How to See My Child’s Invisible Disability

There is that old saying that seeing is believing and, once we are able to believe in something, we begin to understand it. But sometimes in life there are things that exist that are hard to see and, in the last six years, I have come to realize that my daughter’s disability is one of those things. Prior to being diagnosed with ADHD and SPD my daughter was labeled everything from spoiled to attention seeking. I was called over reactive and lacking in discipline. So, when I finally got her diagnosed I thought I finally had the proof we needed for people to understand her. But, even with a diagnosis I still find people struggling to understand and  that’s because her disability is hard to see…unless you look. Not glance..but really, really look. So if you are curious as to what I am asking you to look at, here are some of the subtle signs of her disability that you might never notice unless you really take a good, long look:

If you watch my daughter enter a room, you will notice her eyes dart around trying to take in everything around her. She may walk away and explore, taking inventory of all the things her heightened senses have to process. She may be standing on her toes, stiff and rigid as it is her body’s natural instinct to be on high alert. If she can tolerate what is around her, she will slowly relax and her body will soften. Her eyes will adjust and become focused on what she is doing or who she is talking to. However, if the environment is too much for her to process she may stay close to my side. She is social and friendly and engaging with peers is often enough of a distraction away from any discomfort from the surrounding environment. If she experiences down time, her attention often shifts back to the things around her that she cannot process. She will continue to participate but may self soothe by chewing on her shirt, hair or fingernails. She may ask me for gum because she has learned that it is a more appropriate way to provide herself the comfort she needs. If she becomes overstimulated, you may notice her talk loud and fast. She might run around, jump or climb on something she isn’t supposed to as an attempt to satisfy the cravings for input that her sensory system needs. In a group, she is quick to jump in but may slowly find her way to the outskirts, playing on her own. She will keep herself at enough of a distance so she can blend in without getting too close to any unpleasant sensations. Typically, she can get through most situations successfully but there are times when she begins to lose hold and, rather than meltdown, she slowly unravels. You may hear her say she is hungry or tired. This is her way to disguise the fact that she has had enough and wants to be removed. She may suddenly start to get frustrated with her peers and complain that she isn’t getting her way. This is not a child simply being bossy but a sign that she is grappling for external control because she is losing her internal control.

None of these things sound very alarming and separately they aren’t. They are all behaviors that any child may display. But, for my child, these behaviors are parts of a disorder that can disrupt her life at any moment. She has learned to make calculated decisions based on her level of tolerance so she can participate in things that may be difficult for her. She has experienced a natural maturity in her sensory system that, while delayed, has enabled her to endure overstimulation for longer. There are some environments she has learned to tolerate as we have had to expose her to uncomfortable situations little by little so she can build an immunity to the sensations that alarm her. If she does eventually meltdown, it will be long after you see her. This is her release from all she has reigned in that particular day. At the age of six, she has learned enough about her disorder that is appropriate for her age so she can be confident in who she is and how she feels. But the behaviors you will see, big or small, are signs of distress, self soothing, or both. Years ago these behaviors were not so subtle and made her disability more visible but, still, she was misunderstood. We didn’t know how to be proactive back then and, as a result, these little behaviors snowballed into something big…something that could easily be judged as misbehavior or poor parenting.

My daughter has worked hard to manage the role her disability plays in her life. It may be small and subtle but it can get big and loud and it takes a lot of energy for her to reign supreme against her body’s natural “fight or flight” reaction to her environment. So, why would I want to draw attention to something we worked so hard to minimize? It is certainly not because I want my daughter’s disability to define her nor is it my way to make excuses for a spoiled, ill behaved child. Rather, it is quite the opposite. There are millions of people in the world who live with an invisible disability and I believe my daughter is one of them. These are the people who struggle with something that isn’t easy to see on the outside. However, these people have to consciously manage this extra set of needs just to get through the average day. That is a large responsibility for anyone, especially a child. Some days are better than others and, when they struggle, they are easily misjudged. They are also the people who don’t always get the support and acceptance they need from others to be successful and confident with who they are. In reality, there isn’t a person on earth who doesn’t want to be embraced for all that they are..good and bad. Yet, we are all guilty of judging something simply because we don’t understand it. So, in writing this, I hope that we can open our eyes to our own challenges, and in turn open our eyes to the differences in others. As my daughter puts it, we all have our “tricky thing.” Hers is SPD and she is ok with that. So am I and, although you may not fully understand it, we hope that you are too.

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4 thoughts on “How to See My Child’s Invisible Disability

  1. This could have been me. I got my diagnos of ADHD and SPD when I was six but of course had problems before that, now I’m 18. But just like your girl I learned to handle it together with my mother. I am so extremely grateful for how much she helped me handle the world. Small things like chewing gum rather than fingers have made my life easier. Together we found ways to handle it when the surroundings got to intense and I still use those tricks today. The more I’ve practiced the better I’ve become at knowing when it’s getting too much. When I was younger I needed my moms help to get me to a quiet place because I didn’t realize it until it was too late but now I can handle that myself. Together we learned that if I go somewhere quiet and still where I can relax and breathe and just focus on myself in time I often can go back for a while to that noisy surroundings afterwards. Because sometimes that’s necessary (like when shopping or being at a place I can’t get out of directly) and sometimes I really want to (like when being with friends or at an event or something). With hard training and finding ways to manage I now live a great life and neither SPD nor ADHD affects me very much. I get tired more easily than my friends and I don’t enjoy big parties but there’s loads of people that don’t do that for different reasons so that’s not a problem. Today I can do anything if I just rest before and afterwards and get time to calm down during the day. I’m one of those persons that see SPD as a disability and something I’d maybe rather be without but there is no doubt some things have come with it that I enjoy. I am very good at seeing people and seeing how they really feel and I think SPD has contributed to my ability to enjoy art. Feelings fill me and art really can fill me up with amazing feelings others seem to miss.

    I am writing this because I enjoyed reading about your girl and then figured you might enjoy reading about someone who have had similar challenges but now are older. When it comes to SPD and ADHD there seems to be differences between how boys and girls with it are. Boys more often scream and shout while girls are more quiet and the biggest difference I’ve seen is that girls work extremely hard to function socially and not be seen as different. Which is why I now have very little in common with boys with the same diagnosis. Of course everyone is different and I think how the parents handle it means a lot but I am glad you spread awareness of your girl and shows a different but just as common side of ADHD and SPD than what most often is shown in media. Your little big girl sounds like an amazing person and you sound like an amazing mother. I am sure you two will learn to handle all these challenges and I am sending cyber hugs to both of you!

    (Sorry if my English is bad, it’s not my first language – I hope you understand)

    • Thank you so much for commenting and telling me your story. You are right, I love to hear success stories from people who have struggled with SPD as a child. It gives my daughter and I concrete examples to look up for and to encourage us. I am so proud of her and all she has accomplished so far and, like you, some of her best qualities come from her extra sensitivity. Keep sharing your story and being a positive role model for children like mine. Congratulations on being so self aware and working hard to manage your needs so you can lead a happy and productive life. 🙂

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