Help Me to Remember

In these hard days, help me to remember that it's been hard before.  I need to remember that hard times come, and hard times go.  Help me to remember how far we have come already, and that things can look up.  Because sometimes, usually not for long, I can forget.  And that scares me.

Help me to remember that all the choices we have made have been made with pure hearts, always with best hopes for other, not for self.  When you have to make such big decisions all the time, it can be easy to question yourself, and sometimes that makes me upset.

When things are rough, I need to remember all of my blessings.  I don't always want to be focused on my worries, there are many in this world who would see my worries as trivial in light of their own, and they are right.  It's all the things I take for granted that are my blessings, how lucky I am to take so many things for granted.  Remembering my blessings can make me feel grateful, and loved.

Help me to remember, when I'm having a hard time, that it's okay if I don't always know what to do.  It's okay if I try a zillion things, some of which I thought were great ideas, and they don't seem to work.  It is my effort and dedication that matter, and lots of times these don't fail me.  When I can't figure out the answer, and I feel like I am walking in circles I can feel frustrated, and dissapointed in myself. 

Help me to remember that when I don't know what else to do, it's always a good idea to love a little harder.  It may not fix everything, but sometimes it's all I have to offer.  And a little extra love never hurts.   

Is there anybody out there?

I read a lot.  I take great comfort in recognizing my family's story in other people's stories.  Perhaps it is human nature to know that we are not alone.  When you face the challenges of parenting a child with autism, circumventing and obeying the host of "rules" your child lays out for you, it is hard not to feel like it is impossible that anyone else could possibly understand your life.  And how you live it.

And no offense, but I honestly do not think one can truly "get this" unless they are living it.  It is just too much, too all-encompassing to understand unless you are in it up to your armpits. 

At this particular moment in time, I am feeling very isolated.  We are going through a cycle of extreme sensory issues, and thankfully I am now experienced enough to know that these issues will cycle out again, but for now, they are very, very real.  And very, very limiting. 

As one example, right now we are going through an extreme aversion to food smells.  Extreme.  It is very hard to find things to cook that will not make him feel as if his body is under attack.  Try going to the grocery store with a child who can lose all sense of decorum at the slightest whiff of banana. 

At times like this, my world gets very small.  There are few places I can go, few things I can do.  Honestly, it is a pretty lonesome scene. 

I know that there are other moms out there who honestly understand the bizarre dilemnas I find myself faced with.  Moms worldwide ask each other for advice on tips for facing parenting challenges, how you get your kids to bed on time, ways to sneak more vegetables into their kids, stuff like that.  But I'm looking for help solving slightly less common problems, How do I get my boy to keep the sleeves of his winter coat rolled down ?  How do you get your child to tell you if they've hurt themselves?  How do you explain to people what your child needs without coming off all "preachy"?

You are out there, right?  Other moms do have these kinds of questions...right?

What a Wonderful Kind of Day!

It's great when you don't have to reinvent the wheel.  Which is exactly what us parents of children with Asperger's Syndrome do, all the time.  Every time our child meets new people.  Everytime we bring our child to a new environment.  We have to find a succint, accurate description of our child's differences, and still try to find a way to put some focus on the good, before losing the audience's attention.  We need to quickly plead them to look beyond what can appear as indifference on our child's part, or quirky behaviours, and take the time to see the multitude of gifts our child has to offer.

You know what?  From now on, I'll be sharing this link.  Because it is a great, child friendly description of Asperger's, and how children with differences still have a lot to offer in friendships.  And how it is worth making some accomdations to have a great friend.
http://www.youtube.com/watch?v=TYgN2few-Tw

Arthur, the beloved PBS character has featured an episode on Asperger's Syndrome.  The episode is titled "When Carl met George". George is a great artist, a train specialist, startled by noises, and easily upset.  Sound familiar anyone?  The episode even addresses special interests, without an insulting slant that our kids are "obsessed" with something.  Following the cartoon, the "and now a word from us kids" section featured some real children who have Asperger's and autism. 

It was well done, and definately worth sharing.

A world where t.v. shows take the time to appeal to all of its viewers, and fosters understanding amongst children to appreciate differences....what a wonderful kind of day!