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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Thursday, May 24, 2012

The Beast Within

This post isn't about Juvenile Arthritis or Uveitis. It's about SPD (Sensory Processing Disorder). I can't remember if I have mentioned it before now and honestly I am too tired to check. It seems I should know when she received this latest diagnosis, but I can't. If I have mentioned any of this before, just bear with me and or skip ahead.
A month, maybe two months ago I took Jenna to our regular pediatrician to talk to her about Jenna's emotional, irrational, really quite frightening outbursts. She has had them for as long as I can recall, but they were getting worse and more frequent. She was also leaving notes all over the house that said things like "I hate myself", "I hate my life", "I don't even know why I was born", "my life is an epic failure", just to name a few. She is way too young to be feeling this. So, I went into the appointment thinking Jenna is just under a lot of emotional stress on account of the JIA, Uveitis, meds, etc. Her ped started asking me a series of questions that made zero sense to me. Wait, I did blog about this. Now I remember. At any rate, apparently Jenna isn't depressed or stressed out. She has Sensory Processing Disorder. We were referred to a counselor to help Jenna identify and work through her emotions. Talk about epic failure. After two 1 hour sessions in which Jenna barely spoke, the counselor decided that Jenna is overindulged. Okay, BUH-BYE! We were also referred to an occupational therapist to get a full, official evaluation. I had done quite a bit of research before going into the eval. Some things made sense, others not so much. So I really thought the OT would tell us, "Nah, she's fine.". As usual, I could not have been more wrong if I had tried. Jenna exhibited deficits in areas that I never would have guessed. So, right now Jenna sees Miss Karen at OT every Thursday morning before school. Once school is out she will go every Tuesday and Thursday mornings.
This is all turning out to be such an incredibly painful learning process for all of us! As soon as I got her eval report, I told my husband that we needed to make some changes in how we deal with Jenna. NONE of this is her fault! All these things that we used to get so frustrated with her about, we used to punish her for. They aren't her fault. Now don't think I am going to start excusing bad behavior. No sir! But we will deal with and manage it differently. Things like brushing her hair and her teeth. Most kids don't necessarily LIKE doing it, but they do it. For us this is a tearful meltdown 2x daily, and it's still only done half way. Turns out this is actually PAINFUL for her. Any touching to her is painful. She told me today that she felt like she was being burned when Miss Karen touched her with a soft brush. I wanted to scream, "WHAT?!?!?!". But I held my tongue. Miss Karen explained that her brain is hardwired to send a signal that any touch is painful. To her any kind of touch is painful. Can you even imagine?? Too many sounds to her that are all at once and jumbled up make her feel "weird" and get her "engine running". She gets very keyed up and then her brain starts sending out mixed signals. She becomes overwhelmed from all of the sensory input. Jenna is very much a sensory avoider. This morning she had meltdown after meltdown with maniacal laughter in-between. It hit me once we were in the waiting room, when her eyes lit up at the sight of Miss Karen, was her behavior all morning a result of her excitement over going to OT?? Miss Karen said without a doubt. She was in a heightened state of arousal, her engine was all revved up and she simply cannot regulate that engine. I still don't fully understand that, yet it makes sense. And, it simply feels good knowing there WAS a reason behind this mornings behavior. She was also able to explain to me 1) Why Jenna has a meltdown about taking a shower and 2) Why Jenna wasn't able to explain to me herself why she hates taking showers. Miss Karen says that Jenna hates showers because of the water hitting her head and face as well as the sensation of the water running down her body. It is all TOO MUCH sensory input! IN the bath she is surrounded equally by water. Aaaaah, okay, gotcha. So why couldn't she just say so?? There is a term for it, but I can't remember it. Basically, Jenna knew why, but her brain can't send the words in sentence form to her mouth to tell me. As soon as Miss Karen said it, Jenna's eyes lit up like Christmas and she vigorously nodded "YES". After her session, Miss Karen explained a little more to me about what is going on with Jenna. I knew about the tactile stuff, but there is so much more. Even things as simple as, when you start falling to your left, your brain sends a signal "PULL RIGHT" so that you won't fall and get hurt. Jenna's body doesn't. When she falls left, her body says "PULL LEFT" and down she goes. When you go down a slide, your natural instinct is to put your hands down and push yourself up to stand, protecting your face and head. Jenna can't. Her body doesn't get that message from her brain. She will just continue forward and face plant. I get the feeling that we have only BEGUN to scratch the surface. I don't even think I am even coming close to expressing to you just how painful this is to see Jenna going through this. How much it is BREAKING MY HEART. I am MOMMY. It is MY job to fix her!!! I feel so angry and so sad all at once! When your child hurts, you want to make it better. I CAN'T FIX THIS. I can help her, but I can't fix her. Tears ARE streaming down her face, just as the song says.All I can do is TRY to fix her. I would like to ask God, "WHY HER?? Why?? Why is she being given SO much?!". But ultimately, it doesn't matter. She HAS been given this and we will deal with it.

"I Can Do All Things Through Christ Who Strengthens Me"
Philippians 4:13


Megan said...

I am so sorry Jenna is dealing with so much. As far as sensory goes there is hope but it's a long road. my 10 year old neice has severe sensory issues. She can't wear jeans because they "itch", socks have to be inside out because the seams in the toes bother her, strong smelling foods would send her through the roof. It's a horrible way to live but with proper OT she can be desensitized (to a certain extent). Learning to deal with her episodes is probably the hardest thing, you have to keep telling yourself that it's not her fault. My niece still has issues with her clothes and over stimulation when there are a lot of people and noise around but it's 100 times better than it was when she was younger.

I've been following your blog since my 14 month old was diagnosed with systemic JIA at 9 months old. You are a wonderful mother and you and Jenna are in my prayers.

Danielle said...

I know that you don't know but I myself have been suffering from JRA since I was 9. It took 2 years for me to get diagnosed now I am 16 years old. I just made this video that has a little insite on what I have been through. I am trying to get it so more people can see because I want more people to know about JRA. I was wondering if you wouldn't mind posting this on your website so that others can see it?


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