The bottom line is, when it comes to disclosure, you have to choose what is right for you, your child, and your family. You can throw your hat in the advocacy game like I have by revealing bits of your experience and journey without necessarily showing all your cards. You might be amazed at just how many families you impact.
COMING UP
There is great comfort in community. Join us next week for Part 2 of our “Advocacy” blog post series, “The Role of the Parent – Recruiting Support” where we will focus on the struggles of dealing with doubters, naysayers, and critics.
LET’S KEEP IN TOUCH
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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!
