Fibro and urinary problems

I never thought of these problems being related to fibro.  I also thought that it all was due to having the two kids.  However, it does make since.  At one point we were working on my core strength and they, I see many physical therapists at one place, shared that many muscle groups are used to help with these problems not just the pelvic floor muscles.  Since muscle groups are generally weakened due to the fibro and there is more than one time of muscle group involved, logic would say these problems shouldn’t come as a shock.  What is worse is when chemo can also make these problems worse.  No wonder I never knew when I had a UTI when I was going through chemo.

Anxiety and SPD

This past school year started off with Kyra having intense headaches and they determined the cause to be anxiety.  I couldn’t wrap my head around it since she was only 7.  I knew she hated school and still does but I couldn’t understand in causing headaches to the point where I had to keep her home for a few days just to break the cycle.  I really couldn’t understand anxiety in her age, not when she has so much to be carefree about and I try to lead by example not worrying, that is until I read this article.  It really made it easy for me to understand why she might be experiencing anxiety at such an age when life is suppose to be carefree and fun.

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/sensory-processing-issues/sensory-overload-anxiety

Emotions and SPD

There is no sense for emotions yet SPD and emotions do go hand in hand.  It comes down to self regulating and from what I can tell from Kyra the delay in input and output processing.  I found two really good and really short articles to help explain how the SPD can effect emotions. Well one for now.  I accidently closed out of one when I went to copy and paste the link.  Will attach when I find it again.

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/sensory-processing-issues/trouble-with-self-regulation-what-you-need-to-know

Chemo plus fibro

I started chemo knowing that it was not going to be good for my fibro but I did not know how bad. I had a PT evaluation this week and for the first time ever I have problems with range of motion in my legs. Usually I am hyper mobile and can go beyond the usual range of motion and for fibro, that’s not good either, but the muscles in the back of my legs have gotten so weak they are now very tight and limiting my range of motion. Plus, the rob flares and all the muscle strength I built up in my shoulders is now gone. I am now worse than when I first started PT over a year ago after getting diagnosed with fibro. The difference now is that I know more about fibro and I know more tools to rebuild myself. I have to find a starting point and a way to navigate through chemo though.

Finally over did it

Well I made it 11 of my 20 weeks of chemo before I had a trip to the ER. Last week, instead of chemo, I had Chris take me ER. Turns out I had a viral gi bug and bladder infection. I ended up being admitted until early the next night and go back to the primary care office in a few days. Illnesses come with the territory and I did pretty good at making it 11 weeks before getting sick. Just have to make it the rest of the time.

Expanding view of SPD

As many know the medical community says that SPD is not really a disorder.  Yes, I know, bs.  However, my question is if they say it’s not, why are more and more companies creating sensory friendly areas? Many have heard of sensory friendly days at Chuck E. Cheese’s, but now the NBA, AMC and even some airports.  This is huge. 1 This just opens up so many possibility for parents 2. These are some big names.  Hello, if the NBA can acknowledge the fact that there is a need for sensory areas in their arenas why can’t the medical community say it’s a disorder?

https://www.understood.org/en/community-events/blogs/in-the-news/2018/05/04/nba-creating-sensory-rooms-at-over-half-of-its-arenas

https://www.understood.org/en/community-events/blogs/in-the-news/2017/05/04/some-airports-now-offer-sensory-friendly-and-quiet-rooms-for-kids

https://www.understood.org/en/community-events/blogs/in-the-news/2015/11/11/amc-expands-sensory-friendly-movie-showings

SPD and the holidays

Yes it is early, but I found it now so posting now.  Plus, always better early not late.

Those who know us, know that every year between Thanksgiving and New Year’s is the worst for Kyra.  I am holiday person.  I decorate every holiday and every season.  Halloween is currently a really large tub, Easter two really large tubs and regular size one, Christmas um…let’s say it’s better not to know.  In our house, Christmas decorating starts Black Friday and everything comes down New Year’s.  So yes it is safe to say I am some of the problem.  In my defense, I don’t put everything out either, if there is no room then it doesn’t come out and that goes for on the tree as well.

Kyra loves the singing animals/characters I have.  It is the highlight of her decorating when she gets the animals out, lines them up and starts pushing the buttons to make them all go off at once.  Daddy hates it, but Phoebe and I are used to it.  She loves to decorate the tree and loves seeing the lights.  She doesn’t avoid any of it.

What does happen is her behavior gets worse during that time though.  Homework, forget it.  The whole month of December, you would have better luck seeing pigs fly than getting her to do homework.  Lots of yelling, hitting, pushing, punching, pinching, etc.  One year after the Christmas Eve service Dad was locked in the van with her while I quickly removed Phoebe because of how violent she was getting.  Dad stayed to make sure that Kyra stayed in the van instead of following us out.  All of this was over the fact that she did not want to go home and go to bed. So yes the holiday struggle is real.  Add her Christmas curse (tends to do something horrible every year) and it makes me want to remove the months from the year at times.

https://www.understood.org/en/family/events-outings/holidays-celebrations/download-6-weeks-of-tips-to-help-your-child-with-sensory-processing-issues-through-the-holidays

A day in the Life of SPD

Although some would have to be changed for Kyra, I love how this breaks the day down and also shares the sensation issue.  It may be the only way to see the day through the child’s eyes and allow a better understanding of the disorder.  As for a day in the life of Kyra, it’s summer so less structure than needed for something like this.  I know less structure is bad, but give me a break, currently having 3-4 bad days a week with my chemo treatments. We shall see how the school year lends itself to this here before too long.

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/sensory-processing-issues/a-day-in-the-life-of-a-child-with-sensory-processing-issues

Sensory Diets

I recently joined several SPD parent support groups online and have noticed the trend of sleep problems.  That’s not uncommon in the world of SPD.  What was surprising is how few have either heard about sensory diets or thought about using them for bed.  When we were introduced to sensory diets, that what we used it for.  We started with dinner and ended with bed.  We would add the things that had to be done like bath and brushing teeth, but she got to pick her calming down activities for the night.  They would often include lava lamp, reading a story, yoga, rolling pin (same way as brush therapy), therapy brush (brush therapy),  hot dog/taco (we call it taco), and weighted blanket.  It’s a long process, but she is ready for bed when bedtime comes. Now we can just do parts of it most of the time.  I would share a picture of her sensory diet but we haven’t used it since we moved to GA.  I would have to find it first.

https://www.understood.org/en/learning-attention-issues/treatments-approaches/therapies/sensory-diet-treatment-what-you-need-to-know

DIY Sensory Chairs

Was debating on how I was going to share this, simple Facebook or blog.  I decided to go with the blog so that 1.  it can be achieved and found later (even if you save on Facebook there is no search) 2. I can add to it if I find other sites.

I love some of these options.  I know that Kyra cannot sit still.  This past school year, second grade, she had an amazing teacher who either let her stand and work or she would sit and be able to play with an exercise band.

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/sensory-processing-issues/6-low-cost-ways-to-create-a-sensory-friendly-chair

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