Healthy Kids

My Kid Has Sensory Processing Disorder

 

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.

*Raising a Sensory Smart Child-The Definitive Handbook for Helping Your Child with Sensory Processing Issues. By Nancy K. Peske. 

*Kids Beyond Limits. Breakthrough results for children autism, Asperger’s, brain damage, ADHD, and undiagnosed developmental delays. By Anat Baniel.

*Children of the 5th World. A Guide to Coming Changes in Human Consciousness. By P.M. H Atwater.

*The Out of Sync Child. By Carol Stock Kranowitz.

*The Out of Sync Child Has Fun. Activities for Kids with Sensory Processing Disorder. By Carol Stock Kranowitz.

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.

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  • danyelle
    July 18, 2013 at 3:44 PM

    as a fellow SN mama, I hear you. I hear you. I hear you. Accepting the diagnosis was hard for us, although for different reasons than parents of other diagnoses but even when we came to terms with that, it still takes my breath away sometimes. you, your husband, and Penelope were all given to each other bc you’re the perfect team to tackle this diagnosis and all that comes with it. ALL the best you guys.

    • Stephanie
      July 19, 2013 at 4:25 AM

      Yeah, it was hard. It is hard. Sometimes I find myself wishing for an easier path. Thanks for the well wishes.

  • Mehren
    July 19, 2013 at 1:29 AM

    I am a speech therapist an I just went to a conference on SPD today! Thanks for sharing. Best of luck on your journey. It sounds like you are off to a great start.

    • Stephanie
      July 19, 2013 at 4:25 AM

      Thank you.

  • Nic
    July 19, 2013 at 1:30 AM

    Oh my gosh. I think I am having my oh shit moment. I have 4 little girls and my second, sweet Edie has so many symptoms of SPD. She is so clumsy, always tripping over and running into things or getting under my feet. She loves the tightest hugs from mama and nearly crushes my ribs giving them back. Like Penelope she hit all her gross motor skills in the right time frame except jumping, it was really hard for her- but through Gymbaroo-a toddler / preschool neuro education program here in Australia we worked on exercises to help her. At 5 she loves ‘free dancing’ but has stopped going to classes as she becomes so frustrated trying to understand the complexity of the choreography she is given. She is a water baby and LOvEs swimming but cries when she has to go to lessons as she stumbles over the correct technique she needs. Sports day at school is a tearful mess, he can’t stand the kickin and throwing games and tennis lessons were short lived….although we put all this stuff down to her just trying to find her niche. Our 8 yo is quite a talented athlete and we had been comparing little Edie to her, thinking well of course she can’t help it if it doesn’t click immediately like it did with her sister. Like you we have been thinking personality and genes too, my husband is a great athlete but will trip over his own feet given half a chance hehehe and I’m just plain uncoordinated…we figured one child would get both our quirks…. I’m going to look further into it. Thank you so much for sharing xxxxxxxx

  • Nic
    July 19, 2013 at 1:42 AM

    So many other symptoms are also fitting-eating habits, sleeping, learning to read, her place in space. rough housing, her speech isn’t as naturally fluent, she struggles with interpreting questions and has a really high pain threshold.I feel so awful for all the times I’ve thought she was just ‘not a listener’, being too much of a couch potato by preferring sedentary activities. I’ve never forced her to do anything she didn’t want to but always encouraged her to keep trying her best and always introduced new activities (which probably just stressed her) to try and find things she’d like doing. She is so clever, brilliant at math and science., puzzles, art & craft. Like you I have brushed everything else off as quirks.

    • Stephanie
      July 19, 2013 at 4:26 AM

      I hate to hear another kid having a hard time, but so glad you read this post and it gave your ah-ha moment. wishing you and your child lots of love and healing.

      • Nic
        July 20, 2013 at 3:45 AM

        I actually looked at some notes I have from when I worked at a neuro /physical education program for kids ( years ago…) this morning. Edie’s gross motor skills seem to be perfect for her age (yay!!!). The main problems she has are with multi step instructions and tasks like serving a tennis ball, swimming with both arms, kicking, breathing and remembering exactly what to do every second .This could be SPD but could just be a kid who isn’t so coordinated (she is 5!). The alarm bells are things like not being able to eat whilst walking around and her reading progression – she is fantastic with phonics but it having a hard time learning sight words and becoming fluent – still, she IS only 5! I just know that there is something behind her ‘turning off’ when she’s frustrated by something.The other things like her absolute need to touch, be close, tripping over all the time,never seeming to feel pain, lack of spatial awareness and food fussiness are all pointing to some level of sensory integration disfunction. So grateful to you for opening our eyes to the fact our little cherub may not just be clumsy, lazy or uncoordinated, though we’d love her dearly even if she was!

        • Nic
          July 20, 2013 at 3:47 AM

          Check out Gymbaroo Australia, brilliant for SPD 🙂

  • Lindsay Stuart
    July 19, 2013 at 2:32 AM

    Thanks so much for this article, although I am pretty sure my son has ADHD and not SPD, this has really encouraged me to push forward in my effort to understand him and work with his needs better…I have known for a while now that something is a little “off” with him and my pediatrician keeps brushing me off and telling me he is just a little boy…and is refusing a referral to a behavior therapist for an evaluation…I am definitely going to push this issue, he is four and at least needs an evaluation by a behavior therapist and not just a pediatrician that spends maybe ten minutes at a time with him..thanks again I will be checking out the diet and other resources you have listed 😉 Lindsay

    • Stephanie
      July 19, 2013 at 4:27 AM

      Keep going with your gut! And def check out that GAPS Diet book and resources, so many parents have had great results with dietary changes with ADHD kids.

  • Audrey
    July 19, 2013 at 3:46 AM

    Hi Stephanie!
    Thanks so much for this post! 2 of my 3 kids have trouble with sensory integration, and I can totally relate to your feelings. It’s so important to share information about sensory processing disorder, because many of these kids are misunderstood and labeled as “bad” or ” difficult”. There are so many ways to help children with SPD. I share lots of sensory play ideas on my blog http://www.therealitiesofparenting.com.
    Thanks for being brave enough to share your journey with us!
    Audrey

    • Stephanie
      July 19, 2013 at 4:28 AM

      Yes, exactly. The more we talk and share and don’t keep these conversations in a dark and shameful closet the better we will be able to serve and help the kids who are having a hard time. I will check out your blog, thanks!

  • Karla
    July 19, 2013 at 4:09 AM

    I also have little ones with sensory issues, the understanding goes a loong long way! Even just as I have changed my view on the behaviors and ‘quirks’ the frustration on their behalf has been less and less which in turn lessens my stress also. My hubby still on denial also which means the therapy isn’t available on a clinical level, only at home!

    • Stephanie
      July 19, 2013 at 4:29 AM

      Totally! I used to get so frustrated that she couldn’t pull up her own panties. As soon I as understood that she didn’t have the balance and strength to bend at the hips and use both her hands to pull up her panties with both hands all that frustration went away! Well, most of it, I still wish she could pull up her panties on her own, but now I understand why.

  • Denise Osborn
    July 19, 2013 at 4:17 AM

    It is very hard for me to wrap my mind around the SPD dx. What you describe is all normal child behavior. All my children were different in the way they developed. I call my son “Quirky”. He could be described to be SPD in some ways. I just dealt with things as they came with him. He grew up to be a very gifted son. He graduated at the top of his class and is in college now studying to become an engineer. He still has many quirks but he now deals with them himself. I hope you find a way to help your child but also remember everyone is different.

    • Stephanie
      July 19, 2013 at 4:24 AM

      Actually, no, what I am describing is not normal behavior. It might be at a certain age, say not jumping at 18 months, but not being able to jump at almost 4 years old is an actual delay and an actual disorder. Just because she can’t jump doesn’t mean she is not gifted, it means she has Sensory Processing Disorder and Dsypraxia. She’s not just different, she is having a very real and very hard time processing and experiencing the world around her. But you are right, most kids figure out how to deal and cope eventually, even if left to their own devices and no one helping them, but why would anyone not want to help their child experience life a little easier and reach their highest potential.

      • Nic
        July 19, 2013 at 11:58 PM

        Absolutely love your reply 🙂
        I had a chat to my husband last night and we’re sure our little one has sensory integration issues and are going to look into it through our friend who is a neuro expert. I think it’s mild and hope this has a bit to do with the work we have done without even realising it- attachment parenting, a good diet and lots of opportunities for sensory play… she co slept with us until 2 when she night weaned and as an exercise scientist i have been able to see where she’s needed help with motor skills and assist her…I just didn’t realize it was her sensory perception affecting he ability. It is such an eye opener and I really think we will be going leaps and bounds when we where she is coming from. Thanks for sharing again xxxx

        • MM
          August 20, 2014 at 2:57 PM

          Love her reply too. My daughter’s just now being diagnosed with SPD and is a sensory seeker. She’s had regulatory issues and trouble sleeping since Day 1. I’ve explained all of her sensory seeking behavior and sleep issues and my own mom can’t wrap her mind around it. Keeps saying it’s normal kid behavior and she’s just a light sleeper. I’m just like, “MOM. SHE HAS A PROBLEM.” I hate when people are so dismissive about it. They have no idea what it’s like for our kids or for we as parents trying to do everything we can and it still doesn’t seem like it’s enough. So glad to be getting some answers. She’s turning 3 soon and I want to make sure she doesn’t wind up getting labeled as a problem child in school because she has a hard time focusing and staying still.

  • Kira
    July 19, 2013 at 5:47 AM

    My daughter has also been diagnosed with SPD this year and we are in OT now and definitely seeing improvements. I was sharing our struggles with a friend today and she passed this link onto me. Like you, once someone actually confirmed that there was a problem, that L was experiencing the world around her differently, things started clicking. It was reassuring to know that there was help out there for us, but also disheartening to know that there was a problem at all. Taking things day by day over here and just wanted to comment that it was comforting to know that we are not alone! Thanks for your post.

    • Stephanie
      July 19, 2013 at 2:47 PM

      Thanks for reading and sharing.

  • Jill
    July 19, 2013 at 10:56 AM

    OH MY. I was reading this and thinking of my daughter (7 1/2). She always sits on her knees with her feet out even on chairs, and when I have her sit normal she falls our of said chair. She will bounce back up and say “I’m fine and sit again”. We homeschool so I thought she was just very clumsy. She is my very picky eater but could never figure out why. When she was a baby she LOVED all over her veggies as long as they were pureed, but once they had umph to them she stopped eating them. When she was old enough to answer questions I asked why she stopped liking her veggies – she did not like the way the felt in her mouth. She hate to have her Uncle Marvin give her hugs and kiss – he has a mustache and does not like how it feels. She hates meeting new people and will hide. We started going to a new church when she was 2, she had issue with me leaving her at Sunday school until she was about 6 (always crying and holding on tight). She still does not ride a bike that was given to her at the age of 5. She was walking on tip toes through the age of 4. And she still co sleeps. She is good to sleep in her own bed maybe 1 night a weeks sometimes 2. Up until about a year ago she and my son had gut issues so as a family we went Gluten/Dairy free. Still have issues but they are a lot better. (we are also vac free) And I am so glad that we are now that I have read this. We have started Amanda in Karate lessons and if she can’t follow the teacher like all of the other kids she gets very frustrated. The teachers have been great and are spending a little more time with her. My head is swimming. Need to spend a little more time researching this. For those that say this is all normal, my daughter still has problems opening a sippy cup on her own its too hard for her. Now I have an idea of what is going on. Thanks again for a wonderful, insightful post.

    • Stephanie
      July 19, 2013 at 2:46 PM

      Oh man, my heart breaks for your little girl! I am sure she is SPD and has been silently suffering for a long time. You are at the first step to helping her though! Lots and love and prayers to you both.

  • shannon
    July 19, 2013 at 11:01 AM

    It is soooo hard watching your child struggle..I knew something was not right pretty early on, and we started therapy @18months and still go 2x a week. He didnt really start talking until he was 3 which was difficult for me mostly because you could visibly see how he was struggling. Its a long road but I’m so thankful that I went with my gut otherwise it would be that much harder now. Penelope is lucky to have you as a mom and you guys will help her through!!!!

    • Stephanie
      July 19, 2013 at 2:44 PM

      So hard!

  • Carla
    July 19, 2013 at 2:03 PM

    good morning, I don’t think I am your normal reader. I’m in my early 60’s, have four grown children and 2 grandchildren. I learn so much from your blog. I had my first two children in the hospital and the last two at home.
    I wanted to be a post-partum doula, but that never happened. Your baby is such a beautiful child. I had never heard of SFP. As I read through your article, I couldn’t help but think, wow, it’s a good thing Stephanie took such good care of herself and gave the very best care to Penelope. What a good Mama you are. Keep up the excellent caring you do and thank you for sharing.

    • Stephanie
      July 19, 2013 at 2:44 PM

      Thanks so much Carla. I actually have a lot of middle aged women readers! I think they come for the recipes and then stick around because they are interested in learning things for their grown daughters and grand-children, I love it!

  • Amanda
    July 19, 2013 at 6:32 PM

    Thank you for sharing Stephanie. I am just part way through the GAPS diet book myself. Having a few moments of guilt knowing that I didn’t give my 1 yr old boy the best possible start not knowing what I know now about gut flora and the state of my own gut and how it affects him directly (birth/breastfeeding). It’s probably too early to tell if he has any GAPS condition symptoms, but I want to do my best knowing what I know now. I haven’t fed him grain and only a little dairy (whole milk kefir, but pasteurized). I haven’t finished the book but are all these conditions because of diet mistakes? Is it even preventable at all? I want to continue breast feeding, but want to get my milk in better shape. I’m eating close to a wapf diet but not 100%. My worry is that I’m not absorbing the nutrients because of chronic canadia problems and therefore poor stomach acid and toxic alcohol produced by the candida. It’s kind of paralyzing. Can you get enough for nursing while on GAPS? Thanks!

    • Stephanie
      July 21, 2013 at 1:28 AM

      I don’t know honestly. I think probably 80 to 90% of it is diet related or diet related inherited. This is a study that just came out that says that it is a biological brain disorder, ie their brains are just different. But there is also a lot of research that the brain is plastic and morphs and changes based on the environment of the body and stimulation of neural pathways. They need to do a brain study of kids and adults before GAPS Diet and after the diet, and I would bet a million dollars (if I had it!) that the brain does in fact change and heal after the GAPS Diet. I do think you can prevent it, with perfect nutrition and mega healing before you get pregnant and then maintaining perfect nutrition during pregnancy and nursing. But that is pretty unrealistic for most of us, including myself, so I am just gonna keep doing the best I can. Diet is the not the be all and end all (GOD is!) but I think diet is huge.

  • Abbey
    July 21, 2013 at 1:58 PM

    Man, I was really really excited to hear you share your story, and it’s really so great that you are such an awesome mom to Penelope! You obviously work really hard to ensure you have a happy and healthy home for your family and that is wonderful. So, please know that I really like your blog, and take this next statement with an open heart. I was with you, cheering you on throughout your story, right up until the end…..then, what? Wait? Oh, awesome, so it’s MY fault my kid is the way he is because I didn’t baby wear? Breast feed long enough? He’s been known to eat lucky charms occasionally…all those grains and artificial dyes!! Don’t get me wrong. You making those choices for your daughter are GREAT! I really wish I was able to produce more milk and breastfeed longer. Baby wearing just didn’t jive with mine. I totally wish I had more discipline and my husband was on board with a completely processed food free diet, but guess what…..my kids still eat graham crackers and non organic cheese sticks….and cereal! We do the best we can. I whole heartedly agree that diet is huge, and that all these topics are certainly nice and beneficial. Maybe I am just really reading into this, but by saying your daughter is so much better off because of these things, leaves me with the insinuation that my child’s diagnosis is my fault. Maybe it totally is. Maybe I ate too much ice cream or drank a few too many diet cokes while he was in utero. I did smoke for the first few weeks of my pregnancy before I was able to kick the habit,; maybe that was it. I mean, I’m really glad your child doesn’t have “full blown autism” or anything….like mine. Again, your decisions are really truly wonderful ones and applaud them. Please remember to tread lightly and the topic of disabilities that doctors have yet to fully and completely understand. Nobody knows exactly why many of these neurological abnormalities occure. Maybe we can just agree to disagree, but I don’t feel like vaccinàting my child made him autistic, or not breast feeding long enough. I believe this is the way God created him and I am learning to see the intricate beauty in this amazing creation.

    • Stephanie
      July 21, 2013 at 5:41 PM

      I don’t appreciate your tone of delivery, it’s clear something in this post triggered something in you and you are reacting and I normally don’t tolerate that here. But I am glad you commented so that I can make my message more clear. I am not saying that you caused you son’s autism by not breastfeeding or eating lucky charms. This is what I am saying and have just added to that paragraph to make it more clear:

      “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 (both from mom eating them in pregnancy and while nursing and by the child consuming them by themself) can cause the flip to switch in some kids, similiary to how we all have cancer cells in us, but a unique blend of diet, genetics and enviromental and spiritual factors cause the flip to be switched in some of us and not others.”

      If I were you, I would read the GAPS Diet book immediatly, to get a better understanding of what I am talking about.

  • Abbey
    July 21, 2013 at 6:39 PM

    You are right, I was reacting. I sincerely apologize if it offended you in any way. I was just very struck by that paragraph. When you get that inkling, and then the diagnosis that there is something “wrong” with your child you immediately question everything you have ever done, eaten, breathed, etc.. Wondering how this could have been prevented. I beat myself to a pulp thinking I could have done something to change things for my son. Now, finally getting to a place of acceptance, moving forward with all his amazing progress, and harnessing his super smarts, we are at a good place. Like I said, I was excited to hear your story. My son is autistic, but I am blessed that he is very very high functioning. His symptoms in fact sounded a lot like your daughters, so I thought it would be so nice to truly relate to another mother. Then reading the bottom paragraph, it just felt like you were a little lofty with all the things you did right, and it’s because of those things your child isn’t “full blown autistic”. I don’t know why hearing that just feels so painful to me. I realize this was a reaction. A super painful reaction. Maybe you would feel that way if some one with a neuro-typical child said, “I’m so glad I did x,y,and z. My kid would surely have spd if I hadn’t.”? Maybe you wouldn’t. I don’t know. I thank you for adding your paragraph and clarifying your statements. Re-reading through, I do see what you mean, and you are completely entitled to your opinions about vaccines or grains or anything else. I wasn’t trying to dispute them. I hope you know all of my praises of your choices were truly that! There was no sarcasm, no malice. They are all great for you and your family. I have looked at GAPS on briefly, but will decidedly do more investigating. I would like to understand what you are talking about more clearly. Again, apologies if I offended you. I didn’t realize it would be taken quite so harshly, so I will certainly try to watch how I’m feeling and how I word things before further posting. All the best, Abbey.

    • Stephanie
      July 22, 2013 at 12:09 AM

      Thanks for the apology. I reacted too, because I try so damn hard to not make any one feel bad and go out of my way to say this is my experience and I am just telling a story, and make it’s clear I don’t think I am better than anyone else, so I took it very personally. To be perfectly honest I do think I caused my daughter’s SPD. If you read the GAPS book, you will know why I feel like that. Digestion is inherited. SPD and Autism are digestion based neuro disorders or gut based diseases. ADHD, Bi-Polar, Excema, Epilepsy, Autism, Asthma, OCD, Dsypraxia/SPD and Schizophrenia are inter-related diseases. So for example, my mother is Bi-Polar, my brother is ADHD, I am a bit OCD and now my daughter is SPD. All because of the digestion my mother inherited, that I inherited that my daughter has now inherited. It all manifested in us differently, based on the unique blend I mentioned in the other comment, but it’s all related. But this is just my opinion based on what I have read and what I feel in my gut. Lots of love to you and your son.

  • Heather
    July 23, 2013 at 4:14 PM

    As far as insurance for OT goes, if Penelope could in any way have an autism spectrum diagnosis, even T the sry
    Mild end (I’m not saying she does) insurance companies must by law provide coverage for her therapy. Just food for thought. Some providers may be willing to stretch the coding and be creative with fherapy to get you what you need without flat out lying.
    She is lucky to have such a dedicated, proactive mama.

  • Rachel
    July 24, 2013 at 3:18 AM

    Thanks for your post. My 7yo son is highly gifted and has SPD. He alsohas developmental coordination disorder, which is a term often used in exchange with dyspraxia. I too felt relieved to get a diagnosis, which is recent. It has been painful to deal with educators who assumed he had ADD and autism. We have not started OT yet. It’s great that your daughter was diagnosed so early, wish we had the info sooner, but are excited to finally know what to do next! I’ll be checking out some of those titles you recommended. Thanks!

    • Stephanie
      July 24, 2013 at 10:29 PM

      Interesting, I hadn’t come across that term yet, much easier to explain than dyspraxia. Thanks for the info!

  • Stephanie
    August 1, 2013 at 3:46 PM

    Hi! I’m pretty sure I could write this exact same post AND my name is Stephanie!! My daughter and I are also beginning the SPD journey and have much to learn! Everyday I find something new to help her, but I’m still always worried, always stressing out…

    It is hard to get my brain around and some days are better than others. We are very lucky to have an AWESOME OT who is just magic…I’m convinced!

    I’d like to share an experience we had just last weekend:

    So we went to see The Little Mermaid at an outdoor theatre last weekend. I thought we didn’t need any of our sensory tools….WTH was I thinking??? Abby fell and scraped her elbow as we were going to our seats and the s&*t hit the fan. She is screaming, total meltdown…I’m sure she was just scared from the fall and totally overwhelmed by the people (me too…as I had never been there before!). We finally got to our seats and she is sobbing, I’m trying my best to calm her and I look up and her OT appears out of no where. I swear I almost started crying I was so happy to see her. She got Abby calmed down, whipped a band-aid out of her purse and just made everything better. I have never wanted to hug someone so much in my life. Next time we will bring her weighted cat and some other tools.

    Oh, I have so much to learn. Let’s just keep on keepin’ on, Mamas! 🙂

    • Randa
      August 4, 2013 at 9:03 PM

      What a great story, Stephanie!! So cool that her OT was there… sounds like divine intervention to me! 🙂

      Blessings to you & your little one.

  • Amanda
    August 1, 2013 at 7:03 PM

    JUST.LIKE.MY.SON!!! Except he was 81/2 when he was diagnosed. We figured he was just difficult and just didn’t want to ride a bike or swing, and that he just hated sports. He is dyspraxic too, although I’m confused as to whether dyspraxia is SPD? They seem so similar. Thanks for this excellent explanation/personal history. I’m going to forward to my son’s teachers to enlighten them as we start fourth grade. And just FYI, we have been doing OT and have seen amazing results, but it wasn’t until we went through several therapists and found one who specializes in non-Autistic kids with SPD. Yet we, too, have a long way to go! Please keep us posted on your diet too. Mine is of course a super picky eater, and I’m considering eliminating grains. We do raw milk, so I think that is ok as far as diary goes. One book I recently read that I found helpful was “Cure Your Child with Food: The Hidden Connection Between Nutrition and Childhood Ailments.” by Kelly Dorfman. Thanks again!

  • Cindy
    August 2, 2013 at 7:40 PM

    I have 2 girls. Both are extremely bright, wonderful children and both are SPD. They were diagnosed at 3 and 5 years, but the only thing they shared problem-wise was an intense hatred for socks (the seams). We did 2-3 years of OT for each and it helped. It didn’t cure anything so much as taught them what they need to live with the quirks..for the most part they still have their issues, but they know how to handle them too. (with the exception of the one’s inability to cross midline. That got fixed.) Each year though, I have a meeting with their teachers for the year and explain about their SPD issues and how they manifest and how they handle them. It helps the teachers to know so they don’t force my kids to be loud and answer questions immediately when school starts but they let them have a couple of weeks acclimation. They allow the kids to put their heads on their desks or even to leave the room if they start overloading. The teachers and the school have been fantastic.
    Interestingly enough, in the process of having the kids in OT, the OT turned to me and asked when I had been diagnosed as SPD. She immediately realized it was news to me when I just stared at her, but apparently, many times SPD runs in families. Back when I was being raised (’60s-70s), you were just quirky and although you might have struggled to deal with various things, they weren’t recognized for they the real problems they were because the knowledge base wasn’t there to identify things. We know more now so our kids are better off than we were just as we’ll know even more by the time they have kids so those kids will be even better off.

    • Stephanie
      August 3, 2013 at 2:46 AM

      We have a conference set up with Penelope’s teachers, and her OT the week before school starts. I dropped off books and reading materials this week. I so hope they are understanding and accomdating. I am paying out my ears for a private Montessori school, so they damn well better be! 🙂 And the more I learn, the more aware I become, I am wondering a lot if I am SPD too.

  • cspang
    August 2, 2013 at 7:45 PM

    I am a mama of an SPD kid too. We have been dealing with the diagnosis for two years. Every day brings new joys and challenges and what works for some kids, does not work with others, we always say our kids are unique, this proves it is true!!! We have found wonderful resources that helps our son be able to do all the things that most kids get to do. Our best discovery is a camp located in our home state for kids with SPD. Kids from all over the country come to the camp, CAMP AVANTI, to experience a week’s worth of fun and occupational therapy, along side amazing OT’s from all over the country. The camp was created by Patricia Wilbarger, the creater of the brushing program for SPD kids. It is an overnight camp but they also have the option of day camp for younger kids. Search for Camp Avanti online, you will find it. Our son tried a regular summer camp and they said they could provide the extra support he needed, he did not get it and it was an awful experience. He was sad that he could not go every year like his sister and then we found this camp. He has gone the last two years and the experiences he has are priceless, the information we gain is invaluable and he comes home as such a different kids with all sorts of tools to help him cope. I would welcome questions or concerns or just to lend an ear or shoulder to anyone else who is dealing with this in their family. Find me on FB.
    DePere, WI

    • Stephanie
      August 3, 2013 at 2:43 AM

      THANK YOU!! I loved my summer camp experiences and was so looking forward to sendnig Penelope to camp, but then realized that dream my never be a reality for her. I literally could cry finding out about this camp. Thank you, thank you, thank you!

  • melissa
    August 7, 2013 at 6:16 PM

    My son too has SPD, we were lucky to catch it at 20 months. He started with a program in our state for 0-3 then transitioned to the school district at age 3 (which I think most states do?) and received OT three times a week. He is now about to begin 1st grade and has exited the special needs program! Through therapy we have taught him how to manage his own sensory needs and now he can! – although at age 7 they have become very minor. We are lucky to live in an amazing school district but all districts have the resources. As long as she displays a delay that hinders her learning habits they should be able to help. Good Luck!

  • Jennifer
    August 18, 2013 at 7:43 PM

    Hi Stephanie. Thank you so much for your transparancy and honesty. I think your story has also given me my ah-ha moment. We have been struggling with my daughter since her 4th birthday. She is now almost 5 1/2. Now that I look back there were signs before she turned 4 but they were not as bad. We switched pediatricians because we felt like we were not getting anywhere with the old one and the new dr. sent her for an MRI and EEG to look into a possible seizure disorder but both tests came back fine. Now that i have heard your story and am researching more and more, I think she has SPD. She is extremely sensitive to smells, noises, lights, etc. She doesn’t like the sound of some peoples voices and gets very upset when they will say Hi to her. She likes us to wipe off our lips before giving her a kiss because it bothers her if it feels wet. She gets nervous in new situations and crowds and immediately turns to me to hold her. When she gets a small scrape, or bug bite it literally consumes her. She also has complete meltdowns over things that other children seem to not care about (comparing her mostly to my 2 older children) such as being first in the car, opening the door, being handed her drink first, etc. Lately she has been experiencing different things like complaining of feeling her heart beating or her throat itching on the inside or other things hurting for seemingly no apparant reason.. She also has a hard time getting a sentence out if, for example, her brother and sister are talking to eachother, she seems to not be able to get past the distraction of them to tell me something. More recently certian cloths have been bothering her if they are too loose or too tight. She is also sensitive to things being hot or cold. And there is definitely more. Sorry for rambling. To me, the evidence is all here and I think that we have found the answer. But I guess I just second guess myself because every time in the past when I think we are on to something we always get set back. For a quick example, back in April we removed all food dyes and processed foods. We saw a great improvement in her behavior. I thought “this is it, we have our answer….she reacts to food dyes, etc.” It was great (or at least way better) for a good couple months but now I am seeing the behaviors again and some seem worse than ever. I have felt deep down in my gut for a long time that something has always been a little bit different with her. It’s been so hard to feel the judgement of others when she will do something and I will just kind of brush it off. I refuse to repremand her for something that I feel is not her fault. It has been a long, long road and to me this just seems to put all the puzzle pieces together. I guess I just don’t know how to start the process of a diagnosis. Do I just set up an appointment with her pediatrician and say, “hey I think my kid has SPD” ? I guess I’m just scared that they will think I’m crazy. Again, thank you so much for everything you do. It really helps to feel like you can relate to someone and you’re not the only person going through something.

    • Stephanie
      August 20, 2013 at 12:59 AM

      Oh man, she def sounds like an SPD kid. Yup, you are exactly right, just call your pediatrican to say you want them to give you a prescription to have an Occupational Therapist do an official evaluation. Then your ped will review the OT’s report and make the official diagonis for your insurance, if they cover treatment (ours still does not). Read some or all of those books I mentioned, but get an eval done ASAP. Lots of love to you and your sweet daughter.

      • Jennifer
        August 22, 2013 at 4:20 AM

        Thanks so much Stephanie! I talked to her pediatrician and she is sending over paperwork to the children’s hospital. She said I should hear from them within a week to schedule an appt. for an evaluation. I just want to get this show on the road, it breaks my heart to see my poor pumpkin struggle. Also, I saw your posts about Penelope’s first day today. Such a brave little girl (and Mama)! Sending prayers that tomorrow is an easier day for both of you!

        • Stephanie
          August 22, 2013 at 2:32 PM

          Thanks Jennifer! I am convinced it was the carline routine that threw her off, she is used to my husband and I walking her in and walking her to the parking lot. I am praying that is it, and that today is a much better day.

  • Claire
    August 20, 2013 at 4:16 PM

    I found your site because of your cookbook (which is great! I just made 20 meals on Saturday!), but I’m loving it outside of the cooking part too! I think it’s great that you’re still nursing and I agree that your daughter’s symptoms would probably be more pronounced without all of the wonderful things you do for her. In reading this I’m really reminded of my brother, who is an adult now, but has many of the symptoms (and possibly aspergers). I wonder if occupational therapy would have been around back when we were kids (or maybe it was, but my mom didn’t know that he should be in it) that he would be a more functioning adult now. He’s a very smart guy, but can’t find work even with a bachelors degree. I guess my point is that it’s great that you found out what’s going on and that you’re working with your daughter to help her. 🙂

    • Stephanie
      August 21, 2013 at 3:37 PM

      Thanks for sticking around for the non-cooking stuff! OT started in the sixties I think, but honestly still most people do not know what it is or what they do. Your brother will be in my prayers.

  • Jessie Daly
    October 9, 2013 at 6:10 AM

    I love that I found this! I am a clothing designer and have just accepted a clients daughter with SPD. I will be making clothing for her and well, figuring out how to do that involves reading for hours about SPD. I am wondering if you can recommend clothing styles? The girl is 5 and she doesn’t like waistbands or underwear and pulls at her dresses. Any advice would be appreciated greatly.

    • Stephanie
      October 9, 2013 at 2:46 PM

      Each SPD kid is different, but in general, they don’t like to wear anything that is scratchy, or constricting-for example, I can not get Penelope to wear jeans even with bribing her with all the chocolate chips in the world. Tags will drive them insane. So super soft cotton, with no tags, and loose and big, is what Penelope prefers.

    • angela
      February 25, 2014 at 11:06 PM

      i love this Jessie! i am a pediatric OT and what a great thing you are doing to design clothing especially for this little girl:)

  • April
    October 17, 2013 at 6:11 PM

    Stephanie, thanks for sharing your very personal story. I can relate. Our son has been diagnosed with SPD, along with speech apraxia. At first we were heartbroken and then we just decided to ” get to work” with therapies. He gets speech, OT and PT. I wanted to mention to you that the PT is working on strengthening for him as well as climbing stairs, jumping over objects, etc. the OT works on strengthening too, but takes a more sensory approach. Our insurance covers NOTHING. Not one dime and as for Heathers comment about insurance having to cover with an Autism diagnosis, that is simply not true. Every state has different insurance laws. Our state has something called a deeming waiver you may want to look into. It is a special medicaid for kids with special needs without income requirements. Meaning you don’t have to have low income to qualify–just a child with certain special needs. My son is three and has gone from only saying about 40 one syllable words 8 months ago to speaking in sentences. I know speech helped with this but I truly believe the sensory issues impacted his talking. He is also very sensitive to noise–will run in fear if I take out the blender, vacuum or kitchen mixer. Playgrounds are overwhelming but some days there are better than others. To wrap up, just want you to know other mamas understand your challenges, your secret wish that you’d like your daughter to just be easier and ” typical” in terms of her development, and how overwhelming it can be. My advice would be to figure out how to do as much therapy as you can as early as you can. Early intervention is key as young brains have more plasticity. I’m sure you already know that. Good luck and I’ll include your beautiful family in my prayers.

    • Stephanie
      October 17, 2013 at 9:44 PM

      Thanks so much for reading and commenting April.

  • Jennifer
    November 11, 2013 at 5:32 AM

    Stephanie,

    I just came across your blog post when I was searching for “is montessori good for kids with sensory processing disorder”. My son was recently diagnosed with SPD (well, our OT is actually calling it Sensory Integrative Disorder). Fortunately, I suppose, I was a Special Ed teacher who primarily worked with children who have Autism, many of whom had gross and fine motor delays and sensory integration issues. So, my son’s delay in gross and fine motor skills (like not jumping off the floor with both feet, difficulty with stairs, not having chosen a dominate hand at 3 1/2, etc.) and his sensory seeking behaviors (like wanting lots of touch and deep pressure hugs and still constantly mouthing non-edibles at 3 1/2) had been nagging me in the back of my mind for a while. I’d even talked to his pediatrician at his 3 year check and my concerns were dismissed because my son was a preemie. So, the diagnosis wasn’t really that much of an “oh shit – a ha!” moment for me. Still overwhelming and emotional, but not something totally unexpected. Plus, I have sensory issues (I probably would have been diagnosed if I were a child today), so when we got the diagnoses and were told my son’s primary sensory issue was with spatial awareness and understanding his body in space, my husband was like “Well, duh! Look at YOU!” (this was in a loving way because we always joke about my “issues”). What has been a bit surprising is how SPD and sleep disorders are closely related. My son has always had sleeping issues and always seems so tired. Like your daughter, he nursed until he was 3 1/2 (we weaned in July) and he’s always co-slept with me. I’m now realizing he actually needs the close proximity to me to sleep well and he actually needs me to hold him tight to help him get to sleep… I reassuring to know that I’m not just a bad mom and I don’t just need to do some form of cry it out and make him sleep in his bed by himself. I’m sure there are ways I can address the sensory issues while he sleeps, but I’m ok with snuggling him at night right now to help him. We’ll deal with that issue later. I’m almost positive he will be sleeping the whole night in his own bed before he goes to college in 15-ish years 😉

    Anyway, we just started doing OT twice per week. I think it’s going to be great for our son. Unfortunately, I don’t think his preschool is going to work out, so I’m looking into Montessori schools. I’m wondering how your daughter is doing in her Montessori school?

    I liked your reply to one comment about if you don’t have to let your child learn their own coping mechanisms, why would you do that? Why wouldn’t you help them? I can tell you, from experience, that I have learned coping mechanisms, but I still have problems. I still don’t know my body’s position in relation to objects and others very well. I still get frustrated and avoid things like exercise classes that involve lots of choreography, I still get overwhelmed and overloaded and start crying (not like sobbing, but tears streaming) when I go to large venues like stadiums. My “coping mechanism” is that I don’t go to exercise classes that have choreography and I try to avoid stadiums and overcrowd malls and places like that. So, I really wish my issues would have been addressed when I was younger. Maybe I could have worked through some of these issues… like maybe when I think I’m having a nice walk with my husband down a sidewalk and think I’m walking in a straight line, I wouldn’t really be running him off the sidewalk into the street – that no sense of my body in relation to other people and objects really is a doozy! So, I think, as moms with kids who have SPD, we are doing the right thing by our kids by addressing their sensory issues early on and not making them fend for themselves.

    • angela
      February 25, 2014 at 10:59 PM

      Hi Jennifer,
      I realize you posted this awhile ago so you may have already started in a new school and hopefully it is a really good match! i am a pediatric OT and work in an early intervention program so i see kids in their homes or community programs and some of the time that is at a Montessori. I think it depends a lot upon the school and your child’s sensory responses. There are some places where seems like it has been a good fit for a child who is overresponsive and needs an environment that is calmer, the child knows what the expect a lot of the time there and can do things more independently at their own pace, and less stimulation overall (in a good way – meaning overstimulating not meaning not enriching:)). There are other children and locations where I feel that it was not a good match – this has been mostly true for children who are sensory seekers and have a hard time slowing their bodies down and need to touch, taste, move, lean, hang, etc! In my experience, the teachers have been very nice and skilled at what they do, but not super open to figuring out ways to incorporate sensory regulating activities into their classroom routine as they felt it did not coincide with their philosophy of learning and teaching.

      also, it is not the same as what you would do with children (ie. they wouldn’t make you get in a net swing!), but there are still things that you can do to help organize your nervous system beyond just coping or avoiding as your nervous system can still change some too. it may be hard to find an OT who would work directly with you but there are some resources that are starting to emerge for adults with sensory processing issues:)

  • karin
    November 15, 2013 at 7:37 PM

    Hi…have just stumbled across your blog whilst searching for alternative education….my daughter is 10..we recently moved countries and have had a huge bout of school refusal..after having some assessments SPD was mentioned and having googled lots this week I am having heaps of lightbulb moments…I have always had a gut feeling something wasn’t altogether right…when she was a baby autism crossed my mind yet others would say but she talks really well and true…she spoke very very early and very clearly…her energy levels were like a duracel battery..she would go on forever and like yourself I nursed and co slept but she would take forever to fall asleep…still does now….also like your daughter Stephanie she tip toed..it was like all her energy and happiness was bursting out of her…supertantrums though and even now she hates wearing anything on her arms even in winter….she was pulled up at aged 5 in an american school on south america for her anxiety in her body and a check with a physiotherapist suggestions were made that she would develop ADHD at a later age…I guess back then notuch was known abt SPD…am now so so sad that having had 2 assessments with psychiatrists in UK because of some serious behaviour issues/sleeping and waking issue which all affect the behaviour too we were told there was nothing wrong and the ownus was put on me …the whole ‘bad parent’ label…I had to take 2 parenting courses which were like teaching grandma to suck eggs…..she is a master at containment bottling all her stresses up at school and then taking them out on us at home….as soon as we arrived here and had a psychologist come by re the school refusal he instantly spotted the muscle tension…..so now we are waiting for a formal diagnosis and feel great that my gut instinct was right but soooo sad for all the years wasted in not treating it and of course a great sadness for her…will now start reading the GAP diet and your other links and for anyone out there having thoughts abt their child please please please get them checked asap…and thank you Stephanie x

    • Stephanie
      November 18, 2013 at 2:13 PM

      Hi Karin. Thanks so much for taking the time to read about my daughter and share your story. How heart and gut wrenching it all must be for you and her. You will both be in my prayers. Please keep me posted.

  • Pam
    January 14, 2014 at 3:31 PM

    Look into thyroid disease. I’ve done a lot of research on it and now when I read about SPD and similar, I see the as symptoms of thyroid disease. There are a lot of reasons a lot of kids might be having thyroid problems. Iodine deficiency and fluoridation of drinking water are just two. Failure to diagnose and/or treat is practically epidemic in adult patients – now imagine it is a child who has it and cannot even recognize it or articulate symptoms to even their parents.

    • Stephanie
      January 15, 2014 at 6:12 PM

      Interesting. I will look into that, thanks.

    • angela
      February 25, 2014 at 11:01 PM

      that is very interesting Pam…do you have any good resources you would recommend to start looking into that further? (I’m an OT who is always trying to figure out what is going on with my young friends!)
      thanks!

  • Heather
    January 30, 2014 at 3:22 AM

    Hello my son is 6 with SPD. He also has dysgraphia and dyslexia. We did Tae Kwon Do three days a week which did wonders for his strength. His teacher was Awesome and did a ton of OT work in class, opstical courses, bear crawls, crab walks etc. The class was for 3-5 year olds and the older class is much different so we stopped. We took my son to a behavioral optometrist whom informed us that my son’s tracking and peripheral vision was sufficiently compromised, but with vision light therapy he has had significant improvement! He can finally color in the lines. Our insurance covered the visits and we rented a light box for $60 dollars. We also gave him orton gillingham tutoring. The Scottish Rites have a dyslexic center that provides free tutoring to anyone in need. I believe there is a dyslexic center in Royal Palm Beach, FL. There is usually a waiting list. I know your daughter is younger, but if she has any speech/language problems be on the look out for Dyslexia. Early intervention is so important and my experience has been the public school district will not tell you until 2nd-3rd grade.

    My son is reading on grade level but we have to give him extra help.

    He hates public school now, his teacher does not have experience with SPD so he gets in trouble often. I am thinking about a montessori school with more a multisensory environment. Any advice would e great.

    • Stephanie
      January 30, 2014 at 3:42 PM

      Awesome, thanks so much for sharing. I really like the Montessori approach, and I love her teachers, but the admin have not been very welcoming and supportive. I had to fight and beg and plead to get her teachers to do brushing and joint hugs with her at school. And for some SPD kids, Montesorri can be overwhelming. It’s hard to say if she would do better in a more traditional classroom or not. But we are gonna stick with Montessori for the next two years (they keep the kids with one teacher and one class for three years-so I don’t want to even think about transfering her yet).

    • angela
      February 25, 2014 at 11:03 PM

      Hi Heather,
      I just responded to Jennifer above with my experience related to this…

  • Heather
    February 1, 2014 at 2:13 PM

    Thanks Stephanie,

    I lived in Jupiter and moved back to CT to get certain services my son needed. My son went to Palm Beach Early Intervention about 3 years ago! Complete nightmare. Then we sent him to turtle river montessori, loved that school, but he needed more help. We then moved to CT for early intervention and the school he went to was awesome! Now that he is 6 and his communication skills have gone from non existent to age appropriate I am thinking Montessori. He is in first grade and has a horrible time sitting for long periods, especially when doing something he does not like. He also is not allowed fidget toys and gets in trouble for touching friends. He is not aggressive, just a sensory seeker. Anyway if the montessori school accommodates your daughter’s needs and she likes it keep her there. My son is on an IEP and his teachers are less accommodating.

    • Stephanie
      February 1, 2014 at 7:49 PM

      Her teacher is accomadating just not the admin, she actually goes to Turtle River. I like it enough though. And the plan is to keep her there at least another two years, but we shall see.
      Thanks for sharing!

  • angela
    February 25, 2014 at 11:12 PM

    stephanie,
    thank you for your article…i will plan on sharing it with some families. i am a pediatric OT and it always makes me sad when families and children have been struggling with things that that they didn’t realize they could get help for! i am glad that you have found what sounds to be a great OT and that you have really jumped in with learning about sensory processing…you explain it well! there have been a number of books that have come out in the last 5ish years that are also good resources for families. The fact that you can now get them at the library at least the ones near me) speaks to how much more “known” sensory processing disorder has become.
    all the best,

    • Stephanie
      February 26, 2014 at 1:56 PM

      Thanks so much for reading and sharing.

  • Jen
    February 27, 2014 at 5:54 PM

    My daughter just turned 2, and this is basically our story. To a freakin’ T. We had to wait a while to get an eval. at the place we really wanted, so we are hoping to have an actual diagnosis on Tuesday. I have had a hunch for… almost her whole life. She’s already had PT for things, and we talked about her possibly seeing an OT, but I never followed through. Then I started to feel like our family was falling apart from the stress of her crying for hours every day. Our 4 1/2 year old is acting out, and I think its because he is struggling dealing with her screaming and all the extra attention she needs. I am so hopeful that therapy will help us get back to where we need to be. Thank you for this blog. I’m planning on sharing it with the grandparents once we have more solid answers, to help them understand.

    • Stephanie
      March 2, 2014 at 2:53 PM

      I feel ya. Parenting a sensory kid is really, really difficult. Y’all will be my prayers. Keep me posted how things are going.

  • momofsix
    March 1, 2014 at 12:02 AM

    My 10 yo has also SPD. He has low muscle tone and has fine and gross motor skills delays. He is also in OT. Have you hear of the “Astronaut Training” my husband did the board for him and I bought the book. He loves the CD it comes with. It helps him during bed time. I wanted to share the link. Thanks for your blog, I didn’t find out when he was very young either.
    http://www.vitalsounds.com/astroprod.aspx

    • Stephanie
      March 2, 2014 at 2:52 PM

      I will check that out thank you!!

  • Tess
    April 7, 2014 at 4:58 AM

    Thanks for sharing! I can relate to so much of this, today I feel like I’ve found a light linking so many little things together for my 37 month old, after never having any luck potty training, major differences after only one week on a candida diet! Then the sensory “quirks”, gross motor delays, putting it down to personality also. Hopefully his doctor is open minded when we see her!

    • Stephanie
      April 7, 2014 at 2:44 PM

      Thanks for reading. Good for you for going on a candida diet. Try eliminating gluten and cassein as well and monitor the sensory and gross motor stuff.

  • Dena
    April 16, 2014 at 7:03 PM

    How can you change a child’s diet if they won’t go near “yucky” foods??? I haven’t gotten an eval for my 3 year old but most of what you describe sounds so familiar! I call my daughter “the carbohydrate kid” because all she eats is cereal, breads, snack foods, breaded chicken, pancakes and French fries! Although she does like fruit, she refuses to touch veggies, pasta (what little kid doesn’t like mac and cheese?), red sauces or anything that smells different or looks yucky to her.

    I want to change her diet but how????

    • Stephanie
      April 17, 2014 at 10:49 PM

      She likes fruit for the same reason she likes carbs. It all breaks down into glucose and feeds her sugar addiction and probably the yeast overgrowth. You could do two ways. Cold turkey. Laying down the law and making no sugar (remember a bowl of cereal is the same as lollipop as far as sugar consumption and what it goes to blood sugar and digestion) a firm rule. Or go really slow, making one change at a time. Sounds like she has a little of both, sensory related food pickiness and straight up sugar addiction/digestion issues. Look into the GAPS Diet to learn more.

  • Shell
    July 22, 2014 at 4:25 PM

    My 2nd kid has SPD pretty severely. It really manifested when he was 4. He’s now 12 and can control it most of the time. Brushing really helped him. It really manifests when he doesn’t eat right.

    • Stephanie
      July 22, 2014 at 8:14 PM

      Thanks so much for sharing. Do you do the brushing off and on? I was told by a new OT recently that you are suppossed to do it for three months and then not do it to let your body integrate.
      Totally, Penelope accidently had both gluten and dairy this weekend (a freaking tiny piece of hershey’s chocolate crunch crapola) and boy did the auditory sensitivity and OCD behavior ramp up.

  • Leanne Redding
    July 28, 2014 at 2:00 PM

    Oh my gosh. I am so glad I found this post. I was googling SPD and mom blogs, because I am one myself, and this was the first result.
    We are in the very early stages of diagnosis. We have the signs, we have talked to our pediatrician, and we have initial evaluations in the works.
    Reading your post was like reading my life. It was so parallel that I am feeling so emotional about finding you! Thank you for being candid. I’m sure I’ll need a lot of these resources now.

    • Stephanie
      July 28, 2014 at 10:54 PM

      So glad you found the post helpful Leanne! And thanks for letting me know, it def keeps me motivated to keep telling our stories. Hope diagnosis and finding a good OT goes well for you!

  • Julia
    August 9, 2014 at 2:43 AM

    A beautiful read and what a gorgeous girl she is! Thank you so much for sharing your journey with us. It makes it all seem possible for those that are just starting theirs. Cheers, Julia

    • Stephanie
      August 12, 2014 at 12:11 PM

      Thanks so much for reading and commenting Julia!

  • Elder Maughan
    August 13, 2014 at 4:16 PM

    Wow, that is an incredible story Stephanie, you are so strong for being such an amazing parent. Penelope looks like a wonderful child that I see that you love and care so much about. In my life, I have seen these kids have so much joy and love in their life and they are the sweetest kids you will find. It was an experience I had with one of my best friends little brothers who is autistic and so I really wanted to learn about it so I would understand how i could connect with him. I found this article on http://www.reallifeanswers.com and it was an incredible article that really helped me understand why all people are different. I believe it can touch your heart as well Stephanie. The website is:
    http://www.reallifeanswers.org/everyday-faith/how-do-you-deal-with-autism-in-your-family/
    I hope you like it and hope to hear from you about what you thought about it. Your article truly helped give me strength to continue to love everyone and strive to become a stronger and more loving person each and everyday.

    • Stephanie
      August 14, 2014 at 7:13 PM

      Thanks so much for your sweet comment Elder. Lots of love you! I will check out that post for sure.

      • elder maughan
        August 16, 2014 at 4:55 PM

        your very welcome, were you able to look the article up?

  • Amanda
    August 25, 2014 at 3:59 PM

    Hello
    I truly love this article and would love to chat more as I have a sensory child who just turned 6 and it has been a battle. I have also started a company called sensory sensations in efforts to raise awareness for SPD and to bring tools closer to children as Canada is legging in efforts with this condition.

  • Lucas
    September 21, 2014 at 10:03 PM

    Great blog! I make Busy Boards for toddlers, preschoolers and those with sensory issues. I know it’s hard to find affordable and helpful products for SPD kids so I like to share my shop with those who have circles of influences in the community.

  • Maricela
    September 25, 2014 at 5:46 PM

    I have just found your blog and I want to thank you for sharing this. I have just found out my 2.5 year old boy has SPD, his nursery teacher thought he was autistic so we started looking for answers towards Autism. Now i am convinced he has SPD, he is hypersensitive to touch and does not like anybody else to touch him or hug him except me and his dad. It has been months looking for an answer but now that we seem to have one everything makes much more sense. My little boy is also starting OT once a week and he also should be doing twice a week but at the moment this is all we can afford. I want to ask you if you or your partner have or had any of the symptons of SPD? I was surprised when I learned more about SPD to find out that I have some of the symptons myself, they just seem to be more severe in my boy. Love your blog! Thanks for sharing

    • Stephanie
      September 29, 2014 at 11:27 AM

      Oh yes, both me and my husband have similar symptoms. We just always thought we wierd and difficult people. 🙂

  • Lisa
    November 3, 2014 at 9:49 AM

    As I am reading your blog, tears are running down my face. My son is turning 3 in a few months and he is identical to your daughter (minus the Dsypraxia). Everyone blows me off when I mention that I think that something is “off” with my son because he is VERY intelligent. He walked early, talked early, potty trained early and so on….. But all the quirks that Penelope has is IDENTICAL to to my son Noah. Thank you for writing this blog! I look forward to reading more of your posts. I will also buy the books that you recommended for my parents so they can understand that their grandson. Thank you again and bless you 😉

    • Stephanie
      November 5, 2014 at 10:06 AM

      Blessings to you and your son too. Thank you for reading and sharing. I so know the feeling of that “ah-ha” moment or what I really like to call it, my “oh-shit” moment. And just FYI, when milestones are hit early, it is a red flag. There is a range of what is normal of course, but “early” is just as big of a red flag as “delayed” is and most people don’t realize that. And also, I still get people who say to me, “are you sure?” “She seems perfect to me” I know they think I am helicopter/tiger/nut-case of a mom, but I don’t care. I just brush them off and know they are just not educated and there is nothing I can do about it other than what I am doing…trying my best to share with the world so that less kids have to struggle.

  • Michelle
    November 27, 2014 at 1:39 AM

    Oh my goodness- so much of your story mirrors our story with our oldest daughter! Except that we didn’t get her diagnosed until she was 8:(, just this past summer. Looking back, there were red flags all along the way (from birth even!), and when she was age 4/5 I was especially suspicious as the meltdowns didn’t seem to decrease as I thought they would and she developed trichotillomania for a time, but because her meltdowns are only at home and she does so well in public and is developmentally ahead of schedule in so many other ways, I completely missed this diagnosis until I realized that we were more than halfway to puberty and I’m spending more time dealing with her behavior every day (we homeschool) than all my other 4 younger! children combined, that something was clearly wrong, and then I discovered SPD. I’m so glad I did, and yes, it is a long road ahead. I found your website because we’re on the brink of making major diet changes – I’m doing research and looking into GAPS/Weston Price, which led me here. I will continue to peruse your site for advice towards that end. Thank you for all your information and courage in sharing your story!! It all resonates with me so deeply:)

    • Stephanie
      December 1, 2014 at 6:13 AM

      Oh my gosh, I can’t even imagine the struggles you both indured for 8 years! Bless you both! Lots of love to you both. Keep me posted on how diet changes go for your family and your SPD daughter.

      • Kaylee
        December 10, 2014 at 4:22 AM

        My son was diagnosed w/SPD at 12 years old (has ADHD /Speech Therapy too) – possibly dyslexia/oth. LD’s. Never heard of SPD – always knew he was difficult. He is so much like my father who had ADHD & obviously SPD -no name for either then. It never occurred to me to ask a doc about my son’s quirks. My father would not eat pizza, butter, at people’s homes, hug other people than immed. family, wear shorts/sandals, hated smell of parm. cheese, etc. A learning specialist asked us if we had to “cut tags out of my son’s clothes”…that was the first I ever heard of SPD. Even as a baby – hated bright lights. He can’t stand to be near babies- crying (loud sounds.) Hates face washing, teeth brushing, hair washing. Wouldn’t join “circle time” at “Toddler & Me” or toddler swimming lessons – always off to the side. I laughed at few comments – sound so familiar! Refuses to eat anything w/tomato sauce (IE: pizza) & would live off of cheeseburgers, french fries, mac-n-cheese & soda (hates milk!) Even real picky about brands of cheese & chicken nuggets. Doesn’t like veggies/not keen on fruit (textures in his mouth/smell.) Can smell salad in sealed bag in frig. Sound of ceiling fan downstairs keeping him from sleeping upstairs. Never napped as a baby – 20 min. max. /always difficult to get to bed. Goes on & on about a bug bite or a scrape. If he falls – screams bloody murder! Walks on toes a lot. Meltdowns w/us all the time – luckily not w/teachers or others. Always feels “hot”-wears shorts/T-shirts in winter, never zippers a coat (even as a baby would throw his hat, mittens & socks off!)
        My sister is a nurse/her husband a doc – she thinks I am imagining SPD (& two of her kids have ADHD, as does she.) My mother doesn’t believe it is real either. Now try convincing the teachers & Child Study Team that it can cause major problems in school. Very frustrating! He was in the Talented & Gifted Program in elementary school, now in middle school, he is lost! Grades declining & teachers want to blame the “parents.” One even wrote on report card “Not working up to potential. Grades would improve if he tried & concentrated harder.”…I replied, “If Mrs. W. would read about SPD, ADHD & other LD’s, she would be better informed on his concentration problems.” P.S. Even though my father had his quirks, he was the life of the party & could “lightened-up” a room because he didn’t “follow all the rules” all of the time (yet still had a very successful career.) Thanks for your blog!

        • Stephanie
          December 10, 2014 at 3:11 PM

          I feel ya. It’s all so frustrating. I am so worried about real school is going to go for Penelope. Lots of love to you and your family. Def check out the book the GAPS Diet.

        • Krystal
          December 12, 2014 at 6:05 PM

          Sounds like your child is a lot like mine! Mine quit napping at 13 months…so frustrating! He NEEDED to nap, but couldn’t get to sleep. Even now, has to have dark, quiet room, no fan on. Hates restrictive clothing. He was speech delayed due to his SPD, so I’m not sure if it’s due to being hot or the feel of the clothes, but he hates winter clothing! He’s only 4.5 now. Once he fell down a flight of stairs. It scared him, so he cried for about 3 seconds, then got up and rushed off to play before I could check him for injuries. Scared me to death! I totally understand your frustration with public school. We’ve chosen to home school for now because of just that. I used to teach high school, and both my husband and I taught junior high (before he went into law enforcement), so I knew it was a real possibility that he could end up labeled the “problem child”. Good luck in your struggles!

          • Stephanie
            December 16, 2014 at 5:59 AM

            Bless your heart! Lots of love to your whole family! Keep up the good work mama.

  • Krystal
    December 12, 2014 at 5:56 PM

    Appreciated reading your SPD blog. Our son was diagnosed a year ago, at the age of 3.5. Simply understanding his view has allowed us to help him to grow by leaps and bounds over the last year! I am glad that what you call “natural parenting” worked for you–I wish it had for me! And while I am comfortable in my belief that I did what was best for my child, others who have children who manifest their SPD like mine did, might feel helpless if they believe that is the only way to “make kids calmer, smarter and healthier in general may help to alleviate symptoms of neurological disorders”, as you mention in your article. You see, my son is on the opposite end of the crazy spectrum that is SPD from what you describe in your daughter. From only a few months old, he HATED to be held in a restrictive manner. We did try to breastfeed as long as possible, but even the six months I managed it were difficult. He would nurse, and then scream and cry until I would put him down or at the least, set him on the edge of my lap where he was barely touching me. For a mother who had no clue what was wrong, you can imagine how helpless I felt! He is hyper sensitive to touch. Co-sleeping was never a possibility. Any kind of massage sent him into hysterics. Forget a special diet, I still can’t convince him to eat fruit. He has major texture issues, and between fighting him to eat ANYTHING outside of his “approved” 5 items, (although we did limit him to healthy options, so he didn’t know what he was missing), and convincing him that rocks from my yard were NOT chew toys, I ‘ve had my work cut out for me. I have accepted that there was nothing I could do more than what I did. Especially now that he is growing so fast. According to our doctor, children really start to have independent thought sometime after their 3rd birthday. Sure enough, when he was about 3.5, we began to see marked improvement in his coping abilities. Hugs do not feel good to my son, but he now has “realized” that hugs are a sign of affection, and has begun to seek them out. I have to make them quick hugs, because he still can’t tolerate being held too long, but that first spontaneous hug brought tears to my eyes. If other parents out there have children with SPD that manifests in the same way as my son’s, I would urge them to hang in there. Some things will be learned with time. I never gave up hugging my son, even though I came to realize he did not appreciate hugs the same way I do. And now he does. We had plans to nurse until he was at least one, and I tried baby massage, and carrying him in a sling, but he had other ideas about what was okay for the way his body felt. I didn’t mean to go on for so long, but I know that I was so frustrated for so long, and felt like such a failure because I couldn’t convince my own child to cuddle. While I love all of the things you described doing with your daughter, they just weren’t plausible with my son. Sometimes SPD prevents our best intentions, and that’s okay. We did the best we could, and people tell me all the time that they can’t believe our son is the same child they saw a year ago. Thank goodness, I agree. We still have what we call “bad SPD days”, where it’s just easier not to leave the house! But they are fewer and farther apart all the time!
    Another interesting note–you mentioned in a response above that you believe you caused your daughter’s SPD, via genetics. Well, I should mention that my husband also dislikes hugs or extended close contact. And my mother in law used to tell me stories from his childhood that I had trouble believing she hadn’t exaggerated. Well, I believe her now! Some research on SPD has shown that it is more common in children with at least one parent who also has the condition. Although SPD was not a well-known diagnoses when my husband was a child, had he been born in this generation, we can safely assume he would have been diagnosed SPD with ease. For those looking for a little encouragement, he is a fully functional adult who works in law enforcement, the world’s best husband and father, and highly intelligent. And yes, he still has his quirks–which we now realize are tied to SPD, but no one but me really notices–you’d have to live with him!
    Thank you for offering the space for those of us with similar struggles to comment! Best wishes as you travel the SPD road.

    • Stephanie
      December 17, 2014 at 10:45 AM

      That’s a really great addition, thanks for sharing. Some SPD kids can’t handle being swaddled, etc. It’s crazy how differently it manifests for each child. Penelope to this day, still loves deep pressure. And still to do this day, loves swinging. I used to call her baby swing her baby crack. She could swing in that thing all day if I would let her as a baby!! But I hear ya on the hugs, Penelope will hug me but not really anyone else. Or hold their hand. She is so used to and knows what hugs from me feel like and what it feels like to hold my hand. Anyone else she is not sure and doesn’t want to risk it. She is extremly tactile defensive with anyone but me. Lots of love to you, keep up the good work mama.

  • Jenny
    March 10, 2015 at 8:01 AM

    I am looking to speak with moms or atleast one who has had their child go throuh neurotherophy, neuro feedback, i have this option now with my adhd 7 year old son but am alittle sceptical…so any advice knowledge or help would be amazing. I can also be contacted on facebook at Jenny Ellis. Thanks ♥

    • Megan Owens
      April 17, 2015 at 9:18 PM

      Hi Jenny! While we were waiting for a spot to open up with our OT I was determined to find something that we could do in the meantime. After a lot of research we ended up purchasing an iOs system, which is a listening/vibration therapy combined with exercises. I was a little skeptical (my husband was a LOT skeptical) but we found small, steady changes were happening for us and after a month of use our son slept through the night…the first time ever in 4 1/2 years! It has been a while since we have used it so I’m thinking we will start up again soon! While it isn’t quite the same therapy you were looking into, I hope this helps!

  • Lisa C
    March 30, 2015 at 3:06 AM

    Wow, reading about your lovely little Penelope was as if you wrote that about my son! It brought tears of realization to my eyes as I’ve spent most of this week researching and trying to understand my many years of gut instincts that I kind of didn’t want to believe. We had a recent ASD assessment and the paediatrician (in the UK) said, “so what if he’s different, why are you looking to have him labelled, when maybe he’s just meant to be different”. Well after asking the doctor if his car isn’t quite running right he is going to take it to a mechanic to look at. If the mechanic says he can’t see anything and you get back in your car and still feel like it’s not running quite right, you’re going to take it to another mechanic because you just know something is wrong. I left in the middle of our appointment after that feeling very disturbed that someone in the medical profession would be so willing to overlook and ignore the opportunity to help improve the quality of a child’s life. Never mind, we are moving on and realize we are going to have to pay out of pocket for a proper evaluation since the socialized care in England is not at the level of service we American’s expect! I’m heading to Amazon now to get some of those reading materials you mentioned. It’s all early stages and at the moment I’m looking back at all the signs that the preschool, kindergarten and first grade teachers all didn’t understand. The American school system is different to the UK school system in that the American schools seem more proactive. The UK school system seems to skirt around addressing anything that could compromise the school or teacher. But I never gave up on my gut feeling although we were hung up on the thought of possible Autistic Spectrum for the past two years, so researching about SPD after our horrible appointment with a paediatrician this week fuelled my fire and there is no more disbelieve or doubt. Thank you for sharing your story, I can imagine it felt very familiar to many other readers as it did for me. Best of luck for you and your family on your journey!

    • Stephanie
      April 2, 2015 at 2:04 PM

      Thanks so much for sharing your story Lisa. So much love and light to you and your son.

  • Sensory Mom
    May 26, 2015 at 9:58 AM

    Thank you so much for sharing your story! We have had a lot of success with changing our daughters diet and SPD as well. I think a lot of people think our daughter’s diet is a little crazy (gluten, dairy, nut, preservative, dye, and artificial color free). But it has been so worth it! It is hard to hear your child’s diagnosis but in a sense it is also such a relief, to finally have answers and areas to work on. I have more difficulty with the day to day living and meltdowns 🙂

    • Stephanie
      May 27, 2015 at 6:47 AM

      Thanks so much for reading and commenting! That is great you adjusted her diet. I know it’s hard for sensory kids, they can be such picky eaters and be so restricted in what they will actually anyway. But it’s so important! It really should be the very first thing parents do after diagnosis! You have a great blog by the way!

  • Kristen
    July 10, 2015 at 3:25 PM

    Wow! Ur daughter and mine are one in the same. I’m reading your post and thinking…this is my daughter! However my daughter was diagnosed with Autism just 2 weeks ago and she will be 3 in August. I’ve read alot on SPD and think that she falls more under this than Autism. But I guess the more therapies the better. Luckily for us we have received early intervention and have made tremendous strides in all areas through our local Regional Center. I wish you the best of luck on your journey with ur beautiful daughter…I’m right there with you.

    • Stephanie
      July 16, 2015 at 5:57 PM

      I agree the more help, the earlier, the better, so keep the diagnosis for sure, SPD is so hard to get funded with insurance but full ASD diagnosis is a whole other ball game. Lots of love to you both!

  • Mel
    September 30, 2015 at 9:52 PM

    Stephanie,

    I just stumbled upon your blog and am so glad I did. Great information, thank you for sharing. You mention you didn’t give your daughter vaccines. I have a 14 month old who had all of her vaccines up until one year. Mainly because I wasn’t fully aware of all the issues vaccines cause and I was a nervous first time mom who took my pediatricians advice as gold. I now do not want to continue with the recommend vaccinations as I’ve done a ton of research and now strongly oppose them. My question to you is, how did you go around getting them for you daughter, with demanding doctors, state laws, and mandatory requirements from schools. Any help would be greatly appreciated.

    Thank you!

    • Stephanie
      October 2, 2015 at 8:07 PM

      Hi Mel, it varies from state to state but in Florida, you can get a medical exemption and a religious exemption.

  • Janet
    November 1, 2015 at 12:17 PM

    Thank you so much for writing this. I have a 2 year old daughter that I think has SPD. She is speech delayed and I just had her hearing checked and it came out perfect. She has other issues like hates wearing clothes, moves and jumps constantly and only listens/hears us sometimes. I am going to contact early intervention for speech therapy as soon as we move and get settled in a couple of months.

    • Stephanie
      November 17, 2015 at 6:22 AM

      Thanks so much for sharing, good luck on your diagnosis journey.

  • becca eldredge
    December 7, 2015 at 1:15 PM

    Thank you so so much for writing this!!!!! I seriously can’t say enough how helpful it was to read.

    Our 7 (almost 8) year old has SPD and has been in OT for about 9 months and we’ve seen little to no improvement. How has your daughter improved since this was written? do you have any additional tips and tricks to share?

    • Stephanie
      December 10, 2015 at 5:56 AM

      She has improved greatly! It’s truly amazing. Are there other OT’s in your area? They are, unfortunately, not all trained the same and of the same caliber. The one we go to now, is fantastic, but I have been to 4 other OT’s in the past (partly because we moved several times and was forced to, but I also pulled her from an OT that I didn’t think was effective). Best of luck to you. Also, have you changed diet or lifestyle at all? Conscious Discipline would be a great book to read in addition to the ones I have already recommended the parent to read (to be able to do OT at home everyday).

  • Emily O'Gorman
    January 4, 2016 at 3:03 PM

    Hello,
    My name is Emily O’Gorman and i wanted to share an experience. My nephew, is 8 years old and has a sensory processing disorder. My sister in law mentioned to me a few months ago that when he sleeps or is just laying on the couch watching a movie, he likes to have weight on him. He feel relaxed as well as able to get a good nights sleep once he piles on all the extra blankets in the house! I have just recently made him his own weighted blanket. I would like to start making them for other children that the extra weight would benefit, If anyone would like more details, feel free to email me.

    Thank you,
    Emily O’Gorman
    [email protected]

  • Chantal
    January 15, 2016 at 2:16 PM

    Hello. My name is Chantal and I believe my 5 year old son has SPD. It has really been a struggle. I didn’t have my son until I was turning 40. Everything seemed normal until my son turned about 16 months. Everyone I knew was telling me I should give my son table food from four months on but the Dr told me to just continue giving him the formula. I breastfed until about 4 months but could never produce enough milk and the nurse when he was born told me he was a lazy suckered because he would not latch on. So when he got to be 9 months she told me to start giving him regular food. So I started off with stage 1 baby food, then progressed to stage 2 and then finally 3. Well when I gave him stage 3 baby food with chunks of chicken, he threw up. I also couldn’t understand what he was saying to me so I took him to inland regional center where he was given a case manager. He was diagnosed as developmentally delayed because of his fine motor skills (still a problem today but he has made improvement) . During the next three years he has had upper give series, was tested for lots of things, diagnosed with Gerd and on medication, had speech therapy, occupation all therapy and other things. I kept him on formula until he was over three years until I was forced to take him off it because I worried about his health and how he would get nutrients. So here he is, 5 years old and only eats yogurt with no fruit pieces in it, mashed potatoes, yams, applesauce, chocolate milk, some juices (you get the picture) but everything he eats haso to be pureed and approved by him. He doesn’t like to smell my food when I’m eating and if you try giving him anything else he has a meltdown.

    I have also noticed other things like that space thing. Sometimes other kids don’t like playing with hI’m because he’s in their space and can be pushy at times. Lately, he has been complaining that he doesn’t like giving hugs and kisses because it’s gross, which is really causing a problem with grandparents. He even stiffened up with me this morning when I gave him a hug (which honestly set me aback for a minute). He doesn’t like the feel of blankets on his skin and I could go on. I know you’ve talked about his diet but it’s so restrictive that it scares me as to how I can help him. I work full time and if seems like I really need to be at home with him. But it’s just not possible right now.

    But the hardest think to deal with all of this is the realization that I must be SPD. You never know, when you have a child, how much your defects will affect their world. I can’t look a a pack of black birds flying in formation, I have a problem with driving down a road with cracks on them, I can’t look at those henna patterns that are popular right now because all of them overwhelm me when I look at them. I wanted to thank you for sharing your story with me. It makes me feel a little better to know that there is something more going on here. I hope everything works out for as is sounds like Penelope is making progress. Thank you for sharing your story so that I know it’s not all in my head and I’m not crazy.

  • April
    February 8, 2016 at 8:58 AM

    I know this post is a few years old but it came up in a search about best types of schools for kids with SPD. My son is currently in a Montessori inspired preschool and is struggling. The teacher is a bit disorganized and I am having trouble figuring out how much is related to SPD, how much is his choice and how much is the way the class is structured (or not structured). Just wondering what type of school Penelope goes to and how it works for you all? Thanks.

    • Stephanie
      February 23, 2016 at 5:37 AM

      Penelope attended a Montessori PK, a more structured PK-but that was still very play based, and now goes to a very structured and strong academic private school. She is behind a bit, most of the children who came up in that same private school’s preschool were already reading, etc. But I am not concerned. I am thrilled with the PK education she got, because I am more concerned with the development of the whole child than being able to say my child was an early reader. I think what matters most is the school’s and teachers ability and willingness to understand SPD and be accommodating. Lots of people still think it’s kind of a BS diagnose and don’t “believe” it. I have had to do a ton of education and advocacy at every single school we have been at. Just remember, and now as teacher myself I can say this with authority, teachers are exhausted and extremely underpaid, do whatever you can to assume the best in them and make their lives easier and they will be more accommodating. Good luck. 🙂

  • Lauren Hall
    February 8, 2016 at 9:23 PM

    Stephanie,

    We have just come to this same conclusion about our daughter. We don’t know where to start, they diagnosed her with ADHD and mood disorder but we know its so much more than that. She is going to be 8 in April and these last few months everything has become so much worse. Its nearly impossible to get her dressed for school anymore, along with taking a bath, brushing her hair, finding meals/food she will eat. We live in West Palm Beach and I saw you mentioned referrals or evaluations in Jupiter, we really need someone to evaluate her that knows what they are doing. It has been a total nightmare trying to figure out what is going on inside her. Thanks to the internet and reading posts like yours we have come to believe this is it, either that or Aspergers. I would really appreciate any direction you can point me in. We want to get her help and OT therapy right away. Its hard to believe its gone on for this long we just thought the same as you about your daughter, this year when she started school it was really an eye opener – everything got worse and more intense within months. Thank you for writing this and taking the time to get back to all these people, you’re wonderful.
    [email protected]

    • Stephanie
      February 23, 2016 at 5:03 PM

      Go see Pilar, the founder of InterPlay Therapy, she’s in south palm beach county but she is worth the drive, trust me. You will be in my prayers, I can’t imagine how much your daughter has suffered all these and how stressful it’s been for you without help.

  • Melissa Beard
    March 20, 2016 at 11:26 PM

    where or who can help you test your child for this

    • Stephanie
      April 1, 2016 at 6:20 AM

      You can go to a pediatric occupational therapist for an eval.

  • Sune
    June 7, 2016 at 10:32 AM

    Hi Stephanie
    I really appreciate your post! This is my daughter to the T. I also just always thought she was a difficult child! I live in Johannesburg South Africa and this whole SPD thing is very new to me. My daughter (6) has been falling behind in class and the teacher brought it under my attention. Its been such a roller coaster ride for me. I feel absolutely overwhelmed with the process the last 2 months. Initially we thought it can be ADD (daydreaming) We changed her diet, cut sugar, TV in the week, put her on Omegas, Vits and minerals. doing many fine motor skill exercises as well as memory games etc. After a horrible parents meeting with teacher and Head master, it was decided to take her to OT for evaluation. I went to see the OT yesterday and she has been diagnosed with SPD especially slow auditory processing. ADD has been eliminated. She is also a Kinetics learner. We have bought her a blow up sensory pillow to sit on in class and that already has made a huge difference, but she just cant finish her work in time like the rest of the learners. She will be doing OT once a week out of our own pockets for at least 6 months and then be re evaluated, she will also teach me the brushing technique and massage to help her. My husband is also not on board at all at the moment and feels like I am labeling her and pushing her to much. She is still so small and we have such a long way to go! Wish that I can just get over my anxiety on how I am going to get this beautiful soul through school! God bless you x

    • Stephanie
      June 15, 2016 at 10:02 PM

      Oh mama, I feel ya. Sending you lots and lots of love.