In November 2016, our oldest son became very ill. His symptoms were physical at first, starting with his gastrointestinal system. Within a month, he was experiencing neuropsychiatric episodes. Within two months, his condition was so severe he was no longer able to attend school.
Seeing our formerly bright, vibrant, and energetic boy struggle to do tasks that had once been simple for him, like getting ready for school in the morning, process simple instructions, and spending time with friends, was heartbreaking.
In March, he was diagnosed with a rare autoimmune disorder called PANDAS/PANS. This disorder causes the body to attack the brain when streptococcus (commonly known as strep throat) or a virus is present in the body. This, in turn, causes neuropsychiatric symptoms that are both debilitating and life-changing.
The extra challenging part was that there was no roadmap to follow. It was a “working diagnosis,” without clear consensus among his doctors, and there was no treatment plan.
I’ve learned a lot in the past few months, though. Most importantly, we can share our children’s mental health needs without victimizing them, and we can find community centered on hope and support.
JOIN POSITIVE GROUPS ON SOCIAL MEDIA
In the beginning, my husband and I joined several groups on social media for community and encouragement. While some were positive and connected us to others who were supportive and understanding, others were soundboards for frustrations and negativity. Frustration, anger, and sadness are all valid feelings that shouldn’t be suppressed. However, if the only voices you are surrounded by are negative, you will begin to see your child and your situation in only a negative light. Friends with an honest, but positive attitude have been the biggest help to our family.
TREAT YOUR CHILD AS A PERSON
When people ask us about Jack, we don’t hide his neuropsychiatric struggles, but we also don’t shout them from the rooftops. We focus on him as a person first, then educate positively from there. When I started feeling like our son was a victim or that I needed to be defensive of his challenges, I had to turn to my positive friends. They helped me see that PANDAS/PANS is a part of him, not all of him, and that the best thing I can do is be a positive advocate for him. It worked! I began seeing Jack as a person, not a victim. And, in turn, Jack saw himself as a person, not a victim.
USE NARRATIVE THERAPY TECHNIQUES
A dear friend of mine who is a marriage and family therapist recommended using narrative therapy techniques with Jack. Narrative therapy separates the individual from their diagnosis in a healthy and positive way. While there are therapists who specialize in this technique, the main principles can be applied at home. This technique encourages individuals to transform personal experiences and challenges into personal stories that give their life meaning and help them discover a greater purpose. This has worked beautifully with our son. He is now able to talk about his condition as a part of him and his story, rather than as a victim of his condition. You can learn more about narrative therapy techniques here.
It can feel challenging to ask for help, but healing happens when you do. My husband, myself, and our children all receive counseling to help us process life in a healthy way. I believe all families can benefit from counseling, especially those with special challenges. Counseling has helped each us form a narrative and has provided us with a sounding board when we are processing complex emotions. If you need a mental health professional or family therapist, browse the free Exceptional Lives Resource Directory:
Though Jack’s life is changed by his diagnosis, our focus on a positive community, a person-first mindset, supportive techniques, and counseling help Jack and our family feel a little stronger each day. And I believe this can help you family feel stronger, too!