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!!!

A Giving Spirit

Being the Mom of a kid with special needs can be challenging at times.  With Lea I always have to take extra things into consideration.  The walk is too far, the noise is too loud, the touch is too soft, the dark is too....dark.  But days like today remind me of the blessings Lea brings to our family.  Heck, to our WORLD!

Lea is a very giving person.  There are so many examples that I had to narrow it down to just a few to tell you about.

A couple of years ago, Lea attended an art day camp for a week at a local church.  Each day she created some really cool things.  I think.  I only saw one project!  I would pick her up and ask her what she made that day.  She would describe it, I would see the other kids' work.  "Where is yours?" I would ask.  "I gave it to (insert name here)."  It was always someone different.  She gave her artwork to other kids in the class, teachers, volunteers.  The one and only thing I saw from this camp was a really cool birdhouse she painted and decorated with jewels and glitter.  It was huge and not just decorative.  An actual bird could live in there!  It was still wet, but I had plans to spray it with urethane to protect it and put it outdoors.  We brought it home and I put it on the table as a centerpiece.  Later that day, we had a visit from a very special woman.  She was Lea's first teacher when she was in the Early Intervention program.  Hamida visited our home once or twice a week for years giving Lea therapy from ages 3 months to 3 years!  We hadn't seen her in years and it was great to catch up.  As soon as she walked in the door, Lea told her, "I made you something!"  She was all smiles as she ran to the table, grabbed the still-wet birdhouse and gave it to Hamida.  Hamida was overjoyed!  I would have never told her, "No, that is a mistake.  That is MY birdhouse!"  I never even got a picture because then the secret would be out that I had planned on keeping this treasure.

Lea now attends a farm day camp weekly.  She makes a craft almost every time.  I have almost none of these crafts.  Today is a good example.  One of the volunteers at camp handed me a strange but intriguing item.  An empty water bottle with straw glued all over it, a string attached, and holes cut in the sides.  Inside was black sheep's wool.  They sheared the sheep last week and they filled the bottles with the wool.  You hang this outside and watch as the birds come by and take bits of wool from it to use in their nests.  Just about the coolest thing I have seen lately!  Lea said "No, Mommy, that one is not mine."  "How can you tell?"  "Because I gave mine to Suzie."  Suzie (name changed to protect the innocent, LOL) is another camper who recently had a really bad day.  She yelled at Lea, got in her face, and snatched the glasses off Lea's face, breaking them.  Lea was quite upset about this (rightfully so!).  I explained what the camp director told me...Suzie had been feeling ill and off due to a change in her medication.  Obviously Lea has forgiven Suzie as she was the recipient of the bird's nest maker!  Still, I wanted this thing.  Suzie made her own, after all.  What about me?

Lea also gives us all candy. She has a weekly therapy appointment at which she receives little candies.  She purposely chooses candy that she can't eat (food allergies) so she can give it to me.  Or Grandma and Granddad.  And sometimes even her sister Lainie!

Lea is truly a giving spirit.  And I DO get to keep a few things she gives!  My favorites are her smiles and her hugs.  Given most freely of all!

The Ketchup Meltdown

Lea has been milk free for about 2 years now.  Eliminating milk has changed her life!  Her stomach problems disappeared.  Her nose is less stuffy.  She rarely gets the eczema that was always plaguing her.  Even her crabbiness that we attributed to being a teenage girl went away!  (Well, almost.)  These changes are why I am a Food Nazi, checking everything she eats.  Asking people we visit if I can read their packages and see their recipes.  You would, too, if it kept your kid safe.

She recently began having some more tummy aches.  Since people with Down syndrome have a 10% chance of getting Celiac disease in their life, I wanted to check it out.  Celiac is an inability to process the protein gluten which is found in wheat, barley and rye.  She has tested negative in the past, but the tests aren't always accurate, she tests negative for milk, too!  The doctor recommended going gluten free to see if her tummy gets better.

I have researched a gluten free diet in the past when we thought she may have Celiac. I have many, many friends who either have it, or have a sensitivity to gluten and don't eat it.  Since I already read every package, and eating at a restaurant or even a relative's house is already a nightmare, I figured I could handle being GF.  I know where gluten hides, so I can do it.  There are so many GF products available these days, it won't be too hard.  I am confident this will be easy.

Then I went shopping.  Lea rarely eats bread or toast, so that is no problem.  But what about snacks?  Especially those run out the door in a hurry ones?  I stood in Trader Joe's, staring.  The funny thing is, I was staring at the cheese!  I was so overwhelmed and starting to feel bad about taking away more of her favorite foods that I stood in the cheese section, eyes glazed over.  I snapped out of it.  Come on, Super Mom.  You CAN do this!  Lea isn't picky and is even excited to try some new foods!  Step away from the cheese.

I got her some dried fruit like strawberries.  She doesn't like most dried fruit.  But I bought it because I didn't know what else to buy.  I found some rice crackers that looked good.  Ok, confidence returning.  These are salt and pepper flavored, she will love these!  I stepped into the condiment section and saw some ketchup.  Mini panic attack.  Ketchup has vinegar which is made from grain, right?  Is that right?  OMGluten!  Lea LOVES ketchup.  Barbecue sauce is next to the ketchup.  Lea LOVES barbecue sauce!  No more ketchup or barbecue sauce?  She may as well never come out of her room.

I sat in the parking lot contemplating this.  All the things she can't have.  She is already so different without any food allergies!  It isn't fair.  It's hard to manage a food allergy, but for someone with special needs, it can be even harder.  She just wants to be like everyone else.  She does feel special when someone says "here, I made this just for you!" but watching everyone else eat birthday cake while she has something different is not fun for her.

By the time I got across the street to the Whole Foods parking lot, I was starting to tear up.  It's not fair, why Lea, why not me instead, how will we do family holiday stuff now?  My heart started pounding, my palms were sweaty.  I really didn't want to have a breakdown in the parking lot, so I called my friend Kim.  Celiac and gluten free for her and her kids for many years, Kim never cheats with gluten.  Never.  She is my expert.  Thank God she answered her phone.  "OMGosh, Kim, doesn't vinegar contain gluten?  Lea loves ketchup and I can't imagine taking it away from her!" I gushed.  She calmed me down and explained that most experts agree vinegar is gluten free.  They don't have a problem eating it.  Whew.  Ok, she talked me down some more and told me "You can do this.  It's hard at first but you'll be fine."  Whew again.

Only one more contact with Kim while in the store, and I was on my way.  Both Whole Foods and Trader Joe's gave me big huge lists of GF foods they carry.  I found many different granola bar type things and some pizza crust.  Pizza is what Lea is most worried about missing.  The GF pizza we have had in the past has been fine, but no wheat AND no cheese....well, we will see.

The thing I had to realize, right there in the parking lot, is that yes, this sucks.  But it's our reality now and it's time to move on and deal with it.  It will be worth it when Lea is pain-free!  Now I gotta go find a spot on the counter for Lea's GF toaster.

Too Social?

There is so much talk about social media.  With Lent just passed, there were many of my Facebook friends who gave up Facebook for Lent.  There are always people saying they need to get off FB, they spend too much time on there.  If you are one of those people, I'm sorry to be using you as an example here.

Facebook is called SOCIAL media for a reason: it's supposed to be social.  Being on FB and just lurking is like being at a party with tons of your friends, and you are just hiding in the corner, never joining in the conversation.  People have said to me "you are on there soooo much!"  "you are so bad!"  (I find it very funny that they say this....if you know I'm on there a lot, doesn't that mean YOU are on there a lot?  If not, how do you even know I'm on there a lot?)

So let's clear this up.  First off, for those of you who still have a dumb phone, let me explain.  I can look at FB, post on FB, take a picture and upload it to FB all in about 30 seconds.  Even if I do this 10 times a day, I have spent only 5 minutes, see?

I do not now nor have I ever thought FB was bad.  Sometimes bad things happen on FB, yes.  Admittedly, I get in FB fights from time to time.  This, I will admit, is not a good idea.  I must try to stop this.  Yes.

FB has brought me so many good things!  Here are just a few; some of you will recognize yourselves here!  I have been able to keep in touch with people I probably never would have spoken to after high school.  In fact, before FB, I had not spoken to them.  But now I see pictures of their kids, their vacations, their lives.  It's just like seeing someone in person: "What do you do?  Where do you live now?  Can I see pics of your kids?"  I have FB friends I can count on to be excited for me when I post good news.  And I am truly excited for theirs.  I have FB friends who I don't know if I ever even hung out with in high school that crack me up daily.  I have many friends who will send up prayers if I ask, just as I will when they ask.  And I really do, I don't just click "like."

When my niece was brutally attacked, the outpouring of love from my FB friends was amazing.  I had friends and their friends praying for her and our family, around here and all over the world!  How awesome is it that I hadn't spoken to my friend from high school in 20 some years, and she had her church in Japan praying for my niece?  How awesome is it that I "met" a wonderful woman through someone else's FB page as we were making fun of our mutual friend, and she has become my Sister in Christ and prayed for my niece with her church in Mexico?

I have been able to find out what my old college roomies have been doing.  And it was wonderful to see them last weekend, one local, one from California and one from Prague!  To see them and what they have become.  I would have missed out on this if it wasn't for FB!  Oh sure, we could keep in touch via email, phone, letters. But we don't.

I have been able to let others know about Down syndrome and how wonderful Lea is!  I have always had a feeling it's my job as her parent to let others know about it.  FB is a great way to do that.  I have talked a lot about homeschooling my girls and "met" some inspiring homeschool moms via FB that I never would have met in person.  (Still haven't met some of them in person!)  But we share ideas.  People have contacted me, knowing through FB that I homeschool, and have sent others my way with their questions in starting out.

So I stand by my Facebooking with no apologies.  I love my FB friends and they love me!  (And if you don't, you can just hide me.  I'll never know.)

My God

My God.  No, not OMG.  Literally, my God.  Do you know Him?  Due to a recent online "run in" with one of my Sisters In Christ, I was inspired to tell you about Him.

I barely know this woman who sent me an email stating that we as Christians should be more judgmental.  Now, I don't know if whoever is reading this is a Christian or not.  But either way, you are probably aware that we Christians have a reputation for being very judgmental.  The article she sent said, "We are told to tolerate the religious thinking of non-Christians, because every religion has an element of truth to it, and because salvation is not exclusively for Christians. We must also tolerate in our churches the sinful actions of others. It is not our business if an unmarried couple lives together! It is none of our business if a member of our congregation practices homosexuality! We must not judge them." The whole article is about how wrong this is...society tells us these things and we, as Christians, must stand up and judge those that would do such things. It also says, "We must cater to the whims and wishes of the feminists" as one of those bad things society is telling us. I replied asking her to please not send me these emails anymore and that it was offensive. Her response back? "The Bible says a lot of things that men find difficult to swallow." Implying, if not saying outright, that I just can't handle the truth.

Riled up, I started to rant on Facebook, as did some of my friends, also Christian. But I decided that wasn't a good venue for such a thing. Plus I have too much to say and it just won't fit on Facebook!

So here I am to tell you about my God. My Jesus. I am not going to throw scriptures at you. You have heard them all before. Taken out of context, you can find one to support any point of view. I am going to tell you about who He is to ME.

First, here is where I find Him, what He looks like:

I saw Him in the places above: Mexico, Hatteras Island, Smoky Mountains.  I see Him in my children and the rest of my family.  I see Him in the pictures of the faces of people Brad and Lainie met in Haiti.  I see Him in the face of a sweet, tiny baby in the church nursery who was born addicted to drugs.

I feel Him, too.  In the hugs from Brad and the girls.  In the kisses from my doggies.  At times I have felt Him so strongly, it was like a physical presence.  Like when tons of people in the church I grew up in laid their hands on my Mom in prayer before her breast cancer surgery.  Like when our then-minister prayed for me before some surgery of my own.  When a group of wonderful people surrounded my niece and prayed before removing her life support, letting her go.  I feel Him at almost every church service I attend at Kensington.  Enough that I cry there on a regular basis.  His presence overwhelms me!

This God of mine is full of grace, forgiveness, understanding.  He doesn't judge me and I don't believe He wants me to judge others.  People might make choices that I wouldn't make.  But that doesn't make me better than they are.  God forgives everyone, that is the best part!  My God is all about the LOVE.  He wouldn't want me to use my faith as a weapon against others.  He doesn't want me to preach hate, no matter the circumstances.  

I will pray for this woman, pray that maybe someday she can know MY God.

The Face Behind Your Jokes

This is a tough one for me to write.  There is so much pain, it is a physical thing for me.  My heart literally hurts.  When I hear or see someone use any version of the "R" word.  Retarded.  Retard.  Even the more politically correct terms like mentally challenged or cognitively impaired are being used in jokes.  I know you are trying to be funny when you say these things.  I know you think these terms are funny to hear, and you laugh.  I just want to put a face to your jokes.

Lea is 17 and has Down syndrome, as most of you know.  I have seen several awesome YouTube videos of people in their own campaigns against the "R" word.  You know the ones, where there is a good song playing, and the person holds up a series of index cards with messages on them.  They often say about their loved ones, "she is not retarded."  I know where they are coming from.  They have the same knife-in-the-heart feeling that I have when I hear the jokes.

But the truth is, Lea IS retarded.  Mental retardation just means it takes Lea longer to learn things.  And it means there are some things she probably will never learn.  There are things we have worked on for years, like math.  One day she can do quite well.  She can add and subtract 2 digit numbers.  The next day, she can't add 2 + 2.  This is not funny, this is not something to make fun of.  She does the very best she can and her brain just can't keep certain things in it.  It does NOT mean Lea is stupid.  I know what you are thinking.  "Of course Lea isn't stupid!  I never said she is stupid, or anyone with a disability!"  But when you tell the jokes, when you forward them along in an email, when you post it on Facebook or when you refer to someone or something that IS stupid as retarded, you are calling Lea stupid.  By using the word retarded in a negative fashion, you bring Lea down.

I stand up for Lea all the time.  I have even scolded, if you will, a Kroger employee who was putting chips on a shelf because he called down the aisle to the other employee that the chips looked so retarded the way he was doing it.  I spoke to the owner of a Hallmark store when her employee yelled across the store about something that looked so retarded.  I have asked friends (hopefully without scolding!) to please not use that term, at least around our family.  I know it would be asking a lot for people to start doing the same.  To tell someone who jokingly calls someone a retard that it hurts.  "I love someone who is mentally challenged.  That term is hurtful."  But I wonder, will anyone reading this at least change their own views of how funny this word is?  Will anyone at the very least not laugh at the jokes?  Will anyone choose to never use these terms in a negative way?  Will anyone not joke about "the short bus?"  Will anyone look at Lea's beautiful, laughing face above and remember her when the term is used?  Will anyone at all share this blog with others?  I hope so, with all of my heart!

Lea may be mentally challenged.  But I tell you one thing: she would never purposely hurt your feelings by making fun of you!  That is one of the amazing things about Lea, and all of the people I have met over the years with challenges.  They are so full of love!  Lea has been made fun of by other kids.  She may get sad for about a minute, but then she is full of forgiveness.  "I still like her, Mommy.  It's ok."  SHE has to comfort ME in these situations!  I wish I could blow it off like she does.  But I can't, so I do what I can as her Mommy to try to make people understand.