Keeping Your Head Above Water: Reflections on Sensory Processing Disorder

It was about this time last year that we got the official diagnosis for our now 4.5 year old’s Sensory Processing Disorder. I had a niggling suspicion almost a year before that this was what we were dealing with, but instead I kept blaming myself for my daughter’s meltdowns. I wasn’t connecting enough. She wasn’t releasing enough stress through crying or through play. Somehow I just wasn’t doing it right. Maybe I had already traumatised her or she had picked up on my anxiety and my poor coping skills (since I was still recovering from my own trauma). Or she had just inherited something in my genes that was just… bad (because how on earth can someone like me have good genes?). Or it was that beer that I drank when I didn’t know I was pregnant? Or the half-strength lattes that I never gave up? Or the fact that I tried to grow a baby as a lacto-ovo-pesco vegetarian with a leaky gut (too much gluten and dairy). I like to solve problems and this was a big one, but I didn’t know where to turn.

It is very possible that all the factors mentioned above somehow coalesced into my daughter’s Sensory Processing Disorder. And it is even more likely that it has a lot to do with our recently discovered methylation and heavy metal issues. All I know is that by the time we went to the Occupational Therapist, I’d already read two books, scoured the internet, consulted a friend who was an OT in the US (who had already suspected based on my Facebook posts but didn’t say anything!!) and pretty much begun a home treatment program.

Two hours and $400 later, I got the confirmation that our daughter had mild SPD. And the next week she was supposed to be starting preschool. Good timing. No really. It was good.

A year later, I can tell you that things are very different, but I want to share with you a little (okay, a lot) about why I have found the last 4.5 years of parenting challenging:

As an infant our daughter seemed to be constantly trying to tell us that things were just not right. She cried for several hours a day. Actually she screamed. She needed to be carried all the time. She needed to breastfeed every one or two hours. She needed to be on one of us to fall asleep. In my opinion all of this is relatively normal, just maybe on the intense end of normal. We had planned to be “Attachment Parents”, and she really made us live up to our word. We worked our asses off to help her feel content. And those moments seemed all too fleeting.

Finally, when she was ten months old, I read the book The Aware Baby by Aletha Solter. I already had another booklet about infant crying from Hana Peace Works, but Solter’s book went into more depth about a baby’s need to release stress through crying. We thought this was THE answer. So we worked hard over the next few months to wrap our minds around listening to our daughter cry in our loving arms after we had become so conditioned to offering the breast or bouncing her on a ball to relieve her discomfort and so that we could have some peace. I eventually joined an online community of parents who practice this approach, but I intuitively continued to breastfeed on demand and several times a night in spite of Solter’s advice to the contrary.

We knew we were doing the right thing by giving her a space to release her stress and even though we were told that the “proof was in the pudding” that we’d have a calm, content and relaxed baby, it didn’t last. So I assumed I’d caused her undue stress in the womb or as an incompetent parent and that I just needed to work harder to help her release that. All the while I was dangerously flirting with some post-natal mood stuff that contributed to everyone’s stress levels, including hers.

We couldn’t go anywhere in a car. As a toddler she would vomit. As an infant she would scream bloody murder. So, we just used public transportation and in the rare moments that we used a car, I would sit in the back – holding her hand or distracting her with toys. She would spit out a dummy (pacifier), but I did try to put my boob in her mouth a couple of times. So much for aware parenting…

But that’s how incredibly distressed I would get when my baby was in this state – in the car or not. I wanted so much to get it right and make it okay for her. I feel like I spent the first year of her life just trying to calm her and myself down. Obviously, I knew that I needed to attune and attend to her in a calm state, but this was easier said than done when my own sensory issues (oh yes, I have it too) and trauma were being activated.

Then she became a picky eater – in part due to some underlying nutritional imbalances. She wanted nothing but breastmilk, meat and carbs (particularly sweets) and seemed literally terrified of certain textures.

Sleep was a big issue. I literally spent hours each day trying to get her to take a nap and/or go to sleep at night. I had to wear her in a carrier and pound the pavement in our neighborhood or push her in a stroller to get her to fall asleep during the day, but shortly after her 2nd birthday even that didn’t work. She would sleep well at night but only after 1-2 hours of fidgeting, emotional releasing and nursing. I only left her alone when I had to take a breather from my frustration – sometimes ranting and raving to my husband who would then take over. It is now hard for me to believe now how difficult it was for me back then to stay present to her intense needs, but the relentlessness of it was absolutely crazy-making.

Then when the “terrible two’s” dragged on, I couldn’t decide if I had simply failed at “Aware Parenting” or if I had created a monster by allowing her to express her feelings so freely. The tantrums certainly weren’t performances. They didn’t feel manipulative. She just genuinely melted down about something EVERY. FIVE. MINUTES.

Once we got the diagnosis, our whole way of seeing her changed. We saw how hard she was working and how uncomfortable and scared she was. We found out that she was over-responsive to auditory, visual and vestibular input but that she had low tone and low proprioception. So she really didn’t have much of a sense of her body in space. She felt overwhelmed by movement and sound if it wasn’t under her control but also craved vestibular and oral-motor input as long as it was on her terms. One thing we’ve had going for us is her incredible vocabulary and ability to express herself. If we asked her why she was scared, screaming, crying – she could sometimes (but not always) tell us. I will never forget the day that she was becoming distressed (again) as I pushed her in the stroller down the footpath. I asked her what was wrong and she said, “those people are coming toward me!” I could tell by the look in her eyes that to her disorganised little nervous system, it appeared that they were actually going to slam into her. The wind in her face blew “eye sharks” (aka dust) into her eyes… Messy hands were the end of the world.

It also became apparent that she was having difficulty with gross motor sequencing. Not too much, but just enough for a dance teacher turned Rolfer to take notice. That’s another thing we had going for us. Since I’m trained in deep tissue bodywork I can give her proprioceptive input. As a dance educator, I have lots of ideas for movement play at home. Actually finding time and energy to put this into practice daily is of course another challenge.

She mostly seems normal enough. But then we started gymnastics classes and in between her meltdowns I would sing in my head “one of these things is not like the other” for a little humor to get me through the hell (and I don’t just mean the full-blast Wiggles music they played). In spite of her perfectly executed forward rolls, once you got her up on a balance beam or any other piece of equipment that challenged her balance, it was obvious – this kid is different. And when she got disregulated – oh boy… You never knew how long it would take to get her back on track. Put her on the trampoline with another kid and you’d think she had PTSD.

But it turns out that dance, gymnastics and preschool have allowed her to build confidence in her body and to learn that it can be a joyful place to be and that she can even solve many of her own problems. We also got a lot of benefit from Occupational Therapy with the help of an amazing team who uses the DIR Floortime model. This gave me the confidence to believe that I could help her regulate her system, and I realised that I already had so many  tools to provide her with an adequate sensory diet – including some experience using Floortime-style interaction when I worked as an ABA and play therapist for children with autism 11 years ago.

All the while, I kept wondering why did my daughter end up with this “disorder”? What was the underlying cause? I have spent a year hunting down answers, and I have learned so much about our epigenetics, sensory profiles and metabolic challenges. I still don’t know everything, but I can tell you that all that we’ve done as a family to implement strategies to heal our guts, strengthen our connection and address the underlying biochemical issues has made a huge difference. The most important work however was and continues to be the rewiring of our nervous systems for co-regulation (specifically through my modeling it). If I jump into the deep end with her then we both end up sinking. Children are highly intuitive and sensitive beings, and I’ve learned that even when I’m not outwardly reactive, my daughter is picking up on my thoughts and feelings.

A year ago, I decided to stop taking my daughter to swim classes because it had just gotten too unpleasant. She was the only 3 year old in the “babies” class and the only one who couldn’t stand to have water on or near her face. We even started washing her hair only once or twice a month just to give us all a break from the drama and the trauma. We made swimming an activity of pleasure that she could do with mom or dad – no pressure to progress certain skills or to directly face the fears.

But we are no longer going to OT or to gymnastics and something told me that she needed a challenge. So I recently signed her up for five days straight of swimming lessons with her best friend and some really great teachers who didn’t question her when she proclaimed that she would not be going under water. That whole week, she never did go under water and wouldn’t even jump into their arms, but she had fun in spite of being right on the edge of some big fears. She squealed with delight and beamed at me from the pool. She only had two mini meltdowns – one of which brought her briefly out of the pool for a cuddle and the other one she snapped out of on her own. The best part was that I didn’t have a meltdown about her meltdowns, and I was able to accept her refusal to go underwater. I was just so glad to see her smile and to find out that she no longer needs me to be her life preserver. And to be totally honest, it probably helped that I had these with me.

To her credit she did put her face in the water a couple of times which was huge, but she mostly stayed just within her comfort zone only venturing slightly out when her teachers very gently coaxed her into expanding beyond her doggie paddle repertoire. Everyone else was practically swimming circles around her by the end of the week, but I didn’t care. And she doesn’t think it is strange to be the only mermaid lover with dry hair.

If there’s one thing I’ve learned from parenting its that you’ve got to know when it is time for riding the rapids and when it is time to keep your head above water.

 

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