Pandasmom's Blog

living with PANDAS, not the furry ones…

Update September 28, 2009

Filed under: Uncategorized — pandasmom @ 8:53 pm

Saturday’s behaviors and setback really shook John and I to the core.   Poor John doesn’t want to admit that he has a child with special needs.  But, the term special needs is so broad.  I think that John is coming to grips with that.  It is very hard to realize that the simple, boring, plain life you wanted to have just isn’t going to happen.  John and I are both feeling this at the same time and we show it a bit differently.  But, by Sunday morning, we did realize that we are still on the same page and we need to figure out how to live this life as happily as possible.

A’s behaviors did indeed all return on Saturday.  However, she was able to go to sleep Saturday night relatively easily and she remained asleep that night.  On Sunday, she was mostly back to herself.  We saw some OCD things and a few temperamental issues on Sunday, but nothing like we saw on Saturday.  As long as there is any improvement, my own mental state is fine.  It is when there is a decline that I get completely overwhelmed. 

Surrounding ourselves with only typical families/friends and typical situations when John and I are feeling beaten down is proving to be too much.  The contrast between our family and everyone else’s is too vast.  This is not a cry for sympathy it is just a simple fact.  For quite a while now, I have been working on building a support system of special needs moms – both online and in person.  I mentioned to John that it might benefit our family if we recruited some family friends with extra needs as well.  We don’t need to wallow in self pity, but being around families who have situations like ours might really be a welcome break.  Luckily, my friend and I have been discussing this for a while and have been just waiting for the dads to think it was a good idea too.  I think the time is now. 

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