If you’re a parent of a special needs child, you’re likely accustomed to receiving unhelpful platitudes about your medical, lifestyle, and child-rearing choices. Like many, you’ve probably been given unsolicited advice, asked offensive (albeit naive) questions, and offered unhelpful judgment by well-meaning friends, family members, and even strangers.
If you find yourself frustrated or saddened by these off-handed remarks toward your child and parenting, we’ve compiled a list of statements you need to hear right now as you navigate the world of special needs. We’ve also included some of the most common statements made by those who have good intentions, but often result in special needs parents feeling misunderstood. Each section offers insight, encouragement, what the commenter likely meant to say, and a helpful reframe.
We hope this list will help you know that you’re not the only parent of a special needs child who sometimes feels misunderstood, misheard, and miscommunicated with.
Things You Need to Hear:
“You Are Not Alone”
You’ve likely been in a conversation with a friend or family member during which it was hinted that you were incapable of performing your parental role adequately, when what you desperately needed was empathy and compassion. What every special needs parent needs to hear is: “You are not alone,” and perhaps, followed by an offer to come over to the house to help clean, babysit, or to drop off groceries, right?
In vein with this statement, you’ve probably heard a myriad of suggestions or recommendations based on another parent’s personal experience. You don’t always need advice. You need your community to just be “in your corner.” What you want your friends and family to say is, “I hear you, you are not alone.”
“You Don’t Have to be Perfect”
When you are expressing frustration or discouragement in parenting or weariness from your child’s diagnosis, it can be a helpful, gracious reminder to hear that your performance as a parent is not a “win or lose” situation. You don’t need surface-level platitudes such as, “It will be okay,” or “Everything will work out.” Your current efforts are, in fact, good enough. What you desperately need is: “You don’t have to be perfect.”
“How Are You, Really?”
Being a parent of a child with special needs often feels like a daily battle with constant obstacles. Remind yourself to celebrate the little victories, and find people you trust to regularly check in with. Instead of the typical American greeting (“Hi, how are you? Good.”), you need family and friends who will converse with authentic empathy. What you want to hear is: “How are you, really?” followed by enough time and space to express the truth of your situation.
We’re asking you here, how are you doing? Leave a comment to let us know! We love hearing from parents.
“Trust Your Instincts”
You may often feel like you’re swimming in a world of medical advancements, opinions from family and peers, endless blog posts and online articles on “best practices,” the latest education development, or diet/supplement suggestions. In the world of information, it is so easy to become overwhelmed or feel guilty that you’re not doing it right, or doing enough. A simple, “You’re doing great,” or “Trust your instincts” goes a long way! Special needs parents need ample encouragement and empowerment.
Things You Don’t Need:
“He/She Looks So Normal”
Why does this statement feel so frustrating? “He/She looks so normal,” along with “You would never know just by looking at him/her,” is highly detrimental and painful. This insinuates that there is a “normal” child, and you just got unlucky.
Additionally, there is a dangerous assumption that because a child “looks normal,” they somehow should “act normal,” which results in a lack of patience and understanding from any persons who are unequipped to deal with a special needs child’s behavior. Here’s what you’re dying to hear from your well-meaning family and friends: “He/she looks like they’re doing great. You must be so proud.”
While the intention of apologizing to a parent with a special needs child might be pure, there is no great way to respond to this statement. Right? Do you say, “Thank you,” or “It’s okay,” or “Don’t feel sorry…” or “I appreciate you apologizing for my child being born this way…”?
Don’t worry, you’re not the only one feeling frustrated by the panicked, inauthentic apology from strangers, friends, and family. Gently redirect those people you interact with regularly, and try to brush off the lady in the grocery store who felt the need to say, “I’m sorry” to you and your child. What you need (and most likely, what these people are trying to communicate) is a reminder that you are strong and the way you love your child is beautiful.
“Have You Tried ________?”
As previously alluded to, you are likely inundated with information, suggestions, and opinions wherever you go. Unsolicited advice is often more damaging than helpful, as it furthers the internal narrative some parents of special needs children think of “never good enough.”
“Have you tried ________?” can feel so discouraging. Just remember, you’re trying it all. You’re doing your best. And your best is good enough!
“We’re Only Given What We Can Handle”
This statement can feel dismissive of the intense emotional, mental, and physical journey you embark on daily. At one time or another, each one of us can feel like we aren’t able to handle what we’ve been given. “We’re only given what we can handle” simply isn’t the truth, and it’s okay if you feel overwhelmed.
If you find yourself struggling and exhausted, try reminding yourself of one of the aforementioned positive statements of affirmation and encouragement.
Special Needs Parents are Superheroes!
All in all, what you need in conversation isn’t perfection, but rather gentle curiosity and thoughtfulness. You don’t want judgment or investigative questions. Instead, you desire encouragement and affirmation.
Above all else, don’t forget: you are a superhero; sometimes you just need someone to remind you.
If you are the parent or caregiver of a child with unique medical needs, Evergreen Home Healthcare can come alongside you to meet those specific needs. We would love to be a part of your journey as you love and care for your little one. Reach out today and connect with one of our equipped staff members.