Coincidences?

Before Bryce was born I didn't know anyone who had Down syndrome.  There was no one in my immediate circle of friends and family who had DS.  Although, throughout my life, I can remember crossing paths with many people who had DS.  Maybe this happens to everyone.  But, I can remember since I was very young coming into contact with lots of people who had DS. 

My first memory of noticing someone with Down syndrome was when I was in about the second grade.  I remember playing on the playground with a little girl who had DS.   We played in the sandbox together.  She went to my school, but back then there was no inclusive education, so I never had any classes with her.  

Much later in life, the year after I had graduated from college I was at a neighborhood swimming pool.  There was a woman there who worked at the grocery store where I shopped.  She was with her baby girl.  I hardly knew this woman and I asked about her baby.  I couldn't really see her because of the sun glare and they were under an umbrella.  She told me that her baby was 15 months old.  I commented on how tiny she was.  (I really wish now I hadn't said that.)  She told me the baby had DS.  I don't remember what I said after that.

6 years later, I was at yet another grocery store.  (this time in another state.)  As I was standing in line to check out, I noticed a mother with a little boy sitting in the front of the grocery cart.  This little boy had DS.  But, this mother looked very sad.  She might have only been sad because she was having a bad day and it had nothing to do with DS.  But I felt sorry for her.  

2 years later while Payton was taking a ballet class, there was a little girl in her class who had a sister with DS. While I waited for Payton's class, I would see this little girl running around the playing for the entire 45 minute class.

1 year after this while I was pregnant with Bryce I used to take Braydon to a tumbling class while Payton was at school.  There was a little boy in that class with us who had DS.  

Another strange thing was the church David and I joined.  There must be hundreds of churches to chose from in the Denver metro area.  David and I joined a church 4 years before Bryce was born where the head pastor, Harvey Martz, has a son who has DS.  Harvey's wife, Judy, was the President of the National Down Syndrome Congress.

  

Also, when I was in high school, one of my favorite TV shows was Life Goes On.  It was a drama about a family.  One of the children in the family was a young man who had DS.

Before I had Bryce, I read two novels that centered specifically around Down syndrome.  The books were Jewel by Bret Lott and The Memory Keeper's Daughter by Kim Edwards.  

Before Bryce was born, we did not know he had Down syndrome.  

Do these types of things happen to everyone?  Does everyone cross paths a lot with people who have DS?  Maybe they do.  Maybe this just shows the prevalence of DS in our society.  Or maybe somehow I was being prepared for Bryce.  Maybe all of these "coincidences" were there to provide comfort for me.  Maybe God was trying to prepare me somehow, since I was completely blind-sided by the diagnosis.  

I don't know.  I like to think of them as more than coincidences.   Over the past 9 months, I have thought about all of these events often. And I have found comfort.

A Glimpse into the Public School System

Today Bryce turned 9 months old.  While he is still very much a baby, I have already come face to face with some of his future in the public school system.  The reason being that Payton will be starting kindergarden next year.  One of my fears when we first found out that Bryce had Down syndrome was the prejudice he could face.  As I have been put into contact with the Down syndrome community over the past 9 months, my fears of this have been somewhat put to rest.  Things are much better now than they used to be they say.  The stereotypes aren't what they used to be they say.  I believed them and I still do believe them to some extent, but not completely.  

About three months ago, I went to look at a Charter School that is in our school district for Payton to attend next year.  There is a long waiting list to get into this school.  To attend the school, there is a lottery system and one just has to hope and pray that their number is picked.  Some of the advantages of this school are smaller class sizes, uniforms, Spanish starting in kindergarden, music in all grades, traditional school schedule (we have year round schools), mandatory parent involvement, autonomy from the school district, among many other reasons. Since my tour, the school bond did not pass in our district and most of the schools will be undergoing major budget cuts in the upcoming school year. The Charter school won't be as affected by these budget cuts.  At the end of the tour, I asked the administrator conducting the tour about students with special needs.  I told her that my baby had Down syndrome and we were hoping he would attend the same school as his siblings.  She flat out said to me, "oh we don't have the space, resources, or budget for a student with such significant special needs as a child with Down syndrome."  Wait a minute, this is a public school, what about a free and appropriate education for all?  What about the Individuals with Disabilities Act?  What?  What?  What?  I was so shocked, hurt, and angry by her response that I didn't know what to say.  I did manage to ask if they had ever had any students with any kind of special needs like autism.  She replied that one time a little boy in kindergarden had autism, but it just didn't work out and he had to switch schools.  

I couldn't believe the prejudice I was already facing.  Bryce was 6 months old for God's sake! Through some research I have done since then, by law, that school has to accept Bryce as a student (that is if Payton even gets in.)  I was pretty sure about that going into the tour that is why I was so incredulous at that administrator's response.  

Fast forward to a few weeks ago when I had my second glimpse into the public school system.  I had to enroll Payton in the neighborhood elementary school just in case she doesn't get into the charter school.  As I wrote, the schools here are year round, so there are 4 different "tracks" into which the students are divided.  One of my neighbors, I'll call Steve because that is not his name, teaches at the neighborhood school Payton would attend.  I mentioned to Steve that I had enrolled Payton at his school, but was a little unsure about the tracks.  He said he could tell me about the tracks.  He proceeded to explain that "B" track is the most like a traditional school calendar, but that is where they place most of the "Speds".  "Speds?" I have never heard this DEROGATORY term in my life.  He meant the students in special education.  He went on that since the "Speds" are in "B" track that a lot of parents don't want their children to be in this track because they don't want to have to "deal with it".  I couldn't believe what I was hearing.  This guy lives across the street from me.  It hurts me to say that his wife is one of my friends.  Did he not know that Bryce has Down syndrome?  Did he not care?  Did he forget?  He is a teacher!  He is supposed to be one of the understanding ones.  He is supposed to be a part of the safe world for Bryce.  

It makes me mad.  I'm not afraid to fight for Bryce.  I will do it.  I will get him into the school that is best for him.  I can already see at the tender age of 9 months, the obstacles that are ahead.  I say bring it on.  Get ready, because we are coming.  That Charter school has 5 years to get ready for us!  Both of these "educators" have A LOT to learn about compassion, understanding, and love.

Martin Luther King Jr. Day

So, apparently in 1994, Congress passed a resolution that Martin Luther King Jr. Day should be a day of service for our country.  Instead of taking the "day off" people should have a "day on" and help out in the community somehow.  I didn't find out about this resolution until a few days ago. That is quite a legislative lag if I've every heard of one.  

For a while now, I have been wanting to get my kids involved in community service.  The idea is that if they help others they won't become so self-involved and self-centered.  Acquiring material possessions will not be the focus of their lives.  We have done a few service projects here and there, but I thought why not do one on Martin Luther King Jr. Day?  The problem is how much can a 4 year old and a 2 year old really do?  So, we decided to pick up trash at the park.  They were really excited about this.  I think a lot of the excitement came from the Backyardigans episode they have been watching about a space-age garbage truck.  But, whatever works.  I got everyone different colored plastic gloves and off we went.  The only problem we ran into was that apparently we live in a very clean place.  We went to three different parks and couldn't find any trash.  It was very disappointing.  After driving around a while, we finally found some trash across from a school.  The school grounds themselves were immaculate, but we found all the trash that had blown away from the school.  The kids thought it was great frolicking in the field collecting "stinky trash".  (Stray school papers and chip bags hardly constitute as being stinky, but this is kid talk.)

Next it was time for service project number 2.  The "yes we can" can in honor of Barak Obama's campaign slogan.  (I didn't come up with this on my own.)  We decorated soup cans and covered the tops with a slit to hold coins.  The idea is for the kids to collect coins to donate to their favorite charity.  I picked their favorite charity to be the Mile High Down Syndrome Association.  We went to five neighbors' houses and everyone emptied their coin jars into our cans.  The best part of it all, was when I was trying to get the kids to explain to our neighbors what we were doing.  After a few moments of silence when someone had answered their door, Braydon blurted out, "trick or treat."  It was hilarious!  I can understand the confusion.

Here's the link on how to make a "yes we can" can:

http://crafts.kaboose.com/yes-we-can-can.html

Fun Day!

Introduction

Well I thought I would try out this blogging thing.  It seems like the thing to do.  I've been wanting to start writing, so why not start in a very casual way like a blog.  But, I'm not even sure what I'm doing right now.  I'll be lucky if this ends up published or if anyone besides my husband actually reads this.  

I'm not feeling too prophetic right now.  I just posted two other essays I worked on a few weeks ago.  That took longer than I thought so my creativity is waning.  

Why even start a blog?  It's for so many different reasons.  As I already said to start writing.  But also to record my life with my husband and 3 kids.  It seems to give perspective on things when I write about them.  I have felt that way since I was about 12 years old and started journaling.  I have about 10 journals from middle and high school that I cringe to think about.  They are so filled with teenage suffering, that I don't want to think or read about any of it.  I should probably burn those things.  

If I blog, I will document the little every day occurrences that I would otherwise forget about.  Like today for instance, I met David, Payton and Braydon at the park.  I took Bryce in the stroller.  Normally, I put him in the infant carrier and he can't see anything.  Today, for the first time, I put him in a regular stroller so he could see the world and the world could see him.  He is 8 months old and I know with the other two they were already sitting up and facing the world by then.  But I think I have been protecting Bryce or really me from the world.  Bryce has Down syndrome and when he was in the infant carrier no one could see him.  If I kept him covered I wouldn't have to answer any questions from strangers about him.  I just wasn't ready yet to answer questions.  Of course they have come up already, but this was just another way to protect him or really me.  But, today, I felt confident and ready.  It was a perfect beautiful sunny Colorado day.  60 degrees, blue skies, perfect.  I put Bryce in that stroller, he smiled, I smiled, and off we went.  No strangers said anything to me.  I was just any mom with any kid at any park.    

The Joy of Laundry

It is Saturday morning and I am happy to write that I am doing laundry.  Most people dread doing laundry.  Usually I do too, but not today.  Today is good because my husband has the two older kids out and about on errands.  The baby is asleep and I am doing the laundry.  Usually when I am trying to do the laundry, I am dealing with the agenda of three children.  Their agendas have nothing to do with clean clothes.  These are the various attempts my children make to sabotage the conquering of "Mount Washmore."

Sabotage #1 The Un-Sort:  I have just spent 10 minutes sorting a week's worth of laundry into neat color specific piles.  I walk out of the room for 30 seconds to answer the phone, wipe someone's nose or longer to change a diaper.  I return to my neat piles only to find clothes strewn everywhere in a chaos greater than that which I started.  Did I mention I'm doing a week's worth of laundry for 5 including a baby who thinks spitting up is an Olympic sport?

Sabotage #2  The Whine:  30 minutes into the sort, I am finally ready to begin my first load of laundry.  Then, the whining begins.  "Mommy can you un-button my pants so I can go to the bathroom?"  30 seconds gone;  "Mommy can I have a snack, I'm hungry!!!"  5 minutes gone;  "Mommy can I have more juice?"  1 minute gone;  "Mommy will you play with meeeeee?"  2 minutes gone;  Only 2 minutes because I quickly try to explain why I can't play because I am trying to start a load of laundry.

Sabotage #3  The Un-Fold:  OK, somehow I have managed to wash and dry a load of laundry about two and a half hours after I began.  Now, it is time to fold.  Usually what happens now is the kids are playing nicely together and I sneak away to my room to fold the laundry.  Since this is a week's worth of clothes even one load takes at least 15 minutes to fold because it is huge. We're talking the washing machine was so stuffed, the water barely breached the top of this massive pile of clothes.  5 minutes into folding, I hear the shuffle of tiny footsteps down the hallway.  My blood pressure begins to rise.  "What are you doing mommy?"  "I'm folding the laundry."  "Can I help?"  "Ok, as long as you don't mess up the clothes I have already folded." The two older ones hop up on the bed and begin to help me "fold".  But, there is hardly any room on the bed because there is so much laundry piled up.  They begin pushing clothes around and the now the un-fold begins.  Within 2 minutes everything I have just folded is in another pile in the middle of the bed and the rest of the clothes are on the floor.

Sabotage #4:  The Put-Away:  Another 30 minutes later the clothes are finally folded and now I have to put them away.  After two minutes of begging, I finally allow my two year old to help put things away.  I give him the easiest thing I can think of to put away, a pile of washcloths.  He happily trots off to the bathroom to put them in the basket under the sink.  4 minutes later he returns with two of the washcloths waded up in his hand.  "I thought you were going to put those away."  "I did."  "Then why do you still have two in your hand?"  "I'm playing with them."  I walk in to the bathroom and the washcloths are strew about the bathroom.  Some in the tub, some out, most on the floor.  Now I can't tell which ones are clean and which ones are dirty.  I have to pick them all up and re-wash them.  After at least 4 hours, I have not even completed one load of laundry.

Now, it makes even more sense to me why I am so happy to be doing laundry today, Saturday morning without kids. Except, the baby just woke up from his nap.  I guess I'll have to finish the laundry later.

Double Ear Infection

It is snowing today.  Not the kind of snow that produces big beautiful snowflakes or large drifts of snow for children to play in.  No, today's snow is like tiny hail.  Small, hard little drops of water pretending to be snow.

The baby, Bryce, has been sick for a week with a cold.  In fact everyone in my family has been sick for a week.  Sore throats, headaches, runny noses, and grumpiness abound in my home this week.  If someone isn't sleeping they are whining and complaining about life.  Adults included.  

Bryce awoke from his morning nap today with snot bubbles coming out of his nose.  I picked him up and his little body was warm to my touch as if her were a little furnace.  It was 11:00AM.  If I was going to make it into the doctor today, a Saturday, I had better call right away. 

The receptionist who answered the  phone at the pediatrician's office said the nurse would call me back.  She was with a patient and all the appointments were already taken up for the morning.  She would triage me and decide if I needed to come in.

One hour later and one minute after the office had closed for the weekend, the nurse called me back.  "What's going on with Bryce today?"  the nurse asked me.  I tell her about the week long cold that he doesn't seem to be getting over and the fever.  She replies, "well, he should probably be seen, but we are closed for the weekend now."  (thanks for your help) "If he gets any worse, you may need to take him to the emergency room before Monday.

Of we go to the urgent care clinic.  It is a brand new building.  I can still smell the fresh paint as I enter the office.  The chairs in the waiting room are neatly arranged in a horseshoe.  The two girls behind the desk are young and fresh and happy to be working here.

After paperwork and a short wait, we are called back to see the doctor.  The handsome young male nurse takes me back and asks the obligatory family history questions.  I tell him that Bryce has Down syndrome and sometimes it is hard for doctors to see in his ear.  His ear canals are so small.  This doesn't seem to faze him and off he goes to find the doctor.  The doctor looks in Bryce's ears and says that they are both red.  He can't see any fluid, but since they are so red, he's fairly certain he has an ear infection in both ears.  He writes a prescription for antibiotics and off we go.  Only $50 for this visit compared with the $100 ER visit we could have made.

Some things just don't seem fair.  Bryce is the sweetest one of us all.  He complained the least in his baby way.  He hardly cried during any of this, including the week long cold.  He behaved even better than David, my husband, who resigned himself to bed for 36 hours straight.  Braydon (the 2 year old). has been practically miserable to be around for the last week.  Payton has had her moments too.  Through it all, Bryce was the sickest of us all.  He only wanted to be held and kissed and loved,  He asks so little of me as his mother.  The only reason I knew he was really sick was that his little furnace turned on.  Despite himself, he little body told me, hey there mom, I'm sick over here and I need to get to the doctor now.

How many other times in his life will Bryce be unassuming and un-demanding?  How many other times in his life will I overlook his symptoms just because he doesn't make a huge fuss.  His sister, Payton, would have me call out the national guard for a paper cut that requires half a tube of neosporin and about five band-aids.

I pray that I will be a good mother to him, to all of them.  But how?  It seems like such a daunting task.  What happens when the issues are pre-marital sex, friends who are mean, boyfriends who don't call, failed science tests, speeding tickets, or worse?  Will I be ready for all of that?  Will I miss it?  Or despite themselves, will their little furnaces turn up and tell mommy that something is wrong?  

Finally the little snow hail has stopped pretending to be snow and has turned into big beautiful soft snowflakes.  Maybe we'll make a snowman.