It can seem overwhelming to talk to your kids about their disabilities in an empowering and affirming way. Here are five tips to successful conversations:
1) Make sure everyone is in a emotionally calm state.
This conversation is not going to work when your kid is in the middle of a tantrum or manic state. It’s also not going to work if you’re exhausted and your kid is working your last nerve, or if you’re feeling depressed about their diagnosis. Everyone has to be calm and positive. It is an important conversation to have (and keep having), but if you’re not ready for it, then it’s just going to heighten whatever emotional state you are in.
2) Start with their positives!
Everyone has things that they struggle with, but having a disability means that people are paying a lot of attention to your struggles and they are going to be pointed out more often. That is why it is so important to build our kids up by piling the praise on whenever we can. Just like everyone has things they struggle with, but everyone also has things they’re really great at! Even if it’s just things like, “I love your smile!” or “You make Mommy and Daddy so happy!” it’s essential to start this conversation with something positive, and then remember to fill them with positive comments as often as you can.
3) Give them language to be able to talk about it themselves.
When I talk to my kid about the things he has difficulties with, I always ask “How does it make you feel when this happens?”. This gives him words that he can use to express himself. If your child uses sign language, use it as an opportunity to work on vocabulary. If your child uses AAC, model using their device or system to express their feelings. If they don’t have an expressive mode of communication yet, it’s still important to model that language for them.
After we talk about how it makes us feel, then we move on to reassurance that it’s fine and everyone has different experiences. If you have a diagnosis, this is when it’s appropriate to name it for example: “I know [XYZ] situation is difficult for you. That’s because you have autism. Some people are autistic and some people aren’t, and neither is bad, it just means our brains work differently.” That may seem too wordy, but it’s still important to model that language, even if you are unsure how much they are understanding.
4) Get their perspective on what they need
People with disabilities spend most of their lives being told what they need by non-disabled people. We can give them some of that power back by constantly asking for their input. It may not seem appropriate, but even if they are young, cognitively disabled, or have expressive language issues, you can still involve them in the conversation. If you are looking for something structured to help you, I highly recommend the one-pager resource from I’m Determined (http://imdetermined.org/quick-links/one-pager/).
Just know that they don’t actually have to be able to come up with anything to be able to have this conversation. As an example, this is the conversation I had with my 3 year old about his working memory.
[taking the opportunity to point out a positive trait after he remembered something that happened several months ago]
- Me: You have such an amazing memory!
- 3yo: Yeah
- Me: You can remember things that happen so long ago!
- 3yo: Yeah, I use my brain!
- Me: Yeah, and you have an amazing brain! But sometimes I know you have trouble remembering things that just happened today.
- 3yo: Yeah
- Me: How does that make you feel when you can’t remember things?
- 3yo: I don’t know
- Me: Does it make you feel frustrated?
- 3yo: Yeah
- Me: Well we can work on figuring out ways to help you remember things. What do you think will help you?
- 3yo: Maybe food!
- Me: Yeah, eating good food helps your brain. Maybe we can also do things like having picture schedules. Does that sound like a good idea?
- 3yo: Yeah! Can I have a snack now?
He didn’t know how to talk about how it made him feel, he may not have understood all the words I was using, he didn’t know what sort of resources work best, and he was more focused on eating. Despite all that, he knows that his mom notices his positive traits, his mom wants to help him, and his mom will let him have input about his needs. And even if he doesn’t remember this exact conversation, he will still remember all of these general ideas because…
This is not a one-off conversation. We don’t build a kid’s self-esteem from one talk, it takes lots of conversations. Again, these kids are going to have people point out their deficits more often (hopefully we can reduce that by building awareness and acceptance), so it’s important to point out their positive traits as often as possible and reinforce that the things that make them different aren’t “bad”.
I would love to hear how others have had these conversations with their kids! Please share your stories in the comments, or if you have any questions about your unique situation, let us know.