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 firstname.lastname@example.org I’d like to include everyone – adults and children!
I’d also like to invite you to share your story in the comments below!