Tuesday, August 23, 2011

It's The Little Things

I took both boys to Whole Foods the other day at the busiest shopping time of the day.  I knew this wasn't my best idea, but sometimes you have to get groceries and can't think about all the reasons why you know it isn't going to be a pleasant experience.

Let me preface this story by saying that M and I have been enjoying quite a few one on one shopping trips lately.  He has become very good with my prompt of 'hands on the cart' as the way to keep track of him and not have him wander off when I am reading a label or otherwise preoccupied for a split second.  Keeping his hands on the cart also helps him to not be tempted to do his contorted-faced, hopping, wild hand flapping dance that brings unwanted attention to us in a split second.  I need to get through my shopping trip without feeling like I have a hundred eyes watching us from aisle to aisle.  (and, yes, I am much better about tuning said eyes out, but let's be honest here...you always know they're there!)

Having both boys with me brings on challenges that I can't always figure out.  Yes, my little B man is quite the talker and this may put a little more stress on M; but during this particular trip, B had been warned (heartily, I might add) that he best keep calm and quiet so as to not insight aforementioned wild hand flapping dance...or worse, the eight-year-old, appears-too-big-to-be-having-that-sort-of-public-tantrum tantrum.

B actually was doing a great job of staying chill while riding in the seat of the cart as M and I pushed him along, but apparently the crowds and overstimulation of the store were just too much for M that day, and so every five minutes or so, I found myself trying as calmly and discreetly as I could to redirect my eight-year-old from crying and pitching a fit.  Yes, many people will jump ship in these situations--and we've done that before too--but I live 30 minutes from Whole Foods and I sure as hell was going to finish.

You know, as much as I accept that autism is a big part of my life, I am human and it is ridiculously frustrating to have your child acting out on what should be a simple grocery shopping trip.  I had not asked much of M that day in terms of doing things that were out of his comfort zone, so I didn't think that a 30-minute grocery trip was out of the question for us that day.

As we stood in the pasta aisle trying to find gluten free lasagna noodles for the lasagna I'd promised B I would make (and the one I couldn't possibly have made with wheat noodles because I didn't want M to feel left out) the sweetest woman came toward me.  It was clear she'd come down that aisle specifically to find us.  With a gentle hand she reached out and touched my arm and said to me, 'You are doing such a good job.  You are a good Mom.'  My reaction was to say, 'Oh, you're going to make me cry!'  (as she was about to cry by just saying those simple words to me)  But then I thanked her profusely for her words and told her how much it meant to me that she took a moment to say that.

I have to say that I held my head much higher for the remainder of the shopping trip.  I felt calmer in my heart and I put the smile back on my face.

I don't know if that woman had a child with special needs of her own or loved someone who did.  But with a seemingly simple gesture, she turned around a bad moment and turned it into a positive one.  It probably wasn't easy for her to come and say that to me either.  You never know how people will react to things, even if they are meant to be kind.  But she took a chance on me, and I am grateful that she did.

So if you see a Mom struggling a bit with a child--special needs or not--remind her that she is doing a good job and she is a good Mom.  We could all use a little praise from time to time, and having it given at our lower points rewards us that much greater.

Friday, August 19, 2011

It's Hard To Blog When You Don't Have A Computer

Ye ole laptop was struck by a gnarly worm or some such malicious thingamabob that I was unable to figure out and I was android phone-only for about six weeks.  It sucked.  What the heck did we do before the interwebs?  Seriously?!
It's been a busy, busy summer 'round here, and frankly, I'm tired of leaving my house.
The creative juices are not quite flowing yet for me to jump back into full blog-irific hilarity, so I'll give you a brief M run-down:
-Confirmed diagnosis of hypoparathyroid disease (a calcium disorder)
-An ACTH stimulation test showed that he tested negative for Addison's Disease, though because he has some symptoms of the disorder (belly pain, low blood pressure, low cortisol and hypoparathyroid disease) we may test again in about a year.
-Didn't like the resident doctor we were seeing at UCSF or her inability to read a chart and see what we'd already been doing with no results, so I switched to Stanford.  Score one for Mom's good judgment.  New resident is a dream; attentive, enthusiastic, and--gasp--actually prescribing treatment that is delivering results!  Calcium number is in the 'much better' range.
-M, unfortunately, has to endure weekly blood draws in order to constantly gauge calcium, phosphorous, and various other levels that my brain can't currently recall.  Thank you, emla cream.  My boy is brave little champ.
-Genetics appointment coming up on September 6th.  We've done very basic genetic testing twice before (the last being over two  years ago), but now that we have a bit more information on the endocrine front, they are going to do some more specific testing.  Our endocrinologist has a strong hunch that he may be diagnosed with DiGeorge Syndrome, but we will see.  It would make sense in many ways.  If any of you reading this have experience with DiGeorge, I would very much like to connect with you!!  Please leave a comment for me, if you would.

Enjoy the last few days of summer to those who haven't started school yet!