I wish I was joking, but, sadly, I am not.
This is something that I was extremely ashamed to admit for years.
Looking back, we have come to realize that we lived in constant fear of our three year-old daughter's meltdowns. It made us feel like it wasn't even worth the effort on most days. I mean, how long can we go without groceries before we all starve? We would come close to knowing some weeks. It was nearly impossible to accomplish anything before it became too much for her.
We would spend hours trying to put her to bed every night because she could not calm herself. We were doing everything in our power to get her to eat just one small bite of anything during meals. Even while we were at home, we just couldn't do many things without consequences. Flushing the toilets, running the garbage disposal or vacuum, and cooking fragrant meals became almost impossible without dealing with a meltdown or constant complaining. Brushing her hair in the morning would almost always result in tears. I would loosely braid her hair to keep it from being tangled, but she would beg me to take it out by mid-morning because it was "too tight". She also couldn't handle having her face washed or painted.
Inevitably, we would find ourselves trying to socialize with friends or acquaintances, but we just waited for the ticking time bomb to explode. We were the parents of a sweet and beautiful little girl, but life was almost always unpredictable and chaotic. She just couldn't navigate the world of childhood before her without major issues.
Every now and again we would have a good day. Those days left me doubting my ability to parent. Maybe, it was just me. Was I imagining how difficult it was to manage my newborn/toddler/preschooler? Everyone else made parenting their child look not only easy, but wonderful and fulfilling. We spent most of our days miserable and desperate. Wasn't I doing the same things that they were?!
I read every parenting book that I could get my hands on. I tried every new method of discipline to handle her behaviors, but nothing helped. Many people took pity on me and offered me advice, but it almost always made me feel like I was losing my mind, and that I just wasn't cut out to be a mother. I lived in a world of shame and judgement (from others, but also myself) and I was constantly trying to change to be better that I began to feel like I was slowly losing myself.
The truth was that I was trying to parent a neurotypical child who wasn't really neurotypical at all.
All of our friends started signing their own children up for preschool, but I just couldn't do it. I knew that I wouldn't be able to send her to preschool with her behaviors being so unpredictable, so I attempted preschool at home. I think it goes without saying that that was a total failure. She could not focus on any activity for more than a few seconds at a time and it was, honestly, like trying to do the impossible. After she turned four, I managed to convince myself that she needed a proper teacher and we signed her up for preschool at a nearby franchise. This particular experience quickly became the stuff that nightmares are made of...
To this day, I truly cringe every time I think about those two preschool years. Every single day, her teachers would march up to me, completely exasperated, and spout out a 3-minute summary of all of her troubling behaviors. Just when I thought that she couldn't surprise me with her impulsive and wild behaviors... Well, she would end up surprising me. AND her teachers. It was brutal, but I appreciated their honesty and respect for me. I know they would mean well when they asked me if I had tried Time Outs at home or would recommend reward charts. I had already tried it all again and again, and it had failed every. single. time.
Her teachers would constantly tell me that she had "ADHD" -- which, I was openminded about because my husband and I both have a strong family histories of ADHD issues. The only problem? The only treatment for ADHD at this time was medication-- which they will not prescribe to children under six years-old.
I would often find myself Googling her crazy behaviors to find a strategy or remedy to help, and this is where I first came across the words SENSORY PROCESSING DISORDER. As I read a brief summary of it, I immediately dismissed it and continued on my neurotypical parenting path.
Two months later, I finally clicked on the link for the symptoms.
It completely took my breath away.
It was like shining a light into a dark cave. Suddenly, life- and parenting- started making sense again.
For the first time, I didn't feel like a crazy person.
We talked to her pediatrician, who sent us to a psychologist, who sent us back to the pediatrician for an evaluation for occupational therapy. By the grace of God, we ended up with an amazing OT who helped change our lives + the way we parent. She also helped to educate me on just how important it was to meet our daughter's needs at home and the cues to look for when she is really struggling. It is certainly not always perfect, but life is now much more predictable, thanks to keeping an extensive sensory diet... Especially now that our son has followed in the SPD footsteps of his sister.
Over the last two years, I have had many people reach out to me about dealing with a possible sensory diagnosis with their child. While I don't claim to be any kind of expert, I am so humbled that by sharing our own challenges and experiences, people know that they can turn to us for help and support. Honestly, I feel like it should be FREE (no charge) and easy to find emotional regulation tools and resources for your child, so I am always happy to share the inexpensive or FREE tools that I have found over the years.
I know all too well what it feels like to sit, stagnant and hopeless, in their position. Yes, it has been five years since we began this journey with our daughter, but we are still dealing with the anxiety and frustrations of seeking help for our sensory children.
Will this help them?
What if we aren't making the best decisions for them?
To which doctor do we go for that?
Unfortunately, I will say that there is not always a clear path for every sensory child. We have hit many roadblocks along the way. We've picked up new diagnoses (ADHD, ODD, and trichotillomania), but we are now seasoned SPD parents and know our way around the completely unpredictable and confusing world of mental health a little better these days.
It goes without saying that all of these experience have spurred my drive to SHARE (or, overshare as I'm sure some people see it) our challenges and our experiences to help all of the parents who are beginning their own journey. There are so many more resources for SPD than there were five years ago. I remember sitting in a psychologist's office, crying on the couch and practically begging her to help us manage our four year-old daughter. The most valuable resources for me back then were, truly, the other parents who shared via blog or social media. With that being said, if I can give you any advice, it would be to trust your own instincts and to advocate for your child. If you feel they need help, don't hesitate to push for the evaluations.
(I know if you are still reading this, you are probably starved for information and resources. I plan on eventually doing a post with all of my favorite social media resources for sensory play ideas, sensory diet exercises, and sensory toys.)
When our daughter was in Kindergarten, we were referred to a neurodevelopmental pediatrician, who gave me one piece of life-changing information about SPD.
In the medical community, SPD is only considered a symptom.
This is why treatment and therapies are not covered by insurance. It does not hold a true diagnosis at this point because these symptoms are very general and can be on a wide spectrum of oversensitive (sensory-avoidance) or undersensitive (sensory-seeking) types of issues. The oversensitive child will usually end up with a diagnosis toward the anxiety-disorder spectrum, while the undersensitive child will usually end up with a diagnosis toward the impulse control/ADHD/ADD spectrum.
TIP: You can also have both. Our son is strictly a sensory-seeker with high oral, tactile, and proprioceptive needs. He's clumsy and abnormally loud and constantly has his fingers or a toy in his mouth. Our daughter, on the other hand, is both oversensitive AND undersensitive, so she has challenges with anxiety, ADHD, and other impulse control disorders. She's an extremely picky eater and cannot stand loud noises or strong odors, but she also cannot sit quietly in a chair for more than a few minutes at a time and struggles with respecting personal space with her peers.
I won't continue to bore you with more details, but this is essentially our journey through SPD to present day. We homeschool both kids now, mostly to achieve a very active sensory diet that they would not be able to maintain at a conventional school.
YES. Five years ago, I was the desperate and terrified mom who couldn't bring myself to leave the house. Today, I am an educated and prepared mother of two wonderfully neurodivergent children, and I am much less vulnerable and desperate when it comes to dealing with my children's sensory needs...
If I can say one thing to you it would be, "I promise you, it will get better."
If there were any last advice that I could give you, it would be to become a student of your child and to make sure that you reach out and ask for help when you need it.
I will always be here to give you support, advice, but most of all... Hope.
Much love to you all,
Emily
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