When my son Ian was diagnosed with Russell-Silver Syndrome, we were referred to a phenomenal Endocrinologist at Children’s Memorial Hospital in Chicago to help manage his care. “Little” did I know at the time, no pun intended, our new Endo was assessing Ian by who he was, rather than the new diagnostic label that was given to him by his Geneticist. This judgment, for lack of a better word, helped shape my parenting style on raising a child with a chronic illness. Rather than look at his differences or compare him with other children, I focused on his strengths and successes. Obviously, this wasn’t always easy – especially, when people made a habit of pointing out the dissimilarities between Ian and his peers. Yet, I continued to encourage him to make the best of everything he encountered – to the best of his ability.
Even in school.
Oh, it wasn’t easy. I made every effort to remind the nurse, principal and teachers that Ian was not to be singled out during class. If he projected bad behavior in the classroom, he was to be reprimanded like all the other children. No special rewards and definitely no special treatment. I also made sure all discussions pertaining to Ian were conducted behind closed doors. I wasn’t hiding – I was minimizing the impact of his concerns centered around all the children “knowing” he had a Mic-Key button in his belly, or the fact that he was able to have a special treat in the nurse’s office to help sustain his blood sugars throughout the day. The staff and I at the school encouraged the idea of “normalcy” for Ian. I had his lunch reviewed by the nurse every day to make sure he was eating sufficiently during lunch-time. I also provided extra Nutren, glucometer, meds, and other medical paraphanalia available for the nurse in the event of an emergency. And the guidelines and physician approval letters, etc. accordingly placed with his Individualized Health Plan was always readily available to the nurse, along with my cell number in the case of an emergency. Okay, so it was all “normal” for Ian.
I look back and see how organized and simplistic it seemed.
Now, we are dealing with Xander, Ian’s older brother (of 18 mos).
Alexander has begun to show behaviors that mimic ….how can I say….. a different style of learning. I have noticed something different for the last couple of years. He is an excellent reader, yet, isn’t able to articulate in a lengthy summary what he has read. He can’t give details either. BUT, he has read (at the age of 8.5 / 9) the entire Harry Potter series of books. He has read his National Geographic science book – cover to cover. He probably has read close to 70 books in the last 6 months. Yet, ask him what he has read – and he couldn’t tell you. And a child who once could do math in his head, is unsure of how to add a column of two numbers together in a short period of time….apparently, he is similar to those of his other classmates. I have struggled to get the attention of “his differences” because he seems so “normal” to everyone else. I have asked for reassurance and testing….asked for guidance and have even been told “be careful of what you ask for, you might not like the results you get”….and “it’s never good to have a child labeled”. I have found once again – the necessity to advocate for my child. Not just Ian. Alexander.
Why I bring this all up.
Whether a child is labeled with special needs, or a child is considered “normal” and there is scrutiny surrounding a possible label for the potentially “normal” child, I believe as parents we should always be strong advocates for our children and steer away from fear. Focus on the positive outcomes that can transpire from a test or procedure, or just the knowing that if everything “is okay” – that you as a parent did your best to see your child reach their ultimate successes in life. That’s what a good advocate does. Focus on the positive.
I recently read an article by Dr. Ellen Weber Libby – a clinical psychologist and author of The Favorite Child, which briefly summarized the family dynamics surrounding children with special needs. https://www.psychologytoday.com/blog/the-favorite-child/201002/are-children-special-needs-favored . In this article, she referred to a book called Educating Tigers by Wendy Eckel which discusses strategies for coping with children diagnosed with special needs. Interestingly enough, Wendy referred to Ten Tips to Negotiating the Best Education for Your Child. https://www.ldonline.org/article/7749?theme=print . Both articles moved me within – as they reiterated what I had already been trying to achieve – adequacy and identity outside of a label.
I highly recommend both books to parents with or without special needs children. Happy reading!
– Heather Early