Parenting is a challenging journey in itself. When you’re raising a special needs child, those challenges can be even more complex. My advice, “Don’t say this to parents of a special needs child!” In this blog, we’ll explore six things you should avoid saying to these parents. We will also look at tips on how to offer support and empathy instead.
Special needs children require unique care and attention. As a parent of a differently abled child, I can attest to how challenging it can be. Parents or caregivers often face a multitude of emotional and practical hurdles. While I believe most people have good intentions, there are some things you should never say to the parent of a special needs child. These well-meaning but potentially hurtful comments can add to the daily stresses we already face.
“I know exactly how you feel.”
While empathy is a valuable quality, it’s essential to remember that each special needs child is unique. Their parents’ experiences are just as unique. It further adds insult to injury if the child is diagnosed with a rare disease or disorder. This was the case of my daughter. My thoughts were “How could you possibly know exactly how I feel since it is likely you never even heard of the disease?”
I get it! People want you to feel like they can relate. I guess in some way, awkward and inaccurate as it may be, they want you to feel like you are not alone. However, saying “I know exactly how you feel,” can come across as dismissive and insincere. It can undermine the parent’s struggles and emotions.
Instead, try to acknowledge their challenges and offer a listening ear. Ask open-ended questions like, “How can I support you?” or “What’s been the most challenging aspect for you recently?”
“Whose side of the family does this come from?”
This one is particularly irritating, especially if parents are dealing with a diagnosis that they themselves have never heard of. Asking this question gives the impression that someone is to blame. As if parents of special needs children don’t have myriads of other things to navigate, now we have to somehow defend where the diagnosis came from. News flash, some disorders, namely genetic ones, can be spontaneous. This meaning neither parent’s family has a history of the disease or the disorder.
At a time when parents and caregivers of special needs children just want to be supported, the last thing they need to be doing is answering the “Whose side of the family?” question. They are already grappling with thoughts of self-blame and guilt.
Instead, reassure them that they have your support! If you are curious about the child’s condition, do some research on your own so you can better understand what the child and parents may experience as time progresses. But be cautious not to offer unsolicited opinions or medical advice just because you did some research. Which brings me to my next point.
“Have you tried [insert unsolicited advice]?”
Special needs parents often receive well-intentioned advice from various sources. Unsolicited suggestions about treatments, therapies, or miracle cures can be overwhelming and frustrating. Your intentions may be good but it’s crucial to remember that these parents are likely well-informed about their child’s condition. They have probably already explored numerous options. In some cases, parents can be so overwhelmed with a new diagnosis; they just want to take things in at their own pace.
Remember, life will now look different for them and their families. That in itself can be a challenging reality to accept. I remember doctors handing me a large folder filled with information about my daughter’s condition. They gave us a laundry list of medical challenges she might face. We were even told we might have to move to a new location just to be near a particular hospital. To say we were overwhelmed would be an understatement.
We received all sorts of unsolicited advice, most of which was based solely on the advice givers understanding of her condition and nothing that was research based and specific to her disease. It was like people just wanted to make themselves feel better that they gave advice. You could see that they were quite proud of themselves but oblivious to how it made us feel.
For example, my daughter’s disease affects the quality of the collagen which makes bones strong. Therefore, she is more susceptible to breaking bones, hence the name ‘Brittle Bone’. We would get advice like “Have you tried giving her more milk?” If persons just did a little research, they would realize that ‘Brittle Bone Disease’ is a genetic disorder and cannot be cured or helped by simply drinking milk. I hope you get the point I am trying to make.
If you want to help, ask if there’s anything specific you can do or if they’d like to share their experiences, rather than giving advice.
“Your child doesn’t look disabled.”
Comments like, “Your child doesn’t look disabled,” or even worse “Your child looks normal”, can be hurtful and dismissive. Many special needs conditions are not immediately visible. Some children may appear typical while struggling with unseen challenges. It’s essential to remember that disabilities can be both visible and invisible.
Please know that using the word ‘Normal’ when interacting with parents or persons with special needs is treading very closely to the danger zone of offensive. It can feel very discriminatory and can put many people on the defense if it is perceived as having a negative undertone. I start to ask questions like “What exactly is normal?”
Rather than making assumptions based on appearances, try to engage in conversation about the child’s needs, interests, and experiences.
“I could never do what you do.”
While this statement may seem like a compliment, it can unintentionally put additional pressure on parents of special needs children. They are doing what they do out of love and necessity, and their strength should be acknowledged without making them feel isolated.
Parents of special needs children are just like other parents who want the best for their children, regardless of the challenges they may face physically, developmentally, or otherwise. The “I could never do what you do” statement can feel patronizing. It can come across as “Thank God I don’t have to do what you do”.
Instead, you can express admiration for their resilience and offer your support by asking if they need a break or offering to assist with specific tasks.
“Accept the things you cannot change.”
Since I am a person of faith, I thought I would add this one which I have personally experienced while attending my local church. When we first brought our daughter home from the hospital and news had gotten around that she was born with ‘A Disorder’, I would have well-meaning church members come to me and say, “Accept the things you cannot change”, referring to my daughter’s challenges. Don’t say this to parents of a special needs child!
Even as a person of what I consider great faith, this really was not helpful. Although I knew or had hoped they were coming from a place of caring, it really came across as “Her fate has been sealed. Why even try?” It felt as if they were telling me that I should just accept all the things the doctors said she wouldn’t do and all the doom and gloom that was already overshadowing her future.
Instead, we chose to think the best for her future as parents of faith and truthfully scientific research is always advancing and evolving. If we had just ‘Accepted it’, we would not have celebrated so many wonderful milestones with her and all the other parents of special needs children.
A few ladies from my church cooked a few meals for us when we came home from the hospital and that helped tremendously. While we were processing information and figuring things out, we didn’t have to worry about dinner. If you are a person of faith or attend a church and interact with parents of special needs children, cook a meal, send some flowers, or just offer them your prayers and support. That will go a long way!
Helpful Tips
Now that you know what not to say, here is a cheat sheet and also an awesome educational tool to share with your children. It’s a list of helpful things you can do to help Parents/Caregivers of children with special needs:
Raising a special needs child is a journey filled with unique challenges and joys. The key to providing support is to approach these parents with empathy and understanding. Avoiding potentially hurtful comments and offering assistance and companionship can make a significant difference in their lives. By following these guidelines, you can help create a more compassionate and inclusive world for families with special needs children.