Wow..it has been a long time. I have had dozens of narratives about our life swirling around in my brain for months, keeping me up at night but, when I sit to write…nothing. Complete and total writer’s block. Needless to say, sitting here now, feels really good.
For those of you who don’t know..my lack of writing has not taken me away from serving the needs of the parents in the sensory community. I have spent the last 18 months giving lectures to parent groups about raising a child with SPD. I have also had the honor of speaking to teachers about recognizing sensory needs in the classroom and teaching a sensory rich art class to children with special needs. It has been amazing what this little blog of mine has allowed me to do.
With all that being said, I would be lying if I said that things were great at home. Truth is, we are in the midst of a downward sensory spiral. One that I cannot help but feel I have let happen. I should have been more on the ball. I should have been doing less preaching and more parenting..I should have been paying attention. But the signs were so subtle and I was so distracted, that I missed the symptoms that were telling me that my girl was having a major setback.
When I talk to parents, I fully disclose that I am not an expert of SPD, but that I am an expert in my daughter. Seems these days, though that this is not exactly true. I am an expert in my daughter of the past..the one that I can look back on in hindsight. I can tell the tales of our struggles until we reached success. But, then something happened…this daughter of the past began to grow up. Her sensory signals have changed and I am once again the struggling parent, completely in the dark as to how to help her. So, let me go back to where it all began for us once again:
On Christmas Eve my daughter threw up in the middle of the night, as many kids do who eat too much when their parents aren’t watching. In the weeks and months to follow, she started to have trouble falling asleep. During her very first sleepover with a friend for her birthday, she spent the night curled up crying on my lap because she was afraid she may had eaten too many sweets at her birthday party earlier that day. This was five weeks after Christmas Eve and, although it had yet to happen again, she couldn’t shake that horrifying sensation. This isolated incident had turned into pure, uncontrollable anxiety. So much so that she got herself out of bed one night to tell me that it was time for her to go back and talk to someone about her feelings. From this point on, in the months to follow, the anxiety creeped up into other aspects of her life. She began worrying about things before she had reason to. We took a trip to Magic Kingdom before our first Disney Cruise where she cried most of the day, even though she had been there years earlier, and triumphed over every single overstimulating experience. It was the “what ifs”…the rides she hadn’t watched a video about, the new fireworks show that may be too loud. Suddenly I saw her covering her ears in anticipation of loud noises, something she hasn’t done in years. Prior to the cruise, I spent weeks preparing for her possible motion sickness, spending hundreds on every preventative measure I could get my hands on. Yet, she tolerated the motion just fine but had a near meltdown in the Bahamas when her bathing suit got wet and felt too sticky. I haven’t packed a spare bathing suit for the beach in over 6 years.
So, the new SPD, the 9 year old version, has us back to the place we were many years ago. It has her body engaged in full defense mode, making textures and temperatures and noises too much for her to handle. It has her shoving small objects in her mouth when she is desperate to soothe herself. It has me missing all the signs, leading her to have to tell me she needs therapy to make her “nervous feelings” go away and then reacting the wrong way because I feel like a failure. It has us, as a family, once again at a point of “where do we go from here.” And while I am often the leader for others to find their own way on their journey, I am like a captain who has abandoned her ship for my own.
So, I sit here, as I used to years ago, typing out my feelings to help ease my anxiety so, in turn, I can help my daughter with her own. It has me going back to where it all begin, this community I built almost five years ago to the day, to draw strength and support from my village as I figure out what to do next. This village isn’t just helping raise my daughter, but it is also helping raise a mother…the kind of mother my daughter deserves. So, I thank you, whether you have read every piece or whether this is your first insight into our life, because without you I wouldn’t be able to feel that, although lost, there is a bright light up ahead ready to show me the way once again.