If you are new here, this is my beautiful daughter, Penelope. She is ah.mazing. So kind and loving, but fierce (hmm, kind of like me!). She has the best memory and you can tell she got her father’s math mind, she can do puzzles 5 year olds can’t do. She loves ballet and cuddling with me. And she loves the beach and mermaids. She is a true water baby, born in water and always wants to be in the water.
To me she is perfect, but now I know my kid is special needs. I am still wrapping my mind around that sentence. Even though I know Penelope is perfect, sensory issues and gross motor delays and all, and that God’s plan is perfect, but it does feel like a punch to the gut to find out there is something “wrong” with your kid. My husband was in denial for the first month, part of it is because he is stubborn and doesn’t want anyone telling him anything that he didn’t come up or conclude himself and part of it is that he was just heartbroken and didn’t want to face the truth. If you have read this post, you know what kind knock-down, drag-out fights we are capable of. Thankfully now he is on board and “believes” her diagnosis.
One in six children have Sensory Processing Disorder or SPD, but it is often un diagnosed or misdiagnosed, because many children who are Autistic or have ADHD, also have SPD and probably just like me, parents brush off symptoms as nothing, or something they will grow out of, or personality.
Sensory Processing is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”
Penelope was diagnosed with SPD, right before we moved to South Florida. One of my best friends, Lauren, had her son evaluated a month prior and he was also diagnosed with SPD. After she told me, I launched into research for her and found several websites that listed the symptoms of SPD. Seeing all of Penelope’s quirks and behaviors in one place, on one list, gave me my “oh shit” ah-ha moment. In an instant, I knew Penelope was SPD. I did not need to pay over $700 for three evaluations to tell me what I instantly new in my heart, although we did go with the evals, one in Tallahassee and two in Jupiter.
Here and here are some good websites to tell you more about what SPD is and the symptoms to look out for if you supspect your child has it. Anyone who works with young children needs to familiarize themselves with SPD, because again, the stats are 1 in 6! All Penelope’s preschool teachers had years and years of experience, but never caught it. I have been teaching baby and toddler yoga for years, and had never even heard of it before, let alone didn’t catch her gross motor delays!
At first I felt guilty for not catching it earlier. I could have saved my whole family a lot of stress and strife had I known what was really going on. I had some gut hunches, but I blew them off because her speech was perfect, her fine motor skills are way above average, she played well with other kids and did great at preschool. She also hit all of her infant milestones, like sitting up, crawling, clapping, and talking early. I figured all her quirks were personality, since she was clearly gifted, but I was wrong.
Sensory Processing Disorder (SPD) acts like a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to understand and respond to sensation. People with SPD misinterpret everyday sensory information, such as touch, sound, and movement. They may over-respond and find clothing, physical contact, light, sound, food, or other sensory input unbearable. Or they may under-respond and show little or no reaction, not even to pain or extreme hot and cold. A third option is sensory-motor problems, including weakness, clumsiness, awkwardness or delays in acquiring gross and/or fine motor skills.
It’s hard to put the pieces together because each SPD kid is different and it is a spectrum ranging from mild to severe. And it can often be misdiagnosed for Autism or ADHD since many behaviors are the similar.
When I read the GAPS Diet book last year, (which is a book specifically written for parents of Autistic children-the diet will heal Autism symptoms as well as other gut based disorders like bi-polar, ADHD, eczema, asthma and epilepsy), red flags started to go off in my mind. The biggest red flag, was her love of lining things up in rows and independently playing for hours, a classic Autistic behavior. But I brushed it off and figured it was just personality, after all, she is the daughter of a very neat and organized mama and an uptight engineer-it seemed normal based on the environment she was growing up in. And part of me loved that she was such a great independent player, getting lost in her own world, so I could fold laundry in peace. Only now, I am realizing that sometimes I can’t access her world and it can make connecting with her difficult.
There were other red flags that I brushed off too. She never wanted to hug anyone other than me and sometimes not even my husband. She knew what to expect with me, a deep tight squeeze, which later I found out is very calming. Turns out she is over-responsive to light touch and a light hug, or brushing up against Papa’s facial hair was too much to bear for her. And the way she walks on her tip toes. I just assumed it was because she was so obsessed with ballet, turns out walking on her tip toes sends more messages to her brain than walking flat footed and it feels more safe and secure for her to understand where her legs and body are in space as she moves. Or that she can’t ride a bike or jump yet. I remember when she was about 20 months old, I was watching her in dance class and she really struggled with jumping. But her dance teacher told me that was normal for her age and that there was a wide window of normal of what age kids learn to jump with both feet. But in that moment, I knew something was off, but I didn’t listen to my intuition. I thought it was weird she would ride a bike for 30 seconds and then get off grumpy and frustrated, and do the same thing with kicking a ball or playing t-ball in the back yard-she wanted nothing to do with any of those physical, gross motor type things. I remember having a conversation with my husband and we both just agreed she was just not into sports. She liked ballet and she liked swimming. Both active healthy things, so who were we to make her ride a bike and kick a ball? So we let it go. We noticed that she always asked us to stop talking if she had to concentrate on something like eating or making art. We figured she was just a chill kid who wanted her peace, and thought, what’s wrong with that? Turns out she couldn’t actually focus and handle completing the act of eating or holding a crayon and drawing a line if she also had to deal with loud noise. And her picky eating was a red flag too. I just assumed it was normal toddler behavior, and that she was using food as an opportunity to exert her will and power. But picky eaters are often a sign of either a gut flora imbalance or a sensory issue. I thought that she refused to wear jeans and only wanted to wear dresses because she was a girly girl and it never occurred to me that she might over responsive to the sensation of the clothes on her skin.
After her diagnosis and some more research all her quirks and behaviors just made sense. On top of having SPD, her not being able to jump or ride a bike (gross motor delays) is because of something called Dsypraxia. And she is also low tone. Her balance and core strength is a bit behind. I honestly don’t really understand that part, but it’s a sensory motor thing that makes her clumsy and have low muscle tone. I never noticed it before, but she always asks for me to help her get off the couch or bed, and would ask me to pick her up when she had to walk on stairs. I just figured she needed a little bit of babying and that she was just asking for some physical touch and connection. But turns out she actually needed my help, she actually couldn’t get up off the couch using her tummy muscles. With the complex gross motor skills, because she is low tone and also because it is such a complex act that they just can’t figure it out-they can’t process all the information and senses needed to complete the task. Also, FYI for anyone reading this, if your kid is doing W sitting, you know with their knees together and their feet on each side of their body, that is a big red flag. Kids do that because it is a more stable way to sit when you have low muscle tone and poor core strength. So now we are constantly saying Walk on your heels! Sit crisscross applesauce!
SPD often have behavioral issues too. They can be super aggressive and not have any body awareness, or they can be very shy and with drawn. All small children have tantrums. It’s a part of the process of growing up and learning impulse control and frustration tolerance. Unfortunately, kids with SPD have to control more impulses and tolerate more frustrations than most other kids do, and their meltdowns are usually more intense and more frequent, and they have them for a longer stretch of childhood. Luckily, Penelope is not the kind of SPD that hits and kicks to protect themselves from or in reaction to sensory overload, but she gets very grumpy and moody and has lots of meltdowns. She does not have many coping skills other than cuddling with me and nursing (yes, she is 3.5 yrs old and still nursing). I couldn’t understand why she would be such a sweet heart when she felt safe and calm and be so rude and grumpy with strangers and new places. Even with her grandparents, she is still warming up to them, because they talk loud and have accents and their hugs feel different than a hug from me. But now I know she is not just being rude and I have utterly failed to teach manners, but that she is having a hard time processing the new person or thing and I am now teaching her to say things I like “I need a break, or I need some alone time, or I don’t feel like giving a hug right now, or I don’t like the way kisses feel on my cheek, give me a deep squeeze hug instead.”
I was actually relieved to get Penelope’s diagnosis, because I kept wondering what I was doing wrong as a parent. I have been taking care of infants for over 8 years (I was a nanny before Penelope arrived) and I have taken a ridiculous amount of early learning and infant care training and read every book under the sun about parenting, but all my experience and know how wasn’t “working” on Penelope. I always just assumed that she was a difficult kid because she was a difficult baby, and that I was just being tested so I could perfect my patience and increase my ability to help other parents, but I never thought it was anything more than her just being difficult.
After her evaluations, we have started Occupational Therapy once a week. We really should be doing twice a week but we are paying out of pocket for it right now, and can only afford once a week. I am praying that we will finagle a way to have insurance pay for it soon or get it covered through the public school system. But even with once a week and few tips and tricks like body brushing, joint hugs and other nervous system calming and organizing techniques and exercises to build her core strength, I have already noticed an improvement. It’s gonna be a long road ahead of us, one that will never be easy for either of us. But I am confident that with OT and alternative wellness therapies she will be a perfectly functioning child and adult, with probably a few lingering quirks, but who doesn’t have quirks?!
In the last two months I have read five books that I highly recommend to any parent with an SPD kid.
So my humble advice right now, since I am still new to all of this, is to get an evaluation, get your kid in regular Occupational Therapy, read all those books and change your kids diet. I also think that following a more natural living and parenting approach is a good idea too. I feel deeply now that if I had not done yoga, infant massage, breastfed her, carried in her a sling, co-slept with her, or if I had vaccinated her and fed her lots of conventional foods and grains she might have been full blown Autistic or have SPD much more severe with more pronounced delays. I am not saying that you can cause SPD or Autism by not doing yoga or breastfeeding, I am just saying those things make kids calmer, smarter and healthier in general may help to alleviate symptoms of neurological disorders. I do believe however that vaccines and grains can cause the flip to switch in some kids, similarly to how we all have cancer cells in us, but a unique formula of diet, genetics and environmental and spiritual factors cause the flip to be switched in some of us and not others. And SPD kids have so much anxiety about being in the world because the neurological misfires in their brain’s processing, it’s like they never know what is coming or how to deal with it, so they tend to need oral comfort like pacis, nursing, or soft loveys much longer than normally developing kids, so attachment parenting lends itself to allow that extra time of comfort that an SPD kid needs.
I also highly recommend reading the GAPS Diet book. Any kid who has any behavioral issues, delays or other disorders needs to be off wheat, dairy, petroleum based food dye and processed sugar, period. But if you want to take it a step further and actually heal their digestion and possibly heal their issues, you need to do the GAPS Diet. Cara, at Health Home and Happiness some great meal plan menus and an introductory ebooks that explain the GAPS Diet in more simple terms if the big honking GAPS Diet book scares you (like it did me- it took me almost three years to even get the courage to read it!).
In the coming months I will share as I learn, I am going to do my best to put background in yoga and massage to help Penelope as much as I can. And Lauren is going to share some great craft and activities to do at home with SPD kids.