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STORIES OF HOPE:A Glimpse Into The Lives Of Families With Neurodiverse Children (July 2024) written by Dr. Shiro Torquato



Many parents have concerns about their child.  Will they be happy?  Will they have friends?  How will they do in school, and in life as adults?  They notice things in their child, such as limited speech for their age, or the child can’t sit still and focus on one activity.  Parents share these concerns with other family members or their child’s pediatrician.  Often times they are given conflicting information; some of this information is helpful and some could be hurtful.  If you are a parent who has gone through this experience, you are not alone.


There are many children who are considered neurodiverse.  They may have ADHD, a Learning Disability or be on the Autism Spectrum.  They may have other neuro-developmental conditions that affect their ability to communicate, learn and socialize with peers and adults.  If you are a parent of one of these children, life can be very challenging.  You want to get answers to your questions, find ways to help your child meet their potential and bring peace to your family.


This series of articles will give you a glimpse into the lives of families who have shared your experiences and may be able to give you guidance and hope to start or continue the journey with your own neurodivergent child.


Meet Joshua. His parents were informed during the pregnancy that he had some medical problems, including a heart condition.  He began receiving treatments at birth and other medical issues developed as he became older, including a rare blood condition.  During his toddler years, he began to exhibit severe tantrums and had social difficulties with peers.  His mother recalled that Joshua was initially diagnosed with ADHD and Autism Spectrum Disorder in the second grade.  However, they were also told that he was intellectually Gifted and considered Twice Exceptional.  Joshua was later re-evaluated, and the parents were told that he did not have Autism Spectrum, but did have ADHD symptoms that were due to his medical condition and a result of deterioration in his frontal lobe.  All of the information from different professionals became overwhelming.  The mother stated that their biggest fears at the time were that the “labels” would be used as a crutch.  They also had serious concerns about medicating their child at such a young age, due to the potential long term side effects.


In addition, Joshua’s parents faced many challenges with having a child who has both medical and developmental concerns.  His mother commented, “nobody understands his behavior, because he looks normal on the outside.”  The family also had to endure countless meetings, doctor’s appointments and therapies, which put a strain on their relationship.  His mother also shared that it was challenging to change her expectations for her child and his behavior to what “normal” had become in their lives.  She also had a fear of her son hurting himself or others.


However, there were also successes that Joshua’s family celebrated.  These included a gradual growth in his maturity, and the ability to focus and listen better with medication.  His mother is also proud of Joshua’s ability to not care what others think, and to make friends with anyone.


Through this long journey, Joshua’s family provided him with many interventions and supports, including group and individual therapy, a 504 accommodation plan and eventually an IEP through the school district.  They arranged for play dates and had him participate in community activities (e.g., Scouts).  His mother commented that she and his father had to change how they parented and communicated with Joshua as they better understood him and his needs and strengths.


Fast forward to the present.  Joshua is now 13 years old and in middle school.  Even with an IEP, he struggles academically with studying and organizational skills (Executive Functioning).  He won’t initiate homework on his own.  Socially, he is well liked and enjoys spending time with friends.  However, he is not included or invited to social events outside of school.  Although, there is a big improvement in his independence, which makes his parents proud.  He can now do daily tasks (e.g., getting dressed, brushing his teeth, packing his backpack), without reminders.


Finally, Joshua’s mother was asked if she could give any advice to other parents who recently learned that their child is neurodivergent.  She responded, “Be patient with yourself and your child; it’s a journey.  You are not alone and there is hope, so don’t give up. Keep trying different things and techniques until you find what works for you and your child.”

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