And She Lived…

{October 22, 2008}   SPD Awareness

October is Sensory Processing Disorder awareness month. It is also breast cancer awareness month,  National Down Syndrome Awareness Month, National Brain Injury Awareness Month, energy awareness month, Sudden Cardiac Awareness Month, domestic violence awareness month, National disability employment awareness month, national home indoor air quality Action & awareness month and I am sure a few more that I am not aware of. With all these “awareness month” things out there it is hard to believe that any of them actually get much focus and gain much awareness by the general population. Okay, breast cancer awareness is huge on a national level this month and that is a really good thing. But what about the lesser known issues that share October as their “awareness month”?

This is why I want to bring a little attention to Sensory Processing Disorder. If you were a reader of The Bitter Ball then you might remember me mentioning that we believed Meechi had SPD. He received the official diagnosis a couple of months ago.

I had never even heard of SPD until I came across a post on one of the adoption groups I am a member of. A woman was talking about certain behaviors her daughter had and that they were because of her SPD. Well, the behaviors were the exact things I had been seeing with Meechi and suddenly there was an explanation for things that had been a mystery to me up until that point.

I am not going to try to explain the technical details of SPD. I wouldn’t do it justice I am sure. Please check out the SPD Foundation for that. What I am going to do instead is describe some of the sensory issues that Meechi has and how they affect his day to day living.

  • When he is off the ground he feels complete terror. This is an irrational fear of falling. Even if he is safely in our arms he is afraid he will fall unless he is held very close. We can not lift him up above our heads like many people do when playing with their toddler. It terrifies him. He can not sit in a swing at the park because it terrifies him. (this is not from the motion of the swing but the simple fact of being a few feet off the ground)
  • Certain clothing bothers him to wear. If his pants legs ride up on him it bothers him and he will completely obsess on it until the problem is fixed. He actually will scream and cry while pulling at his pants leg trying to fix it. Nothing will distract him from the fact that the pants leg is up and as soon as it is fixed he goes about whatever he was doing as though nothing happened. The same thing will happen if long sleeves ride up his arm. It is almost impossible for him to wear a mid length sleeve shirt without him obsessing over the sleeves.
  • He seeks or avoids oral sensation. I know it sounds crazy but he both seeks and avoids oral sensory input. He will lick his hand to get the sensation on his tongue. He avoids things like tooth-brushing. I have mentioned the hand licking before, it caused him to get impetigo. The tooth-brushing thing is hard on both of us. I literally have to hold him down to brush his teeth while he cries and fights the whole time. I hate doing it but I don’t want his teeth to rot, so I have to.
  • Over sensative to auditory input. This simply means that he hates loud noises or excess background noise. Remember that photo of me and the kids at dinner on the cruise? The one where Meechi had a dvd player in front of him. That is a necessity in almost any crowded place. It helps him to block out the background noise. Otherwise he would be holding his ears and growling. Places with too much background noise are overstimulating for him and he doesn’t know how to handle it.
  • Certain touches bother him. A light touch or tickle might feel kind of funny for most of us, but for Meechi they are beyond annoying. This kind of touch really bothers him. There are many ways we play with our toddlers that involve light touch or tickling and this is one way I simply can not play with my son. This little piggy? Nope, can’t do it. He hates for his toes to be touched. He does respond well to deep pressure touches. This means I get to have really great big bear hugs, so that’s a plus. One example of light vs deep touch comes when washing his hair. If I use a small cup to pour water on his head to rinse he screams and fights me. However if I use a small bucket and dump it on his head all at once his response is much less severe. He still does not really like it, but the deeper pressure of more water being poured on his head at once is less bothersome.
  • He can not stand to be leaned backwards. This leads me to more on hair washing. I can NOT tip him back to rinse his hair. Tipping back will send him in to a total freakout. Not a good thing to have in a bathtub. I learned this lesson quickly when we went from rinsing, to him nearly drowning himself in a twisting motion that flipped him face first in the water in an attempt to get out of the leaned back position. I also learned that if I am holding him I need to squat down to pick something up because if I lean down it tips him back and again we have freak out.

There are a few other sensory issues that he has that affect his day to day life, but I think the list above gives you a good picture. There are times that we will be in public and he will have what looks to everyone around us like a temper tantrum. It isn’t. It is my son reacting to some sensory input that his brain just can not process in the correct way. We get stares and looks and whispers. I know strangers often think my son is a spoiled brat. They are so very wrong. My son is a good, sweet boy with a disorder that is beyond his control. Something to think of the next time you see a child having a “temper tantrum” in public.

For Meechi SPD was caused by a lack of sensory stimulation in his first year of life. He spent those first 15 months in an orphanage where sensory input was almost non existent. The children there simply do not get the touch, motion, sights, sounds and smells that a child would normally receive. This is why SPD is common in adopted children. Especially those coming from an institutionalized environment like an orphanage.


Mama Zen says:

The idea of a child receiving such minimal sensory input for 15 months just kills me . . .

This is a great post, and it’s wonderful that you are raising awareness of SPD.

My daughter is a sensory-seeker, most probably due to the limited sensory input she received during her first year of life and also possibly because of a premature birth and/or poor neonatal nutrition. I, on the other hand, am much more like your son. I inherited my over-sensitive SPD, most probably from my maternal grandmother. My aunt is an over-senstive like me and my nephew also has it, but he is a sensory-seeker like my daughter.
What I find interesting about your son’s list is that I also have a tremendous fear of being off the ground. I don’t fear hitting the ground though… for me it’s this irrational fear that I will somehow go floating off into space. Weird, huh?

Again, for all my waiting adoptive parents I try and remind them that there are NO “healthy” children in institutions. Thanks for your candid post and information! You are a fabulous mom!

Sweet child. I will pray for him. Thanks so much for posting this. I’ll add you to the SPD blogger list right now. Thank you again!

goodmum says:

Hey there,

From another mom to an SPD kid, thanks for writing this. I love that so many of us are working to get the word out. Hopefully, this disorder will be widely recognized soon and our kids can all get a little more understanding from this rough world.

Again, thanks for writing this. 🙂

Kia (Good Enough Mama)

Chel says:

Clearly, he’s blessed to have you!

goodmum says:

Hey there! I’m giving away FIVE copies of “Meghan’s World,” a book for kids about SPD, written by a mom and her SPD daughter, and autographed by both of them! Come on over and see what it’s all about. 🙂

Kia (Good Enough Mama)

[…] and insurance DENIES him help. How the hell do they justify this??? He has been diagnosed with SPD. He needs an occupational therapist to assist in giving him the therapy he needs to overcome this. […]

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