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Feb. 8, 2023

Episode 66: Pursuing Community While Parenting Special Needs Children with Jan Stewart

Episode 66: Pursuing Community While Parenting Special Needs Children with Jan Stewart

The journey of parenting can be full of surprises, and sometimes those surprises are not pleasant. Jan Stewart, the author of "Hold On Tight: A Parent's Journey Raising Children With Mental Illness," shares her experience of raising two children with neurodevelopmental disorders. In her book, she talks about the challenges she faced as a mother trying to find the right diagnosis for her children, Andrew and Ainsley.

From an early age, Jan and her husband David noticed that something was not right with their children. Andrew had no self-control when it came to feeding, and Ainsley was very disruptive in school. However, every time Jan reached out to their pediatrician for help, she was dismissed as an overly-vigilant mother.

Despite the discouragement from the medical community, Jan and David continued to advocate for their children's health. It wasn't until Andrew's obsessive-compulsive disorder and Tourette syndrome exploded after his ninth birthday that he was finally diagnosed. Ainsley was also later diagnosed with the same disorders.

Jan emphasizes the importance of finding a psychiatrist who specializes in neurodevelopmental disorders to ensure that the right diagnosis is made. She even went so far as to make numerous calls to hospitals and psychiatrists in the United States, where the population is ten times larger, to find the best care for her children.

One psychiatrist who made a significant impact on Jan's family was Dr. Joseph Biederman at Mass General, who recently passed away. Jan credits him with saving Andrew's life and helping Ainsley as well.

One essential lesson to take away from Jan's experience is to trust your gut as a parent. If something seems off, keep advocating for your child's health, even if it means going against what medical professionals say. Additionally, it's crucial to find a doctor who specializes in neurodevelopmental disorders to ensure that your child receives the best possible care.

Jan reminds us that diagnoses can change over time. As children grow and develop, their symptoms may change, and they may need to be re-evaluated to ensure that they receive appropriate treatment.

She shares that dealing with mental health disorders can be a challenging and overwhelming experience. Every individual responds and copes with it differently, and the she can only talk about their own experience. They persevered and kept trying different approaches, but it was only when their older child's disorders burst forward that they became consumed with finding solutions. Jan admits to having days where they questioned why it had to happen to them and wanted to disappear. However, they decided to embrace the situation and promised their children that they wouldn't rest until they found the right help and solutions for them.

Jan shares that finding the right healthcare professionals was critical in their journey. They had to call hospitals and psychiatrists across the US until they found the right one. Similarly, they had to find specialized psychologists to deal with their children's disorders, as general psychologists may not always be qualified to treat more complex mental illnesses. She also found support in special needs parent support groups, where they formed a community of love, support, and encouragement with other parents going through similar situations.

Jan reveals that when dealing with mental health disorders, it becomes challenging to think about the future or even the next hour. Instead, they focused on getting through the next five minutes at a time. The journey was tough, but their perseverance and determination allowed them to find solutions and provide the right help for their children.

Jan's story is a reminder that parenting is a journey full of challenges and surprises, but with advocacy, persistence, and the right medical care, parents can help their children thrive despite their disorders.