What do I say to friends and family?
Has a friend or family member just received a diagnosis for them or their child?
The Friends and Family Friday blog has been in the works for a very long time. The intention behind this is to help educate because knowledge is power. There are some tough times when you want to say the right things, but you just don’t know what to say. There are also many times when we as families of special needs children hear something that really grates on our nerves. Some of us may tell you this and others may grit their teeth and smile, and vent later in a group of their peers.
What should you say to friends and family?
In our house, we try to remember love and grace. So many times, people don’t know what to say to us when we say, “Oh, he has non-cancerous tumors inside his brain called tuberous sclerosis and autism.” To us, this is common knowledge, and we deal with it daily, but to them, I’ve just dropped the bomb that my child has brain tumors, and it’s scary! We work to remember when people speak to us, they are coming from a place of love and genuine concern. That they really might not know what to say!
I have taken a couple of polls in private groups that I belong to and asked parents, what do you wish people would not say to you, and what do you wish people would say to you? And thus, the Friends & Family Friday blog is created! I also hope that you will come from a place of love and grace when you’re reading the blog. If you agree with something fantastic, please like and share and if you don’t agree with it that is fine too. We are all entitled to our own thoughts and opinions, thankfully, and I hope that you’ve read something that makes you think the next time you encounter a special situation!
Day of Courage internal challenge
Well… all of what we have spoken about is nice and dandy, but what I haven’t shared with you is the “Day of Courage internal challenge” I gave to myself! On the 29th I woke up and thought:
“It’s not very courageous of you, Wendy if you don’t share what you are trying to do here.” So here it is!
What do you say when you don’t know what to say?
What do you say to parents with children with disabilities?
I’ll cut right to it and then give you some explanations.
When a friend or family member is telling you about a diagnosis or a change in diagnosis or condition, and you don’t know what to say, a great response is:
“I honestly don’t know what to say to you, but know that I love you. I will be here for you however you need me, and let me know what I can do to help!”
So there, you can stop reading since you know what to say or you can continue to learn a little more…just kidding please keep going!
By you saying those words, the weight of so many things is released.
How can I help my friend with a special needs child?
#1 The awkwardness of the parent’s thinking: “How are they going to respond, what am I going to say back, etc.”
You will most likely see the shoulders relax, their posture change, maybe a few tears in their eyes and a big “Thank you, I appreciate it!” And then your next step is to go out and get them a little gift card, a gift, a meal, a simple card, or anything that you know they would appreciate. This also says I’m thinking about you and know that you’re not alone!
So many times, after a diagnosis, parents feel so alone and sometimes abandoned. Friends and family may not contact them for fear they will be interrupting a doctor’s appointment or a rough time when now is when we need friends and family by our side supporting us and someone to check in and say, “Hey how are YOU doing?” Try not to wait for the parent to contact you to let them know how they are doing, a short text, email, or phone call to check in is greatly appreciated, and we can return the message when it’s convenient. This simple measure can mean so much!
Something that stood out to me…
I remember after the 36 hours in the hospital with my son getting diagnosed I had lost several pounds from not wanting to eat and could probably count the number of hours on both hands that we had slept. We ordered takeout on the way home. Bless the lady that day when I went in to pick up the food. She looked at me and said, “You look like life has been getting the best of you. Dinner is on me, go ahead and have a great rest of your day.”
Um…wow…so yes, I probably looked a little rough, but the generosity of a stranger is one I will never forget.
#2 Kind deeds go a long way with someone going through a rough time.
I had some friends call and ask what they could do for me and my response was usually, “Thank you, but I don’t know.” Then they would show up at my house with some freezer meals. A friend walking by the house stopped by to give me a hug and let me know that they were thinking about us. A hug that can stop the world for a few moments is such a blessing. My family going together for Christmas that year and giving us gift cards from everyone in the family because we could use them more than they needed things is something we’ll never forget.
I could feel like a human again
A different time, when my son was in the hospital because of a febrile seizure, my girlfriends whom I was supposed to be out on a girl’s night with brought me dinner and sat with me in the hospital lounge. We talked about my son, but then we were also able to sit and talk about other things and for a few minutes, I could feel like a human again, instead of someone who is constantly watching monitors and stats. At other times, they have offered to take my other children to play…. all this said because I may not have been able to think and tell you exactly what I needed, but their generosity is something I still remember to this day and can have a big impact on a parent’s sanity!
We may not remember the phone calls to friends and family letting them know what was going on, or the fact that you came to visit in the hospital. What we will remember are the hugs, good wishes, and acts of kindness from those around us…what could have been a very grave day and diagnosis was elevated by the kindness and love of those around us.
Special needs family support
So, when you don’t know what to say, remember that it’s ok, this isn’t something you’ve been through either, most likely. Remember to show love and grace and be the friend or family member you have always been because now more than ever, we want our friends and family to love us too.