Wednesday, January 21, 2015

Parenting contradiction #2049

Part of the job of raising little humans is training them out of bad behaviors and into good ones, or at least attempting to do so.  There is a judgement each parent makes with their little ones -- what should be changed?  What is fine as it is?  It is a troublesome line to walk.  On the one hand we as parents want our children to feel completely loved just the way they are while almost simultaneously we press upon them our desire for improvements.    It is a curious juxtaposition of "You are so awesome!" and "But let's work on x!".  The latter makes a lie of the former, acknowledging implicitly that there is some aspect that falls short of awesome.

The push for learning and changing is probably part of every parent child relationship but perhaps none more so than in the case of high functioning autistic children.  Sometimes their very proximity to the norm increases the ambition to get them there, as if they were a puzzle piece that almost fit.  If it was a radically different piece you wouldn't even imagine trying to make the fit, but since it's pretty close you decide to impose change upon it.

I worry about this.  Our Little Guy has had so many different kinds of therapy -- all amounting to "learn! change!".  It's gotten him where he is today -- able to participate in life in a way not vastly different than his typically developing peers.   I see the obvious importance of Little Guy improving basic skills.  I hate the message behind it that feels less and less hidden the older he grows.  All I can do is keep reminding him that we do love him completely just the way he is, even as we seek to change him.



Thursday, December 11, 2014

where art meets heart

This was an epic year of reading for me and it ended on a high note.  I had been saving something special that I knew would be wonderful.  To put it in terms Hubby would understand, it was like the last chocolate I had been saving, hidden away, and this December it was finally time to enjoy it. The "it" in this case was Fool's Assassin by Robin Hobb.  Technically it's the first book of a new trilogy, but in reality it's the 7th book to follow this set of characters and the 10th book set in this particular fantastical world.  While Fool's Assasin starts a new story these characters are old friends.

[Read no further if you wish to avoid spoilers]

So far our hero has faced war, assassination plots, witches and dragons.  This 7th book finds our hero now facing...the reality of having a special needs child.  Yes, there are still dragons, murders and other intrigue, but the primary drama of the majority of this book is the relationship between our hero and his youngest child, Bee.  Bee, who from the beginning is different. Bee who finds eye contact difficult, who is over-sensitive to stimuli, who develops speech late, who perceives the world around herself in such a different way than other children.  She is not autistic, she is magically extraordinary in a different way, but Hobb makes her as close to a spectrum child as possible.  

I expected an excellent addition to the fantastical story of Fitz and the Fool and I was not disappointed. I did not expect to find an insightful and heart-rending account of both what it is to be the parent of a special needs child and what it is to be that extraordinary child.  Epic fantasy meets autism in a meaningful and thought provoking way. 

This book has earned a very special place in my heart.  That one of my favorite authors took one of my favorite characters and explored what it means to be the parent of a non-typical child and what it's like to be that child -- it is an unexpected gift that I treasure beyond words.  As the parent of a special needs child I feel like she nailed down many different aspects of it.  I simply love this book.




Thursday, August 22, 2013

then one day you are there

Deep into the last leg of my daily drive time I found myself lost in thought, puzzling over the weightier problems in our lives and in the lives of those closest to our family.  Stumped, as usual, for answers to most of these problems I started imaging various scenarios where I had a single magical wish and how I would use it.  Several delightful scenarios later I started drifting back to reality and I was somewhat startled to realize that in none of these scenarios had I wished my son out of autism --  something that in the past I have spent plenty of time wishing for.  On this day, though, when I weighed that idea my gut reaction was, and still is, rejection. The idea of changing who my Little Guy is seems positively revolting.  I love this kid the way he is.  I love the way his brain works and I wouldn't change what is so deeply a part of who he is.  We will continue to work towards growth is specific areas but the only changes I would wish are for improvements in the world around him.


Thursday, May 23, 2013

Good news that makes you want a drink

At drop off last month one of Little Guy's teachers casually mentioned that she thought Little Guy was "more than ready" to be successful in mainstream school.  His other teacher quickly agreed.  "Really?" I asked.  "Really!" they said, before proceeding to advise me that he probably would need to skip at least one grade.

My world was rocked.  I can best describe this as "Good news that makes you want a drink".

Part One of this urge to drink: entering public school.
We had planned on him having another year at his therapeutic school.  I knew he was doing well, I knew he had come so far.  I also was well aware of the challenges he continues to face.  The idea of taking him from his safe little school where he is understood, protected and loved and putting him at the mercies of public education and its special education offerings is terrifying.  In summary: "Yay! He's come so far! So now we send him into the jungle and hope he survives?"

Part Two of this urge to drink: grade skipping? what?
Ok, so I knew that Little Guy's class was a combined class of kindergarten and 1st grade.  I also knew that his whole class had finished the kindergarten curriculum earlier in the year.  I knew that even earlier in the year they had upgraded Little Guy's language arts curriculum a few times before finally settling on a 2nd grade curriculum that actually challenged him.  I knew he was bright, a great reader and could memorize a vast amount of facts about whatever topic currently holding his interest.

I did not know that he was excelling in areas of academia outside language arts.  I did not know that now that he can write easily he whizzes through his schoolwork.  Apparently for any given lesson he is typically given twice as much work as any other classmate and he still finishes first. I did not expect to hear that my 6 year old kindergartener should be placed in at least the 2nd grade next year.

As all this started to slowly permeate my brain I went through the motions to get him started in public school next year.  IEPs were scheduled, etc.  I worried.  Hubby worried.  I pulled teachers aside and asked again, "Really?  You really think he's ready?".

I began to allow myself to hope that it was true.  As I quietly cursed my way through rush hour traffic in the morning I started to imagine a life where I didn't spend 2.5-3.5 hours driving every day just for his school drop off and pick up.  I imagined time not spent arguing with insurance companies.  I imagined his younger brother being able to attend the awesome preschool down the road from us and both of them making friends that actually live in the same town as us.

As I waited outside Big Boy's class with the other parents waiting for our preschoolers to be dismissed I watched the big brothers, fresh out of their 1/2 day kindergarten classes and dragged along to wait.  These weren't just any boys, either.  These were Little Guy's former classmates, from his somewhat disastrous time in regular preschool.  I watched them interacting with each other, running around and playing, a pack of wild little boys giggling and chasing.  I watched these boys and I wondered if Little Guy was ready to join the pack, if he could run and play with them now.  I worried but I began to hope none the less.

To Be Continued...

Wednesday, October 3, 2012

poof!

I spent most of the day struggling with a disappointment.  It was one of those disappointments that is connected to a long chain of past disappointments.  A minor thing all by itself but connected to that chain my sadness had became a weighty thing.  Hubby did nice sweet things to cheer me up that made me smile but the feeling would not stay in my heart.  Not yet.  I was in a funk I could not get out of.

I was still wiping away stray tears when I went to pick up Little Guy from school.  Then through his open classroom door I spotted Little Guy walking to me, a grin on his handsome little face. *POOF!* My heart lifted.  Just the sight of him and his joy dispelled my gloom and made me okay again.  He's a magical creature, my son.  Both my sons.


Tuesday, October 2, 2012

Luxury is...

Yesterday Big Boy had a rough night, featuring both fever and vomit.  By today he felt a lot better but we were both exhausted and for most of the day Big Boy wanted nothing more than to cuddle on my lap, and only my lap.  Today I am thankful, so very thankful, that I was able to provide him time to do just that. Thanks, Universe.

Sunday, September 30, 2012

the other half of my heart

I've dedicated the lion's share of my writing here to discussing my Little Guy, and there is good reason for that.  The challenges presented by having a special needs child sometimes compel me to drink write.  I'd like to think I don't just blog to whine, but the truth is that when the good times are rolling I'm far less likely to take the time to write.

Today it is neither my special needs son nor whining that is burning on my mind -- it is my youngest son, heretofore referred to as "Baby Boy".  He is 3 now and insistent that he is neither a baby nor a little boy, but in fact a big boy.  I'm going to let him win this one - "Big Boy" he is now.

Earlier this week I picked Big Boy up from preschool.  His teacher dismissed him and he emerged from his classroom like a miniature man in jeans and a little backpack.  It hit me, and hit me hard, how quickly his childhood is passing, like sand slipping through my fingers.  I feel like we somehow haven't been doing enough.  That is one of the beauties of preschool though -- preschool is in many ways a celebration of being little and enjoying all the things that at that age inspire wonder.  I am so thankful that Big Boy gets to be a part of that celebration, and that he has this time away from home when he is Big Boy first and not a little brother.  He gets to be a shining star, all on his own and it suits him well.