October is sensory awareness month. During this month, we as parents, caregivers, therapists and educators all get to rally together to spread awareness of this disorder and how it affects those who have it. To do my part in spreading that awareness, I wanted to share a little insight into my life with a child with a sensory processing disorder. In particularly Tactile Sensitivity. Before I tell my story, I want to very briefly explain what Sensory Processing Disorder (SPD) is. One out of six kids deal with SPD daily, yet so few people have even heard of this disorder. I myself had never heard of it until five years ago when we discovered that our daughter London was dealing with it. It took a lot of time and research to even figure out what she was dealing with. Even the doctors that we took her to couldn’t give us the answers we needed until we started asking the right questions. My first hope in writing this post is that someone who is searching for answers for there child may find it here.
So what is a Sensory Processing Disorder? The easiest way I have heard it explained is that some kids have trouble handling the information their senses take in. So, in other words… things like sound, touch, taste, sight, and smell can give them either too much or too little stimulation, making them react in socially unacceptable ways. This can get in the way of the child functioning, effectively learning and even just being able to make friends.
Kids that process too little of their senses are called Hypo-sensitive. These kids crave more stimulation. Some have a constant need to touch people and textures and they do not understand personal space and boundaries. Because of the hypo-sensitivity to touch, they may not understand their own strength or they can be very fidgety and unable to sit still. Some may enjoy things like tight hugs or fast spinning and intense movement like being thrown in the air or jumping, bumping and crashing into things. Displaying extreme behaviors like drastic mood swings with environment changes, screaming when there is an overload of visual or auditory stimulation, throwing violent tantrums while getting dressed is something someone with SPD may display on a normal basis because all this extra or lack of stimulation is just overwhelming to them.
Little Miss London has a tactile sensitivity, meaning she is Hyper-sensitive to touch. She is over stimulated with anything that touches her like the clothing she wears or if someone hugs or pulls at her too tight like when we try to do her hair, put on shoes, put on her seatbelt/Car seat.
The first signs we had of London dealing with this was when she was two years old.
When London was a baby we lived in Hawaii and she lived in a diaper/swimsuit everyday. So when we moved back to snowy Utah and she had to start wearing clothes, our sweet happy baby had turned into a screaming terror overnight. She started to have melt-downs every time we got her dressed. Shoes were hard for her to wear, socks were impossible and brushing her hair was just another story. She would have uncontrollable tantrums almost every day. I was getting frustrated as a mother not knowing how to comfort my own child. I didn't understand why she couldn’t get dressed and just be a happy child again. All I knew was it was impossible to get her ready during the morning and she was constantly having meltdowns throughout the day. If you know me, you know that fashion has always been important to me and I wanted my child to look put together and wear all the cute clothes that we had bought her. On good days, I could struggle through the tantrum and somehow distract her till she forgot about what she was upset about… on the bad days, there was no stopping her and I would just give up and let her wear only her diaper or pajamas and flip-flops with crazy hair.
I remember one day in particular, we had the normal struggle to leave the house with clothes on and we finally made it out the door to go grocery shopping only to start another meltdown in the middle of the aisle. She full on started to scream and throw things out of the cart. I was almost done shopping and had a full cart of groceries and tried everything to calm her. But this level of tantrum always seemed to be out of her control with no end in sight except her own exhaustion. People actually walked over and stopped to stare and watch the show as I was being emotionally defeated by my three year old. I couldn’t handle it any longer so I just left my shopping cart full of groceries and left the store with my screaming child and purse under my arm. Later that evening we went bowling with extended family… once again she had a complete meltdown, throwing herself on the floor and rolling around screaming. I received a lot of parenting advice from strangers on what I was doing wrong and had their own ideas of what was upsetting her. When we got back to the car I had my own meltdown and start crying. I had no idea how to help London, it was obviously not a phase. It was on that day I decided I needed to really figure out what was going on.
This was something more than just a typical toddler tantrum, something was actually wrong with my daughter. We took her to a doctor and they told us she had eczema and ADD and prescribed her a bunch of medicine to solve it. I knew I didn’t want to take that route. It was something more than that. I started doing my own research. When I read about Sensory Processing Disorder, I realized London had a tactile disorder and was hypersensitivity to textiles.
This changed everything! I took away all Londons clothes with lace, ruffles, bulky hems, seams and tags. I removed all her clothes with elastic or fabrics that did not have a lot of stretch. Everything she wore needed to be extremely soft for her sensitive skin. When I was done, I couldn’t believe just how little there was left in her closet and I only got more discouraged when I went shopping to replace it. I found so few options for kids with this disorder. Come on… one out of six kids deal with this… shouldn’t this be easier?!? I decided if I could not find what I needed for her I was going to have to make it. The first thing I made for London was a twirly dress. It was made with the softest knit fabrics I could find. She wore that dress every single day. I had to sneak in her bedroom at night while she slept just to wash it. And the best part was we finally figured out the meltdowns. Our family dynamic had changed. London had changed, instead of screaming and crying every day, she was happy and could be a kid again, one that actually wore clothes!!
I knew I was not the only mom looking for these things. We found so much peace with a simple item of clothing and I knew I needed to share that peace with other families. That’s how our company London Bridges Clothing started. London is now seven years old and still struggles daily with this. But I can’t remember the last time she had a melt-down. We know how to handle it. She never took medication, we just made the changes necessary for her to live a comfortable and happy life.
My experience is just one and it just scratches the surface of what someone with this disorder experiences. Some kids will show small signs, others more severe. Just knowing about this disorder will help you to know how to better help a child and avoid being misdiagnosed with something else.
My main hope in writing this article is to spread the word about a very common disorder that very few people know about. Spreading knowledge of SPD will hopefully make it so more children’s needs can be met and that there might be more available for people with SPD. But also so people could be a little more understanding when you see a parent struggling with a child’s melt-down in the middle of the grocery store. Don’t judge so quickly if you see a child wearing their clothes inside out, pajamas to school, flip-flops in the middle of winter, their hair is a total mess or someone who just acts differently than you. Chances are we already know. Just the fact that we made it out the door that day with clothes halfway on is a victory in itself. Kindness and compassion can go a long way.
Owner & Designer of London Bridges Clothing