After a recent trip to the park with my 3 year-old daughter, I found myself looking through the pictures I had snapped with my iPhone. It was a gorgeous day, and she had really enjoyed herself. We both had.
If I posted that smiling picture of her going down the slide on Facebook, it would look like I was just another proud mom (which I am) sharing a photo of her adorable daughter (which she is) after another normal, run-of-the-mill trip to the park.
But because my daughter has Sensory Processing Disorder, this picture is anything but normal. It’s extraordinary in every way, and it tells a story that only those closest to her will ever know.
You see, in this photo, she is at a park and she is happy. And that is crazy.
To a neuro-typical child, I’m sure a playground is a wonderful place filled with excitement. To my daughter with Sensory Processing Disorder, it can be a trial by fire, where all her biggest fears assail her.
This photo doesn’t show the hours of occupational therapy we went through to try and teach her to regulate her nervous system in environments that are noisy or full of new things.
It doesn’t show the first two-and-a-half years of her life, when putting her in a swing made her wail in terror. Swings provide excellent vestibular input and are great for children with sensory issues, but what about the child who is fearful of sensory input? We couldn’t get her to try the very thing that would help regulate her nervous system.
It doesn’t show us taking her here every single day for 6 months to try and get her used to the slides and swings and other fun “toys” that every other child takes to so naturally.
It doesn’t show her sensory circuit being overloaded and then blown when another child approaches her, or speaks to her.
It doesn’t show the other parents looking at us like we are crazy or over-protective because we go through the whole playground with her. They don’t know she has to hold our hand so she doesn’t fall because of poor motor coordination. They don’t know that she’s not having a tantrum because she’s mad, she’s having a sensory meltdown because she’s terrified.
This photo doesn’t show all the orthotics and years of physical therapy we went through just to get her to be able to walk, run, and climb up a staircase. It doesn’t show kids half her age climbing or sliding past her with ease, while she struggles.
It doesn’t show the times after the park when I went home and cried, worried she would never be calm enough or “neuro-typical” enough to make friends.
This picture doesn’t show any of these things–this picture shows a moment. A small, powerful moment of resilience and strength.
It shows proof of progress. Perhaps her smile on the slide does not factor in when her therapists calculate the percent of her delays, but it factors in to her quality of life.
It shows a child made strong because she must be strong and fight for everything she wants.
This photo shows a beautiful, happy, normal day full of fun at the park. And that’s exactly what it was.
Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!
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Brava, baby girl! And brava mama!
I got chills reading this.
So TRUE.
Thanks and love,
Full Spectrum Mama
Oh, Megan, I absolutely empathize with you and your challenges: from having your daughter correctly diagnosed; to understanding her problem thoroughly; to trying to get her the proper help; to working with her on her environmental adaptive and social skills. What you are doing on her behalf is simply amazing. She is extremely lucky to have you as her mother, her champion. Your will and tenacity are clearly evident.
I know firsthand how difficult it can be to find answers, as well as maintain patience and energy for even a bit of daily progress. In your case, you have virtually moved mountains and your post today is a testament to that fact.
My youngest sister was born with IQ challenges, which in her case—and with regard to the so-called government assistance agencies—amounted to her being relegated to some gray area or rather black hole. Even at about eight years old I recognized how idiotic (and how ironic, actually) the medical field was about diagnosing my sister early on. Once I reached college I was on a mission to get my sister help, with the goal of her learning how to live as independently as possible.
Yet every time I believed I’d found her help through job-training or independent living homes, I ran into roadblocks via the same government central agency which had doomed her to languish in that social black hole. I could never get her proper help, even in terms of SDI. My mother had once made a “mistake” of managing to get my sister a job cleaning pet cages at a local pet store. That job only lasted a few months, but the enlightened folks at SDI decided that meant she was not eligible for assistance. What a representative of that central body later told me was that without proper help my sister would likely regress over time, nice, yes?
Fast forward decades later, this is exactly what happened. My sister did in fact regress. She has virtually zero social skills and is unemployable. Unfortunately, my mother gave up long ago trying to fight against the social agency machine. Plus, every time I or my sister tried to help, my mother actually became the loggerhead. She allowed and still fosters my sister’s behavior, to the point that my sister has developed autistic-like behavior.
Meanwhile, and during the time my husband and I owned a residential property management company, too often we came across people who received and then abused social assistance, while those who should have received these benefits did not. This system is as broken today as it was when my sister was denied the help she desperately needed.
As I write this response, I am once again face-to-face with the broken disability assistance program. I’ve learned how horrific the path to even the possibility of it is paved with protracted processes to wean out those unable to sustain the fight. I’ve overheard how even people with terminal diseases must combat an unsympathetic audience. It’s a system that enables the capricious nature of some judges to make rulings solely based upon their emotional state at the moment (even while attorneys warn their clients to hold their own emotions in check).
In contrast, and leading up to the day of “judgement,” it turns out that high drama is what is rewarded. From the social workers to the evaluating doctors, the more outrageous the patient behavior, the better. Again, I’ve witnessed it firsthand. I’ve watched while those who know the system works take full advantage of the situation.
All this is to say that your commitment to your daughter and her well-being is more impressive than you may know. While I felt like Don Quixote, railing against the social system windmill, you have managed to break off some of the blades in the pursuit of bettering your daughter’s life. Well done you.
Oh Ardith, thank you for your heartfelt words. I am so sorry that you know the heartache of “the system.” I’m so thankful you took action on behalf of your sister! It may not seem like much, but I know that if enough people stick together and advocate long enough and loud enough, there will be change!
I feel so free&refreshed reading your blog.
Feel like I am not alone…and that its ok not to be ok.
Thank you.
Sandra&little fighter Ethan.
Oh Sandra, I feel you! It is most certainly okay to not be okay. I think acknowledging that is the first step in healing. And we can’t help our little ones without this!! So glad you stopped by!