Positivity in Action: While Caring for Her Son, Deshaun Makes Sure to Care for Herself Too

We always celebrate the little things.

Deshaun’s positive attitude will make you smile. She’s a busy first grade teacher raising her 15-year-old son, Braylon, who lives with CDKL5 Deficiency Disorder. In episode 5 of the CDKL5 in Color podcast, we do a deep dive with Deshaun about making life fun with Braylon, the importance of inclusion, and how caregiver mental health matters.

Music Is Powerful

Braylon is a fan of all types of music, from the symphony to pop, and Deshaun was able to take him to see Harry Styles in concert! Despite all the challenges of making such a trip (limited changing spaces, accessibility, and all the things to pack), they had a positive experience and, thankfully, found support from the stadium staff.

When asked how she knows if he enjoys himself when he cannot tell her himself, she reflects on how CDKL5 caregivers inherently know their kids and pick up on the cues they give to indicate they are content.

Learning Who Therapy Is For

Mental health was always just on the back burner because [Braylon] was always the priority.

Deshaun reflects that she was always told that therapy is for “people who have problems” and so she put on a happy face and appeared strong to anyone looking in. It took her a long time to realize that therapy can benefit almost anyone, particularly CDKL5 caregivers. It provides a listening ear and helps with the development of coping skills. Things that can support living with the challenges this life brings.

Have you considered therapy? Here are some tips for finding a therapist who is a good fit:

• Think about what you'd like to achieve in therapy. What are your goals?
• Consider the therapist's specialties and credentials. Do they have experience that resonates with your goals?
• Ask your network for a referral. Friends, family, and your doctor are good people to ask. You can also read reviews online.
• Schedule an initial consultation. Use this time to ask questions about their practice and see if you feel comfortable and heard.

Don't worry if your first visit isn't a good fit. It might take time to find a therapist who works best for you.

PS: Looking to do some good? Help Deshaun raise funds for a seizure alert dog for Braylon!

Until next time 💚

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Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.