Here are some things NOT to say to cleft parent (or any special needs for that matter). I want to note that these things are not meant to be said in a negative connotation. These things are usually said because others do not know what to say or what to not say. They are just trying to help us feel better. As I noted in my previous post I stated that it is better to come and say the wrong thing than to say nothing at all.
1. “I’m Sorry.” “What a Shame.” “How sad.” “Poor thing. “
These statements convey pity and we do not want people feeling sorry for us. We share because we just need someone to talk to.
2. "It could be worse" or "You should consider yourself lucky that it is 'just' a cleft."
Many people just believe that this is a one surgery repair and then everything will go back to what they consider normal. When you say that it could be worse, we do not disagree on that there are parents out there in worse situations. What the problem is, that you are belittling or dismissing what we are going through because there are others that have it worse. Just because there are others that have it worse, does not mean what we are going through isn't hard.
3. "At least your other child or children are fine."
Thankfully the other children did not have to go through this, but does that mean that this child is less important than the others? That is like saying you have a pair of shoes that the dog chewed up and saying to the person, "Well at least you have another pair!"
4. "I heard it runs in families," "What did you do wrong?" "Maybe you did something in your pregnancy."
Please do not place any blame on the parents. Believe me, we are already thinking of what we may have done to cause this. What could I have done differently? What did I do wrong? We do not need to hear it from others.
5. Avoid cliches and sayings
I can guarantee that we have heard them a million times already. Statements like “God gives special children special parents.” Are old and tired. I have personally heard this one so many times and I just hate it. What about the parent who chooses not to take care of their special needs child and walks away? Are they special? What makes me more special than others? All kinds of people must go through different challenges. Some people are nice, some people are weak, some people are strong, some people are horrible. Just because my child was born differently does not mean I am special.
6. "You are a saint, I could not do it."
When you say that I am a saint, to me that says that only a saint would be able to take care of my child. I am a mother and I am taking care of my child like any other mother would do. We cope with what we have to deal with. Maybe it is not so easy for me either. Just because you do not see it with your own eyes or hear it yourself, does not mean that I am not struggling at times. Every mother struggles. Just because I have a special child, does not mean that I am exempt from that.
Now that you know what NOT to say, here are some things that will help! Your best friend just called you and said that her child was born and had a cleft lip that they did not know about. First of all congratulate her on her brand new baby!! This baby should be celebrated just like every other baby!
Actions speak louder than words!
Remember that actions can prove that you are there more than just a few words. Bring over dinner. Watch the baby while she takes a shower or a nap. Just sitting with her and watching TV so she is not alone. Go grocery shopping or grab diapers at the store for her.
2. Read up on the child's diagnosis.
Those that show a genuine interest in what the child is going through or what they have been diagnosed with will mean a lot to the parents. Ask the parents questions about the child's condition to show that you really want to know more.
3. Compliment the child and the parents on something.
Compliment how the baby is lucky to have them as parents.
Tell me more about your child.
You will make a difference in this child's life.
You can overcome this challenge and the challenges in the future.
know that your child will have many challenges ahead, but he will be able to get through it with you two as parents.
What he needs the most is love and you have so much of that to share.
4. Notice similarities between the parents and the child.
He looks like you!
He has your nose.
He has your eyes!
He smiles just like his dad!
What a beautiful child. You must be so proud!
5. Accept the child and tell the parents
He will teach us so much!
We love him with all of our hearts.
He always brightens my day.
I am so lucky to be in his life.
I love him so much.
I am so glad you allowed me to be in his life.
6. Let the parents know that you do not know their feelings, but will be there for them.
Do not pretend to know what the parents are going through. Instead say something like the following statements: Understand that the parent may be going through a grieving process.
I know we cannot take this hurt away, but I really wish I could
It is okay to cry and be afraid.
He will fill you with so much love that you will be able to get through this.
I can see what you are going through. I do not understand it completely, so please tell me if you need something.
I support you.
Let me know what you need
I am here if you need to talk.
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