My loved one just found out their child has special needs. What can I do/say? What should I not do/say?
First off, kudos to you for wanting to be the best support person you can be for your loved one. Finding out your child has special needs can be hard news to take. Feeling helpless on the sidelines can be too. It can be hard to know what the right and wrong things to say are so hopefully this list will help you figure out how to help your loved one.
1) If they are pregnant or just had a baby: Congratulate them.
They are having/had a baby and that is a wonderful thing! The baby may have special needs, but they are still a baby and need all of the same things as a typical baby would need: food, clothing, diapers, and love…lots and lots of love. The baby may have extra appointments or health issues, but that does not change the fact that they are a baby with a family who loves them.
It was interesting the differing reactions we received when people learned of Mary’s diagnosis. Many people said “I’m sorry”, intending it to be that they were sorry we received news we were not hoping for. This is a normal reaction to difficult or heavy news like this. Those who had a family member with Down syndrome told us “Congratulations!” and “Your lives will be so blessed.” They treated her like baby first and foremost. They treated her diagnosis as something separate from her, something we were still figuring out how to do. Her diagnosis does not define her, it simply is.
2) Be there.
Ask them how they are handling the diagnosis. Tell them that you are there if/when the need to talk. The best thing you can do is to be there for them and let them feel what they need to feel and without judgement.
When we found out that Mary has Down syndrome, we went through a roller coaster of emotions. One of the first emotions we felt was grief. Grief for the child we were planning for, grief for the future we thought we would have. Many of our friends told me this is a normal part of the acceptance process; except one person who criticized us for feeling that way, calling us horrible people for it. We ended that friendship, which was difficult for us but necessary. However, many of our friends were there and listened to us as we processed the news. They held me as I cried. They never told us we were bad people for feeling upset at the news. They never told us our lives would be over either. They were simply there, a comforting presence. They let us feel everything we needed to feel as we reached a state of peace and acceptance.
3) Celebrate the victories with them no matter how big or small.
As a parent of children with special needs, things that seem like nothing to someone with a typical child become a big deal. If they excitedly call you up and tell you that their son/daughter just said “Mama”, be happy and excited with them! Saying “So?” or seeming disinterested minimizes the work they did to reach that milestone.
I remember the first time Alex said “Mommy, can I have a snaCK?” Yes, there was emphasis on that final sound. I was so happy! We had been working for months on those final consonant sounds in speech therapy and at home. That simple word, that final sound, made me feel proud. It showed me that the therapy and the practices were working. I excitedly posted about it online, wanting to share my proud moment with my friends. And they were just as happy for us.
4) Don’t put them on a pedestal.
Something we were told often after Mary’s diagnosis, and Alex’s diagnosis to lesser extent, is that “God gives children with special needs to special parents”. I am not special. I was not granted super powers the moment I found out my child has special needs. I am simply a mom doing what it takes to raise my two children. Putting a parent on a pedestal like that can put extra pressure on them to appear like they have it all together, when they might be struggling not to fall apart.
Another similar statement is “God does not give you more than you can handle”, which is incomplete phrasing. “God will not give you more than you can bear without his support” is a closer representation of the biblical phrase (Bryan is my source and the resident Christian in our household, 1 Corinthians 10:13 and Matthew 11:28 for those who wish to look it up. Footnote from Bryan; 1 Corinthians 10:13 actually refers to temptation, not the trials and difficulties of living life, and is often taken out of context in attempt to help comfort people who are going through hard times.). Assuming the person is Christian, this is a phrase that needs to be used with care. For some, it may be of comfort. For others, it may cause frustration and questioning especially if they are feeling overwhelmed with what the future holds. They may be struggling with their news and wondering how much more they can take. Again, they may feel pressure to appear like they have it all together because “God can’t be wrong. I have to be able to handle this.”
A parent should feel like they can reach out to the people around them for help when it feels like too much. It gets lonely when you feel like you are on a pedestal.
5) Use person first language
It is common to say “Down syndrome baby”, “Down’s baby”, “Special need child”, etc. This may seem harmless, but it carries a negative connotation with it. By putting the diagnosis first, you are defining the child by their diagnosis. Mary is not Down syndrome. She has Down syndrome. Alex is not ADHD, he has ADHD. They have these conditions, but they do not define my children. Alex is kind, thoughtful, hyper, loving, and a big brother. Mary is sweet, stubborn, a little sister, and still developing her personality. When you define a child by their disability, you limit their potential. All children deserve the chance to bloom.
It does take time and practice to change the thinking. I still catch myself and will correct my phrasing when I say it. I am not perfect, but I try and that is the important part.
Hopefully this list will help you as you support your loved one. The path of special needs is not easy, but it is easier when supported by those around around you.