Why add a Sensory group for parents?

I had no idea what Sensory Processing was until my daughter had eye surgery in 3rd grade.  I had heard it once or twice in graduate school, but I never realized it was exactly what we were going through.  The eye surgery was horrific, mainly because of SPD, but it was also the catalyst for us discovering why our daughter was struggling.

I had been the mom who decided that the fact my child couldn’t sleep more than 1.5 hours in her first 9 months of life was due to my horrible parenting skills.  I decided that her inability to be dropped off at preschool or to get through transitions during the preschool day was somehow my fault; I must not have been detaching myself the “right” way.  I decided that even when 3rd grade rolled around and my daughter was the only kid in line before school who was still having a horrible time leaving my side, that somehow I must be an unfit parent!  I took a lot of blame.  I also had a massive number of “shoulds” in my head.  I couldn’t get babysitters because my daughter would have such a hard time with us leaving, and couldn’t fall asleep with them.  Eventually, she couldn’t ever fall asleep without me laying in bed by her side.

My daughter went under anesthesia for eye surgery in a state of sheer panic, and came out of it in exactly the same state.  She stayed in that state for twelve hours straight.  I was so confused and my heart was torn open as I heard her scream over and over, wondering if she was awake or asleep, and refusing to open her eyes.  We sought out the help of Ana do Valle, a local Occupational Therapist with years of experience with hospital and surgical trauma.  Again, I thought it was my fault, even though I had warned the anesthesiologist and the surgeon that she was a highly anxious child.  I asked them if they had any baby xanax or anything they could give her!  Apparently, they didn’t take me seriously because none of that happened.   Ana was a godsend in our lives because she immediately realized the root of the problem was not her surgery, but the way her nervous system was wired long before the operation on her eyes.

Ana did an informal evaluation and gently introduced us to the world of Sensory Processing Disorder.  I began studying it from Ana, as she taught numerous trainings at the Play Therapy Institute, where I was doing my internship.  Things were making a lot of sense, and while it felt kind of good to know “it wasn’t my fault” it was still a bit overwhelming.  I think the best that came from our knowledge of SPD was to let go of expectations.  I imagine that would serve anyone well, really, because we face a lot of disappointment with expectations.  Of course, we need hope and we need challenges.  So, we began hopefully letting go of expectations while challenging our sensory kid when the opportunities arose.

As a parent I started to feel rather alone in all of this.  My daughter didn’t have a huge social group of friends, but she had a few close ones.  I watched my social group of mom friends dwindle down to just two or three.  That was hard for me, because I am a social person.  I love parties, I love game nights, I love hanging out! The parties weren’t the same because I had to stay with my daughter the whole time.  Not that that was bad, because I totally dig her presence, but I started to feel like an odd ball in the kid room, while the grown ups socialized elsewhere.  We stopped going to group events, because the noise was too much for our daughter, or the smells, or the food, or she just didn’t feel right that day.  Here I was, an adult who had learned (not so healthfully) to stuff down all my “feelings” and “nerves” and be around people, because it was important to have friends.  What she taught me was that the most important people were under my roof.  The best friends were the ones who didn’t judge our atypical parenting style (like not forcing our child to sit at the dinner table or to wear certain fabrics, or to just give up on socks entirely!), the ones who didn’t tell me to just go ahead “and cut those apron strings”.  They were the friends who knew that she wasn’t like their kid, and there was nothing wrong with that.  They let me be who I was, and her be exactly who she was.

After I graduated from Naropa, I became more immersed in the world of sensory challenges.  I realized that while we all have certain sensitivities, some of us are much more affected by this nervous system anomaly.  While I might not like wool sweaters because they are itchy, my daughter can’t wait certain fabric because it registers in her brain as pain.  Not discomfort, PAIN.  Imagine if someone made you wear fiber glass t-shirts to school?  Or shoes with thorns inside of them?  It would hurt us.  If we try, we can all somewhat relate to sensory processing issues, but unless we have the true disorder (a word I don’t love), we can’t really understand the level of pain that can go along with being a sensory kid (or teen, or adult).

Parenting those with sensory disorders is not easy.  It is not the way we were parented, or the way the pediatrician has told us to parent, or even the way we read in all the parenting books that claim to know how.  Parenting a sensory kid is unique to each family.  Choosing battles is incredibly important, because any battle is going to quickly become a nuclear war.  I try desperately to avoid the battle, but it’s a tricky dance; one day I rock it, and notice the explosion is coming and I head it off at the pass like a pro.  The next day, I am distracted and annoyed and realize that I forgot to watch for the explosion and it’s too late!  I forgot to feed my kid (hungry) before we got in the car (sensory challenge) to go to a noisy place (sensory) and now we’re late (anxiety-leading to more sensory sensitivity).  This group is being organized to give support to those of us who do feel a bit isolated from adult friend groups, who feel challenged in how to connect with our kids because it always seems to go wrong, and who need resources and would prefer word-of-mouth referrals for OT, therapists, schools, etc.  Some of us even need to learn how to play with our kids.  Come and meet with a  small group of other parents for five weeks, who are figuring out how to do this, too.  Let’s support one another, while learning techniques for self-care, getting ideas for resources, and sharing our stories.

UPCOMING GROUP!  May 4, 11, 18, 25.  6-7:30 p.m.  $40 per group per person.

email bigdoglittledoghealingarts@gmail.com for more information or to sign up!

SPD group

 

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