The great thing about the Pity Party

If you read my last post, I had kind of a crappy day on Friday.  I got over it, and we are all in a better place today, and it actually started to get better not long after I wrote that post.  I got to spend the evening with some of my favorite moms, who let me know, it wasn't a table for one.  Sometimes it may feel that way, but I was reminded that I am never ever alone.  It's reassuring to find out there is nothing wrong with me for wanting to cry sometimes, and that there is nothing wrong with me for admitting that this journey is not always sunshine, rainbows and unicorns, and that others read my vents and are grateful to know they too, are not alone.


More importantly though, I reminded that I am so lucky and grateful to be travelling this road.  If it weren't for the fact that my children have special needs, I wouldn't have crossed paths, and developed deep friendships with, some of the most wonderful, kind, loving and inspiring people.  I simply cannot imagine my life without them.  They bring such a depth of joy, and love to this life.  So yeah, sometime it sucks, big time.  But the upside is that most of the time, I am surrounded and supported by so much love.  Not just for me, but for my children.  That my boys are loved and cherished by my family and me unconditionally is a given.  That they can be cherished and valued by others who truly see them is such a great gift. 


Tonight I get to hang out with those same moms, only tonight we get to celebrate our amazing kids, and plan for them, and it will be a happy occasion.  And in just a couple of weeks, we are going to sit in a theater, and share tears of pride as our very special kids get on a stage and shine a light that tells the world how special they truly are.  No one will be happier or prouder of their kids than we will be  that weekend. And that joy is only intensified by our recent moments of  "this sucks."  It is precisely because it is sometimes so very hard, because we can share that difficulty, that the intensity of joy during the moment of accomplishment are so much deeper. 


One of my favorite movies is Parenthood, and one of my favorite scenes is when the Grandmother explains why she prefers the roller coaster to the carousel. "Up, down, up, down.  Oh, what a ride! I always wanted to go again.  You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited and so thrilled all together!  Some didn't like it. They went on the merry-go-round.  Nothing.  I like the roller coaster.  You get more out of it."


I love the roller coaster too.  Always have been a roller coaster kind of girl!  Maybe there was a reason for that.  "Pity Party" days just come with the ride, and my fellow roller coaster enthusiasts get that.  I now they, like me, will gladly take the down days because the thrills and unadulterated JOY that come with it are completely worth the bad days.  The best thing about the roller coaster is that it is more fun with friends, and I have been blessed with so many wonderful people with whom to share the ride.  Today, we are flying high, but when the next drop comes, we will be ready, and we won't be riding alone.  

I'm Still Working On It

This week, we finally signed the IEP for Nicholas.  It's official.  I have three kids in Special Ed.  For anyone reading this who hasn't heard the term IEP, it stand for Individualized Education Plan, and every child in SpEd has one. It lays out the qualifications, and goals for the child for the year. Ever year, we meet, go over the progress, and rewrite the goals.

The decision of the IEP team, in Nick's case, is to send him to a different school in the district for 5th grade, so that he can participate in a program for kids with high functioning Autism and Aspergers. It is a Special Day class, he will not be mainstreamed.  The program is wonderful and I know he is going to thrive there.  I am even hopeful he will make some real friends.  On the whole, this is a good thing.  Yet, when I went to sign the paperwork, I just wanted to cry.  

I'm not even sure why.  We are so blessed.  I have more than one friend whose children have had to fight just to live.  My friends deal with brain tumors, and leukemia, and liver cancer.  My kids have it so easy in comparison.  But I still want to cry, and I feel guilty for feeling that way.

I know in my head how lucky we are.  I know in my head that while it won't necessarily be easy, they will be okay and happy.  My heart just hasn't quite got the message yet.  It still feels the sting of seeing my son in tears after being teased and bullied.  It feels the sting of judgment and assumption that comes when others look at my kids and don't see them for who they are.  It feels the sting when I can see in people's eyes that they see labels and stereotypes instead of people: "Down Syndrome"  Autistic"  "weirdo"  . . .  the r-word.

I am grateful.  I am, truly, grateful that my children are healthy, and don't have to fight the battles other children do.  But in my heart, that's not enough.  I want them to be seen for who they are,  accepted as is,  included and valued for their unique gifts.  It's not too much to ask is it?

Or maybe, I just need to focus less on what the world thinks, and spend more energy on being grateful for the privilege of being their mom, and for their health and all the love and support that surround us.  Maybe I just  need to get over myself and my hangups.  I'm trying. 

I hope my stronger friends, whose children have real fights to fight, will forgive me, and be patient with me.  I look up to you, and want to be more like you.

I'm still a work in progress.

See Me

SEE me.

I am creative.

I am funny.

I am affectionate.

I am curious.

I am capable.

I am smart.

I am artistic.

I am fun.

I am kind.

I am silly.

I am serious.

I am thoughtful.

I am aware.

SEE me.

I am a learner.

I am a dancer.

I am a gymnast.

I am a musician.

I am an athlete.

I am a story teller.

I am an artist.

I am a scientist.

I am a singer.

I am an actor.

I am a writer.

I am a boy.

I am a son.

I am a brother.

I am a friend.

SEE me.

I am not Down Syndrome.

I am not Autism.

I am not retarded.

I am not weird.

I am not limited.

I am not disabled.

I am not what you think.

See ME.

I am worthy.

I am full of wondrous possibilities.

I am amazing.

See. Me.

What a Week

When I woke up this morning, I was feeling really . . . off. My throat was scratchy, which is no big deal, but I had no energy. I felt like I hadn't slept all week. Robert is such a saint, he let me take a nap all afternoon, and while I am no longer tired enough to sleep, I still feel really drained. Honestly, I think if I had a good cry, some of my energy might be restored, but I was sitting here trying to figure out WHY I feel so rotten, and it occurs to me this week was probably one of the most emotionally draining weeks I've had since Gabe's last serious illness. The obvious event was the surgery of my friend's son, Teddy - the one for whom I dyed my hair blue. The surgery was on Wednesday, and I spent the day at the hospital with my friend's family until he was in recovery and they could go be with him. It was a pretty tense day, waiting while an eight year old boy we all loved had his brain exposed so the surgeon could remove a tumor that we smack in the center. At the end of the day though, Teddy proved what an amazing kid he is, and he proved the power of prayer a hundred fold. The surgery went smoothly, they were able to remove the entire tumor and it looks to be benign. That night I really felt like crying, but never did, so I guess I've been carrying that around all week.

What Teddy' surgery did for me, however, was re-align my perspective a bit. I like to think that the experiences we've had on this parenting journey with kids who aren't typical has given us a pretty decent perspective on life - an appreciation for the important things, the ability to recognize the big stuff from the little stuff, and that 99% of it is little stuff.

But sometimes I lose my way, and get off track. I've been wasting a lot of time lately worrying about the fact that my house is always disorganized, and that I can't keep up with anything, and I've been spinning my wheels trying to fix that instead of spending more quality time with the kids. At the same time, the fact that all three of our kids can now be described as "not typical" has come into sharp relief.

For Nick, those little quirks and idiosyncrasies of Aspergers seem to have graduated from minor annoyances to hindrances and problems. I think we are at the beginning of what is going to be a far more challenging period for Nick, and I have to say, I'm not sure I'm up to the task. I am truly feeling wholly inadequate to guide him through what's coming, and I'm desperately afraid he won't make it through without some collateral damage. It doesn't help that I feel like I'm flying blind. Aspergers is such a great unknown to me, and it is such a wide net, that I don't even know which way to go. I think we are lucky that Nick seems to be one of the milder cases - he's been able to function in school and do well, even if he hasn't been able to make friends. But right now, that doesn't make it any easier. In many ways, dealing with Down Syndrome is sooo much easier. I have a whole support group, and there is so much more concrete information about DS. There is at least a kind of road map we can follow. With Aspergers, I feel like I'm in the middle of nowhere without a GPS to guide me.

Also this week, we finally had the speech eval on Elijah. It went exactly as I expected. For a four year old, he doesn't have the articulation he should, and his deficits are enough to qualify him for speech services through the school. It's not news to us. We expected this outcome, and honestly, it really isn't worrisome to me. Speech articulation is a whole lot easier to deal with than either Aspergers or Down Syndrome. Even with his deficits, Elijah already speaks much better than Gabe, so it's really small potatoes, in the grand scheme of things.

But then it hits me, the very real possibility of having three kids all with IEPs. I'm an old pro at it, but still. Three kids on IEPs. I hate having to deal with just one. The thought of three is overwhelming to me right now. I know, on an intellectual level, this is nothing. My kids need some support and I *know* how to get it for them, and how to work with them. This week, my friend had to deal with the terror of having a child with a brain tumor. I can't even imagine what this week has been like for her, and I feel a bit guilty that I am even the slightest bit upset over my kids - my funny, energetic, loving, HEALTHY kids. Teddy is helping me keep it in perspective. We are all healthy and together and that's the only thing that matters. All that other stuff is small potatoes. It's just that sometimes, too many small potatoes make me feel like . . . how I'm feeling today.