Spread the Word to End the Word

I LOVE that Spread the Word to End the Word Day falls on my Birthday!  March 2nd.  I just wanted to share a few things about the "R" Word.  I'm very uncomfortable saying the actual word even if it's to educate.  In the same way, you will never hear me say the "N" word or the "F" word.  Now, with the "R" word, this hasn't always been the case.  I remember making jokes...I cringe when I think of a few that have come out of my mouth when I was young.  Up until Si was born I might not have said the R Word but I might have thought people were a little too sensitive and using it at certain times was maybe not appropriate, but no big deal.

It didn't take long for that word to send chills up my spine when I heard it... but it didn't actually hurt me until about 6 months ago.  I'm sharing this to show you how "innocently" it was said, but the hurt it caused me was profound.

Seth was playing Upwards soccer and we had spent many evenings and mornings playing and practicing soccer with different families.  One of the families had been especially fun because they had another boy Si's size and Ian had even spent time playing with them both.  They were a nice family and I could tell the mom was making an effort to train this little guy about sharing and also being patient with other kids.  Well, on the second to last soccer game the grandparents were there.  For some reason I could tell this really escalated the parent's stress level.  They were both competitive...which I'm no stranger to. :)  The boy that was playing soccer was very good most days and a very aggressive player.  But he was also 4 years old... so he would become distracted like most of the players.  On this day, he may or may not have been a little more distracted than other days but the parents were obviously disappointed about the way he was performing in front of the grandparents.  They were making excused for him.  They were yelling.  I thought it was a little sad but I've let my competitive spirit get the best of me also.

Then they said it.

"He's acting like a RETARD!  Why is he being SO RETARDED!"

I mentioned my competitive spirit right?  So, since the day it was confirmed that Silas had Down Syndrome, I have been researching the Special Olympics and sports programs.  I love sports and I've always encouraged my kids in anything they showed interest in and I felt determined to do the same for Si no matter what.  He will not be limited and I had been looking forward to the day he could sign up for soccer.  So the very SECOND those sentences came out of their mouth, I froze.  My heart sank.  My heart felt like it stopped.  I wanted to cry...I did cry.. well I'm teary as I'm writing even.  It hurt so bad.  They didn't say this to Si.  They didn't have him even in their thoughts at any time that day.  But I heard their disappointment, their frustration and their anger they had about their own son's behavior.  All of that equalled their statement.   Does that make sense?  All those feelings that they were showing and feeling... they put it all on my Silas.  The mother said "retarded", what my heart heard was, her turning straight to Silas and saying... You are retarded, you aren't good enough to play with these normal kids, why are you here.  She absolutely did not say that nor did she even feel or think that at any time.  But.... words have impact and words hurt.  Words hurt me that instant.

I know people usually use the word more casually.  And I don't hurt when I hear it usually... not like that.  But I do cringe.  I cringe but I know that in most cases the people aren't trying to make you uncomfortable.  But the point is... that SILAS IS NOT A JOKE.  HE IS NOT YOUR OFF THE CUFF REMARK.  He is my HEART.  And everyone out there that has some sort of intellectual disability is someone's HEART.   

No one has Spread the Word to End the Word like my brother.  This has a special meaning to me.  When I was 8 and found out that he was gay, I went through this same process with he "F" word.  That was very frequently used 30 years ago and I cringed the same way and I hurt the same way.  To see and hear him stand up for Silas makes my soul so happy.  I think God used his life to make me a little more compassionate and feeling person.  And I know God is using Silas to do the same thing for him and for most everyone that meets Si.  My brother would be the first to tell you that he used the "R" word flippantly many times.  But he was also the FASTEST person to stop saying it.  I love him for that.  

I didn't say anything to the family that day.  I hope they thought about it later and regretted it and maybe learned from it.  I maybe need to learn to be a little more assertive.  But for now, I feel like my best way of educating is getting Si out there and into plain sight.  I'll sign him up for Soccer in a year. I'll sign him up for Taekwondo.  He'll play with he Miracle league.  But he must also play and be involved in sports with kids without an intellectual disability...because they HAVE to know him.  The only way people will learn is when they meet Si and others and know that they are just like them.  

With my luck, Si will hate sports.  Oh well, I'll love him anyway.  

SPREAD THE WORD TO END THE WORD

12? Really?

Time seems to creep as a child but I'm positive that it speeds up, immediately, when you have your own child.  On one hand, I can't believe it's been 12 years since I've started being a mom and Ian was born.... on the other hand, I can't seem to remember not being a mom.

I didn't always want kids.  It took 7 years of marriage for me to decide Rob and I should give it a go and begin to enlarge our family.  I didn't think it would be that easy... I was surrounded by several people that I knew and loved and they had been struggling with infertility for years.  I just assumed that I would also... or that it would at least take few months.  That was not the way it happened.  The very first month ... I even thought we might like to try this thing out... I was pregnant.  Things went perfectly.  The second ultrasound brought questions and worries of trouble with his heart and the doctor said that this was sometimes a sign of a baby with down syndrome.  That was the first time Rob and I had a discussion about Down Syndrome.  Weird.  9 years later we would have Si.  It seems fitting that Ian and Si would share the same birthday month.

Ian spent his 9th birthday stressed because Silas was still in the hospital.  It was hard to celebrate Ian while Si was in the NICU.  But Ian did it.  It was like a gift when Si came home only a day or 2 later. It's also fitting that Si should resemble Ian so much.  When I look back at baby pictures of Ian, he looks so much like Silas.  I remember being a little worried that Si would always just look like the one in our family with Down Syndrome....and I remember reading on the internet that "don't worry, babies do resemble their family".  Well, Si looks like Ian and better than that..... he, thankfully, has Ian's temperament!  Ian was always a sweet, laid back, friendly little guy.  He smiled and waved as we strolled past people.  He has always found it easy to talk to just about anyone.

  


This guy changed our life.  Really...what did we even do before we had kids?  I don't know... well, sleep...I did sleep a lot more.  Anyway, I love this guy with my whole heart.  My love for him grew every year and with every baby.  I remember Ian comforting me when I miscarried the first time.  He rubbed my back and all I could do was cry.  His heart is full of compassion.  He is so much like his dad and I'm so thankful for that.    He seems to know how I am feeling when he walks into the room with me... that has saved his siblings lives' on more than one occasion.  :)  Hopefully he'll keep taking care of this sister and brothers....they are crazy.

As he starts to become a man, I pray that he never looses that compassionate heart and his discernment with others.  Happy Birthday, Eeyore.  (he has never enjoyed that nickname....not one time)

Seth... Now What?

Me: Seth, what do you want to do now that Si will be at school on Tuesdays and Thursday mornings?

Seth:  I don't know... date?

Another new beginning...

When Si was officially diagnosed with Down Syndrome, one of the first questions they asked me was "would you like the number of an Early Intervention group?"  This was an easy answer because I was positive I needed all the help I could get in giving Silas the best and brightest start in his life and education.  This was the best "Yes" I have given since his birth.  He has been participating in Early Intervention since he was 4 weeks old.  We were fortunate enough to have no turnover with his Occupational Therapist and his Speech Pathologist.  Jessica (OT) has been with us since the beginning.  And Jennifer (SLP) was with us since he we around 1 year.  Now, this is a strange thing... they were both in and out of our house for 3 years... typically twice a month.  So, I would say I am "friends" with both of them.  But they really end up feeling more like family.  I've never met their family, though I know of them.  I've never been to their house, of course... but I know they have dogs that are like family to them.  I know where they live... not in a creepy way.  They know many things about me, but far from everything.  They know the important things.  They know Si.  They know he won't always do what we know he is perfectly capable of doing.  They know Si has brothers and a sister that love him more than words could explain and are a big reason he has accomplished what he has. They know he's not quite as spoiled as he could be.  They know a few more things, but these are some important things that are important and difficult to truly see to the average person.  I guess what they do know is enough to have formed this bond that feels so unnatural to break.


Silas and Jessica  (I forgot to get my picture with Si and Jennifer.)

See, they both came and left my house this week for the last time.  I can't really explain the dread that I have been feeling about this for several months... really dreading for about a year.  I can't really explain why I shed tears as they drove away or why I'm crying as I write this.  It boggles my mind how, really, almost strangers can end up being such an important part of mine and Silas's life.  Now I know they aren't strangers, but I've never cried over my kids leaving a teacher at school.... let's face it... I don't really cry over anyone....give or take a best friend moving.  It is just amazing to me how Si makes me feel.  I'm not talking about loving him or being proud of him or how I feel when he smiles.  I'm talking about how he makes me feel about others.  Jessica and Jennifer were not just people that helped my baby boy lift his head, sit up, crawl, communicate or walk...in fact, they usually were not near him when he did any of those things.  But they showed us how to do it.  Beyond that, they were, really, my therapists.  They managed my stress, my guilt, my struggles.  They shared my joys, Si's accomplishments, his silliness.  Whether they meant to or not. So these women that would come and go from my house 2 hours a month shared Silas with me.  I suppose that's why I'm so sad.  They came focused on one of my five most beloved humans.  They sometimes focused on 2 or 3 of them.  I know Silas was 1 of, who knows how many, kids they worked with a day, but they were OUR family.  They will be missed and I hope they know how important they are to the families that they service.

Now we are starting over.... entering "The Public School System"!  IEP MEETINGS!  This was scary to me.  This is still scary to me.   First, I think it was the fact that my kids will go to different schools (I'll save that discussion for another day) Second, it's what's above, we are leaving our comfort....our people that already know Silas.  Then there is,  going into a place that, in the community of special needs parents or groups, is not typically given rave reviews.  All these factors have kind of made me a little bit of a wreck for a few months now.

But we are starting over... this means, more likely than not, that I will be writing this post again about the people that are about to enter our life.  It won't be the same, because we won't have them in our own home.  But they will effect Si in a big way.  Their goals for him are already exciting.  I'm slowly but surely feeling my fears subside and being replaced with optimism and excitement.  Si will be spending 3 days a week at the preschool and all of that time will have a Speech pathologist in his classroom.  He will be pulled away for one on one and group therapy.  He will be so much more immersed is what he needs right now.  This will be (don't check my math) at least 80% more therapy a month than he was already getting!  I've met all the people he will be working with and they are sweet and experienced teachers.  I've even heard that they are the best at what they do.  So... this is good.  I'll have to find my own therapists for me I guess....instead of mooching off of Si's. :)

I'm praying for both of us as we transition to this new phase in his education and development.  Si is handling it much better than I am so far.  But with every prayer and visit to his new school, I become more confident.  I know God has great things planned for Si and I can not wait to see it... and I can't wait to hear Si tell me the plan. :)

Middle of the Night.... with Seth.

Me:  (Sleeping..... almost soundly)

Seth: (Crawls into bed next to me)

Me: (roll over to give him room  then turn to glance at him)

Seth: (wide eyed)....... I had a bad dream about Evil Papaw.

Me:  (smile and go to sleep)

Conversation with Seth.... Over cereal....

Seth: Mom...

Me: yes?

Seth: always remember... Keep God number 1...

Me: I try to always remember that. 

Seth: and try to remember to always be jumble. 

Me: ?  ... Humble?

Seth:  yes, humble. 

Me: that's good advice. What does humble mean?

Seth: it means to put God first and think of yourself last. 

Me:  that's smart. Thank you for that reminder. 

Drawings by Seth...

"It's kind of like a half dog, half mouse."