April 1, 2013

Special Lies.

Posted in Uncategorized tagged , , , , , , at 1:23 pm by openendedcomment

You ask how old they are, because that is what people do.  I say 16, 13, 12 and 10.

“Oh cool!  You have a driver!”

And now I say that no, I don’t.  He has special needs and he doesn’t drive.  You are silent, or quickly tell me about someone else’s child who is now “fine.”  Which isn’t the same thing.  At all.

Or I lie and avoid it.

I have learned to lie.

You ask what’s “Wrong” with him

And I tell you he has Aspergers Syndrome (because it’s the one people have heard of) and you say “Oh! I know about that! So he has social issues but he’s really smart.”

I lie.

It’s not that simple.

He also has severe learning disabilities, ADHD, anxiety disorders, developmental delays and sometimes, he hears voices. But that’s too much and too personal for casual conversation so I say “sort of”

I lie.

When you meet my family and say “So, a big sister and three little brothers”  I quietly correct you that he is the eldest.  And you say “Oh, I just assumed…”

I say “it’s OK.  Honest mistake.”

I lie.

It isn’t OK, he’s going to cry himself asleep tonight or destroy something of hers.  Maybe both.  Because he doesn’t know how to take it and even though it isn’t her fault, he’s going to blame her for being “normal”

Or take it out on his brother, who has lost trophies and awards and friends.  Because he is afflicted by normalcy, too.

You try to do the “right” thing and tell me how lucky we are to have such a special and great kid and how our other children are being taught so much by him being a part of our family.

I lie.

When most of it is right and mostly I agree, that we are lucky, his parents,  I lie that they are lucky.  They aren’t.  They’re lucky to have him and they love him and wouldn’t ever want to be without him, but they aren’t lucky that we are always fighting the next battle which means spending more money and losing more time.  This means they aren’t getting to go skiing or be in hockey over the summer, or have friends over when he’s having a hard time, or go on the vacation we wish we could take or attend a camp, the money and the time goes to get and give him the help he needs.  Something that sounds and when written seems trivial but to kids this is a big deal. It isn’t even kind of fair to them.  It isn’t lucky for them when we’re so stressed we barely speak for days on end because we don’t know how to get to a place where there can be calm and peace in our home when chaos lives here each day with no warning as to when it will come roaring back…in some new awful way.  Lucky would be to have him and also have a break.  Or at least a warning when the “other guy” is on his way.  No such luck.

When you say that you don’t know how I “do it all”

And I tell you “It’s nothing”

I lie.

I don’t “do it all” I do what I can and what I can control, mainly because there is so damn much I have no control over.

When you say “Well, maybe you just need to….”

And I smile and agree or act like I’m paying attention

I lie.

You saw one weekend or one day or one hour of “good” and you have no idea what the other side is like.  He is Jekyll and Hyde and you’ve met but one.  So no, your advice doesn’t really mean anything to me.

When you say “but he seems normal enough, it can’t be that bad.”

I lie.

I spare us both, and I lie.

And yes, there are things that would and could be so very much worse and I remain blessed to have him and all of them each day…but there are times

Times when knowing I and we are blessed and that I should treasure each moment and endeavor to teach them all about unconditional love and acceptance, times when knowing it and feeling it don’t always agree…times when he and sometimes they ask me why this is the way it is and when he will be “better” and what more I can do to help him, when I don’t know that there is more to do that I am capable of…and still have the strength hold the rest together.

Months and days and hours of hurt and pain that a parent who can’t make it all go away feels and still has to explain…

When all I can do is lie.


March 7, 2012

The State of Hockey.

Posted in Uncategorized tagged , , , , , at 4:08 am by openendedcomment

Tonight I am a very, very proud parent.

My eldest son is headed to Sectionals for the CI Floor Hockey Tournament…and he is…beaming. 

For him, even more so than other young men, this means everything.  From age 4-8; he participated in traditional hockey.  We are in Minnesota.  Hockey is a way of life.  A rite of passage.  My husband coached and it was their “thing.”  For our son, it was his place of normalcy.  Hockey was where his difficulties didn’t matter…he could skate.  Well.  His ability to read, to write and to add were utterly insignificant on that sheet of ice.  At age 7, the social aspect of the game was minimal at best.  At age 8, things began to be difficult for this sweet, sensitive boy of ours.  At age 8 there were sleepovers.  At age 8 there was elbowing and tripping and occasionaly checking.  At age 8…hockey no longer worked for him. 

From 8 to 14 there were little options for sports.  For him.  There were leagues for children with physical disabilities; a category he did not fit into.  There were leagues for children with average abilities both mentally and physically.  He did not fit in there, either.  For six years, he bravely went to his little brother and sister’s games, cheering them on with a smile on his face…but the void was there.  I hated it for him.  We hated it for him.

Enter high school.  The CI League.  Enter confidence.  A letter jacket.  A place to belong and to excel.  What this has done for him…the ability to be a part of a team, to be a needed and valued member of something bigger than himself…it is difficult to put to words.

I cried the first time I saw him play.  I cried when his team went to the State Soccer tournament.  When he received his letter.  When he tried on the letter jacket I brought home for him and literally shook with pride.  His successes mean everything. 

For our son, our special and amazaing son, life will not always be simple.  He will always overcome more challenges than most.  But now, he will always have this.  These memories.  The strength of success and the power of pride to fall back to.  He will always carry with him the knowledge that he can succeed.

In Minnesota, this most fridgid of states, March means State Hockey Tournament.  It’s an Event.  18,000 screaming fans in a sell-out crowd and literally millions of television viewers.  It’s actually a holiday for some schools.  Even a few businesses.  One whole town.  Seriously.

For every child that ever laced a skate, be it Mighty Mites, Bantam or Varsity, this is it.  The big dance.  The moment you get to skate to the camera, wave and throw out a “Hi Mom!”…the moment you’ve dreamed of. 

It’s also the State CI Hockey Tournament…Sections this week, State next.  They play on glossy gym floors at Bloomington Jefferson rather than the shiny Xcel Center.  There are no television cameras, no scouts in the stands.  No one scalps tickets out front; but there are t-shirts sold.  It is their day.  Their big dance.  Their moment in the sun…

…and in some ways, it matters even more.  Out of this tournament there will be no scholarships signed; no players drafted.  Out of this group something even more profound will occur.  These boys and girls; soon to be men and women; will feel what for them is far too rare.  Total success.  Utter joy.  They fight as hard or harder for their victories both off and on the play floor.  They wave to their families and bask in the glory of the game.  They are kind out there.  They truly wish the best for each other and for the opposing team…they want to win, but feel terrible for those that do not.  Sportsmanship takes on a whole new meaning with this group.

Their schools don’t announce their wins every week.  They don’t have pep rallies.  I doubt very much with our school’s varsity hockey boys headed to that biggest of all hockey tournaments in the country that the majority of the student body is even aware that some of the very best of them are quietly and with great dignity heading to their own big game tomorrow afternoon…right there in their district.  They have homefield advantage.  They earned it.  They don’t carry the same moniker…they are a team combined of three different schools as no one has enough players with their unique qualities to form a full roster.  They don’t care.  They play as one.   

Dog had a game tonight, too.  We hockey parents are a good group.  We form little families (that happens when you’re trapped in rinks together for four months a year.) We know each other; all of the children and what matters to each of them.  Tonight, several of these wonderful people wished him luck and congratulated our son on his big upcoming game.  A few of the Dad’s high-fived.  Two Mothers said they would try to come.  It was all he could talk about in the car…how people were going to come and cheer him on…that he would have so many fans for his team…how wonderful that would be.  There are so few that they notice each and every one.  Every face; every shout of encouraagement, each clap of every hand matters so much

Two such different tournaments in this town of mine…one no more important than the other.  It’s the State of Hockey, baby, and it’s Tourney time…so let’s drop the puck and rock the house.  Good luck to all of our boys; stay safe and make a few memories.

Go Wildcats!