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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.

Monday, March 26, 2012

A new day....a new diagnosis....

For quite sometime now, I don't even know how long, I have been worried about Jenna's emotional well being, her mental state. She will say things like "I hate my life, I hate myself, I don't know why I was even born, No one loves me, I have no friends, I'm all alone". She told me the other night that she is sad every day. Not necessarily all day, but most of the day, every day. She is just a little girl, that's too much! I finally broke down and called her pediatrician. That was a big step for Mama, it meant admitting something is broken and needs fixing. I went in to today's appointment thinking to myself, "she just has a lot to deal with, more than most kids, (2 chronic illnesses, daily meds, weekly injections, being apart from her big sister, etc) we'll just get her some counseling to work through it all and she'll be right as rain. Well.....not quite how it all went down. She asked a series of questions, such as "Is she picky about her clothes? Is she picky about food? Is she picky about her surroundings?" I'm thinking to myself, "What the heck does this have to do with anything??" I tell her how Jenna (I didn't want to say she is mean in front of her) is not exactly nice to her friends, that she is bossy with them. The doc says, "Well how do you mean? Is it maybe more that she is controlling?" Well....I suppose so. "Does she not like being touched or handled physically?" Ooooooooh no!!!! You cannot touch Jenna, ever. At this point I can't even remember all of the areas of day to day life we covered. She eventually tells me that while she thinks Jenna could for sure benefit from some counseling to help learn to identify her emotions and learn how to cope with them, what she feels will help the to help with Sensory Processing Disorder. I'm sorry, say wha?? Really?? She explained that we ALL have sensory issues to a certain extent. Such as fabrics we don't like, foods we don't like, sounds or smells that bother us, but WE can cope and adapt. I child with SPD cannot. It can send them into a fit of rage, cause a major emotional meltdown, cause them to shut down completely, etc. Ooooooh, Oh, I see..... She said most kids will innately know methods of coping. BUT, most of them are physical. Such as carrying heavy objects, moving about fast and furious, covering their bodies with lots of heavy blankets, squeezing their joints. ALL of these things are likely causing her pain (because of the JIA) which in turn will cause another meltdown, another shutdown, another outburst, not necessarily in that order. The more that we talked, the more everything became clear to me. She has likely had sensory issues since birth, most people do. But given everything else she battles, SPD has developed from it. She can't control her reactions to certain things. This pains me. PAINS ME. The turmoil within her is so much more than I ever could have imagined. My heart BREAKS for her. Her doctor said that likely, we will NEVER rid her of all of this. But, with some counseling and OT we can hope to get rid of SOME of it, and help her to cope with what's left. As I was leaving I texted a friend to tell her what happened. We are so close in our hearts, that she automatically knew how I was feeling. This is word for word her response, "One thing I thought of when ____ was given the asperger dx is that he is still the same boy he was yesterday before the 'label'" HOW TRUE?! She is still Jenna. Nothing has changed. Her heart is still hers and it is BIG. So we are off on another adventure her and I. Another war to wage, another battle to be fought, another mountain to climb. And wage, battle, fight and climb we will!!!

Ephesians 3:19-20

New International Version (NIV)
19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,


abcsofra said...

I often compare my ra to traveling through many different types of storms. One day it may be a rain storm in which I need to pull out an umbrella. Another it may be a snow storm in which I need to employ a snow blower (never a shovel with my Another it may be I have a hurricane headed my way, in which case i need to exit stage left for awhile or harbor safely inside. My point is, you are helping her to find the tools she needs to weather this storm. You are a terrific Mom! Have faith that all of this will work out for you and your family.

Danielle Tipton said...

This is exactly how I felt when Emily was diagnosed with Pervasive Development Disorder a few years back. I agree completely with what your friend said- it doesn't change who she is. I'm sad that she is so sad so much of the time. That just isn't fair :( But this time I feel more for you because I know how it feels to hear that. As a kid you hear it but it's meaningless. As a parent you hear it and it knocks the wind out of you. It made me think "all of these years I thought that I knew her so well, but now I find that I didn't see the biggest puzzle piece of all". That really disturbed me, shook me hard. BUT it's not our fault. How could we have known? We couldn't. I resolved to just go from that moment. You are amazing to me! I feel like we don't get to "chat" nearly as much as we used to (and I miss you!) but you are a phenomenal mother, and the perfect mother for Jenna. She was made just for you, and I have the utmost faith that He knew what He was doing when he gave her to you. Take care, ok? This too shall pass...

Amy Cunningham said...

Thank you so much for understanding ladies!! Danielle I did not know that about Emily. It's funny you say "all these years I thought I knew her so well" because *I* haven't felt that way. So in a way, this is a relief. Does that make sense? There has always been a wall, that even I as her Mother could not penetrate. I thought that I was failing her.Oh, I just now remembered that I was supposed to call OT today.....well...maybe I am failing! LOL!