Faces of Sensory Processing Disorder

Sensory Processing Disorder

As you know, our younger 2 children have Sensory Processing Disorder, but the picture in the middle might surprise you. Yes, that’s me. After almost 3 years of “maybe this,” “maybe that,” and a definite misdiagnosis everything has finally come together. I have Sensory Processing Disorder. Knowing what I know about it and all I’ve learned through being advocates for our kids it all makes sense – including the “maybes” and the misdiagnosis. I will elaborate.

I’ve always been “different,” and have problems with certain social situations – particularly physical interaction like hugging. I WILL hug people, but wow does it make me uncomfortable! I also feel easily overwhelmed in crowded places. Many times I refuse to go altogether if I know it will be crowded. I get upset stomachs when I’m in crowded places and often have panic attacks because I “feel like there is no air.” It’s really hard to explain! I just know it’s not “normal.” I have low self esteem, obsessive quirks, trouble focusing, a short fuse, etc. These are just a few examples to introduce you to my journey.

You know I have Fibromyalgia, which has a common bond with SPD in that the body processes signals incorrectly. So, it makes sense that my sensory integration isn’t quite normal either!

3 years ago I started seeking help for answers because I was having a hard time being the caregiver during my husband’s cancer treatment for him and all 3 kids (one of which was a newborn at the time). My obsessive behaviors got really intense, which is when possible diagnosis 1 came about: Obsessive Compulsive Disorder. I was told I “probably” have a mild case of OCD and the anti-depressants I take for my Fibro should help.

Diagnosis #2 was “possible” ADD. I am a wreck when it comes to focusing, and it started affecting our family more intensely during the rough times because I NEEDED to focus, and I couldn’t – unless I am obsessive about whatever it is. Then outside distractions make me want to scream. Seriously, I can’t describe my level of anxiety when I’m trying to focus on something, but something else is going on around me. Again, I was told I “probably” have mild ADD.

Then came Borderline Personality Disorder. You know what? I went with this. Sure, I don’t fit it to a “T,” but a lot of it described who I was in college. I was told that’s normal because you start to “fix yourself” at a certain point. After switching counselors due to a scheduling problem (a.k.a. He didn’t want to work in the mornings anymore. Maybe that should’ve been my clue he could be wrong!) my new counselor said there is no way I have Borderline Personality Disorder because you don’t just “fix yourself,” and if you’ve never gotten help you’d be in a bad spot – not in a better one.

Of course, during all of this I’ve researched the relationships between the Personality Disorders and SPD because there does seem to be one. Now I know what it is – an adult who has lived their whole life with SPD and didn’t know often exhibits symptoms similar to personality disorders, but that’s not what it is. I remember reading a child with SPD that doesn’t get help may later develop something like Borderline Personality, but that’s not it at all. It’s just that they’ve developed depression, low self esteem, etc. from being confused and misunderstood their whole life! Before I knew that, though, I remember BEGGING Joey to get Aurora help right away because “she is so much like I was as a child I don’t want her to be like me as an adult.” That was hard for me to type and makes me teary eyed, but it’s exactly what I was feeling. My feelings make sense, though, because I was right! If she didn’t get help she could develop some of the things that make things harder for me because we have the same disorder! I praise God I went with my instincts and got her help!

I’m not without hope, though, and I never have been – not for myself or our children. God is so good to us. Now that I have an answer I know how to better help myself as well! It’s a journey I can now share with my awesome sensory children, and as I learn about them I will also learn more about me.

This is an article I found interesting and helpful. It’s about holistic healing for Sensory Processing Disorder. She mentions a lot about the connections I mentioned as well. I think one of the reasons it’s so hard getting a diagnosis as an adult is many professionals actually believe you “outgrow it.” It obviously wouldn’t be a disorder if that was the case!

So, where am I on the SPD Spectrum? Well, I seem to be like Chaz in that I’m kind of everywhere! I have hypersensitivities like the background noise, wet spots on my clothes (I hate going out in the rain), disliking certain textures, hypersensitive to smells (and when I was pregnant that was SO much worse!), and I dislike touch. I have hyposensitivities in that I am always moving my feet (it drives my husband nuts), I’m always thinking a mile a minute, I often rub my face for the sensory input, I always have to have a fan on at night. There are more, but these are just a few things.

It all makes so much sense and is all coming together now. Isn’t it amazing when God teaches us something THROUGH our children? Isn’t it amazing that I am now able to spread this awareness – as are my doctors now that the clues have been put together. Not enough is known about SPD – particularly in adults, so it really is an opportunity to raise awareness.

I would like to start a campaign: the Faces of Sensory Processing Disorder where we put together an awareness by sharing our stories. If you or someone you love has SPD and you would like to participate please email me at emilee.roberts@peaofsweetness.com I’d like to include everyone – adults and children!

I’d also like to invite you to share your story in the comments below!

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  1. Great post, Em. I’m glad you are getting some answers!!! =0). Praise The Lord.

  2. Eileen MCordero says

    Wow… thank you for sharing this! I am happy that you are finally getting some answers!

  3. It is so great to hear you are able to figure out what is happening with you and your able to help your kids. I have a child that definitely has spd although she hasnt been diagnosed. Over the years we have learned to help her but I am wondering if getting her official help might make it easier for her.. me and my older daughter are diagnosed bipolar and she doesnt want to be diagnosed with anything, she has a hard time with the fact that she may have a disorder. What to do.. Thank you for sharing this with us..

  4. And now it is clear why we get along so well.

  5. Sounds like i might have SPD also!!

  6. You have told me something new.I have a lot of the same problems that you have mentioned.I use to have panic attacks when i was younger when I would get out in crowds.I have battled depression, low self esteem seems like all of my life.I also have quirks about different things,I don’t like hearing people crack their nuckles,it makes me sick to my stomach.I also have to shake my foot anytime I lay down.The list goes on and on.Thank you for sharing .

  7. Most people on the spectrum believe that those with SPD really are just very very high functioning autistics..and I tend to agree…every person with autism has SPD and I’ve seen almost all children diagnosed with SPD end up with a diagnosis of autism later on….what are your takes on that?

    • Having a child on the Autism Spectrum as well (high functioning) I experience first hand the differences between Autism Spectrum and SPD. While it’s true many on the Autism Spectrum have sensory concerns (and many even have a dual diagnosis of SPD) not all with SPD are on the Autism Spectrum. Living with the differences between the 2 I believe that statement. There are similarities since our child on the spectrum does have sensory concerns, but there are also key differences. Many also say ADD/ADHD are also on the Autism Spectrum because of similarities. Although I do believe all disregulation disorders such as Autism, SPD, ADD/ADHD, OCD, mood disorders, personality disorders, etc. stem from a similar source I personally do not believe they are “the same.”

  8. Maddie Klingaman says

    May I recommend something that works for someone else I know that has SPD. She has to always be moving too and has sensory issues, but I made her a weighted blanket. It started out of something I read. One of her boys has autism and it was recommended for him. She could not afford one so I made one for her son. The first night he had it on she said he slept through the entire night. Something he had not done in “forever.” Her constant moving would make me crazy so I grabbed some flannel and set about to making HER a weighted throw. Within a day or two her husband was calling me up telling me HOW STILL she was. He almost could not believe it. I’m not really sure why it works, but apparently it works for a lot of autistic kids so I figured if it didn’t work I was only out a few yards of flannel and some rice (that was what I used for the “weight”. Give it a try and see if it works for ya. I’m almost willing to bet that it would be good for you.

    • Thank-you. I’ve been meaning to make a weighted blanket for our toddler with SPD because he doesn’t sleep well. I bet it would help me as well! Thanks for the suggestion!

    • that is interesting, as I am constantly moving, I have to move my foot while I sleep, and with the fan on…LOL alot of this sounds so familiar… I also have Fibro…but when I put on a heavy blanket, or use my rice socks, it seems to calm me down and I dont move as much… thanks for making that connection for me

  9. Celeste Peters says

    Wow! A lot of this (and the comments) sound like my son. When he was much younger a doctor told me she didn’t diagnose at that age, but that she thought he sounded like he had some OCD tendencies. Lately background noise and smells have been driving him insane. Not being familiar with this, I was beginning to tell he was hypersensitive to it and not just the typical annoyance. Does a doctor have suggestions with how to help with that or manage it so it’s not driving getting so under his skin? For example, he can’t carry on a conversation if his brothers are making any noise in the background. At first, I thought it was just moodiness, being annoyed by his brothers. We don’t have a big house, so we’re on top of each other a lot. I told him other people live here, too, and everyone can’t be silent every time he wants to talk. I could see how it’s continuously a struggle even when he’s trying to ignore it. It’s like he can’t not focus on what they’re saying vs. what he’s saying or what I’m saying to him. Usually it’s just in the car or some enclosed space. Sometimes, though, it’s during a movie when my toddler is playing with a toy silently and the toy makes some continuous noise. Drives him insane. Sometimes I tell my toddler to go play upstairs but sometimes, if everyone’s together, I think it’s unfair to “send him away.” Also, I have a 7-yr-old that can’t NOT make noise. CONSTANTLY humming or fiddling or something. LOL I take it as we all learn and grow with our interactions. I figure God gave me these 3 who are SO different from each other just to make them each reach their max potential. I just want to help my oldest so that things like these, everyday occurrences, can be more manageable and not so distracting or irritating, since he’ll deal with roommates, a spouse, coworkers, children, etc., etc. Thanks so much for this article! Again, I learn from him (and my other sons) every day and they amaze me every day.

  10. Wow this must be extremely difficult to live with. God is awesome though and can help us through anything we are going through. The tough thing is he doesn’t always help us exactly how we want to be helped.

  11. This was SO great to read! I was diagnosed with SPD at age 27 in 2010, and just like you, I carried other diagnoses in teenage/early adulthood. They thought I had Panic Disorder, an anxiety disorder, because I was always so anxious. What they didn’t realize until 2010 was that I was anxious about light, noise, movement, and where my body was in space. Many adults with SPD share our story – “misdiagnosis” earlier on – which I believe are more like comorbid conditions (they come with SPD – go untreated for long enough, you become anxious and depressed; SPD looks similar to ADHD-Inattentive too). I’m always interested in hearing about how SPD adults parent, because I will be the reverse parent (diagnosed first, have kids second). I will be sharing this post with my SPD connections. You can find me on Twitter @coming2mysenses and online (sometimes, when I have a chance to blog) at comingtosenses.blogspot.com. Please reach out and connect! Always excited to “meet” SPD adults and share our lifelong tales of woe.

    P.S. Faces of SPD is already taken by a photographer/SPD Parent and his project of photographing faces of SPD.

    P.P.S. You might also enjoy spdlife.org – great site for SPD adults, run by a lovely SPD adult named Dan Travis. He’s an excellent resource for newly-diagnosed SPD adults.

  12. I am so glad you posted. I too have Fibromyalgia and can see some of these links in myself. I have one child I know for sure has sensory issues and another I suspect. My husband also has some of the issues on a milder scale- especially noise issues!

  13. disqus_PLaULqegEe says

    This sounds so much like my 14 yo where do I get more info to help him?

    • We’re a military family, so we have to follow a referral process, so I’ll let you know what I would suggest from what we have to do, but you may be able to skip a step.
      1) Make an appointment with his primary doctor and share your concerns
      2) Your primary doctor should then make a referral either to Occupational Therapy (if they feel that is the next best step) or Developmental Pediatrics if they feel further evaluation is needed
      3) If they go to Developmental Peds they will do a thorough evaluation and may recommend therapy from there or decide therapy may not be needed (it is dependent upon intensity, how it affects their every day life, etc.)

      Sometimes you can bypass the doctor part and go straight to a Developmental Pediatrician or even go straight to an OT evaluation, but as I said, we have to follow a referral process with the military insurance! I hope that helps!

  14. justamommy says

    I’m so glad you have a diagnosis. I have someone very special to me who has SPD and the interventions have done wonders. Good luck.

  15. Thankyou for sharing your life with us. It may be an answer to prayer. My grandson seems to follow this pattern.

  16. thanks for sharing my daughter is serverly autistic nonverbal and have alot of sensory problems i want to thank you for adding this post

  17. Is this a brain issue? Would bio feedback therapy help with this? What about external socialization? Would that also help? Good luck and God Bless.

    • I’m not sure if it is classified as a brain issue, but it definitely involves the brain in that involves the brain’s ability to organize and make sense of different kinds of sensation entering the brain at the same time. There are many different therapies available that typical insurance doesn’t cover, so I haven’t looked into all therapies available.

  18. Diana Hardy DeSmit says

    Thank you so much for this information., I have never heard of this before, but it is starting to make sense after reading your page.

  19. Cheshire Cat says

    Thank you for sharing! I didn’t know what spd was before

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