all in this together

Doing Right or Doing Wrong, We’re All in This Together

Kate Mielitz Ph.D., AFC®, the working professional mom of Kaden from Raising Tourettes and Wendy Wegman, Education Specialist at the Tourette Association of America, discussed how to navigate the changes caused by COVID-19 and the importance of practicing communication as it relates to the Tourette and Tic Community. Doing right or doing wrong, we’re all in this together. 

Webinar Take-Aways

Notes from a conversation with Kate Mielitz, PhD, Mom with TS and two children with TS and Wendy Wegman, Education Specialist for TAA and mom to one child with TS and one teen.
  • We are not experts on this quarantine or pandemic. We are parents doing the best we can.
  • We both advise to take care of yourself the best you can.
  • You will not be an expert on school or taking care of yourself, but do your best to keep anxiety for you and your family at a minimum by reducing the news and tuning into what you need, too.
  • Some children need a schedule. Others will benefit more from a routine rather than having to adhere to a schedule. Be sure to include choice and relaxation/chill time into both.
  • Co-occurring conditions like ADHD, OCD, anxiety, and more may be difficult to manage during this time.
  • Remember going for walks, doing puzzles, listening to music, playing music, painting, drawing, and teaching life skills like tying a shoe or balancing a checkbook all count as learning during this time.
  • Model ways to keep yourself calm. Children will listen to your conversations and you can talk out loud about how you are feeling. Remember to talk about the feeling, whether anxiety, feeling overwhelmed, sadness, then talk about what you are going to do to help yourself through it. This could be going for a walk, listening to music, cooking or baking, and more.
    • “I” messages are very important.
    • This time at home together is a terrific opportunity to talk to your child about what it’s like to have Tourette, or if you have Tourette, to explain what it’s like for you.
      • In my experience, the best way I can explain what goes on in my head: Picture 30 super bouncy balls (the ones you can get from the machines at the grocery store that bounce 20 feet in the air?) picture 30 of those bouncing at the same time in a confined space and that kind of gives you a visual of how my brain functions. In order for me to manage that chaos, I have to exert control in other parts of my life…which, as you are well aware, is considerably more difficult now.
  • Neurological rage or emotional outbursts that can occur with Tourette Syndrome will likely be more difficult than usual to live with during this pandemic.
    • Give your child more leniency when you need to. It might feel like “giving in,” but see it in terms of working together.
    • Notice if your child is becoming more agitated. Stop talking. You may be trying explain something, arguing, or trying to soothe them, but talking will only make your child more agitated and can lead to an outburst.
    • If it’s appropriate have a conversation after the outburst.
      • Your child may apologize. This is a perfect opportunity to show compassion and let him or her know that you forgive and that you know it is hard. It is okay to gently and compassionately let your child know how you felt by their words or actions as well. It’s really important this is done with love and compassion so the child isn’t made to feel worse about the situation.
      • Your child may not apologize. It may be okay to gently and compassionately bring up what happened and let him or her know that you always forgive and that you know your child’s feelings can get this big. You may mention that you know that he or she doesn’t mean it. It may not be time to address how you felt during the rage or outburst. You will need to gauge what your child is ready to talk about after an emotional outburst or rage episode.
        • “I” messages (again) are particularly important.
        • You will have some good moments and some not as good moments. It’s important to move forward with forgiveness and without rigid expectations.
        • If you have the support of another adult, ask for even just 5-10 minutes to yourself to just breathe, or take a walk, and then return the favor.
    • You will have some good moments and some not as good moments. It’s important to move forward with forgiveness and without rigid expectations.
    • If you have the support of another adult, ask for even just 5-10 minutes to yourself to just breathe, or take a walk, and then return the favor.