Advocacy – The Role of the Parent, Part 2: Recruiting Support
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.
Today, in Part 2, we talk about the importance of community and help you find ways to recruit support, including how to deal with naysayers, doubters, and critics.
No One Is An Island
In the early years of my son’s diagnosis, I remember feeling incredibly isolated. While my marriage is strong, my family supportive, and my network of “mommy friends” amazing, I always felt as if something was missing.
Because it was.
I needed a network of parents that had stood before where I was currently standing now and who could tell me, “I know you feel in the dark of it right now, but here is some light.” Don’t get me wrong, I am thankful for my loved ones and the unconditional love and support they provide, but as a mental health professional, I also understand the difference between sympathy and empathy.
Sympathy says “I cannot imagine what you are going through. This must be so difficult for you. I am so sorry. How can I help?” Sympathy recognizes and acknowledges another person’s feelings. Sympathy for another’s plight motivates us to offer comfort and assistance in situations foreign to us. For example, I have never experienced homelessness, but I can endeavor to be sympathetic by donating to a local shelter or food bank.
But there is a distance built-in to sympathy. Sometimes the disconnect is unintentional, such as if one cannot truly relate to another’s experience as they have not shared a similar experience. Other times the boundary is distinct and intended, a conscious effort to restrain one’s feelings.
Empathy, on the other hand, is much more intimate. Empathy means you actually share in and understand another person’s feelings. Either through a shared experience or a similar experience, you have the ability to “put yourself in another’s shoes.” You lament in their sorrow, and you rejoice in their triumphs.
Empathy says, “I see you because I have been you” or “I am imagining being you” much in the same way a performer may utilize method acting to prepare for a role. It is a profoundly intense experience with the purpose of creating a deeper connection.
Empathy listens without the need to “fix.” Empathy understands. Empathy embraces the uncomfortable and sits with you in the dark to keep you company until you are ready to turn on the light. Empathy recognizes the power of a quiet presence is often greater than any spoken word.
Empathy is also exhausting.
Both sympathy and empathy have a purpose. One is not better than the other. What is more important, is the context in which we apply them. The restraint of sympathy allows us to learn about and act on the injustices and suffering in the world without burning out. The intimacy of empathy, conversely, enhances our relationships with those closest to us.
In building your support network, it is important to remember the “network” part is just as important as the “support” part. Just a no one person is an island to go through the trials and tribulations of life alone, no one person can be your sole source of comfort.
Finding Your Village
Ideally, your support network would include both professional and personal resources. Building up a network affords you multiple buckets from which to draw comfort and helps keep the relationships in your life healthy and supportive.
When it comes to finding support, it is essential to have established your stance on disclosure first. Complete anonymity is not entirely possible when you are reaching out to others, but you can limit how much information you are willing to disclose. For example, when reaching out on social media, you can create a separate profile from your personal one, leaving out specific identifying information beyond the basics, and abstaining from posting personal photos of your family.
Not a social media fan? Not a problem. Type your child’s diagnosis and “support group” into your favorite search engine. For example, my Google search for Developmental Coordination Disorder led me to DCD Kids, a website dedicated to raising awareness of Developmental Coordination Disorder through the pillars of Awareness, Advocacy, Action, and Achievement. After a few emails and phone calls, I formed a bond with DCD Kids founder and fellow mom, Sue Hille. To learn more about Sue Hille and her amazing advocacy work, check out my blog post here or my Salt & Light Spotlight podcast episode here.
Give As Much As You Take
When it comes to community, finding the “right fit” is like forming any other healthy relationship, it takes time. Try not to be discouraged by a few false starts. The world is a big place. Keep looking.
If you happen to land in a support group where you feel safe and supported, I would like to share a bit of advice. When you have been on the island of loneliness for a bit, it is easy to become incredibly excited about connecting with others who share in your experience.
To put it politely, when seeking advice, try to remember information should flow both ways. By all means, post your questions. The group is there for you!
But, remember you also have something to offer, no matter how small and no matter if the diagnosis is new to you. Resist the urge to pop into the group only to gather quick answers and leave. Read through the posts of the group and respond to a few, even if it is to only offer a word of encouragement.
The sharing of information, including giving and receiving feedback with grace, is a skill that takes practice.
Bottom line? Give as much as you take.
Dealing with Naysayers, Doubters, and Critics
This section of my post is going to be incredibly brief. And for a good reason. When it comes to naysayers, doubters, and critics:
You DO NOT have to PROVE anything to anyone.
You DO NOT have to EXPLAIN yourself to anyone.
You DO NOT have to DEFEND your parenting decisions to anyone.
Period.
Questions, doubts, interrogations, and rude comments are all unacceptable and inexcusable.
And you do not have to listen to any of them.
It is not your job to convince or change these people’s perspectives. Save your breath, energy, and time to spend with those worthy of receiving it. These are your gifts to give. No one is entitled to them. Dispense them with discernment. You can pray for the haters, offer forgiveness, and grant grace while also walking away to live your life in peace.
That’s called setting boundaries.
What To Do If Your Inner Circle Is Not Supportive
Now, this is a bit harder.
In an ideal world, we would all be accepted and loved unconditionally. Unfortunately, we do not live in an ideal world. We live in this one.
While I have stated that the majority of our family and friends were accepting and supportive of our son’s challenges, a handful was not. Our family has dealt with our fair share of unsolicited advice, inappropriate comments or questions, and, in one case, a complete denial of our son’s diagnosis (i.e., attention-seeking on our part). Holy Munchausen by Proxy, Batman. That one did NOT go over well with me.
Thankfully, this was a small minority of extended family members that we did not have to interact with on a regular basis. (This was one of those times that I was extremely grateful to live several states away safe in the knowledge that I would not need to engage with said family members on a regular basis).
But what if it is a member of your inner circle who is not receptive?
If it’s your spouse. This is the BIG one. When it comes to your inner circle, it does not get any closer than your spouse. In Part 1, I talked about dealing with the “big feelings,” that can come with a new diagnosis. Just as you may be grieving, so might your spouse be grieving as well. Sometimes all we need is grace, permission, and the patience of time to work through our grief so we can reach acceptance. I firmly believe in the power of praying for your spouse.
Communication is key. When we are in the thick of a struggle, communication is often the first to go. In our overwhelm, we may withdraw from communication completely (i.e., shutting down, stonewalling) or communicate poorly (i.e., scapegoating, blaming, yelling).
We’re tired. We’re afraid. We feel so very alone.
If this sounds like you and your spouse, let me tell you, you are NOT alone.
Reach out for help. There is a list of counseling resources right here on my website. Speak to a pastor or clergy member at your church. Call your insurance company for a list of in-network counseling professionals in your area. Bottom line? Do something. With action, we have help, hope, and guidance for how to work through our challenges so we can move forward.
If it’s your parent, your close friend, or an extended family member. While these individuals are a part of your inner circle, and sometimes may even be a source of comfort and support when you are working through challenges with your spouse, it is wise to first work on the innermost ring of your circle first before tackling these outer rings. I am referring to the relationship with your spouse.
In therapy, the fancy term for this is triangulation. Personally, I prefer to call it what it is: a bad idea that does not honor your marital relationship.
Two is company, but three people (or more) in a marriage makes quite the crowd indeed. While not necessarily ill-intentioned (although in some cases it may be, I have been involved with my fair share of dysfunctional family dynamics both personally and professionally), inviting friends and family members to take part in decisions that should remain between spouses is never a good idea.
Work through any problems with your spouse first. Period. Then, as a united front, you can tackle together whatever may come your way. You will become one another’s champion, iron sharpening iron, both on your child’s team.
United you can now agree on if, what, how, and when to disclose information. You can encourage one another when your attempts to educate fall flat. You can comfort each other when one of you feels rejected or judged. You can remind one another that WHOSE you are is bigger than WHO you are, that you are fearfully and wonderfully made, and that you need no outside approval.
Good Fences
What if after all of your patience and willingness to answer questions, the attempts to educate, and the extension of grace, this person or persons continues to present an unwanted (and unnecessary) stressor in your life?
You draw a line in the sand.
You set boundaries.
Setting boundaries is no easy feat. It requires discernment, self-awareness, self-confidence, and grace. Depending on the nature of the relationship (distant versus close relative or friend), setting boundaries will be all the more challenging.
Learning how to set boundaries is an ongoing process that requires commitment and consistency. It is a skill that takes time and practice to learn (and sometimes relearn) throughout the course of a lifetime.
Each boundary may be different according to each relationship or situation. As a Licensed Professional Counselor, I have dealt with setting boundaries from both sides of the therapy couch so to speak. I have helped others set boundaries with toxic family members. I have also been through therapy several times in my life to learn how to set boundaries with toxic members of my own family.
Find a professional, a therapist, a counselor, or a psychologist, to help you learn this vital life skill.
COMING UP
There is great comfort in community. Join us next week for Part 3 of our “Advocacy” blog post series, “The Role of the Parent – Teaching Self-Advocacy” where we will 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.
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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!
