Jennifer does a much more beautiful and eloquent job of addressing these sort of attitudes and reactions. Just because we have a children with SPD does not mean we are stupid or lazy parents looking for a diagnosis to hide behind.
|Photo Credit: AIT Institute|
Christy has bravely and honestly discussed her experiences mothering a child with a sensory processing disorder (SPD) on her blog. I admire this because it is not something that I am comfortable discussing on my own blog. Why? Simple. Because other people’s reactions to the term SPD are always harder to deal with than having a child with SPD.
SPD is not a new diagnosis although the term itself and the parameters have changed over the last decade or so. Everyone on earth has some sort of sensory issue but are able to manage it and work with it. People with SPD cannot.
My daughter, now three years old, was diagnosed with SPD when she was around 18 months. This diagnosis was very difficult for a lot of my friends and family to wrap their brains around. They all pretty much had the same response. “SPD? Whatever. She’ll grow out of her issues.” Only she didn’t and she hasn’t and still, many people close to me refuse to accept SPD as a legitimate medical diagnosis.
My husband and his family pretty much dismiss the suggestion that my daughter has SPD. They refuse to modify their behavior towards her to accommodate her needs. They see her challenges as personality quirks that she will outgrow. They ignore the fact that she has strong reactions when they act a certain way towards her. They do not try to understand her and her needs. This is very tough on me as a mother. I am constantly compensating for their behavior.
My daughter is very tactile with an olfactory focus. She touches everything and sniffs everything. This is how she develops a comfort level with new things, new places, and new situations. I’m sure you can imagine the stares I get at the grocery store as my daughter sniffs just about everything. Most people just look confused. Some ask why she is doing it. When I say that she has some sensory issues I usually get either a neutral or a negative response. I hate that. My daughter does not need to hear negativity from strangers about WHO she is. Just because they don’t understand it doesn’t mean they have to have a negative attitude about it. Equally as irritating is when someone says “oh, another kid with another label.”
I don’t try to protect my daughter from her SPD. I work with who she is, her boundaries, her needs, and her comfort level. She is who she is and while SPD can be taxing on a parent (you have to be sharp and attentive at all times with very little wiggle room to let your child out of your sight) my daughter is simply my daughter. I love her and her SPD. I wouldn’t trade her or the SPD for anything. I actually think it makes life rather exciting.
What I would trade is negative reactions, avoidance, dismissal, labeling, and unsolicited advice or comments about my perceived inability to parent properly. My daughter’s SPD manifests itself in her inability to fall asleep and stay asleep. At three years old she has never been able to sleep for more than a 2 hour stretch without waking. Sleep is the time when she processes her day and being the over sensitive and very attune child that she is, she has a tough time letting things go and working through her emotions.
The comments and advice I get on this typically end in an evaluation of what I am doing wrong as a parent. I certainly do not need any more mama guilt piled on. I pretty much have stopped talking about my daughter’s sleep woes because I have a hard time hearing the comments and judgments. Doesn’t anyone think it hurts me deeply that my child does not get the proper rest no matter what we do to aid her?
People forget that parenting brings about a lot of guilt on its own. Throw a child with SPD into the mix and parenting becomes a heavy load physically and emotionally. Negativity and outright attacks against us as parents and our children only do more harm. As much as I try to shelter my daughter from the ugly or unkind reactions to who she is, some of that still seeps in. That breaks my heart. She does not deserve that.
My motto is “don’t judge until you have walked 10 miles in another parent or child’s shoes.” Until you have a child with SPD or are a person with SPD, please refrain from dismissive comments, labeling, negativity, and abrasive assessments of who a child is and why he or she is acting a certain way. Until you at least try to understand SPD (and more specifically the parameters of a particular child’s SPD), refrain from judgment and unsolicited advice. Instead, ask questions to help you better grasp what SPD is, what that means for the child, and how that challenges a parent. Offer encouragement and support if you feel like doing so. Otherwise, no comment is necessary.
We are all in this thing called life together. Let’s play nice shall we?
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