Monday, May 26, 2014

Friends, finances and other casualties

Dr. Darla Clayton blogged about how raising a special needs child destroys one's friendships.  I have not found this to be true.  I didn't have any friends locally before I became pregnant with Aster so there were no friendships to be destroyed.
"Wait," you protest, "I'm your friend."  Of course you are. And you were either a friend from some earlier (e.g. childless) time in my life or you are a virtual friend.  Chances are I have not hung out with you recently.
I moved from a small town where I didn't know anyone to a bigger small town where I didn't know anyone when Dianthus was one.  I immediately started a demanding job and then shortly thereafter became pregnant, so tired that I watched Wheel of Fortune every night and worried that I would fall asleep before the one year old (see some of the posts labeled "Rutherford Robinia").  At 42, I'm a full half-generation older than most of the day care moms.  I'm a generation younger than the women at the Christian Women's Fellowship group at church.  My friendly colleagues go out every Friday.  It only took once of laughing about the idea of, spur the moment, getting home, getting a sitter, magically feeding and instructing the sitter, not seeing my kids for the day and spending the evening with colleagues, before they quit asking us to join them.  But losing time with one's friends is a typical symptom of parenthood (A Morning Grouch describes it well here).  I've found it far more pronounced with two than with one (and I crave, more than about anything, a friend that I genuinely want to talk to with kids the age of my kids who can totally understand the necessary constant interruptions), and I hope that I am not losing my long-distance friends long-term just because I don't have blocks of time to talk longer than fifteen minutes and I so cherish my sleep.
Anyway, I don't think Aster's hemiplegia diagnosis has done disastrous things to my friendships, but as I read the stories of other CHASA moms, I understand how it could have.  Many pediatric stroke survivors have more issues than the poor use of limbs that Aster has.  When kids have sensory or behavioral problems, may or may not be communicative and may have seizures, it is really hard to take them any place, and almost impossible to find (or pay for) good sitters.  Some mothers of hemi-kids* hate being around other kids the same age because it emphasizes just how far behind the "hemi-kids" are.  Some worry that other kids will make fun of their hemi-kids.  Some worry that their sensory-seeking hemi-kid will bite.
And then there is the time.

One CHASA mom recently added up that she spends 27 hours each week with activities just related to the hemiplegia diagnosis (appointments, special classes, at-home stretching, therapeutic activities and the like,  I don't know if she included arguing with insurance billing or advocating for special ed. or not).  While I do not spend anywhere near that, the time beyond what a "typical" child takes can be costly.  It can take a toll on friendships, time with siblings, and financially.

More on the financial costs later.

Thanks for being my friend and for still being my friend if I didn't thank you properly for your last gifts, if I haven't called you in forever, or if I cut you off last time we did talk because my sons were in a "Baby! Baby! Baby!"  "No, you're the baby!" "I'm not a baby, you're the baby!" shouting match.

*Apparently the first name of CHASA was "Hemikids" but the connotation these children are half-kids was a little off-putting,  It is the term of choice on the facebook feed, but it does give me pause.  Of course, I wonder, if Aster is half young goat, what's the other half?

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