"You need to get rid of all juice, soda and candy in the house," my sons' pediatric dentist scolded as he pulled me out into the hall after their appointments. "Your boys' teeth show signs of decay. You aren't being strict enough."
My face turned red as I tried to keep my voice from shaking, "Could you talk to them about their teeth and what they need to do?" I asked.
"No, I need to keep a positive relationship with them. You need to do a better job of making sure they brush and floss and keep sugar away from them." he told me as he walked away.
Having kids with special needs means that I have extra parenting duties on top of the regular ones most parents have. For my son on the autism spectrum it means that I'm helping interpret the outside world's expectations for him. I'm checking his understanding and perspective and filling in the holes when he misinterprets meaning and context. Most importantly, I'm helping him learn how to self-advocate so he can explain himself to others and get the help he may need when we aren't together.
For my son with ADHD and anxiety extra parenting means time spent reassuring him when he doubts himself and thinks he's a bad kid. It means helping him structure how he uses time because he doesn't have a good sense of how long homework or other responsibilities will take. It means helping him learn how to manage his strong emotions and cope when he feels overwhelmed so he can build his sense of resilience.
For my youngest son who can become inflexible when he's anxious or stressed, it means validating what he's feeling in the moment and helping him express his concerns. Usually once he feels understood, he's much more flexible and can move on to homework or whatever chore needs to get done.
Like all families, we need moments where we aren't working on a skill or focusing on what's challenging. I wish the professionals who are supposed to be helping me understood that my first priority is helping my kids feel safe and understood in a world that is often chaotic and unpredictable to them. I wish they could take my reality into account before assigning blame and mandating changes that feel impossible to implement.
Tips for parents and helpers
- Professionals can say: "What have you already tried?" "Has anything worked?" "What could you try next?" "This is hard for many families."
- You can say: "I agree there's a problem and I have a lot of different priorities I need to address for my child. Can you help me figure out what might work for my family?"
- Recognize when you are in survival mode: Sometimes professionals get into lecture mode and aren't really looking for a problem solving kind of conversation. I'm not someone who learns from being lectured to (does anyone?). So when I get asked questions that will lead to a lecture, I sometimes tell a white lie. It saves me emotional pain and shame. I already know I'm supposed to be doing more (flossing) or less (sugar eating) of some behavior. The one caveat where I will not lie is when the answer impacts medical procedures or medication.
- Provide resources: Donate a copy of Parenting without Panic to the professionals on your team to help them understand the parents' perspective. As an added bonus, they'll have the resource for other families in their practice.