How do you manage the perceptions of others with your special needs child’s invisible disability?
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I have a child who appears like a typical child but is anything but. He has a medical condition that means that he doesn’t feel pain and he also engages in some pretty risky sensory-seeking behaviors. I find that i really struggle with the judgements of others and feel the need to always be explaining what is going on for him to avoid being judged. If people don’t know his story, he can seem like he is just a ‘naughty’ child and that really bothers me because he is an amazing child who has overcome so much. He has had many injuries and we have almost lost him twice – including through a very traumatic incident where he had a 4 meter fall and fractured his skull. I suppose my question really is…how can I move past my need to always be explaining and justifying to others? It takes a lot of energy but I can’t bare the thought of other people thinking he is just a naughty kid with a lack of parenting. Please help!     
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Answers (2)
Best answer chosen by asker
Wow, that must be difficult and worrisome for you! I hope that your child learns self-preservation techniques to keep safe!
As a person with a "hidden" yet life-threatening auto-immune condition, I understand completely where you are coming from. Although I do not have to worry about a child with a hidden disorder, I know the burden of needing to tell others about my behind-the-scenes health issue.
When needed, I still tell others about my health issue as a safety precaution. I may need to depend on them at some point for emergency help. So I do clue others about my condition and what needs to be done if I have a medical crisis. Also, I can not always participate well in certain activities, although I am fine at other times. This may confuse people, so I inform them of my limitations so I don't have to explain myself further when I am sitting on the sidelines.
So my answer to your questions is that I don't see why you should stop explaining your child's limitations when the need arises. It will save you angst and keep your son safer in the long run.
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Best answer chosen by asker
Kids who are atypical can present a challenge when it comes to the perception of others. As a mom who has a child with a rare health condition, I can sympathise completely about how exhausting it can be having to explain your child's medical condition or different behavior over and over again.
What has helped me is to remember the quote from Bernard M Baruch, "Those who matter don't mind, and those who mind don't matter." I focussed on making sure that close friends and family, and people my child interacted with on a daily basis such as teachers and coaches, were informed about the illness and understood what it might mean for day-to-day life. I learned to ignore the judgement of people who were not coming from a place of understanding, and this was not always easy as people can easily be hurtful even if they don't mean to be. I reminded myself that they did not live life in our shoes and could therefore not fully understand what our lives were like no matter how hard they tried.
As my child has gotten older and has had to start advocating and explaining things for himself, I have encouraged him to have the same mindset. There will always be people who judge you and the way you live your life, even if you are neuro-typical and have perfect health. The best thing for your own peace of mind is to remain focussed on yourself and the people who are important to you.
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