Friday, February 09, 2007

feeling the tough stuff

I don't say very much here about Tiara's troubles but some days, like today, are just really tough. Tiara has severe sensory issues and deals with some crazy anxiety these days. Not every day is like today but I am just left feeling emotionally drained at the end of it all. We started our day when Cam moved a towel in the bathroom and she just lost it completely ( this is not out of the ordinary) she really needs to know what to expect and where things will be, needs to feel in control of her environment. We deal with at least one crazy screaming fit every day. Today was different, today was intense all day long. After the towel incident was resolved ( 15 minutes of screaming on her part followed by 10 minutes of holding and talking while she cries softly) it was the feeling of her clothes that set things off ( panties had no bow and the outfit was different than yesterday) and all kinds of fears and worries about the appointment we were going to ( which we were a half hour late for of course), then her seat belt on her stomach, followed later by her ballet suit feeling wrong and being afraid about going to dance class , and on the way there nothing was right ( she couldn't go into her class so Kaiella and I danced instead...got to try and make the best of things). I Love this little girl so incredibly much and it is so so hard seeing her struggle through life like this. This is so intense.. And if it is exhausting and emotionally draining for me, I can't imagine how it feels to live inside of her body. I have always been up for challenges in parenting, they make me a better mom and a better person. But today this is hard, today my heart is so sad. Thanks for letting me share my day honestly. To learn more about sensory integration dysfunction you can read here or Google it. There is a lot of information out there. We are only beginning the journey to find answers.

13 comments:

Anonymous said...

hmm, i am new to your blog and have never heard of this condition. thanks for providing a link for more info. i hope today goes better for the wee one. have a great weekend!

Anonymous said...

oh sweetie...my heart goes out to both of you...you are such a wonderful mommy - it was especially touching to me that what you feel worse about is how she must feel, how difficult it is to be her in her little body! please feel this big hug, ready...{{{{{HUG}}}}}}

xoxo,d

Paul-ene said...

That's tough! I know how you feel, our son is a little like that but right now....his gastral problems are taking center stage. He cries in pain just to pass the slightest gas. Aweful! Were going to a specialist soon. For now, I will read the link you gave. Thanks for sharing that and have a better day. It's aweful to watch children suffer/or struggle and be helpless most of the time to help.

Laura said...

so so sorry. i had a 2nd grade student with some of those issues. it is so hard and painful to watch - i am sure it is 100 times worse when it is your own child. big BIG hugs!!! your kids are so blessed to have you as their mama!!

Kim said...

I am so sorry you had such a hard day. Some days are hard enough as a parent without something like this thrown in. My son deals with some of the same sensory issues. His come and go...but everyday we deal with the socks and shoe thing and clothes feeling to tight. Still can't get him to wear underwear...not worth the trouble of him having a melt down. I just learn to go with the flow and make the best of it. Hang in there girl....there is always tomorrow...a fresh start

peace
Kim

Rachelle said...

hi, i'm usually a lurker to your blog, but today...this hit home :)
my son was diagnosed with sensory integration dysfunction when he was four; he is now 8. i know exactly how tough those days can be. big hugs to you. she is lucky to have a mom like you...someone who understands. it makes all the difference in the world :)
xxrachelle

Lisa Truesdell said...

sending big BIG hugs... we are going through much of the same w/ Alex (he's almost 6).. we haven't had him formally tested for SID but will be pushing for it soon.. it is SO, so hard... to watch them and help them and stay calm through it all... thinking of you, and hoping for calmer days ahead..

Time for change said...

I can only imagine what you go through each day but you seem like such a loving mommy and you help your little one through every day as best you can. My nephew has sensory integration disorder (I'm assuming it's the same thing). He's 10 1/2 yrs old. His is not too bad actually. It's almost like he's just a kid with some little quirks. This disorder has improved over time. His symptoms or "quirks" were worse when he was younger. All my best to you & your family. Just take it one day at a time...or one hour at a time.

Mary Jo said...

Thank you for reconnecting me to this website!
My son was diagnosed with SID in a milder form almost a year ago. Some days are definitely better than others but just having the knowledge and information has been a huge blessing.
And I still feel we have so much to learn almost a year later!!

Lisa said...

Did you get my superlong email about this topic right after CHA?? Just wanted to see if it was floating out in cyberspace or not. Okay, let me know. :-)

Jen_Jake'smom said...

hey there --
I came to visit your blog because I love your scrapbook pages, then I noticed this sensory stuff . . . my son has sensory issues, too. We work with an occupational therapist, and it's been quite the journey since he was diagnosed last June, but he's making SO much progress. I have an entire category on my blog for my sensory musings, including some lists of books I've found helpful. If you're interested, that category is here (current are at top, older at bottom): http://jenjen.typepad.com/searching_for_me/sidspdsensoryissues/index.html

jen

Jen_Jake'smom said...

shoot, the link didn't work. LOL. my blog is
http://jenjen.typepad.com/searching_for_me

then add this to the URL
/sidspdsensoryissues/index.html

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