I Can't Believe We Are Still Having This Conversation

A couple of weeks ago, Ann Coulter used the R-word to describe half the country.  As far Ms. Coulter goes, this is hardly shocking.  We live in a country where hate sells and she is the number one peddler of the commodity.  She should apologize, of course, to the millions in the special needs community, who are harmed by that word daily, but she won't.  Apologies are for grownups  and decent human beings. Ann is neither, so I'm not going to waste my time asking.

No, I'm more interested in the thousands of regular people out there chatting about this (or anything else) on Facebook and in comments on blogs like this one.  What shocks me is how easy it is for people to continue to use this word, and to DEFEND using it, knowing fully the pain it causes others.  I have heard every lazy excuse there is, none of which has any validity.  I have had people quote the dictionary to me, as if I, a college educated woman,  professional educator by trade and special needs advocate by way of my children, somehow did not know that the technical definition of the word is "slow."  Yes, we know what the definition is, thankyouverymuch.  I have had people screech "First Amendment!" as if what we have been asking is not simple consideration, and instead a full constitutional amendment banning the use of the word.   Yes, you have a fully protected right to use whatever words you may choose.  We are not trying to outlaw anything.  We are merely asking that you consider, for the briefest moment, the effect of the words you choose. No need to hide behind the Bill of Rights.  The most offensive defense I've seen, however, is the one that claims if the intent of the person using the word was "innocent", then the person who is hurt by the word is the one at fault for allowing their feelings to give the word power.

So, let's get real.  Here is a fact, and the only fact that really matters.  The word "retard" and every variation in use (including retarded, libtard, conservatard . . .) is hurtful.  It is a cruel word that causes pain to human beings.  Period.  Nothing else matters.  If you use that word, whether to be self-deprecating or otherwise, you have and will HURT people.  That's it.  Your intimate knowledge of Mr. Webster's dictionary does not absolve you.  Your constitutional rights do not make it less cruel.  Yes, you have the absolute right to continue to use that word.  You DO NOT, however, have the right to tell others that their feelings are invalid.  You DO NOT have the right to dictate how others feel or how they react.  So, if you feel your right to use cruel language is more important than the feelings of those around you, go ahead and use it.   But do the rest of us a favor and own it.  Truly, OWN. IT.  Don't cower behind the Constitution or a dictionary.  Speak the truth.  Tell the world "I use this word because the feelings of others do not matter to me.  I will use this word because I don't care about those it hurts."  You'll still be an ass, but at least you'll be an honest one, and that's one better than Ann Coulter.

So Let's Talk about "Awareness"

So October is upon us, with its cooler days and more colorful neighborhoods, pumpkin scented candles and apples baking in the oven, leaf piles and pumpkin patches.  It also means endless reminders to raise our awareness.  October is breast cancer awareness month, and domestic violence awareness month, and pregnancy loss & infant loss awareness month, and Down syndrome awareness month.  It is "awareness" month for so many things, I feel like the term awareness is losing its meaning.  What is it we are hoping to accomplish with all this awareness anyway?  Is there anyone out there who isn't aware of what breast cancer is, or how many woman are affected?  One of my best friends from high school has been fighting that battle just this year, and she is not the first, nor will she be the last friend I know to fight it.  We are so inundated with pink everywhere, I find it hard to believe there is anyone who does not know how they are supposed to check for it.  Haven't we moved beyond "awareness"?  Similarly, I know far too many people who have suffered pregnancy loss.  It's so pervasive, I can name more people who have suffered a loss than who haven't. Is awareness the problem?  I don't think so.  Of course, the most personal to me is Down Syndrome  awareness, and again I can't help but think awareness isn't the problem.  Everyone is aware of Down syndrome.  So what are we trying to do by reminding people?  "It's Down syndrome awareness month. Just thought you should know." How does that improve life for my son?

It's time to move beyond awareness.  I don't want people to be aware of my son. Awareness doesn't change anything.  People are aware, yet they still assume, avoid,  pity him, and by extension, me.  I do not want people to make assumptions about, or feel sorry for my son. I want people to know my son.  I want people to respect my son. I want people to accept my son.   They can't do that unless they experience my son.  How can they do that?  When you go to the park with your children, and they play with other kids, encourage them to play with my son too.  When my son engages your children, don't move them away.  Do you strike up conversations with other moms?  Don't avoid the mom whose kid has Down syndrome.  Let your kids ask questions.  We love to talk about our kids, too.  Most importantly, don't think that the extra chromosome makes my son so different.  It doesn't.  In all the ways that matter, our kids are the same.  My son can sing and dance, and read books.  He can be sweet and loving and kind, but he can also be angry and stubborn too.  He plays baseball and performs on stage.  His is a life full of wondrous possibility, just like all kids.  If you are so inclined, find out when and where the nearest Buddy Walk is and show up!  Move beyond awareness.  Educate, accept, include, celebrate!  Eventually we can move past all these "awareness" labels and October can become "Down Syndrome Celebration Month" or "Breast Cancer Victory Month."  At least, that's my goal.

I Hate Making These Kinds of Decisions

Next Wednesday, both Elijah and Nick have their "graduation" ceremonies.  Nick is graduating from 5th grade, EJ from Kindergarten. At the exact same time.  I realize that some people consider a kindergarten graduation to be a bit over the top, but EJ really struggled this year and made some huge gains.  I also know his teacher very well, and I know the amount of effort she has put into making it a very special day for both kids and parents.  Fifth grade is more of a milestone, and the ceremony will be more formal, less sentimental, I assume.  Like Elijah, Nicholas also overcame much this year.  It was his first and only year at this school, so there aren't the years-long friendship bonds other kids have.  He has grown so much and pushed himself in ways he never has before.  This was a huge year for him, and I want to celebrate him.


Unfortunately,  I can't be at both, so Robert and I will tag team, and video. I am struggling with who gets to go to which event, so I thought I would include the boys in the discussion.  If I got lucky, one would have a preference for Mom and the other a preference for Dad, and I would therefore be absolved of the mom-guilt. Silly mom.  When is it ever that easy? We explained the situation and asked for their thoughts.  Elijah immediately squealed "I want Mommy!" and Nick responded to that with "Heeeeyyyyyyyy!  I want Mom!"   Here is where I have to give Elijah credit.  That kids KNOWS his emotional manipulation and he wields it mercilessly. Without so much as a pause, he immediately began to sing to me a song I can only assume is on the program for next week's ceremony. "I think you're wonderful! As wonderful can be.  I think you're wonderful!"   Wait.  It gets better. He paused, looked at me with that "how-can-you-possibly-say-no-to-me" smile and said "Why aren't you crying?  You're supposed to cry." Nick's response?  "Ok, FINE!  You can have mom."  He didn't say it graciously.  Robert was right there for the whole conversation, by the way.  Poor Daddy.  I tried working the whole "you don't want to hurt Daddy's feelings, do you?" angle.  Apparently, they have no problem with that.  Must be a guy thing.  Maybe if Robert let them see him cry . . .


So I guess it's settled.  Kind of.  I still feel the mom-guilt. So now the question is "can I trust Robert to video it?  And who can I ask to take pictures for me since the only good camera will be with me?  Now taking volunteers.

Autism Awareness Day; Celebrate your child! Or not.

Maybe I am living in a bubble.  Maybe I just choose myopia.  Maybe I have enough conflict in other areas, that I choose to ignore conflict I don't want to see.  I am really very sad and disappointed that, in reading through the myriad posts and links and articles today, I am finding so much conflict and anger and dissention in the Autism community.  I hadn't realized there was such a groundswell of opposition to Autism Speaks or that the idea of "celebrating" our kids could be so offensive to some in the Autism community.  I know that the roads we walk are not always the same.  I know Autism is different from Down Syndrome in that regard, that there is so much greater variance among those born with it.  I do know my son was born with it.  Maybe I would feel differently if he were on the other end of the spectrum, and not high functioning.  Maybe I would be angry, and believe with my whole heart that something was done to him.  But that is not my path.  My path is what my path is, and I celebrate my son because I love him exactly how he is.  I hurt when he hurts and wish he didn't have to struggle, but doesn't every parent experience that to some degree?  Does anyone's child, neurotypical or not, have an easy, challenge-free life?


My path includes Autism and Down Syndrome and medical fragility.  Vaccines did not cause my son's condition, but what if it had? If I had been told you can vaccinate your son, but he will forever walk this path as a result?  What if, knowing that I could save him, I risk the life of my other child?  My middle son is a veteran of four different hospitals, his early years defined by medical challenges and immune deficiencies. So maybe I could have saved one son from challenges and heartbreak, but I would have put another son in grave danger at the same time.  So, I admittedly have a very hard time empathizing with the more vociferous anti-vaccine voices out there. As alone as the special needs path can sometimes feel, the truth is that we are all interconnected, and a decision like the one to vaccine or not is not made in a vacuum, and it has real word consequences beyond our own bubbles.


Of course, I have a husband who grew up with all the same challenges as my oldest son, but no diagnosis, so when I hear that the rate of Autism is now 1 in 88, my mind doesn't automatically look for a villain in the form of needles.  I think that makes sense, because our generation had so many kids go without a diagnosis.  They have been there all along.  We just didn't see them.  Which is why I choose to celebrate, instead of being angry.  Because so may people now can look at my boys, all three of my amazing, wonderfully non-typical, special needs boys, and SEE them for who they are.  If I could take away one son's Autism, or the other's extra chromosomes, I might make their life easier, but I would lose the very special things I love about them, and they would not be richer for it.  So I will celebrate their differences, and I will celebrate their struggles, and I will celebrate the very amazing victories bourne of those struggles.  Our path may not be well paved and easy to follow, but it is adorned with amazing grace and beauty, and I wouldn't want to be anywhere else.

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.  

Pity Party, Table for One

Got the notification for Elijah's IEP meeting.  I noticed, among the usual attendees, the speech therapist was added.  Elijah originally qualified for SpEd because of speech, so it's not a shock to see her there, but he had not needed speech services this year.  He had continued in SpEd because other learning issues had presented themselves.  It seems now that speech is once again an issue.  No big deal really.  His speech is clear enough that anyone can understand him, but her name on the notice compelled me to have a quick conversation with his teacher after school today.  That conversation only solidified something I've known for awhile, yet suddenly is more than I want to handle at the moment.  Elijah isn't just a bit behind.  His challenges aren't going to right themselves with just a bit more time. Something in his brain isn't wired the way a typical learner's brain is wired, and we can't just "re-wire' him.


I KNOW this is small potatoes.  I KNOW how lucky I am that he is healthy, and active and I KNOW how blessed we are. I AM so grateful for him, and I DON'T want to change anything about him, or his brothers. Well, ok, I admit it would be nice if his sound system had a setting other than loud and "omigosh, the neighbors are going to think I'm abusing him" - but other than that, I don't want to change anything about any of my kids.  I just wish that one of them didn't have to look forward to a path filled with challenges.  I wish just one of my kids could have a typical learning experience.  I wish things didn't have to be so much harder for them.


I know I need to get over myself, quit whining and put on my big girl panties and all that.  Yada yada yada. I will.  Later today, with a nice bottle of wine and my fellow Special Needs Moms. But for now, I just don't have the energy or the inclination to find the silver lining, or bask in the joy of life lessons, and pretend that life is always all rainbows and unicorns.  Sometimes, being the mom of three kids with special needs just plain sucks.  Today is one of those days.  Tomorrow will be better.  Tomorrow I get to spend the day with 100 other parents walking my same journey and I will find strength in our shared challenges. But for today, I just need to vent.  And have a glass of wine.

To All My Valentines

On this Valentines Day I want to send out a huge "I LOVE YOU AND I AM SO THANKFUL FOR YOU!"  I am sending this to my Hunny, of course, who loves me and encourages me everyday, and to our beautiful Wild Things, who constantly steal my heart in new and surprising ways.  That these four people are my Valentines goes without saying.  Today, I want to shout out to all of my other Valentines:  To every friend who has ever lent me a shoulder upon which I've cried, or shared a bottle of wine along with a whine,  every friend who has laughed with me, and taken adventures with me, who have been mad at me and forgiven me,   I LOVE YOU!  I know for some of us, we may not talk every day, and miles may prevent our regular companionship, but I know that when life throws me a curve ball, if I called at 3am and said  "I need you" I know you would be there.  And I hope you know I will always do the same.  Valentine's Day is a day to remind the ones you love, that they are the ones you love. I am so blessed to have a long list of Valentines, and I hope you all know how special you are to me. I LOVE YOU, MY VALENTINES!

Hey Ferb! I Know What We're Gonna Do Today!

I promised to come back with pics from the Phineas and Ferb Party, so here I am.  I think it turned out rather well, for a theme that was incredibly hard to find party supplies for.  I went to our local bakery, our local cake maker's supply store, Party City, Michael' and no one had any Phineas and Ferb themed supplies.  I finally found the plates/napkins/table covers at Affordable Treasures, which is why I'm going there first from now on.  I paired orange & blue streamers (Phineas) and purple & yellow (Ferb) and bought a bazillion ballons in the same colors for decorations.  But I was still left without a plan for a cake.  I was going to attempt to make a Perry the Platypus cake myself, but the day before, my friend Charlie offered to help.  Charlie is an amazing cake artist.  So the night before I baked a sheet cake, then the morning of the party, Charlie transformed it into a teal platypus.

Pretty cool, eh?  I planned three activities for the kids, based on the show.  The first was "The Shrink-inator" in honor of Dr. Doofenschmirtz, the bumbling evil scientist who is the nemesis of Agent P, AKA Perry the Platypus.  I bought sheets of Shrinky Dink plastic, traced multiples of the main characters and cut them out in circle shapes.  Then I left out permanent ink markers and let the kids color them and then we shrunk them in the oven.

 I made sure to use a hole punch before I baked them, so the kids can make neckalces out of them, or use them as ornaments.  The next game was "Where's Perry?" a question asked at the beginning of every show by Phineas.  I printed out a couple different pictures of Perry the Platypus as a secret agent, cut them out, laminated them and put them on tongue depressor sticks.  Then I taped a prize on the back of each.  We "hid" them all over the back yard, some more hidden than others.  They got to keep the Perry puppets and the prize and put them in their bag.

 

The last game was the most fun, at least from the perspective of a person viewing the chaos.  That last game was "You're Busted!" in honor of Candace, the big sister who is always trying to bust her brothers. I inserted different small sticker sheets into balloons before inflating them, and I had these balloons kept aside until it was time for the game.  I cleaned out the playroom of any decorative balloons, then dumped the game balloons all over the floor.  The object was to pop the balloons by sitting on them.  The key to the fun was underinflating the balloons.  So the kids mostly bounced on the balloons, as they didn't pop right away, and some needed the extra weight of an adult foot.

Lastly, here is a picture of the birthday boy, opening presents and wearing his Phineas hat.  He also got a Ferb hat, which is just as awesome.  Both hats were made by my girlfriend Jen, who happens to be married to Charlie, the cake artist.  Yeah, Mr. and Mrs. Martha Stewart.  Only nicer.  =)

 

If you are looking for unique and fun hats, she has started a business and you can find her on Facebook.  Her page is called Pineapples N' Coconuts.  She is also an amazing professional photographer, if anyone in the area is looking for one.  You can find her page on Facebook as well, Jen Webster Photography.  Check out the newborn photos.  If I weren't so old, I'd have another baby just so I can have her do the baby pictures.

So another birthday party under my belt. On to Valentine's Day! 

Heartbroken

Today is Elijah's birthday, and he is turning 6!  I am so happy for my little boy who is growing up so fast.  He is such a sweet little man.  We had a little celebration for him at school, then I came home, where Gabriel and I baked a cake that is now in the oven.  Presents are wrapped and we are going to have a great day.

But I have been fighting tears all morning.  Actually got to cry on Hunny's shoulder a bit, but apparently not enough, because tears are flowing again as I write this.  Why, one may ask, would a mom be sad on the occasion of her son's birthday?  Well, yesterday at his birthday party, (an event for which I'll post pics later!), I was confronted with a reality I have always known was coming, and was nonetheless utterly unprepared for.  While confirming an upcoming playdate, one of Elijah's friends rejected his brother.  He very clearly expressed his desire that Gabe not be included.  He didn't do it maliciously, he wasn't trying to be mean, and if Gabe had heard, he wouldn't have realized it.  But I did.  And it hurts.  Enough that I'm crying the day after.

One of the hardest parts of choosing to homeschool, and sticking with it, is knowing that he doesn't get the daily bonding and friendship-building that comes with traditional school.  Yeah, we have him involved in other activities so he gets socialization.  But it's not the same as going to school everyday and seeing the same friends everyday.  I guess I was secretly hoping that as Elijah started school, and his classmates were exposed to Gabriel, that, somehow, they would become Gabriel's friends, too. Maybe they will.  But the sting of that first real rejection really stings.  And I'm left questioning the wisdom of my choices.  Is the academic advantages of homeschooling worth the cost of relationships?  I'm not so sure today.  I look into his beautiful face and wonder "What is the right thing to do?"

He just finished his writing assignment, and crawled onto my lap and is cuddling me as I type.  God I love this boy!  I guess he is telling me it's ok. Really, how can I look into this face and not know everything is going to be ok:

  So, I'll leave this here and go take the cake out of the oven and celebrate my youngest, and save the tears for the next time. 

And to those who would say I'm whining about my choices, all I can say "eff you."  Sometimes having kids with special needs is extremely hard, and sometimes it hurts deeply.  It's okay for me to say so.  If you don't get that, then the problem is with you.

Happy 2012. Here Are My Resolutions. More or Less.

This year I resolve to:
 Read more, watch less. Play more, worry less. Be more silly, less serious. Spend more time cuddling and less time online (no offense to my Facebook friends). Experiment more, fear less. Cry more happy tears, fewer sad ones. Have more patience and less anger. Paint more, scrapbook more, create more. Critique less (myself in particular). Write more, stress less.  Hug and kiss more, yell less. Move more, sit less.  Give more, take less.  Love more.