I hate standardized testing.  I always have.  We tell our children not to compare themselves to other people, yet in a school system, that's all we do. Some argue that standardized testing is a "fair measurement of a students achievements, and is a way to hold teachers and schools accountable."  Okay, but what about those students who don't learn like other kids?  You can't tell me every single kid in the US learns the exact same way.  And does every single teacher teach the exact same way?  Are we raising a bunch of working bees that will always follow the rest of the bees?  Or are we undermining our ability to raise innovators and critical thinkers by this "drill like" education system?

In my house, standardized testing has created three extremely stressed out children.  I have two that are always "above average", but I have one who has struggled to even reach "average".  Does this mean this child isn't trying, or is lazy, and will never be a promising member of society? HELL NO!  But it has discouraged said child enough that I don't believe they even care anymore. The comparing has caused the other two to believe that any grade below a 100%, is unacceptable and it, more often than not, brings them to tears.  And I can assure you that this is NOT of my doing!  I have always been a "cup half full" kind of girl.  I have never seen the things that my children cannot do, only the things they CAN.

So when we went in for Grant's first IEP meeting, though it wasn't a horrible experience, it did rub me the wrong way.  I sat there for an hour listening to all the things that my almost 3 year old, CANNOT do, compared to other children his age.  And yes, that is Grant compared to children that do not have Down Syndrome. And when they got to explaining how they came to these conclusions, I realized that the things they tested him on, and the examples that they were comparing him too, most of the time, are things he has not yet been introduced to.  He didn't recognize many of the food items that most kids can..... Well, that's because HE CAN'T EAT THEM!! Of course he isn't going to know what they are. The poor kid is still on a diet of soft and dissoluble foods due to his esophagus issues!  Another example, he didn't put the baby doll in the crib when he was asked where the baby sleeps.  If shown a picture of a king size adult bed, he would have put the baby there. He has never slept in a crib in his life. None of my kids have. 

The meeting kind of reminded me of a bad campaign ad. Instead of concentrating on the things I can do, I'm going to bash on someone else for the things they didn't do....  

It is so frustrating to me. We need to cut our kids a little slack. I truly believe that a lot of the kids that rebel and act out, is a result of being compared to other kids.  They are negatively labeled, and discouraged, and then they just give up.  I know this because at one point, I was that kid.  And I'll tell you what, I am not raising worker bee's! I am raising kids who are kind and compassionate. Kids who know how to think outside the box.  Kids who will stop and help someone up, instead of running over them to win. Kids who will eventually realize that their mama is a brilliant woman who didn't actually ruin their lives, but instead, taught them how to survive it in a healthy and positive way. God willing..

Love, Kindness, Laughter, and Faith
Meaghan

I done good!

With Down Syndrome Awareness month coming to an end, I decided I should probably say a few thing about how DS has changed my life and what it means to me.

When Grant was born, we knew there was a possibility that he would be born with a Tracheoesophageal Fistula.
http://medical-dictionary.thefreedictionary.com/tracheoesophageal+fistula

So, we were prepared for that.  What we were not prepared for, was the diagnosis of Down Syndrome. So yet again, my world got shaken to it's core.  

 The moment I laid eyes on my newborn son, I knew. And as much as I hate to admit it, my thoughts were not of joy.  They were everything but.  I went into automatic blame mode.  I thought of all the things I could have done to have caused this. I shouldn't have used bleach on the bathtub.  I shouldn't have had that drink of wine when we toasted my dad after his funeral.  I shouldn't have taken care of my dad while he was dieing......I blamed myself, BIG TIME!  I went through all the emotions.  Then, I saw my baby as he was getting ready to be transported by ambulance to head to the NICU at Childrens Mercy Hospital, two hours after he was born, fighting for his little life.  That's when I knew I would fight for his little life too. 

After Grant was taken to CMH, I made my husband follow.  Though I wanted desperately to be there with him, I knew I physically could not.  But I did not want our baby to be alone.  Brian had a really hard time with this.  He didn't want to leave ME alone, but I insisted.  And as we all know, you don't argue with a hormonal woman after just giving birth!

After he left, my older kids came and visited with me.  They wanted to stay with me and went into protective baby bear mode.  I did not tell them about the possibility of DS, though.  The fistula was enough at that point and I think I was still holding on to hope that the genetic tests would come back with a negative result.  After a while, the kids left and I was alone.  And that's when I let the dam of emotions break.  I cried a huge, ugly, cry.  I cried like I never have before.  I felt sorry for myself for not being able to hold my new son. I was mad that there was a stupid flower on my hospital door, symbolizing to the nursing staff that the mommy inside was babyless.  

Then, I stopped.  I heard my grandma, (who had died 10 years before) tell me to knock it off and pull myself together, because I had a baby to take care of. So I did. 

  Grant got out of the hospital three weeks after having surgery to correct his fistula.  The Dr's were amazed at how quickly he healed, how he took to nursing almost immediately, and how fast they were able to send our little super baby home.  Little did we know that this would be the story of our lives.  Grant exceeding all expectations, amazing therapists, teachers, doctors, and nurses.  But most of all, amazing his parents.  You see, all of our preconceived notions and our initial reaction to our sons "disability" have flown out the window at super sonic speed.  Because they were WRONG!!   And many times we have heard the sayings, "God gave you this child because you are strong enough to handle him". Or, "He is blessed to have you as his parents". And though these words are said with good intentions, this is not how I see it.  I believe that God blessed us with Grant because we DESERVED him.  And this is why... Brian and I both have experienced a lot of heartache in our lives.  I won't get into the details, but trust me when I say that between the two of us, if we wrote a book together about our lives and our struggles, many would think we were making things up.  So in my opinion, Grant is our prize.  He is our light at the end of the tunnel.  Our pot of gold at the end of the rainbow.  We are his parents because we deserved some joy in our lives after all the pain. (even though he can be his own kind of pain)  He is God's way of saying, You did good.  But I really do believe He outdid himself and gave us way more than we deserve.....but we'll take it!! We wouldn't want it any other way!!

What I learned from losing my mom

The past few weeks, I have suffered through my first, and I pray, my LAST, root canal. For three weeks I have endured pain that has radiated down my throat and to my ear. I literally started to think that I had something horrible going on in my body, that was being brought to the surface, dressed like a bad root canal. And I go through this every time I don't feel good. Fortunately, it is very, very, rare, for me to get sick. But when I do, I get SICK! But I also get scared. And I am sure that 95% of my trepidation is caused by the fact that I lost my mom at a young age to what started out as a fall down the stairs, resulting in a sprained ankle. That sprained ankle, ended up being a result of the beginning stages of Lou Gehrig's disease. Also known as ALS. About a year and a half later, ALS took my mom, and obviously, shook my world to it's core. And it wasn't until I had my own children, that I realized just how horrible it must have been for my mom.


If you are not familiar with ALS, here's a little bit of information I copied from the ALSA website:

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.




So basically, my mom slowly lost all function of her body. When she could no longer breathe on her own, she had a tracheotomy. When she could no longer eat, she had a feeding tube. She insisted on being out of bed and in her wheelchair, sitting in the living room, even with all the work it took to get her there, when we got home from school. And it took me years to realize that she did all of this, because she was still our mom. And she was going to fight to stay alive as long as she could, because we were still her children.

So, anyone that really knows me, knows that my biggest fear in life is leaving this earth while my children are still young. I was 15, and my brother was 12 when our mom died. She was 41. In four years I will be 41. As that time gets closer, my paranoia grows. A stomach ache turns into Ebola. Headaches turn into possible aneurysms. Any ache or pain in my joints, is automatically ALS. And EVERYTHING is cancer!

Now, the logical side of me knows I am just being paranoid. But that scared and illogical side of me usually kicks the logical sides ass and then taunts me with the fact that all the unnecessary stress I'm causing myself, could kill me too!

So, I try my best to look on the positive side of things. I do believe that losing my mom young, in a way, has made me a better mom. I know how precious my time with my children is, and I know how quickly it can be cut short. So I tell them I love them 100 times a day. I really don't cry over spilled ANYTHING, because I know how lucky I am to be here to clean it up. I try to stress to them the importance of being compassionate and empathetic towards others, and brave for themselves. You see, I want my kids to have the things I didn't have growing up. But that has nothing to do with the material things I can give them. With the foundation I am giving them, someday they will be able to acquire things. I want my kids to have me. I want to be there when their hearts get broken, so I can comfort and help mend those hurts. I want to be there to reassure them that life does go on after falling on your face, after being humiliated, after being betrayed. I want to help them rebuild their faith in the world after it knocks them down and stomps the breath out of them. I want to be that person on the end of the line when they've been up with their own child all night, and are ready to have a complete breakdown. Yes, I definitely want my children to have what I didn't have. And like my own mom, I will do whatever I have to do to make that happen.

I finally get it, Mom. Thank you for my life. I wish you were here to live it with me physically, but I know your are, and always have been, right beside me. I just hope I am making you proud. I love you.  
Love, Your Daughter

Love, Kindness, Laughter, and Faith,

Meaghan

Step Up For DOWN SYNDROME!!!

My family, and many other families in the Kansas City area, are gearing up and raising money for our annual Step Up For Down Syndrome walk.  This will be the third year for team Grant The Great. It is a day that all of us, graced by a loved one with Down Syndrome, get together, eat, play, and take a lap around Arrowhead Stadium, to raise money for the organization responsible for bringing us all together as a family. The organization responsible for sending warriors, mostly led by our amazing director, Amy Allison, into schools and businesses, and hospitals, etc..to educate and open minds about Down Syndrome. The organization that doesn't just send welcome baskets to parents, like Brian and I, whom were shocked to learn that our newborn had that extra chromosome, but personally delivers them and will sit and talk to them, and welcome them to the family.  The organization that counsels and supports parents who get a prenatal diagnosis of DS, and prepares them for their wonderful and "enhanced" bundle of joy!  The Down Syndrome Guild of Kansas City, is run by, supported by, and employs, real life angels!  Help us give back to these angels, so they can continue to empower more families, and open more minds!

Please take a moment and check out and support our DSG FAMILY!  http://secure.ezeventsolutions.com/fr/FDFDS/2012StepUp/GranttheGreat


 

2010 

   

        2011


    

Love, kindness, laughter, and faith!
Meaghan

A day OFF

I have absolutely nothing to do today, and I am excited!  I have no where to be, no one scheduled to be here, nothing to run to the store for that can't wait until tomorrow.....I am almost FREE!!  I say almost because I still have a two year old to take care of, and though a lot of people see that as a no pressure type of vacation, I dare said people to come to my house for a few days and try this "vacation" on for size. And I will get a good laugh as they sprint back to their full time, "stressful", nine to five job!

But, back to my "day off".  Today I will sit here on this computer for a little while, stalking my friends and family on Facebook.  I will hop over to Pinterest  to give my ego a little boost when I see how many more people have repinned my alfredo sauce mix, and then proceed to scope out other brilliant ideas that I just can't live without. I will then play with Grant for a little while and do a little sign language refresher with him, maybe a few flash cards as well. I will clean the kitchen and unload the dishwasher. By then it will be time to feed Grant lunch and after that, get him down for a nap. That is when I will have a few hours of absolute peace and quiet. I may even sit down and try to read the book I've been trying to start for a few weeks now. Then when the G-man wakes up, I will give him his bath early, get dinner started, put that last load of laundry in, and wait for Brian to get home.  After dinner, I will,clean the kitchen, fold the laundry, clean the baby, and relax for an hour before getting ready for bed. 

I love these days when I have nothing to do!! If only I had remembered the bon bon's.........

Have a fantastic day everyone!

Love, Kindness, Laughter, and Faith,
Meaghan

The psychology of a band-aid

The other day, I witnessed a child get a very small scratch on her leg and proceed to have a complete and total,all balls to the wall, all systems a go, meltdown, until she got a band-aid. And there wasn't even blood to staunch on this 'major" injury! I stood there in jaw dropping shock.  Not so much due to the ridiculous fit that was had, but rather the fact that this child has been taught to throw one over a tiny scratch. And on top of that, that the mother of said child, validated it by rushing to get a band-aid!! ARE YOU KIDDING ME!?

 I, for one, have never been a fan of Band-aids.  I wasn't one of those kids whose parent's thought a band-aid, could fix anything.   As a matter of fact, we seldom had them in our house. And on the rare occasions that we happened to have a random box floating around, we had better not use one unless we had an appendage falling off or a possible severed artery. And I never thought much of it.  I do believe, though maybe not the intended lesson on my parent's part, that it taught us a couple valuable things about life. One, not to make a big deal over a small scratch. Similar to the old adage, Don't cry over spilled milk. Two, a band-aid is not the cure-all. As a matter of fact, most of the time, it hurts more to pull the darn thing off than the initial "injury" itself! My children will attest to that! They have never been a fan of them! Seriously. When the big ones were little, I would have to ask the nurse who would give them their immunizations, to NOT put the band-aids on afterwards. My kids hated those more than the shots!! (smart kids, I know!) Three, it taught us to be more careful and not do all the stupid stuff we knew we probably shouldn't do. Because we won't go home and get sympathy OR a stinking band-aid.  Finally, a band-aid is a temporary fix. And as we all know, a temporary fix doesn't really help a severed artery or appendage. Don't get me wrong, band-aids do serve many purposes. I have used them to wear ill fitting shoes that happen to be really cute but really uncomfortable. They are good at stopping the blood from getting into the food that I have chopped for dinner, and while doing so, mistook myself for the star of my own cooking show. And on rare occasions, I have used them for tape. Yes, tape. Another thing we never seem to have on hand when we need it. It makes for an interesting looking birthday present, not to mention a great conversation piece! 

So, needless to say, maybe I'm a band-aid martyr. But maybe I was just brought up, to not be such a wimp. So in turn, I have taught my kids to not be wimps, too.  Scratches and scrapes happen. Save the band-aids for the major injuries.


Love, Kindness, Laughter, and Faith
-Meaghan

New Friends

Today at church, there was a new little girl, who happened to also have Down Syndrome, in Grant's Sunday school class.  As soon as I walked into the room crowded with two year olds, my eyes instantly zeroed in on her.  Another member of The Team.  That is what our little family calls other people with DS.  Because it feels like a team. It feels like we are a member of an elite club that not everyone can be a part of. And that's kind of cool.  Anyways..... After service, I went to get Grant and I hung out in the exit of the Sunday school, so I could meet the family of the new little girl.  As soon as we all saw each others children, that elite, top secret, instant bond thing, sprang into action.  It turns out that we live very close to one another and we have the same OT that comes to our house for the kiddos.  What a small, small, world!!  It amazes me what new doors have opened for me and my whole family, just by having been blessed with a child with a little extra chromosome.  We have met so many new friends, had opportunities to experience new, and amazing things, and just become better people, in our elite club, The Team.   Out of all the groups, or cliques, or teams, I've been part of in my life, this one is definitely my favorite.  My membership was instant and will last a lifetime.  And I couldn't be more thankful.  Besides my church, God gave me another place where I finally belong!  How great is that!?

                                                                      Eastland Friends

Excuses.....

Lately, I have been having a hard time trying to figure out what to write.  The problem isn't that I have nothing to say, it's that I have too much to say. And I get my best ideas as I'm doing my hair and make-up, or when I'm trying to fall asleep at 2am. This is why I have started the, Meaghan needs a laptop campaign, in my house.  I need to have the ability to put my thoughts down as they come. Because by the time I have a chance to sit down at the desktop computer, my mind is a jumbled mess of profound thoughts with a hint of dirty diapers, and a dash of to do's. 
On top of all that, I am an avid reader.  I absolutely LOVE to read.  It is my escape from reality. So when I finally get a moment of peace, if I am in the process of reading a book (which is pretty much, always) I am torn between that, or sitting down here. 
And my last excuse for leaving my loyal readers hanging, is that I have a two year old that is stuck in destructive mode.  I have been thinking about taking him to the doctor in hopes that she may be able to show me the button, to turn that mode off.  In the meantime, lets just say, there is never a dull moment in my house! 
I hope everyone is having a great summer and staying cool.  Of course, if you're reading this, you are automatically COOL! 


Oh good Lord!  I just looked down to see a diaper by my chair but no baby....he is now somewhere in my house naked. This cannot be good. I gotta go!!!!! 


Until we meet again!
Love, Kindness, Laughter, and Faith!
Meaghan

Outside the Box

Yesterday we spent the day with our very dear friends...We will call them the Browns. The Browns have a very large family which consists of A mama bear, a daddy bear, and 10 baby bears. Yes I said 10. Not to mention all the strays they graciously take into their home when one is in need. The Brown's definitely live outside what society considers " The Norm". And we all know that when one lives outside "The Norm", one is labeled with words such as weird, irresponsible, and strange. I've heard people say things like, Who in their right mind would have so many kids? They are so weird. I would NEVER do that. Have they ever heard of birth control?  And admittedly, I am guilty of some of these thoughts as well, but that was before I got to know them.  


You see, The Brown's, don't care what society thinks of them.  They are a God loving family, with bible based beliefs and values.  The baby bears address all elders as Mr. or Mrs. So and So. They have the type of manners that make parents like me, want to send my children to them for obedience training. And the absolute BEST thing about this family, particularly Mama and Papa Bear, is that they practice what they preach. They do not try to appear one way to the world, and a different way at home, like so many people do. They are The Browns, no matter where they are.  I have seen them in many different social settings, from church, to the grocery store, and they are who they are, and you can take it, or leave it. And that is what I, absolutely respect above all, about them!


You see, I was raised in a family that seemed to ONLY care about what society thought. I watched my parents, my mother especially, struggle to attain an upper class status in life. And I know that a mother only wants whats best for her children, and we got the best of the best when it came to "things", but we didn't seem to get the best of the best of her. Now don't get me wrong, my mother loved us and worked hard for us, but in the 15 years I knew my mom, I really only have sketchy memories of her worrying about getting "more" and "better" stuff. She wanted to keep up with everyone else, to live in the best neighborhoods, drive the nice cars, wear the nice clothes...but the fact of the matter is, we had all of that, but we never really had her. Then, in 1991, she was gone. She died at 41, from ALS. 


So, like the Brown's, I too, live somewhat outside "The Norm". I learned at an early age that life is short. Too short to worry about what people, who you don't know, and who don't care about you, think. I have had many lessons on this subject through out my life but the bottom line is this; God, my children, my husband, and my small group of finely selected friends, know that I love them because I TELL them. I SHOW them. I PRAY for them. They are the ones who matter to me. They are the ones who's opinions I value and who's advice I take. And though I am a respectful woman, I try to be kind to everyone, I care about what happens to all people, I advocate for different humane causes, I don't do any of this to gain a certain status in life. I do it because it is the way I want to live. It is the example I want to set to my children and those I care about.  It is who I am. And society can take it, or leave it. 

Love, Kindness, Laughter, and Faith
Meaghan

Fourth of July

Happy July 4th!  To me though, it's more like, Happy National Blow up your Paycheck Day, boys!  Yes, I am not a huge fan of the fourth of July.  I am a proud to be an American and all that patriotic stuff, but I truly believe that most people have lost sight of what Independence Day actually means.  To me, the Fourth of July has represented a day that I have to comfort whichever small child is out of his mind with terror due to the annoying and obnoxious fireworks. And that would be all of my children at some point.  None of them were ever fans of the "boom booms" when they were small.  And Olivia, is still not. My boys have become fans, but they are boys. Blowing things up and setting things on fire, is definitely a rite of passage for the male species.  Maybe it makes them regress back to their caveman ancestors...I MAN! I MAKE FIRE!!

Whatever your plans are today, BE SAFE! We have enough wild fires to contend with right now and having all ten fingers, comes in handy for most things...

Love, Kindness, Laughter, Faith!!
Meaghan

Here goes nothing!

Okay.  I did it!  I somehow managed to set this blog thing up, all by myself.  I am new to this, and am a complete blonde when it comes to the wonderful world of technology, so I am going to have to learn as I go and everyone will just have to bear with me as I do.  


It took me a while to decide to do this because I kept doing research on "what makes a good blog" and it kind of overwhelmed me.  Different How To sites kept giving all sorts of "tips" and recommendations, such as, have a witty title, pick one subject to focus on, keep it interesting, etc..... So with all that in mind, here it is.  My life is far too interesting/dysfunctional to just keep it to one subject. I have had such an array of experiences in my 30ish years, from losing my mom at an early age, to having a child with Down Syndrome, and A LOT, A LOT, A LOT, more in between! A LOT! So the one subject I can keep my focus on is LIFE.  I promise to keep it real, keep it honest, and hopefully make you laugh at times, too. 

So, a little about me....I am married to my best friend, Brian. No, seriously. We were 15 when we first met, after I moved to Kansas City when my mom was diagnosed with ALS.  He was the only person at that turbulent time in my life, that expected nothing from me and excepted me just the way I was. Which, back then, it is a miracle someone didn't kill me due to my horrible attitude!  After high school, Brian and I went our seperate ways. We both got married, had a few kids, and lost touch with eachother.  About 10 years and a divorce for each of us, Brian found me on a free Internet dating site that we both had only been on for a few days. Romantic stuff, huh?  Now here we are. A total of 6 kids between the two of us.  We have Kyle 17, Olivia 16, Brianne 15, Ian 11, Ruby 10, and our one, chromosomally enhanced, son together, Grant 2. And though we have our issues, we both feel we are finally exactly where we are supposed to be!

Now that the boring basics are out of the way, I hope you enjoy what is to come.  Please feel free to correct any grammar errors that you come across, as it has been a long time since English 101 for me.  Know that I tend to get a little exclamation point happy at times....ok a lot.  It's just my way of expressing myself.  Feel free to agree or disagree with me on my opinions. But remember we all have a right to our opinions and the freedom to express them.   

So, respectful, educated, and mature responses, (whether agreeing or disagreeing) will be the only kind of responses accepted. The rest will be deleted by the boss. Me. Because it's my blog and I can do what I want! So there! (How's that for maturity?)


Love, kindness, laughter, and faith!
Meaghan






*UPDATE*  I just got a call from my FAVORITE UNCLE PAT from Texas.  The word is accepted not excepted. Love to you!