So, you’ve figured out your child has PDA and been told to embrace the low-demand lifestyle, but what does that look like in practice? This is what works for us and our family. It might be helpful and validating for you, or you might have a completely different experience, and that is ok. Living with a PDAer is a constant problem solving/recalibrating process.
- We have very few absolute firm boundaries– pick your battles! If they are not hurting themself or others than in the grand scheme of things it isn’t worth fighting over. Everything else is negotiable with as much choice, control and collaboration as possible. Our PDAer can choose the when, how, where, what. If the answer to a suggestion is “no”, we move on. Stay tuned for part 2 where I’ll give specific examples around self-care, meals, sleep and screens.
- We are very selective about when we attempt things that we know will be challenging. We try to minimise the variables as much as possible. We make sure our PDAer is not hungry, thirsty, tired, cold, allow lots of time and keep the lead up extremely calm. If our son has a meltdown over anything before leaving the house we know it’s going to be a hard morning and if we can, we reconsider going out.
- We are very protective of energy levels. This means only attempt one thing a day and lots of down time to recover afterwards. If we’ve had a really big day outing, like a day trip to the beach, we’ll spend the next day at home. Usually there are at least 2-3 days a week where our PDAer doesn’t have to leave the house. This doesn’t mean the whole family has to stay home, as parents we might divide and conquer sometimes so that siblings can have different opportunities too.
- We are mindful of how we communicate. We do loads of problem solving and make a conscious effort to use declarative language. These ones take practise but it definitely gets easier and becomes second nature over time. I’ll dive into this more in another post.
- We don’t share what’s coming up with our PDAer too far ahead of time. Generally, we only discuss the next thing so that they don’t get too overwhelmed. This is especially important if trying to get to something tricky e.g. if we have a dentist appointment, we won’t discuss anything that is happening for the rest of the week until we have gotten through that appointment. Often times if we spontaneously suggest a fun activity and get a “yes” we have to go straight away. In fact this should maybe be it’s own point…
- We are always flexible. If our PDAer suggests that they want to do something we have to drop everything and jump on it! If we suggest going later the demand seems to increase and the answer will often change to a “no”.
- We don’t do daycare or kindy. We tried; it was traumatic. The anxiety levels are just too high for our PDAer to get anything beneficial out of these type of settings at the moment. It might change in the future. PDAers are autodidacts, meaning they are self-directed learners. Learning at home through his interests is what works best for us. I will make offerings or strew things but he has the choice to opt in or not.
- We are very selective with how we use therapies. We have some great relationships with incredible therapists, these are so helpful for assisting us when we need documentation and advocacy. We have found the energy cost of face-to-face sessions too high, so parent education over zoom has been the best option for us. We are taking a break at the moment but might start up again if situations arise that we need assistance with.
- We keep sensory demands as low as possible. Our PDAer is on the sensory defensive so that means our space is very quiet, ear-muffs are available if he needs them. Clothes are always soft and comfy, tags removed, shoes and socks are only worn when absolutely necessary. We always have wipes and towels available if we are doing or eating anything messy and honour any requests to change straight away if clothes get wet or dirty. Low sensory demands also extend to our use of self too. We make sure to use a quiet, calm voice and provide touch (hugs, tickles etc) only on our PDAer’s terms.
- We try our best to stay as calm and level as we possibly can. Our PDAer is very sensitive to our energy. If we are stressed or angry, he will pick up on this. We are human though, there are good days and bad days. By mid-afternoon my tolerance definitely starts to wane.
Remember the mantra, ‘Just for now’… this isn’t forever. Just because your PDAer can’t do it now doesn’t mean it will stay this way forever. Trust that they will do things when they are ready and able. They will surprise you, I promise. It seems counter-productive doesn’t it, the more you push the more they resist, the less pressure you put on something and all of a sudden, they will self-initiate. This is the PDA paradox.
Kate Kleinau, Raising PDA Kids
