Special Needs

A little overwhelmed, I think?

edited January 2014 in Special Needs
I haven't been on much lately. I rarely have the time anymore, although I really wish that I did. I really appreciate the perspective that I find here, with you ladies. 

So my update is that DS is currently struggling with what we think might be Pica? Mostly hair and stuffing. He pulls the stuffing out of the backs of the sofa and chairs and hides with it. Stress eating.

Baby girl is staying stable with her pulmonary valve stenosis, and was dx'd with laryngomalacia by the pulmonologist today. They want to do a bronchoscopy on my itty bitty girl to make sure that there is no narrowing, or obstruction. It kind of makes me nervous since she is so young, but our regular ped backed up the pulmonologist saying he thought she probably needs it. :-(

He also seconded the cardiologist's recommendation that we seek out a geneticist for her.

So this AM we drove 30 minutes to the pulmonologist. Spent 2 hours there. Then drove 30 minutes back home to check DS out of school for therapy. Only to drive another 40 minutes to the therapy center. The kids appointments ate up our WHOLE day.

His SLP had a baby this week and he didn't have art therapy today, only OT. I was commenting to another mom in the lobby that we only had 1 therapy session today and she said "It's almost not even worth it to come all this way for just 1 therapy!" To which I totally agreed!! You know you are in deep, when being reduced to just 1 therapy a day seems like a total waste of time. LOL 

It must not be that bad if at least I can still joke about it, right?? ;-)

But doing this with two is HARD. Good thing they are cute. <3 
JJK...but they really are cute. ;-)
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Re: A little overwhelmed, I think?

  • Wow, you certainly are busy!  Hope you are able to find some time to re-energize after all that running!  

    DD has had many bronchs.  She also has had (has?) laryngomalacia.  It was one of the reasons she had a trach.  Don't worry though, many children have laryngomalacia without ever needing anything more than follow up.  The good news is that most children grow out of it.
               image      image      image
    Rachel Sonnier
  • Ugh, I feel for you.  I was blindsided by DS2's diagnosis.  DS1 was 2 and I had accepted his diagnosis.  He had severe symptoms and it was such a relief to finally have a diagnosis, a name to put to it.  But at 6w when the geneticist called to say DS2 had the same diagnosis I lost it.

    The first year of DS2's life was the hardest year of my life.  But it will be so worth it, I promise.  We're not at 1.5 yrs and while it doesn't get easier per say, it does change.  It becomes, I daresay, normal.  We're at 5 days of preschool a week for DS1, 1 day of private therapy for DS1, 1 day of private therapy for DS2 and then 4 days of EI for DS2.  And they're making so much progress and thriving.  

    Good luck, feel free to vent here.  And I always tell my boys that they're lucky they're cute.  I think that's how children are designed.  They know how to push your buttons till you're ready to explode, then they turn around give you "that look" and you're melted to a pile of mush.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
    Rachel Sonnier
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  • -auntie- said:
    Yikes. That's some schedule. It's a good thing they're cute. 

    I hope all goes well with your DD.

    On the pica, it's not all that unusual for kids on spectrum. Sometimes it's more of a sensory seeking stim than garden variety pica. Can he be redirected to a chewy tube or sugar-free gum? A lot of parents report that pica and other mouthy behaviors decrease with adding mineral supplements. It might be worth talking to his pedi about upping the iron, zinc and magnesium in his diet. I know parents who swear a nightly bath with Epsom salts added reduces this behavior.

    I wonder how much of this is pica and how much is "picking". DS was a picker as a little kid- he'd peel loose wallpaper, dry cuticles, scabs, etc. He dismantled a mosaic tile wall in the boys room at his school in 3rd grade piece by piece on winter. He'd come home daily with a couple tiles in his pocket- drove the school's maintenance man BSC until he caught DS in the act. LOL, he made DS stay after school one day to help reset the tiles. Thank God I didn't throw them out. What helped was redirecting his urge to pick into a less destructive behavior. Bubble wrap is his go to these days. We also used to let him peel glue off his hands in lieu of skin when he was little. I see this as closely linked to anxiety and it does seem to fade when he's properly medicated and life is calm. 

    Thanks Auntie! 
    I agree, and I think it is anxiety/sensory driven and we are redirecting with other things, and trying to see what works for him (the past two days I have sent him to school with a teething bracelet, but he still tried to pull some kid's hair out to eat it unfortunately). We noticed it picking up on Christmas Eve when the holiday was in full swing. He sat on the sofa, steady chewing the tassels on MIL's throw pillows instead of engaging and playing with toys. I think it was much too loud for him. It spiked the last day of the holiday and had kind of settled down after our house guests left. Until he realized that he had to go back to school monday, and then over the weekend it picked up again. I think it has a lot to do with stress, and overstimulation, so I am thinking its that type of problem. 

    I will try the epsom salt bath tonight. Easy enough, if it helps him!
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