One of the things that I get over and over again is questions from friends and family members of people who have children with special needs – diagnosed and undiagnosed.
They are curious, well intentioned, want to know what’s going on as well as what to do and say. I answer them honestly from the perspective of a teacher, parent of a child with special needs and as a parenting coach and educator for other parents who have children with special needs.
They tend to be surprised and excited to have some direction for how to build relationship with the child while not offending the parents. They appreciate knowing what not to say. They appreciate the truth and I’m here to share some of what I have found to be true and helpful in my own experience.
If you are a friend or family member, chances are that you are with the child and parents and see some behavior that is different. You may notice things about the child that remind you of other children you know…or not. You may think that something is weird or makes you uncomfortable. You may wonder about all sorts of things and may even have questions like…
Why isn’t the child…?
Why don’t they just…?
The parents should….
Maybe I should say…
You may notice these things and want to say something to the parents, offering up some helpful advice or share what worked for you or other people you’ve known who had children like theirs. If the child is not diagnosed, you may feel like you have to say something in order to make sure that the parent knows, that they get help asap for their child or that you can share any information or services that you know of. This is all wonderful and while your intentions are to be helpful, having been on the receiving end of “helpful advice” as well as hearing this from my clients and tele-class participants, no matter how well-intentioned you are in sharing your advice and perspective, it can cause a huge judgement storm which can damage your relationship.
What is a judgement storm?
The parent might feel like you are judging their parenting skills and abilities.
The parent might begin to judge themselves, something they are usually already doing, feeling like they aren’t doing enough or being enough for their children because if they were then the child wouldn’t have these issues.
The parent might judge the child for not being different from who they are.
The parent might judge you for judging them. (See? It causes a great big judgment storm that isn’t helpful to anyone involved!)
You might feel like the parent is unaware. My experience has been that parents are usually aware when something is not quite right with their child. That said, they might not be ready to accept this because if they do, then it’s real, and that is scary because having a child with special needs is a BIG deal to their lives and to what they make it mean about what their future will be.
My personal experience with this took place when my son was 15 months old and wasn’t babbling or behaving like any of the other children in his daycare. I had this sense but I also hoped deep down that he was just like Einstein and was going to be a late talker. One of the caregivers gave me a book one day about a mother’s journey with her autistic child and it was like a punch in the gut. I wasn’t expecting it, was caught off guard and was really angry that she would imply that he had autism. I wasn’t ready for that and for what I was making autism mean for our lives. A few months later, his pediatrician got the ball rolling to do some testing and get services. I was a little bit more equipped for it then because she was a professional and going through the developmental checklist, it was pretty hard not to want to find out what was going on. I share this because at that point in time, I hated that person and it changed our relationship. If you make a comment or gesture that is seemingly helpful like this, it could damage your relationship with your friend or family member. Trust that they will get there and that the professionals will do this unpleasant work. Or don’t. It’s up to you! You might feel like the parent is doing too much, is not doing enough or is making a bigger deal about things than is necessary.
This is their business, their life and they have to decide what works for their family. They are doing the best they can with the information and resources that they have or are ready for. They already feel like they are in a fish bowl when other people are around them with their child. Making comments or giving disapproving looks will only add to their feeling of being overwhelmed when what they need is to feel supported.
Having a child with special needs is very much like playing a game of “Whack A Mole” where one issue or concern is addressed and another one (or five) pops up. What works one day for that family might not work the next day. Taking their child out of their comfort zone into situations like large gatherings or public places puts them in a vulnerable situation because it increases they never know what it’s going to be like – Will it be too loud? Too smelly? Too bright? Too dim? Too many people? Too many children? Too long? etc.
You might be thinking, this is great Margaret! Essentially I need to just sit there and shut up, right? WRONG!! There are so many ways to support them and their child without helpful advice or comments.
How can you support the parents?
You can support them by following their lead. If and when they feel comfortable sharing with you, let them share. Don’t push or pry. If you are curious and are dying to talk to someone about what you notice or why things aren’t handled differently, find someone like me who you can share what you are noticing without the fear of damaging your relationship. Trust that when they have gotten to a point where they can accept and say things without bursting into sobs, that they’ll share.
Support the parents by asking simple questions like “How are you doing?” or “Is there anything that you need that I can help you with?”
Support the parents by not questioning or minimizing their choices…even if you don’t agree with them. It’s hard enough to sift through all of the resources and information out there that if they feel strongly about trying something, again, trust that they are doing the best with the information and resources that they have. They want what you want, for their child to be happy and healthy.
Support the parents by engaging with the child at THEIR level, where THEIR interests are without the expectation that they need to be any different from who they are. You will create frustration and annoyance if you expect the child to meet you where you are or to be like other children/grandchildren that you might have. Try viewing the world through the perspective of the child. This will help you to connect with them and will also teach you a great deal about yourself. Doing this will also help you to have a better understanding and greater compassion for what they parents experience as they are raising this child because trust me, it is not easy and is a big deal in their lives.
Supporting the parents like this is what they need, at least it’s what I needed. No helpful comments or suggestions necessary AND the opportunities for connection and building deeper relationships with everyone is much greater.
If you are needing support in this area, please let me know. Like I said before, I get questions from people all of the time and will answer you honestly and openly without taking anything personally.
If you have a child with special needs and have family members who could benefit from reading this, please share.
Questions? Message me at firstname.lastname@example.org.