Sunday, January 11, 2015
The Roller Coaster: Sensory Issues and Storms
I suspect that some of you out there reading this may have experience with sensory processing issues and a sudden uptick in meltdowns and sudden changes in sleep patterns (in this case suddenly waking up at two a.m. screaming and inconsolable) when there are pressure changes and storms... because I've heard mention of this sort of thing in some of the groups that I'm in and we while weren't spending much time outside before this cold snap hit (so I don't think it's just because we've been cooped up inside), the sudden change in behavior seemed to perfectly coincide with the arrival of the storm.
It's been hard because unlike in the past, when we could remove the cause of discomfort (like with gluten or casein), I can't change the weather (if that is in fact what it is).
The hardest part of all this is that suddenly any sort of instrumental music is (suddenly) clearly physically painful for her. After bursting into tears any time there's been any sort of music, she ran over to me a little before five tonight after her sister had asked if she could watch Cinderella, and brought me her sleeper and made it clear that she wanted me to help her get changed and then took my hand and led me to the staircase, because she wanted to go upstairs rather than hear the sound track to the movie, even though she was a room away.
Even upstairs we could just barely hear the music come on and the tears were about to flow when I started to sing a song about rainbows that we used to sing when I was in preschool and with a great effort she sniffled and started to repeat part of the song after me, finally smiling and joining in the fun.
Instruments are not okay, but voices, human voices, are the best thing ever. She's been singing Twinkle, Twinkle Little Star and brought over a little stuffed spider to show me that she wanted me to sing The Itsy Bitsy Spider for her while she danced around the living room, holding the spider and saying the word "Ba-la-rin! Ba-la-rin!" (ballerina, ballerina) over and over again, quietly to herself. And the rainbow song that I sang to help calm her down is a new favorite as well.
It's been a roller coaster of a week. Thankfully, alongside the low points, those moments filled with tears because she heard overheard a song, there are high points as well.
This morning I held her on my lap and she pointed out the different colors on the stripes on her sister's sheets. Earlier in the week I gave her a paint brush and a cup of water and she painted "grapes" on the window and asked me to write the letter M by taking my finger, dipping it in water and holding it up to the glass and saying "M for Mermaid! M for Mermaid!"
Tonight, we walked upstairs after changing into her sleeper, and she tucked herself into a little cubby behind her sister's bed, wrapped in her sister's favorite blanket. She took my hand in her little hand and intently studied it, wiggling her fingers back and forth while pressing on my joints and saying "Bones. Bones."
A few minutes later I went downstairs to get her a snack, and by the time I walked back upstairs she was sound asleep in her little safe spot, finally exhausted and asleep after a long day.
I think noise canceling headphones may be in order (if we can get her to wear them). And I hope whatever it is that's making her so uncomfortable passes quickly... I hate this helpless feeling when it comes to making her feel better.
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Depending on the exact feel of them, she might even like the headphones because the pressure might be reassuring! An SPD kid I worked with for a while loved having firm pressure near his face, which is what made me think of that. Is there any way you could have her try several different pairs to perhaps find one she likes?ReplyDelete
I think if we could just get her to wear them for a few minutes she would love them. She's pretty good at knowing what she needs (like getting her sleeper when she's starting to feel overwhelmed so that nothing touches her skin) but getting her to just give them a try would be the challenge. I'm hoping her OT has ideas!Delete
Have you tried ear plugs? Someone in my playgroup watches a little girl who would cry constantly. They discovered that she's very sensitive to sound so she wears ear plugs all day. They are a little uncomfortable looking, but they are squishy. She's much much happier with them in than with them out. Ear plugs are a lot cheaper than head phones and they come in children's sizes. I'm not sure how sensitive Mae is to textures, but I'd try those before resorting to something more expensive that she may or may not like (not to mention break.)ReplyDelete
The biggest problem with ear plugs is they'd go straight into her mouth. She puts everything little in her mouth and I'm 99% sure she would eat ear plugs since they're little and chewy. I eagerly await the day that she's past the chewing stage.Delete
I am going to bring it up with her therapist on Wednesday though and see if it's something we might be able to get a prescription for because she was an OT budget each year and since I make everything (like weighted blankets and vests) it's never been used.... hopefully maybe they could use it for headphones.
Hey Cam, do you know anyone who can draw? Perhaps a mermaid in need of noise-cancelling headphones might appeal to her, that or let Patch have them. I believe Bob the builder wears them to protect from saw noise so that might be a way inReplyDelete
That is a really great idea Emma! Thank you! She has a story about coughing and sneezing (because she bursts into tears if her sister does either) that includes mermaids... I bet we could come up with something involving mermaids for headphones too! Which would at least get her interested in them!Delete
This comment isn't particularly related to this post, Cammie, but is something that I've been meaning to share with you for many months. I downloaded a sample chapter of a book that was recommended on some blog, and as soon as I read the opening pages, I thought of you. It's called "The Book of Jotham" (by Arthur Powers) and the story is dedicated to "all those who face extraordinary mental or physical challenges, and for their families and caregivers, that in community we can see one another in God's light."ReplyDelete
All I read was the beginning, and the story is told ALL through sensory images, and how one might grasp the world without an intellectual foundation. One line on the first page is: "Mother. Lightest light. Warmest warmth. When you are near her, you feel inside like the shade of grape leaves on a spring day. Cool water in the well. Small sparrows in the air..."
The child, Jotham, processes light and dark, hot and cold, and thereby his emotions through the senses. Makes you ache inside, it's so poignant. Won the 2012 Tuscany Prize in novellas, so it must be good -- as I say, the sample is free on Kindle, and you could decide from there if might be helpful. I've never thought about another way to process the world until I read this snippet -- amazing.
Thank you so much for sharing Genevieve! That sounds amazing! I just opened the window for it on Amazon and added it to my Wish List so that I don't forget about it! Just reading your description makes me want to read it (and the other books that come up as recommended when I brought it up also make me think it would be a good fit!).Delete
I just listened to an interview of Dr. Stephanie Seneff, Senior Research Scientist at MIT Computer Science and Artificial Intelligence Laboratory. She referenced a web site called "Moms Across America" which was established to try to raise awareness as to how GMO foods are affecting especially children.ReplyDelete
Here's a quote from an article she wrote there:
"In my view, the core pathology in autism is insufficient sulfate in the cerebrospinal fluid in the brain. This causes a severe impairment in neurogenesis and an inability to "clear the trash." It's indirectly caused by sulfur deficiency, melatonin deficiency, impaired sulfate synthesis, impaired sulfate transport, and excess flushing of sulfate through the kidneys - all induced by glyphosate. [Glyphosate is a chemical produced by GMO foods, I think.] There's also neuroexcitotoxicity from glutamate and glyphosate and aluminum working synergistically."
She said in the interview I listened to that she recommends to parents of children with autism to add Epsom salts to bath water (magnisium sulfate) to increase sulfate which can be absorbed through the skin.
You may want to take a look at this website. I thought it was pretty good.
God bless. ~ Bonnie
Thank you for the link. I've run across Dr. Seneff's writings a few times. She definitely convinced me that round up could be linked to gluten intolerance, but I'm less convinced about her autism claims (we have tried epsom salt baths in the past and melatonin supplements too). She's definitely really smart, but I know I've also seen responses to her claims that dispute it and point out that it isn't really her area of expertise.
I definitely agree heartily with her that I wish GMO foods were at the very least labeled so they could be avoided or at least we could attempt to avoid them.
My son had severe spd and adhd - have hope at 10 the spd is just about not there. The thing that helped the most for us with reactions to volume was actually brushing therapy (Wilbarger? sp). I also believe diet changes helped we did gf/cf and then did an elimination diet -failsafe. Found corn is horrid for him - it makes him more sensory. Crazy - and painful to avoid but to this day - he is a mess when he has corn. Also - this is a crazy idea - but get her ears checked! My son ended up having fluid in one ear - and oddly enough became more sound sensitive! (I have never understood it but other sensory parents told me the same happened to theirs!)ReplyDelete
Thank you so much for your comment. We're actually waiting to get in to see a hearing specialist right now. The referral just came through this week. I've been wondering if there's maybe something physical going on, since both of our girls were prone to ear infections when they were smaller.
We're gluten free casein free too, and I've been so amazed by how the brushing therapy has worked for my oldest. Mae freaks out when we do it (she actually comes over, asks to be brushed and then panics...) so we haven't done it regularly with her, but I'm amazed at the difference it makes for her older sister. I never would have believed just how dramatic it is if I hadn't seen it with my own eyes!