I found myself in a remarkably interesting position when my son was diagnosed with Type One Diabetes. Every fear I had ever dreamt of came true in those first few days on the day of and following his diagnosis. While there was a large portion of our family who stepped up to support us and help us in any way they could, as quickly as that help came, that is how quickly it disappeared.
I don’t mean this meanly, I promise. We love our families and they are the best of intentioned at any given time. However, there seems to be a large barrier now between what help is desired to be given and what is only hypothetical. This type of barrier can only be felt by someone who now parents a child with special needs. Literally, not a single other person can relate to this type of feeling or lifestyle until they live it. It is truly complex, overwhelming, lonely, and can be very frustrating.
Why is this?
Why are our lives with children who have special needs so difficult, especially in terms of social isolation? This is harder to answer in complete detail because the simple answer is that unless you live this life, others just not get it. They do not understand what it feels like to spend your day in constant fear of the worst-case scenario. It goes beyond the everyday fears that come with parenting and becomes a whole new level of constant fear of very realistic scenarios.
For us, the fear is literally life and death. If we miss a low blood sugar “crash” and he goes too low, too quick, he can seize, become unconscious, go into a coma, or die. It does not take hours, days, or months to happen; any insulin overload in his system could quite literally kill him in a matter of minutes. That is fear that cripples even the strongest of parents and makes them take safety (and anxiety!) to a whole other level.
One of the statements I hear most is, “wow, I couldn’t do it if I was you”. While flattering, this is simply untrue. You would do it if you had to. Because prior to November 1, 2017, I would have said the same thing. Statements like this, meant to fuel and illuminate a parent’s strength, often make (me personally, anyways) a parent feel the strength of the barrier that now separates you, a parent of a “healthy” child, from me, the parent of a child with special needs. This does not have to be though. You can support a parent who is enduring a difficult time or a parent who you cannot causally relate to in several ways.
How to best offer support to a parent of a child with special needs
Empathize if (and only if) you truly can
Stories of other parents, even if they are not you, are often very comforting and provide a feeling of not being alone, a feeling we experience frequently! Most of us will welcome insight or stories from another parent’s journey
Respect. Do not pity!
Pity is the highest form of degradation to many parents of children with special needs! Instead, respect a parent’s strength, resilience, and all-around superpower and highlight that strength to the parent!
Offer the help that is suitable for you
You do not need to move heaven and Earth to give us the help you know we need (hello, babysitters, anyone?!). Instead, if you want to help, offer what is within your realistic abilities. Maybe you know that walking the dog is something we struggle to find time with during the week. An offer to help could be to walk their dog once a week or bring them to a grooming appointment. Perhaps the parent’s older child has soccer once a week and you offer to take them to practice every other week to lessen the parent’s obligations. We know it may seem intimidating to offer help when you know all that encompasses any given day of ours, but truly the little things can be an enormous difference in our mental health
One of the best things we can get is just a listening ear. You do not need to understand anything about our life or our child’s condition- just listen and let us vent. Most often, we must keep what we are thinking or feeling bottled up as we move onto the prioritized task- that is our child with special needs! The opportunity to vent about all that we cannot control helps boost mental and emotional health in a productive way
Talk about your life!
Life and children are not a competition; your “healthy”, “normal” child is a blessing as much as my child with special needs and we want to hear about your children and your life! All the bumps, bruises, and good times- please do not leave out details about the good in your life for our “sake”. It is not offensive to talk about your life and your children. If you are truly our friend, we want to be a part of it all. Sheltering us away from the good of your life to save our mental health just makes us feel that much more isolated and alone. We promise, even if our lives are 100% different, we want to be here for you. We will be there for all your life events and challenges as much as you’re trying to be supportive of ours!
What you should try to avoid when trying to support a special needs parent
Please do not compare us to someone else if you do not understand the condition. For instance, telling me your grandmother was a Type 2 Diabetic who was cured/taken off insulin therapy by walking every day is not helpful. My son with Type 1 Diabetes is insulin deficient, not resistant and he will never be able to “cure” his diabetes with diet or exercise. Your neighbor being on XYZ insulin pump though? Super cool and someone like me would be highly appreciative of knowing about this, if only for the name of the pump you happened to catch so that we can read up on it!
Try to avoid suggesting “fad” treatments for the condition at hand that you saw on Oprah or in a magazine. Unless you read it in a medical journal or heard it from a medical professional, it likely has little meaning for my son’s life. Believe us when we say we have investigated every possible solution, treatment, or potential ‘cure’ for our child’s condition! The suggestion of the fad diet you read about may have pure intentions. But it sometimes implies we have not done enough for our child or that we are unwilling to keep looking further for a cure or treatment! Friendly PSA: cinnamon does not cure Diabetes?
It is almost amusing to write about “tips and tricks” for supporting a parent who has a special needs child; like we are on our breed of human that needs a handbook to interact! We do feel that way, though, at times and truly the more you try to incorporate us into your lives, the better we can handle what we do every day. We do not want to be patronized and have those in our lives feeling as though they walk on eggshells. Finally, we are real people with real feelings and emotions. Though our lives are vastly different, we want to feel as though we are in this together.
Do you have anything to add to this discussion? What behaviors do you see from others that are well-intentioned but make you feel angry/hurt/upset? What tips would you add to this list?