Who I Am

March 20, 2013

Tomorrow is World Down Syndrome Day!  Because it's 3/21 and DS comes from having 3 of the 21st chromosome.  It's the perfect day of the year to bring awareness, don't you think?

The International Down Syndrome Coalition has a campaign going...a Blog Fest, if you will.  Calling all bloggers!  Tell us about you and Down syndrome!

Me and Lea, at a castle in Germany!

I've been thinking about it for a week.  I could write a book (or 2) on the topic!  So I decided to narrow it down and focus on Who I Am Now.  Because it's different than who I was when Lea was born, 18 years ago.  Or who I was when she was in Early Intervention, starting public school, starting homeschooling, joining Special Olympics teams.

Who I was on Oct. 15, 1994

Who I Was comes into play an awful lot, though!  My inner Control Freak is having a hard time.  (Who am I kidding?  My Control Freak was never "inner."  She is always right on the outside!)  Since the minute Lea was born, my Control Freak took over.  Let's understand something here.  Being a Control Freak has negative connotations, but it's not all bad!  It meant I got her the best doctors from the get-go!  Pediatricians, geneticist, cardiologist, ophthalmologist, endocrinologist, and a very scary (but turned out good!) visit to a hematologist/oncologist.  It meant I started fighting for her rights as soon as I realized I needed to...at 3 weeks old, when the local school district was dragging their feet on getting her started with her therapies.  That Control Freak was with me the whole way through her public school years, enjoying the many good things that came of it, but Freaking Out at the bad.  And finally, that Control Freak convinced me I could do a better job at home!  (Oh, and a big shout out to God, who gave me that idea!  Woo hoo, thanks, God!)

So Lea graduated from our little homeschool last summer.  Look at her now!

Daddy, Lainie, Lea and Mommy

Isn't that fabulous?  She is done, she is 18!  Wait....(insert that record scratching noise here)....done?  My Control Freak doesn't like that!  For the past 18 years, I was in charge of her EVERYTHING.  It's ok...take a deep breath, I tell my Control Freak.  All of that Control Freakishness was done for the good of the kids.  You still need to do what's best for her!  What's best for her is...letting go.  WHAT?  Yes, you know it's true.  I DO?  Yes.  *sigh* Yeah, you're right.

First step was summer camp.  Away from home for a week!  It was a camp for people with special needs.  They have an excellent staff!  Control Freak: Oh yeah?  Well, she can't eat gluten and milk products.  They will never handle that!  (Which they did, with perfection!)  What if they....What if they don't....Stop it!  She will be fine.  She will not just be fine, she will thrive!  Look here, Control Freak!!

Enjoying the sprinkler at Skyline Camp

See?  Not only did they take great care of her, but they took tons of pictures so me and my Control Freak could see her every day!

But wait, what's this?  She is an official ADULT now?  We have a great program through our public schools (gasp!) that can help her learn to be independent.  (Starting to hyperventilate)  It's ok...they give us parents a lot of information and a say in what she does there.  She is having a terrific time and learning tons!  (Feeling a little calmer.)

But wait, what's this?  As an adult, she is entitled to some disability services from the government.  Oh boy, here we go.  (Can you say paperwork?)  In comes an agency to help her get Medicaid, Social Security and  respite services.  (Because we BOTH need a break from each other!)  But this agency does not represent us.  They represent HER.  They work in her best interest.  But, says Control Freak, what about me?  Don't I get a say in this?  Yes, your opinion matters.  But bottom line is they are here to protect and help Lea.  Lea...who is learning to make her own decisions.  (Her OWN decisions?  ACK!!!)  Yes, Mama, she can do it!  Look who she picked as her respite caregiver!

Claudine...one of the sweetest women on earth!  Who cares about Lea just as much as I do!

Oh, OK.  Hmmm, so Lea gets to have sleepovers, go to fun places and have a BFF?  And I don't have to worry or control anything?  Yep.  This is getting good.

So then Who I Am is a recovering Control Freak?  No.  I still have 15 year old Lainie to worry about!

LOL, it's just a prop cigarette!  But it highlights the dangers of giving up my Control Freak :)

Who I Am Now is the mother of an adult and an almost-adult.  I can see the benefits of being involved in every aspect of their lives.  I can also see that my little birdies need to spread their wings and fly!  I certainly made some mistakes (thanks to you, Control Freak.)  But being there for them along the way has helped me give them the tools they need to be free.  Who I Am Now is a Mama watching her babies grow up.  And loving it.

Parisians :)

What The R Word Means To Me

March 6, 2013

Today is the annual day of awareness about the R word.  "Spread the word to end the word," they say.

The R word...retarded, retard.  I can barely write it.  It hurts!  Let me tell you why.

Here is my beautiful daughter, Lea.

In Paris, Feb. 2013

Lea has Down syndrome.  Down syndrome comes with many challenges, one of which is her cognitive abilities.  Yes, Lea is, medically speaking, retarded.  Actually, even medically speaking, this is no longer the correct term.  It used to just mean slow.  But over the years, people have misused the term and twisted it into something ugly.

Before you argue about this, let me assure you I have heard all of the excuses, the justifications.  "I don't mean YOUR daughter!"  "I would NEVER call Lea that!"  "I don't mean a person, I just mean something is dumb."  "It's not even offensive."  "I won't say it in front of you!"

You are not getting the point.  Of course you won't call Lea the R word!  But using it in any form is hurtful to ME.  Whether or not you are calling my daughter the R word, your use of it is perpetuating a very bad stereotype of her.  You are right about one thing...it is not offensive to Lea.  That is because Lea is forgiving. Lea is kind.  Lea would not be hurt by that word.  But I am.  I AM.  Isn't THAT enough for you to stop saying it?  I may be standing behind you in line at the grocery store.  I may be sitting near you in a restaurant. I may be shopping in your store.  I am not asking you to stop saying the word around me.  I am asking you to stop saying the word.  Period.

You never know who is listening.

Baby Lea, October 15, 1994

I wrote this post 2 years ago, on Lea's Sweet Sixteen birthday!  Now she is 18!  I am so proud of all that she has accomplished!  She is a Special Olympian, an expert horsewoman, a graduate, a young woman.  Here is the story of her birth.

16 years ago today, it happened.  A bit earlier than I thought, by 3 weeks.  But finally the baby was here.  It's a girl! they said.  We spent about 2 hours with her before they told me to get a few hours of sleep.  They whisked my baby away.

In the morning, I was awakened by our new pediatrician.  She told me Lea had a "dusky spell" while they fed her.  She said to call my husband so we could discuss the situation.  Brad arrived quickly.  The doctor then told us she suspected Down syndrome.  She said "heart problem."  She said "mentally retarded."  She said we need a geneticist to know for sure.  We need a cardiologist.  Then she did the best thing she could have done.  She sat there quietly while we cried.  When we were done, she asked if we had any questions.  She explained Down syndrome.  She said Lea would lead a great life with some therapy.  She said we were blessed. 

Still, I was grieving the loss of the baby I thought I was having!  I was grieving the loss of PERFECTION.

All of Lea's problems were swirling around my head.  I did not call one person on my list to tell them she was born.  I could not say the words "Down syndrome" without sobbing uncontrollably.  They moved Lea to the special care nursery.  They wouldn't let us in for hours as she was having testing done.

Finally, the time came.  We were gowned up and washed down.  My fear of everything about Down syndrome and heart problems had me a bundle of nerves.  Then, I saw her.  She had an IV in her head.  She was the sweetest, most precious thing I could imagine!  I held her for the first time since all of the bad news.  And then I REALLY saw her.  And guess what??  Perfection!  The nurse took this picture at the moment I realized she WAS perfect.  God gave her to us for a reason and she would be ok!  We were a family now, and we would all be ok.

Happy Sweet Sixteen to our perfect blessing, Lea Renee!

Homeschooling's Deep Dark Secret

No one ever told me, before we started homeschooling, about the dark side of it.  "One on one education" they said.  "Learn at their own pace" they said.  But why didn't anyone ever tell me THIS truth?

"You will love this time spent with your children so much that it will hurt when they move on."

When we started our homeschooling journey in Feb. '07, it was just me and Lea.  She was 13.  We laid on my bed reading "Little House" books.  We went to the library.  We did all kinds of work in workbooks and such.  Then Lainie came home after finishing 4th grade.  The 3 of us would sit cuddled up on the couch in our jammies with blankets on, as I read aloud from some amazing books.  They took classes all over the place with other homeschoolers.  They made some great friends (it's true!  Homeschoolers socialize!)

But now it's all changing.  Lea is almost 18.  She graduated from homeschooling.  She graduated from ME.

She just started her post-high school program yesterday.  I dropped her off in a classroom full of people with special needs, aged 17 to 26.  She will learn life skills, job skills, about money, about independence.  She walked right into that brand new classroom like she owned the place!  She didn't even say goodbye.  Meanwhile I am hanging outside the doorway talking to the teacher.  Trying to come up with some more questions so I can hang out a little longer.  I walked away with tears in my eyes.

Yes, Lea is ready for this step.  We certainly need a break from each other, too!  And yet, I am sad.  She is my firstborn, my lovely, kind, caring, funny child.  I will miss her belly laughs.  I will miss seeing her smile all day.  I will miss her and Lainie sitting at the table together.

Lainie is almost 15 and is growing up and moving on, too.  She seems to be away from home a lot.  She is quite in demand as a babysitter.  And with her daytime availability, she is a SAHM's dream.  So she babysits during the day and many evenings.  She has many friends to hang out with and is off making films with them much of the time.  She has homeschool classes, too, and online classes.  So even when she is home, she is often in her room on her computer doing homework, rehearsing her lines for plays or writing something wonderful.  

Our days will be different now, and will continue to change as my babies get older.  But no one ever told me that these homeschool days spent together, learning everything together, would change ME.  I loved those days of being with each other!  I love my girls and who they are becoming.  And it just hurts all the more to see them moving on.  Sure, I think they have been well-prepared for the world.  

But I miss them.

And forget what I said....it wouldn't have mattered if anyone had told me.  I would not change our journey for the world.

God Sent Me To The Farmer's Market

There is a small Farmer's Market in Auburn Hills every Thursday afternoon/evening.  My friends have gone for a long time and have always put out an open invitation for people to join them.  Even with all of their good reviews, I had never managed to make it there.  Until today.

Let me back up for a minute to let you know my emotional state of the past week or so.  In a nutshell, I realized Lea is old enough for the post-high school program of special education.  She wants to go.  She had a last minute graduation.  I have been meeting with *gulp* public school staff after homeschooling since Feb. '07.  I left her with the school psychologist for testing for 2 hours while I sat and became increasingly uncomfortable in the office of the high school.  I spent the next 48 hours questioning this decision to send her back to school.  Some of my thoughts: "Is she ready?"  "Will she be safe going off in the community with this group?"  "Will I survive all this worry?"  "Is this program going to meet her needs?"  "Am I sending her because it's a great opportunity for HER, or so I can have a break?"  OK, so that is where I was at.

For some reason, I chose today to go to the market.  My friends were not even there and I almost left!  It's crazy, but I get uncomfortable shopping markets and art fairs.  I feel guilty looking at stuff made/grown by these people who have put themselves out there to sell it, and then not buying.  But I can't buy everything!
I sucked it up and shopped and got some great stuff.  Beautiful tomatoes, jam, salsa, eggs from happy chickens.

With my arms full, I approached the last booth on my route.  It was full of handmade items of all kinds.  As I started to look, a young woman asked me, "Did you find what you are going to buy yet?"  I could tell these entrepreneurs had some cognitive challenges and, of course, smiled as my heart swelled.  "Not yet" I said.  I put my prior purchases in the car and came back to shop without distraction.  There were candles made in cute teacups, plaques with nice sayings on them that were very artsy, cement stepping stones decorated with jewels and coasters made from tiles with pictures modge-podged onto them.  "Here, take a flier about our program!"  I read the flier describing the SKILL program of Avondale schools.  This is the post-high program in their district for people with special needs from 18 to 26.  The same program Lea is signed up for in our district.  Hmmm....

With the help of the very chatty young lady, I picked out a coaster that has a picture of a boxer puppy on it.  This sparked a (rather long) conversation about our dogs.  She even asked if I had pictures of them on my phone.  (Which I did.  Is that weird?)  I also showed her a picture of Lea and told her Lea has a disability, too.  "What does she have?" she politely asked.  "She has Down syndrome."  The girl and her friend looked at each other and grinned.  "OH!  Cool!!"  Not a response I have ever gotten in Lea's 17 1/2 years!  "Does she have a lot of friends?"  Wow, that is an unexpected question.  "Well, she does have some friends, but she doesn't have lots."  I said.  "Well, I LOVE making new friends!  Maybe I can meet her!"

Enter the program director.  We had a talk about Lea, about her starting the Rochester program in the fall.  I even told her about my hesitation, about my fears.  Her face just lit up.  She explained how these programs offer our special kids such great opportunities to interact in the community and learn independence and life skills.  She talked about her love of these students.  She told me about a fun dance program they offer during the school year and said Lea could attend.  My new friend behind the table said "Yeah!!!  It's fun!  She should come!!"  I got information on the program, said my goodbyes and left with my tile coaster.

A tile coaster made by a stranger is probably the LAST thing I need in my house.  The clutter is closing in on me and I am trying to get rid of stuff!  But that precious coaster is a reminder to me that God has this in His hands.  He knew it all along.  He sent me to the Farmer's Market to remind me.

Ringing the Bell

We had such an exciting week last week!  After a last minute scramble, Lea graduated.  We found a group of homeschoolers who were having a graduation ceremony and we pretty much crashed their party.  There were 6 other kids.

We only met them on Thursday when we went to rehearse.  Lea was great and her usual friendly self.  She received a little graduation cap as a gift with a marker.  It was a souvenir that you can sign.  She brought this along and proceeded to ask the other grads and their friends and siblings that were there to help to sign it for her, even though she didn't know them.  The kids were nice about it and signed it.  But from a distance, where I watched, there were a few kids who saw her approaching, saw she was different, and avoided eye contact.  They pretended not to see her standing there waiting for them to look at her.  She eventually said "Hi, I'm Lea.  Will you sign this?" and they did.  They probably wouldn't have done that little eye roll had they known I was still watching as she walked away.

One family arrived a bit late.  Their graduate, Brittany, was tall and very pretty.  I knew Lea would be drawn to her.  "Here we go again," I thought, waiting for the avoidance.  But wait...what is this?  Brittany is smiling back at Lea.  She is signing the cap!  She is having a conversation with Lea where she is talking, too!!  Lea was excited and really liked Brittany.  She was lucky enough to get to walk and sit next to her for the ceremony.

The next night was the ceremony.  We had to be there early to get ready.  Again, those other 5 kids were not friendly with Lea.  They weren't mean, but they certainly didn't include her in their group pictures or their running around being silly.  But Brittany did.  Brittany talked to Lea, introduced her to her friend and her little sister Hannah.

The ceremony was great, it went off without a hitch.  There was a reception after and the kids were all glowing with happiness.  I overheard one of them say, "Let's go ring the bell!"  Apparently the church we were in has a big bell outside.  So the 5 kids ran off with their friends and sibs.  But before Brittany went, she came to Lea.  "Do you want to come out and ring the bell?"  Lea's "Sure!" was filled with excitement!  So off she went to ring the bell!  Do you have any idea how this made her feel?  Not the bell ringing, of course, but the simple act of being included.  Being wanted.  I shed a few tears of joy (not the first time that evening!)  When they came back in Lea told her, "You are my best friend."

I told Brittany's mother how much this meant to me.  She was very proud, rightfully so!  When we were about to leave, I saw Brittany and her sister.  I told her with tears in my eyes that I noticed what she did for Lea.  That I appreciated her asking Lea to ring the bell.  Brittany looked surprised.  "Well, Lea is a graduate, too!  Why shouldn't she ring the bell?"  It was as if it never even occurred to her to NOT include Lea.  My response was, "Yes, that's true.  But you are the only other grad who even thought to include Lea and it really means a lot."  Brittany explained that there were times she has felt left out and different, and she always tries to include others who are the same way.  Hannah, her sister, was also very sweet.  "Lea is so nice and I like hanging around her!!"

It may seem like a little thing, to talk to someone with a disability, to include them in something you are doing.  But it doesn't happen very often to Lea.  I always make a point to talk to people I meet with special needs, even if only for a minute.  If it is that easy to make someone's day, why not give it a try?

Moving on

In 2 days, Lea will walk in her graduation ceremony.  Of course, this milestone causes me to reflect on her life and accomplishments.

Lea has had to work harder than most for everything she does.  Babies without a disability just eat.  Lea had to be taught by therapists and us at home.  Most babies just crawl.  Lea had to be taught by therapists and us at home.  Most babies walk, talk, run, read.....All of this came for Lea, but only after much work on her part.  She started out with a strike against her, but she overcame it.  Not only does she do all of that stuff above, but she does things that many of us, who are physically more capable, do!

She has been in the Special Olympics for several years now.  She has received tons of medals for swimming; bronze, silver and, of course, GOLD!  But for Lea, receiving a 4th or 5th place ribbon is just as exciting as getting the gold.  She knows she has done her best and is SO proud of herself for it!  Oh, she knows the difference between 5th and 1st place.  She just doesn't care which one she wins.  She plays soccer and wins medals and ribbons for that as well.  It has been so inspiring to see her progress in these sports.

She started therapeutic horseback riding 2 1/2 years ago.  At first, she refused to even get on the horse.  Then when she would ride, she would lean way back in the saddle or hunch over forward.  Now her posture is great and she can post, trot and canter!  She has tried jumping and roping, too.  (Although her favorite thing to rope is her therapist, Stacy!)  She even rides bareback.  If you have never ridden, let me just tell you that this no easy task.  Stacy lovingly (?) lets (read MAKES) me try this, so I can see how advanced Lea really is.  With no saddle, you have to use your leg and core muscles and have great balance.  Lea makes it look so easy!  And her muscles don't even work as well as mine do.

Academic learning has been the same as the physical stuff.  It took her much longer to learn to read.  But she kept at it, for years, and now has a love of reading that many people never do.  Her writing is really good, too. Fine motor activities can be very hard for her and physically uncomfortable.  Yet she will sit there with her pencil and write tons of great stuff in her journal.  She also writes songs!

She continues to WOW us with what she can do.  I don't think any of us will have a dry eye as she walks across the stage to receive her diploma.  She tried on her cap and gown and I had to fight back the tears.  I am going to need lots of Kleenex and waterproof mascara!

Great job, Missy Lea!!!