When the basal ganglia dysfunctions

My oldest son has Tourette Syndrome.  He's 7 and was just diagnosed this summer.  I realized it back in May while reading some continuing education about autism.  We realized early on that our son was bright, but began noticing in 1st grade that he was having difficulty relating to his peers.  He also began having short attacks of anxiety that was bewildering to us, such as being all worked up that he'd never fall asleep if he went to bed after his bedtime.  We began noticing that he was more sensitive to loud noises than other children and that he bristled when he was touched.  He didn't seem to understand or even really have the desire to understand other people, especially other children his age.  He would get obsessive about certain topics or ideas.  For example, one day he got the idea to build a play house out of cardboard, but we didn't really have any boxes laying around.  He was restless and couldn't find anything else to do.  He kept coming back to us asking for us to find him some boxes.  Nothing that he usually enjoyed doing distracted him that day.  His dad finally found a sheet of thick poster board.  Then he settled down, cut it into pieces and used duct tape and pipe cleaners to make his house.  Then he relaxed.  I was reading the continuing education about autism, because all these symptoms seems to implicate it.  Then I read a line that said that there was a correlation between autism and Tourette syndrome and next to Tourette written in parenthesis was the explanation that Tourette Syndrome was a neuro-biological disorder that manifested itself in tics, such as throat clearing, grimacing, eye blinking, nodding, and such.  That's when it hit me.  He'd been clearing his throat obsessively for over 2 years and Tourette Syndrome had never crossed my mind.  Then I realized the neck movements he frequently made weren't from reading too many books, but were another tic.  The more I watched him in the weeks to come, the more tics I noticed.  I was still convinced that he had high functioning autism because I still thought that Tourette Syndrome was just motor and vocal tics.  He was diagnosed with Asperger's syndrome by a developmental pediatrician this summer as well.  However, it wasn't until we met with a neurologist in a Tourette clinic that I began to understand that Tourette Syndrome is so much more than tics.  It is a disorder of the basal ganglia, as is anxiety disorders, obsessive-compulsive disorder, and attention-deficit-hyperactivity disorder.  In simple terms, the basal ganglia is like the brain's brakes system.  It is the area of the brain that allows us to think thoughts and not say them, to control all our movements, to choose not to obsess over something, to focus our thoughts and sit quietly when needed, and to allow us to quite our mind when we start to feel anxious.  People with basal ganglia dysfunctions have leaky brakes.  Sometimes they can control their thoughts or movements, but sometimes they cannot.  Tourette Syndrome manifests itself in my son as periods of bewildering anxiety, obsessive tendencies, impulsivity, sensory integration issues, difficulty controlling his emotions, disinhibition, and social skill deficits.  Despite these setbacks, he reads and does math at a minimum of two grade levels above his peers (I don't actually know how advanced he is because he maxed out the assessment test).  His "giftedness", for lack of another word, compounds his difficulty in school as this is one more area where he cannot relate to his peers.  Adults that don't spend long periods of time with him or observe him around his peers with likely not notice there is anything different about my son.  So I don't think many of our friends or acquaintances understand how tiring it can be to be his parent.  Some days are more a struggle to parent him than others.  Deep inside, he's a kid that aims to please, is thoughtful, creative, funny, smart, and self-assured and I wouldn't change him for the world.  But do me a favor, please?  Don't assume my kid is misbehaving when he is having difficulty controlling his behaviors or emotions.  Imagine being in a car whose brakes only work sometimes and you are never quite sure whether or not they will stop you in time.  He's starting to realize that he doesn't always really mean to say the first thing that comes out of his mouth, but its out before he has a chance to stop it.  I'm constantly having to remind myself that I am privy to his innermost thoughts a lot of the time and I have to give him a little extra grace with what he says and does.  I hope you will too.

A game where the rules are constantly changing

That's what parenting is really like, isn't it? Parenting is like trying to learn a game where the rules are constantly changing.  My two and a half year old has finally decided to sleep again.  I write this as I am watching her playing in her crib on our monitor.  She's obviously out to prove me wrong.  When we brought her home from Haiti over a year ago at 21 months, she slept like a champ.  Plunk her down in her crib, walk out of the room, and she'd close her eyes and drift off to sleep without as little as a whimper or a wiggle.  Fast forward 9 or so months and she decided that crib time equals wiggle time and absolutely refused to nap. In addition, she rarely fell asleep before she'd been in her bed for 2-3 hours.  It's astonishing that I am not bald, because her antics had me pulling my hair out for 4 months straight!  The past week, though, all of a sudden she's back to her old sleep habits, mostly anyway.  I was doing the dishes today after I had put her down and began thinking about a friend of mine who has been really struggling with her daughter's behavior lately.  Her daughter has some special needs, so sometimes traditional advice just doesn't apply.  But it made me start thinking of parenting as seasons of change.  When you are in the midst of a season with your child and they are not eating, or not sleeping, or not using the potty, or whatever and you feel like its never going to change just remember that it probably will.  Or if it doesn't change, you'll find better ways of handling it.  And then when it changes, it'll be something new.  Each milestone reached brings on a new challenge.  I've found recently, though, after a long season of struggle as a parent, that I'd forgotten what it really is all about:  savoring the little moments.  I'd gotten so locked up inside me head with worrying over my children's behavior, that I'd forgotten to enjoy the laughter (regardless of whatever inappropriate thing my boys had done to start it), the little boy kisses, the wild imaginations, the little girl dancing to music only she can hear.  As the lady who stopped me in Chick-fil-a earlier this week reminded me, "They are only little for such a short time.  Enjoy them now."

"Super" patched jeans

So like most little boys, mine have an uncanny ability to wear holes in the jeans in nothing flat!  Its not time to buy a new size of jeans yet, so I was looking for a decent way to patch them that looked a little better than the cheapo iron on variety.  I took a pair of my husband's old jeans that were way too far gone to be repaired and cut out a patch the same size for each knee of my son's jeans.  Then, I used a Sharpie marker to draw some "super" cool images on the knees.  I used my sewing machine's satin stitch to attach the patches.  This was quite difficult because of the size of the jeans, but I made it work.  I did not use any iron on adhesive at all.  We'll see how well they wear.

My Alter Ego

My alter ego is SuperMom.  Her house is always spotless: no dirty dishes on the counter, no dust to be seen, floors clean, beds made with clean sheets.  The laundry is always done, folded, and put away.  Her spouse's work clothes perfectly ironed.  She always has dinner on the table at exactly 6pm when her spouse gets home from work.  It's always perfectly healthy and made entirely from scratch: no canned goods, all organic produce, locally-raised free-range meats.  Her children are always perfectly behaved.  No fits or screaming or crying in public.  They do not run in stores or touch the merchandise.  They are always wonderfully helpful and say "Yes, ma'am", "No, sir", "Please", and "Thank you very much".  When they do make a poor choice, SuperMom never yells, never berates, never spanks.  She calmly and lovingly explains the better choice.  She makes all her gifts from scratch and has a lucrative side business as a photographer, sells her crafts on Etsy, or is a consultant for some home-based business.  She never forgets a birthday or anniversary and always sends a card.  She takes meals to those she knows who are sick or injured or stressed.  She's active in the PTO and at church. She never eats chocolate before breakfast and works out for an hour three times per week. 

I wish my alter ego showed up more often.  The truth is... my alter ego might not actually exist.  I think she does and compare myself to her daily.. and I always come up short.  I have spent so much of my time as a stay-at-home mom feeling like a failure because my house is rarely clean, my laundry rarely completed, my husbands shirts never ironed.  Dinner is usually made and often healthy, but some days 6pm rolls around and I have nothing to feed my family.  My children know how to behave in stores, but they forget and often I yell.  I dream of selling on Etsy, but have never made it happen.  I can't tell you the last time I sent a card or the last time I worked out.  So why do I feel that being a good mom means being perfect?  I dunno.. what do you think?