Thursday, December 29, 2011

Searching for the Celebrations

Last year I wrote this really great letter and posted it on Facebook (because I wasn't yet blogging).  It was all about how far Munchkin had come in the past twelve months, and it chronicled all the little milestones he had reached and all the ways he was catching up to his peers.  I still tear up when I read it, remembering how much everything changed in a year, from learning he had autism, to accepting that autism, to learning how to live with and deal with the crap that is autism, to learning that life with autism goes on, just as life without it does.  I still celebrate that so much changed for him last year (and continues to change for him this year) as we figured out how to help him succeed and how to meet his needs and how to help him learn and grow.

So this year, it's only right and fair to chronicle Squirrel's year, since February of 2010 brought her many neurological struggles into light.  But as I start to write this, I struggle to find that same spirit of celebration.  The fact is, Squirrel's year hasn't had as many obvious victories.  That's not to say she isn't growing and learning and stretching her wings like any other kid.  It's just, I expected a diagnosis to open up so many doors for her.  I expected having a label for her behaviors to be the magic cure for those behaviors--or at least point us in the direction of an eventual bettering of those behaviors!  And not much of that has happened for her.

Let's back up a little.  In February, Squirrel was diagnosed with Sensory Processing Disorder.  No surprise there--we've known that since I first came across that term in learning about Munchkin's issues.  I didn't need a doctor to tell me that, nor did I need a line of therapists to tell me how to help her.  Since self-diagnosing her  3 years earlier, I'd researched and instituted a lot of the same things a therapist would have done with her.  And she's learned to cope with her sensory issues, and I've learned to "give" a lot more with her than I ever thought I would with my child.  I pick my battles, knowing that some of them are simply a more sophisticated, older child's version of a sensory meltdown--not a belligerent, unwieldy child who's willfully disobeying her parents.

The surprises came with the other labels--ADHD, depression, anxiety, OCD tendencies, and a whole bunch of motor, auditory, and visual processing issues.  These are the things we focused our precious therapy dollars on this year. And this is why I think I find it hard to celebrate Squirrel's accomplishments this year--because nothing we tried really worked.  It's not her failure that saddens me on review--it's mine.  It's the system's.  I expected faster results; more immediate progress--after all, Munchkin's amazing year set the bar pretty high.  I forgot that Squirrel's older, more set in her ways.  She's been dealing with all these things for so long and they are a huge part of who she is.  In much the same way it's hard for an adult to change their ways, Squirrel holds on to what's worked for her for so long, and resists changing the way things are done for a way that may or may not be easier.  She's more easily disillusioned than Munchkin, too, perhaps because many of the things we've tried with her this year haven't made a lick of difference.  She's afraid to try anything new--and that includes a new way of doing things.

And I feel like we're at a standstill here.  We could try some new therapies--I've done a lot of research this year, and there are things that could help her attention deficits and her processing issues.  But they are expensive, and she doesn't want to do any more therapy.  She doesn't think she needs it.  She's nine years old--at what point does she deserve a say in her own medical treatment?  She doesn't want to take her medicine anymore either.  I don't feel that's a decision she gets to make at nine years old.  But therapy?  If she's not invested in it, it will be less than effective.  Do I push her into it, spend the money on it, take a chance on it?  Or do I follow her lead, and lay off?  God knows we could use the money a thousand other ways!

But back to the celebration of her year, because as I write, I realize that there is still much to celebrate here.  Squirrel's made a lot of improvements this year, and while she's still lagging behind her peers in some ways, she's leaps ahead of them in others.  I always want to celebrate my children compared only to themselves, and what they are capable of.  So here's a celebration of some of Squirrel's accomplishments this year:

  1. Squirrel's smile came back this year.  And that alone is worth cheering for, because I had so missed my happy-go-lucky, sarcastic, spunky little girl.  She was so lost in a haze of worry and anxiety that she lost that part of herself.  And almost immediately upon starting therapy and antidepressants, her beautiful personality started to shine again.  And shine she does, every single day since then!
  2. Squirrel started to advocate for herself this year.  She has accepted what some would call limitations, and she has taught us all how to see the silver lining in them.  For example, a few weeks ago she told me, "Having ADHD is kind of cool, because it lets me think about 20 things all at the same time!  Most people can only think about one thing.  That would be kind of sad to only be able to think about one thing at a time."  She's been so open with her friends, telling them why she chews on her "necklace" (her Chewelry) and why she sometimes just needs to be alone for awhile.  She's explained SPD and ADHD to anyone who's asked her.  I was especially proud of her for wanting to participate in our recent calendar adventure, because she said she "wanted others to know that kids with special needs are just ordinary kids like everyone else."  (My kids took part in a calendar featuring various special needs, to spread awareness in the community.)
  3. Squirrel is learning to take responsibility for her own needs.  She is learning to ask for a quiet space when she's overwhelmed, or for something to chew on when she needs to focus.  She's learning that her fears aren't worth fixating on, and that she can talk herself down when her anxieties try to take over.  As someone who deals with her own Anxiety Disorders, let me tell you, these are hard skills to learn!  And she's learning them better than many adults do!
  4. Squirrel participated in her school spelling bee, and came in second place in her grade.  She memorized and presented lines in a couple different programs this year.  She performed in her first dance recital, as well as for 3 parent viewings.  She sang in the children's choir at church.  She gave her first speech in front of the class and got the highest marks in the class.  All this from a little girl who was so anxiety-ridden, she wouldn't even answer a question in public or talk to a stranger one-on-one, let alone get on a stage or in front of a group!  Her confidence has really soared since being on medication!  I guess feeling better translates to feeling better about yourself too!
  5. Speaking of more confidence, Squirrel stopped clinging to me like a scared little possum this year.  She used to be literally glued to my hip when we left the house.  She wouldn't go to the bathroom without me, wouldn't talk to anyone when we were at someone else's house, wouldn't go play with the other children.  This year I started pushing her a little harder to try things on her own.  She now orders her own meal at restaurants, she goes into the bathroom in public places without me, she pays for her own things in the checkout lines at stores.  She's now the one pushing me to be allowed to do more things on her own than I'm ready for!  I guess in that way, she's a typical nine year old girl now!
  6. Squirrel learned to swim this year, after an intense fear of the water kept her on the edge of the pool for  her whole young life.  And she decided for herself that she wasn't going to be afraid any more.  Go Squirrel!
So there it is.  In a long, rambling, round-about way, I have found the celebration my heart was longing for.  Perhaps we haven't failed her after all.  Maybe it will be a much more eventual process for Squirrel, but I know she'll catch up to her peers socially and emotionally.  She'll learn coping skills for her attention issues.  We'll continue to address the motor delays as they come along (she's absolutely determined to learn to ride her bike this year!)  She'll continue to shine in her own way, and frankly, there is no other way I want to see her.  She is an amazing, wonderful child--not that I've ever thought otherwise.  No, I'm more likely to doubt myself than I am to doubt her.  But I will work on trusting my instincts and my insights more this year, and I will focus on all the ways my little girl soars.

Sunday, December 4, 2011

Gotta Keep Going

This has been quite a week.
I'm worn out.
Beaten up.
Bruised and sore.
My body is weak and tired.
My brain is buzzing.
My heart is heavy.

This week has brought to mind reminders of where we were two years ago.
The daily frustrations.
The battles over simple tasks.
The dread at the thought of getting out of bed and facing another day.
The exhaustion that hits you way before it hits the kids.
The yelling.
The crying.
The meltdowns.  Oh, the meltdowns.

Two years ago, there was so much we didn't know.  We were just starting down this road, with more questions than answers.

But we've been doing so well lately.  Munchkin had been doing so well.
We had reached a place where we understood and anticipated his every need, his every move.
We were getting so good at preventing and heading off those meltdowns!  We were going weeks at a time without a major one--days even without a minor one.

Life had settled into a groove for us.  Life had become manageable.  Life was actually fun again.

But this week.  Oh, this week.  What happened this week?
The meltdowns are daily and often.
The bedtimes are tough and leave me mad and hurt and frustrated.
The aggression is leaving all of us with bruises on our bodies and our souls.
The inappropriate behaviors.  The unacceptable words.  We're dealing with all our old demons, with some new ones thrown in for good measure.

And we're trying so hard!  But it's stressful.
It's exhausting.  Bone weary, body weary, soul weary.
It's lonely.  No one really gets it.  No one knows how we struggle at home, because we try so hard to hold it together in public.  All of us--me, my husband, Squirrel, Munchkin too.

It's so unfair.  To us as parents.
To Squirrel, who is so kind and compassionate even as her brother is being so hurtful and mean.
And to Munchkin, who does not mean to be this way.  He doesn't intend to hurt us.  He doesn't fully understand that what he does and says leaves scars that are hard to heal.
And he doesn't know how much my heart breaks to see him struggle and meltdown and fight so hard about little day-to-day things.

And it's not his fault.  It's not anyone's fault.  It just IS.

Maybe it's the holidays.  Maybe it's the changing seasons.  Maybe it's his diet, or a growth spurt, or any of a million other mysteries that autism brings.
Maybe I got too cocky, thinking we had this autism deal all figured out.
Maybe this is just how our life is going to be from now on.  A roller coaster of ups and downs, twists and turns.

Maybe you could just pray for us.
I'm discouraged.
I'm tired.
But I'm not giving up.
This is not a life that lets you give up.  Each day brings something else to fight for, to strive for, to reach for.
So when you think of me, please pray for strength for me.  Pray for my daughter who tries so hard to understand all of this.  Pray for my husband who deals with it more than me right now, playing the role of stay-at-home dad while I work.  And pray for Munchkin, that whatever is going on with him will calm back down so we can get on with the process of loving life again.