Way Down In Crown Point, In Indiana...

You know how, before you had kids, you would think about what it would be like to be a mother?  You know, like how your children would look and act.  How you would play with them and do certain things with them.  How you would NEVER say "that" but ALWAYS do "this."  Perhaps you, like me, thought about those things you loved and hated from your childhood, and imagined how your children would do those things--or not!  You probably remembered those important lessons you learned, and how you learned them, and wished for the same opportunities for your yet-unborn children.

And then, your children came along.  And nothing went quite according to plan.  And then the diagnosis came, and plans went up in smoke.  Or maybe just changed.

I grew up going to church camp every summer.  I loved it!  Loved feeling grown-up staying away from home for a week.  Loved the friends I made every year there.  Loved the worship, the lessons, the campfires, the games, the swimming, the canoes.  Still value so many memories from those days at Camp LRCA.  Loved learning so much about God, and competing with other teams to memorize the most scripture during the week, and opening up to men and women of God who knew so much more than I did about the Bible.

Camp made "church" fun and exciting to a child.  And I always knew that I wanted my kids to go to camp someday too.

So when it turned out that those imaginary children who were born eventually had very real problems, I was sad about a lot of things they might miss out on.  Like camp.

How could I send Squirrel off to spend five nights away from home in a cabin filled with eight girls laughing and giggling through the nights?  She needs her full nine hours of sleep, and struggles so hard to get it even at home!  How could I expect her to deal with the many sensory issues that camp brings with it, like bug bites and sticky, sweaty days and food that isn't prepared like she would want it and overwhelming noise and activities?  Who would she turn to when she needed help dealing with all the stimulation?  Who would understand that she wasn't being defiant, but was overwhelmed?  Who would deal with the inevitable meltdown that would leave her in a puddle of embarrassed tears and shame?

And Munchkin--how could I ever send him away overnight with a bunch of typical kids?  He needs too much one-on-one to deal with the stimulation and the frustrations and the demands of a camp setting.  This may never be possible for him!

It was a hard pill to swallow, especially as other kids went off to camp each summer and I realized fresh every year that my kids might not ever do this.

But this spring, my friend from college contacted me.  She's now the manager of good old Camp LRCA, and wanted to know if I would come out for the week she was Dean.  I got pretty excited as I realized that my children actually fell into the age range for this week of camp, and that it was a short week (3 days), and that they could potentially come with me.  Surely they could handle camp with me right there to support them!  I told my friend I'd be happy to come, as long as a few accommodations could be made for us.  I worried this wouldn't be possible, but she gladly agreed to make whatever accommodations we needed!

So off we went to camp.  Squirrel stayed in a cabin with some of the other girls; Munchkin and I had a cabin of our own.  Squirrel had an amazing time!  She made several friends right away, and loved the whole experience.  She had trouble sleeping the first night, but dropped off from sheer exhaustion the second.  Because I was right there, she was able to come to me for hugs and support when she needed to, while still enjoying the freedom of being on her own for the most part.

And Munchkin did amazingly well.  He needed a lot of breaks from the constant activity.  He needed to sit out of a few activities when the heat or noise level got to him, or his anxieties started to build.  He wore his headphones in the main sessions, and sat off by himself for lesson times, and really bonded with one of the adult leaders who allowed him to use her phone to unwind with games when he needed space and time alone.  His smaller-than-average build and social delays may have worked to his advantage in helping the other children to accept him--they all assumed he was much younger than they were, and put up with some of his more "annoying" behaviors because of his "age."

Both of them felt so proud and grown-up being at camp, and can't wait to go next year.

And I am so proud of them.  Squirrel's Cabin Mom told me how mature and confident she is, and was so impressed with her ability to memorize scripture quickly.  I never really told anyone except the Dean that my kids have special needs, but on the last day of camp one of the other leaders asked me about Munchkin's headphones.  I told her he had Autism and explained how the headphones helped him, and she told me he was so well-behaved all week and such a smart, sweet boy!  Of course, I beamed at that.

I'm looking at some of the other dreams I once had for my imagined children now.  Maybe I've set my sights too low for my real-life blessings.  Are there other dreams I've given up on because of their needs?  There's obviously nothing my kids cannot do if they set their minds to it and are given the support they need!  And I will gladly go to camp with them every year if that's what it takes to help them succeed.  Or do anything else I need to do to help them realize their dreams, as well as those I've dreamed for them.

Oh, and also?  Thanks so very much to my dear friend for giving us this opportunity.  I'm sure you had no idea that simply asking me to help you out would in turn help us in such an amazing way.  Thanks for loving and supporting my kids the way you, and all your leaders that week, did!  We are so very grateful to you!

Oh, Torturous Heat!

My dear sensory boy.  I understand that your body does not respond well to temperature changes.  It's why the shower has to be lukewarm, or you feel like it's burning you.  Or why you stay in the pool until your lips are blue, rather than feel the breeze on your wet skin that torments you.  Or why you have to put dry gloves on the second yours get wet in the snow, because your fingers hurt so bad when they're cold that you cry. Or why you seek out the shade wherever we go in the summer and meltdown if you can't find any.

I understand, because I was a lot like you.  Still am in many ways.  When I was a kid, my family would take these hikes together.  I loved them on cool, breezy days.  My parents loved them on crisp, cold days.  I would follow along, grumbling and upsetting everyone around me, and hating every minute of what was supposed to be special family time.  My family also liked to tunnel into the huge snowdrifts and make forts where we could then have snowball wars.  Or make snowmen together.  And since these things were family-time activities, no one was allowed to opt out of them.  My dad was sure I hated being forced to participate in something with the family.  I really just hated the cold.  But I didn't know how to explain to them why I felt so bad.  I didn't understand why I had such a low tolerance to the cold, when I was bundled just as warmly as anyone else, and they didn't mind it at all!  So I suffered through these times, sometimes near tears because I was so miserable, and not understanding what was wrong with me.

No one understood that the temperature actually caused me pain.  And I didn't know how to tell them that the cold made my eyes burn so bad I wanted to keep them shut.  Or that it felt like my lungs were going to burst with every breath of cold air.  While their toes got cold gradually, mine actually started burning with pain within minutes of being outside.  And once I was cold, I never warmed up for the rest of the day.  I'd actually lay in bed after a day out in the snow and shiver under all my blankets, because my body wouldn't adjust back again.

So, baby, I get it.  I understand why you don't want to go outside and play.  For me it was the cold...for you, it's the heat.  You get overheated so quickly.  You hate feeling sweat on your body.  You hate the brightness of the sun, and don't like the way sunglasses feel.  The glare on the pavement and the sidewalk makes you feel disoriented.  You don't like your clothes to stick to you.  You want to enjoy riding your bike and playing at the park, but you just can't get past the discomfort that overwhelms your mind and blocks out all else.

I really do get it.  And I try to make it more bearable for you.  Lots of cold water to drink and play in.  Cold wraps for your neck.  We've tried hats and sunglasses.  Popsicles.  Sprinklers.  Nothing works...unless you're in a pool.  But baby, we can not spend the whole summer at the pool!

Sweet boy, it's summer.  You need to get out and play.
Your body craves the movement and exercise, and your mind is turning to mush with only electronics to amuse you.
You are restless and bored inside--there is so much to do outside!
You want to do something.
I am trying to clean and work from home, and sometimes I just need some time to myself.  I need you to entertain yourself once in awhile.
Your sister gets lonely.  She wants someone to run around and climb trees and ride bikes with her.
You really need to play outside a little bit!

Yeah, I get it.  But I don't like it.

 

Typical Versus, Well, Us

We are a very open family when it comes to sharing our experiences with special needs.  We don't hide the fact that our children have autism and sensory processing disorder and anxiety and depression and adhd.  We are very proud of our children, and these things are a part of who they are.  A large portion of my energy is poured into promoting acceptance and understanding of my children, especially when their unique needs cause them to behave in ways that are not acceptable to the world that doesn't know about about these disorders.

So, many a public excursion involves me explaining to someone that Munchkin can't help that he just (touched you/ bumped into you/ melted down in the middle of the aisle/ took your kid's toy/ issued an ear-piercing scream) because he has autism and is overwhelmed by what's going on around him right now.  And sometimes I receive a very understanding smile, or a verbal acknowledgement that it's ok.  But more often than not, the response is less than desirable.

"Are you sure?  He doesn't LOOK like anything's wrong with him!"

"Seems to me he just needs a little DISCIPLINE."

"Maybe you shouldn't bring him here if he can't handle it."

"My nephew has autism and he can't talk.  Your kid can talk fine--he doesn't have autism."

I will be the first to admit that our autism does not always look like anything remotely autistic-like.  Munchkin is a very normal six-year-old boy in many regards.  But he is also an autistic child in many respects too.  Check it out:

Typical Six-Year-Old Behaviors	Munchkin’s Take On These Behaviors
Licking an ice cream cone to see what it tastes like	Licking windows, cars, doors, people, the cat, and the table to see what they taste like.  Oh, and ice cream too.
Spinning until dizzy, then falling down giggling, just for the fun of it	Spinning for long periods of time without getting dizzy, not because he wants to, but because he feels like he has to.
Ignoring Mom’s request to clean up the first time she asks, then doing it when she gets the stern voice	Not hearing Mom’s request to clean up unless she first makes eye contact and gives you warning that you will be cleaning up soon, and then melting down if she doesn’t allow you to finish what you are doing.  And sometimes melting down even if she does.  And definitely melting down if she has to use a stern voice!
Whining about having to do homework before playing video games	Melting down every single night about having to do homework because it interrupts his desired video games, or even the thought of those desired games.
Occasionally putting shoes on the wrong feet	Purposely putting shoes on the wrong feet because they feel better that way
Learning the rules of the English language in order to read and spell	Struggling to read and spell because the rules of the English language don’t make sense to his literal mind that wants to sound everything out
Sleeping 10 hours at night	Sleeping anywhere from 5-9 hours at night, and only with the help of melatonin
Doesn’t know what stress feels like	Chewing his shirt constantly and obsessing over everything that bothers him in the least
Understanding that his friend is mad at him because he took her toy away from her	Not knowing why his friend yelled at him and tried to snatch her toy back after he took it away, because he only understands his own point of view, not that of another
Begrudgingly giving that toy back to his friend because he understands he was wrong	Having a meltdown over being asked to give the toy back to his friend, because it makes no sense to him that he can’t play with it when he wants to
Knowing that if mom says “In a second” when he asks for a drink, that she will get it for him in the near future	Counting “ONE!” after mom says “In a second” because one second has come and gone without her getting him the drink.
Hugging mom, dad, and sister because they’re family	Hugging strangers in the grocery store and the neighbor down the street because he likes to give hugs
Staying close to mom in a public place because he understands that he could get lost if he doesn’t	Wandering off in a public place because something caught his attention and he doesn’t realize mom won’t know where he is
Doing exercises in gym class	Doing exercises with mom every morning, and with an aide throughout the day, so he can focus at school
Following a daily routine because he’s been doing it that way for years	Following a picture schedule for daily routines that he’s been doing for years because he can’t stay on task without it
Tying his shoes	Wearing Velcro shoes still because we are years away from the motor control necessary to tie them
Occasionally using a word wrong, especially if it’s a new word he’s just learned	Using many words wrong, every day, because his brain jumbles them all together and he sometimes pulls a word that sounds close, but means something entirely different—even very common, everyday-use words
Enjoying going to the movies with the family	Avoiding the movies, because it’s too dark and too loud, and because he’ll talk and wiggle all the way through it and no one will be happy by the time it’s over
Petting the cat gently, or at least knowing to let go when it protests	Not realizing how tightly he is holding the cat, or that it can’t breathe, or that its hissing means “let me go!” and then not knowing why the cat scratched him when he was just showing it some love!
Showing love with hugs, kisses, and words	Showing love with super-tight hugs, a ritual of kisses, and, yes, words!

Yes, he's a typical child with some atypical ways about him.  But he's our Munchkin, and he's perfect in our eyes.  And I will never stop educating those around us about autism, because I want the world to see just how perfect he is!

 

 

 

 

A Letter To My Friends

My dear blog-reading friends,


It's been a long time since I've sat down to write.  That's because I've been so busy living life, and frankly, this winter has been a tough one for me.  Between work and health issues, we've been dealing with some new issues with both kiddos as well.  So time to myself has all but disappeared.  But life is slowing down again now, and I have so much I want to say and do and write!


But first things first...April is here again.  It's my favorite month of the year.  It's the month my baby girl was born (joy!).  It's the end of winter (blah) and the start of spring (yay!).  And it's Autism Awareness Month.


In our real, day-to-day life, we don't always feel a lot of support.  That's not to downplay those who do support us--we love and appreciate our parents and siblings, who are amazing with Munchkin and love him and embrace him for the wonderful child he is.  And we have friends who listen and try to understand what's going on with us, and continue to hang out with us, and love our kids.  We love our friends!  And we have a lot of friends that we've never even met, except on Facebook and in online support pages, who completely understand and support us.  We value them immensely.  


But the people we encounter everyday?  The ones who we see at church and at work and in the community?  Even our doctors and Munchkin's team of therapists and teachers at school?  We don't feel support from them much of the time.  And that's been one of my biggest struggles this winter.  That feeling of fighting for your child to be understood and accepted just as he is.  And this winter, we've had a doctor tell us that he doesn't think Munchkin's on the spectrum, that perhaps he was misdiagnosed.  (This, after just one hour with him...really?)  We've had teachers tell us Munchkin's just "playing us," that his "annoying" behaviors are things he could control if we were a little more disciplined with him.  We've had our OT at his school discontinue his services, because he's "just fine" and doesn't need any more help.  (Which has placed us back on the private therapy waiting lists, because, believe me, he still needs help.)  We've struggled to help him find his place in our church, because he doesn't want to be there anymore.  We've struggled to go to restaurants and stores, which we had figured out, but now cause sensory overloads again.  We've had to find different ways of discipline, of motivation, of calming him, because what worked once does not work now.  Parenting is exhausting work for anyone...but parenting a child with special needs is so much more.  More painful, more exhausting, more trying, more failing, more battles, more goals, more steps to reach those goals, more lessons that need to be learned and relearned and relearned... 


So that's why I love Autism Awareness Month.  Yes, I am committed to raising awareness about the early signs of autism, because I believe that the earlier it is diagnosed, the better the child's chances are of overcoming many of their obstacles.  And yes, I am committed to raising money and participating in research about autism, because there is so much mystery surrounding these children and how their brains work.  And yes, absolutely, I am committed to showing the world that our children are so much more than a diagnosis.  They are so much more than their behaviors, and their quirks, and their silences, and their stares.  They are amazing, brilliant, creative, beautiful children who experience the world so very differently than the rest of us.


But mostly, I love it for very selfish reasons.  April makes me feel less alone.  It lets me know that people all over the world are fighting to help their children fit in; to teach their friends and their communities to accept these awesome kids for who they are, not who society says they should be.  It makes me feel valued and appreciated for my hard work every day.  It gives me a purpose, something besides my kids to pour my energy into.  It allows me to make a difference, to share my story, to show the world my amazing child and to celebrate him.  And it brings some of our struggles, some of our pains, and some of our joys into the homes and lives of people who really don't know what life is like for us.   


But most of all, Autism Awareness Month makes me proud to be a part of the autism community.  None of us ever wanted to be members of this group of people, but we are.  And we are warriors!  We are strong, we are brave, we are mighty.  We band together and support one another.  We share a common voice and common goals.  We love our children just as they are.  We support them in a world that wants to change them.  We speak for them when their own words can't express how they feel or think.  We teach them and give them the tools to succeed in this world.  We know that our children are incredible, that everyone of them is valuable.  And we are proud, so very proud, to be the parents of a child with autism.


So check back throughout the month.  I have so much I want to say about Munchkin, about autism. I have this huge desire to show you all just how amazing my little guy is!  I hope you don't mind if I brag on him just a little bit now and then.  Love to all of you,


Ellie

Things I Have Said Today

1. It's not morning yet.  Go back to bed. 
2. Did you change your underwear?  We change our underwear every morning.
3. Hands out of your pants.
4. We don't hurt the cat.
5. Quiet voice.  No yelling.
6. Don't lick the window.
7. Get off the couch like that.
8. He's making a hurt noise.  Let him go.
9. Yelling hurts my ears.  Quiet voice.
10. You're right.  I'm trying to ruin your life.
11. Do you have to pee?  Then don't grab that.
12. Stop licking the mirror.
13. Keep your spit in your mouth.
14. Did you remember to wipe?  Go fix that.
15. Stop torturing the cat.
16. Jump on the trampoline, not my couch.
17. I know, I am the meanest mom ever.  Now do your homework.
18. Let go of your sister.  You're choking her.
19. Stop kicking your brother.
20. I'm gonna lock you both in your rooms if you don't stop it now.
21. Don't wipe your nose on me, use a kleenex!
22. Plates aren't garbage.  Take it out of the garbage please.
23. Eww!  Did you just lick me?
24. Get off of her!
25. Do your homework.  
26. Clean your room.  No, it's not my room, I won't clean it for you.
27. I don't care if you like it messy.
28. Because I said so.
29. I didn't ask you what you want to do.
30. Is it bedtime yet?

Black Holes and Gravitational Pulls

The universe is trying to tell me something.  Or, at least the blogger universe is.  I follow a handful of blogs written by fellow autism/ special needs mommies.  Oh, and one written by a daddy.  In the past few days, most of them have had posts relating to one topic.  Call it coincidence.  I think it's bigger than that.  I think it's God telling me I'm not alone.  So I add my own blog post to this common thread circulating around the blogger community, in the hope that someone else, perhaps even you, will read it and know that you're not alone either.

I'm not a big fan of the whole "New Year's Resolution" idea.  I usually skip them--I mean, what's the point in proclaiming something that is only going to result in a guilt-induced overindulgence of that something when you mess up and do (or don't do) that thing you swore you would (or wouldn't) do this year?  Yeah, so I skip the guilt and just don't even resolve to do anything new or different or better in the new year.

But this year, I felt compelled to make a "resolution," if you will.  Not out loud, mind you.  Just in my head.  Well, and to my husband, who looked at me a little funny and reminded me that I don't do resolutions.  But I made one:

This is the year I place my own needs at least as high

 on the triage charts as the needs of the rest of my family.

What does this mean, you ask?  Well, obviously, I want to eat better and get more sleep and try to exercise.  I want to get haircuts when I need them, and buy new makeup and clothes that are actually stylish and fit me right.  I want to replace my threadbare undergarments, because we all know that moms stop buying themselves underwear when they start buying it for their kids.

But I took the biggest and most important step towards the higher-valued me today.  I went to my doctor.  I told her in stumbling, shaky words how everything just feels so big and stressful and out of control right now.  How this veil has been pulled over my days, making everything seem just a little blurry and out of focus, tripping me up as I stumble through the days and nights of autism, anxiety, unemployment, multiple jobs, health concerns, education concerns, IEPs, diets, seizures, and ADHD.  How I am annoyed and angry more often than I am sad, but when the sadness hits, I just want to give in to it and allow myself a total breakdown.  Which makes me more angry.  How I am taking it out on my kids--how I can't stay calm when Munchkin relies on my calmness to keep him from flying off the handle.  How I can't keep Squirrel organized because my own thoughts are a jumbled mess.  How I can't muster the energy to play with them or draw with them or listen to them talk, and how they know I'm not really all there even when I try.  How my husband doesn't know what to say or do, but knows enough to support me when I say I think I'm depressed again.  How I can't fall asleep at night, and when I finally do, I can't stay asleep.  And how I'm SO TIRED during the day.  How I'm not eating much, and what I do eat is not healthy.  How I don't want to leave the house, but the thought of just staying here all day surrounded by this cloud of heaviness makes me even more anxious.  How I think I'm just really stressed, but it's about to cross the line into a serious depression, and I think I need to go back on antidepressants before we get all the way across that line.

I poured all this out, then I took a deep breath and looked up at her hopefully.  And after asking some questions and clarifying a few things, she agreed that I have more than the average amount of "stuff" on my plate and I am certainly a little depressed and a carrying way too much stress.  So I left there with a prescription and a referral to a counselor to talk about how to deal with this stress, since none of it will go away anytime soon.

And tonight I feel a little bit hopeful.  And grateful to all those honest moms and dads out there who are willing to share their stories and expose themselves to help another.  Who aren't afraid to say when they need help, whether it comes in someone to talk to, or a little blue pill, or any other form.  Thank you for being brave enough to write what you're experiencing, and for pushing me to realize where I'm headed before it gets too bad.  

If you've never dealt with depression, you can't understand the way it grabs your mind and takes over.  It taints the way you experience things, the way you understand things, the way you feel things.  At first, it tells you that you're strong enough to deal with anything, that you don't need any help, that you can pull yourself up if you just try harder.  And all the while, it's slowly pulling you into its gravitational field.  And at the center of that field is a big black hole that will destroy you.  

I've dealt with anxiety and depression since I was a teenager.  This isn't new to me, but sometimes I try to be too independent.  Depression is too strong a beast to be fought alone.  You'll get caught in its gravitational pull and start spiraling towards the center of the black hole.  Do you know what happens to stars in outer space when they get too close to a black hole?  They explode.  They go out in a glorious display of color and light, but then they cease to exist.  I've been really close to that black hole before.  Close enough to think about hurting myself, hurting my children.  Close enough to break down sobbing on the side of the interstate, afraid of the demons in my head telling me how much easier it would be if I just made it all stop.  Because that's what Depression does--at first it tells you that you're fine, but after awhile it changes its tune, and starts to tell you how hopeless and futile life is.  Those were some really dark days, when I was staring right into the vortex of that black hole, waiting for it to suck me in and make me explode.  I never, ever want to go back there.  I want to grab all the help I can get until that veil covering my life right now starts to lift and I can cope with all the things life has handed me again.

And if you feel any of these things, please talk to someone.  Your doctor's a good person to start with.  Depression takes many forms.  For some people, it's crying jags and melancholy that won't lift.  For me, it's anger and annoyance with every little thing, interspersed with an utter indifference to life.  It's body aches and headaches (I actually wondered if I was fighting a flu bug for a few days!)  It's insomnia and fatigue.  And don't be ashamed because you aren't actually Supermomma.  No one else is either.  We deal with a lot just  trying to balance spouses and children, doctors and therapists, schools and daycares, concerns for this day and for the ones to come.  Even the super mommas need someone to keep them from spinning out of control sometimes!

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.