The Last Day....

I can't believe it's the last day of October!!!!  Wow, time flies, huh?  So, the 31 for 21 blog challenge is over, but, I have to admit, I had so much fun writing these blogs this month, I hope to keep it up throughout the year.  Obviously not every day, but I promise to do better than I did last year.

The point of my blog this year was to raise awareness about Down syndrome, to help people understand that children with Down syndrome are just like all kids and should be treated equally.

I also wrote the blog to help new moms of kids with DS because no matter how great your support system is, and no matter how much you love your baby, it's still REALLY hard to hear that your child has Down syndrome.   It's hard for different reasons but it's hard nonetheless, so I wanted to let those moms know that it'll be okay.  It really will.

 And, it helps ME to remember how scared I was, to realize how okay we are now, which makes me think the things I'm scared of about the future also won't be do bad!!

Thank you all so much for your support again this year.  It just warms my heart so much.

We decided to end the blog with the 21 Things We Love Most about Logan (get it, 21, trisomy 21)

So, here goes:

1.)  His precious, sweet, pudgy little hands.

2.)  His heart.  He had a hole in his heart when he was born, but there's no hole anymore.  It's the purest, most perfect heart and it's big enough for him to love every single person he meets.

3.)  The way he talks.  This is a multifaceted thing, because, I love the mere fact that he CAN talk (thanks to Alicia!!!), I love all the things he says, and I especially love his deep voice and the slight Baltimore accent (LOVE).

4.) I adore his little love handles....so much!! I just want to pinch them ALL the time (sometimes I do and he gets REALLY mad)

5.)  Oh that beautiful blond hair.  I love the way it just falls, the way it bounces when he dances and runs, the way it curls up when it gets too long.

6.)  His hugs are the absolute BEST.  First of all, they're totally free to anyone who asks.  Some people I know (ahem...Maddie) are very selective about who they hug, Logan has been known to hug trees if asked.  He'll hug anyone.  And they're full bodied, arms wrapped around your neck, long, sweet hugs.  They're the best.

7.)  Okay, back to the talking.  Logan has developed a nice set of manners, so he says "Tank you mama" every time I do anything for him.  For example, he hates when I clip his nails, he flails about, and screams at me to "stop, stop, STOP"  But, when I'm done, he always says, "Ahhhh...betta, tank you mama."  I love it.

8.)  His smile.

9.)  "I do it self."  This is his "main phrase."  He's said it 20-30 times a day for the past year.  I know it's totally a 2, 3 and 4 year old thing to want to do everything themselves, but it just always impresses me about Logan because things are harder for him, but he still insists on doing everything himself.  And he ALWAYS does.  When things are hard for me, I ask for help.  When things are hard for Logan, he tries harder.

10.)  Logan is a snuggle bunny.  He loves to snuggle.  And, my favorite thing he does is when he curls up in our lap and pulls his little feet up under him, just like when he was a baby.  I hope his snuggling never ends.  Do you think when he's 13 he'll snuggle with me?

11.)  The way he runs is hilarious.  He sticks his tummy waaaaaay out, his head is back almost like he's looking up at the sky praying to God he doesn't fall, hands are up and out (like wings) and his hair is flapping all over the place.  He's also, almost always giggling  when he runs.  It never ceases to crack me up.

12.)  "How bout...."  Logan, just like his Daddy, takes his sweet time making decisions about the really important things.  We'll ask, "Logan what do you want...." and he responds, "How bout.....mmmmmmmm...."  All the while his little finger is tapping his chin while he's thinking.

13.)  His dance moves!!!!

14.)  Allllllllll the questions, allllllll the time.  "Cookin' mama?, Goin' mama?, Talkin' to mama?, makin' mama?"  I LOVE the questions.

15.)  Logan loves to watch football.  And, he seems to understand it  better than I do.  So, when something good happens, and I miss it, he yells at me to clap.  "CLAP MAMA."  It sort of makes me look bad, you know, that my 4 year old knows more about football than I do, but I don't mind because it's so darn cute.

16.)  How he loves to share.  He'll share anything with anyone because, as he says, "I wuv to share."  This might be the reason that Maddie is so unable to share, but, whatever, it's a good quality for Logan to have :)

17.)  Okay, I have to admit, this is one of my all time most favorite things about Logan.  When I pick him up from school, it's as if he hasn't seen me in months, he runs to me with a huge smile on his face, arms outstretched and just tackles me with his big, bear hugs, every day!!! Every day!!!  Seriously, it makes me smile thinking about it.

18.)  He's my yoga partner and he's way better than me.  Since he doesn't really nap too much anymore, I bought a couple of yoga dvd's which we do in the living room while the girls sleep.  He's really, really good at yoga and he often helps me get into the poses.

19.)  Just like me, he loves to cook.  So, in the evening, I can put on a show for Maddie and Logan and I go to the kitchen and make dinner.  He's honestly really good, and he enjoys it so much.  So now, I have dreams of opening a restaurant one day with Logan as my head chef.  It also explains his crazy love for the movie, "Ratatouille."

20.)  His resilience.  Logan definitely struggles with some things, but it never gets him down, he just keeps trying until he gets it right.  He also quickly bounces back when he gets a "boo-boo."  He often will kiss the boo-boo himself and says, "ahhh...betta."  Then is up and running again.  He's a strong little boy.

21.)  Most of all,  I love Logan's extra 21st chromosome.  Without it, he wouldn't be the sweet, wonderful, loving little boy that he is.

Thanks again for reading everyone.  Happy Halloween.

Well Done...

Today's my Dad's birthday and he wrote an awesome blog that is very well said!!!

Happy Birthday Dad.  We all love you so much.  Thank you for continuing to be such a positive, loving light in Logan's life....he certainly adores his Grampy :)

“Well done is better than well said…”

One of my favorite quotes since I always enjoy stories about everyday people who do extraordinary things and in the process inspire us to accomplish more than we thought possible. 

Ever since Logan was born four and half years ago we became part of such a terrific community of families organized together as the Chesapeake Down Syndrome Parent Group. They are truly some of the most caring, genuine and sincere people you could ever imagine knowing. The CDSPG  organization was founded in the early 80’s by a group of parents who were determined to make a difference for their children. Over the years they’ve done an inspiring job providing their local membership with a regular series of informal grassroots educational and social forums to raise awareness in the community and provide direct family support.

So what does all this have to do with Logan and the 31/21 challenge? For Logan and all the other children with possibilities it seems that quite a number of people who are reading, writing and commenting on this blog are thinking about the road ahead. Everyone seems to have such a strong desire to work towards a brighter future of inclusion for these children. It won’t be easy getting there. It will take leadership. It will take every bit of your energy, your enthusiasm, and your willingness to get involved, speak up and be an advocate.

Congratulations and thanks to all of the families of the CDSPG who have inspired our family and have paved the way to get it done in our local community. I have great confidence that through your dedication we now have a stronger and bigger family that is now poised to continue to get it done and make a difference well into the future.    

 

Georgie

Almost a year ago today, Sam and I "announced" that we were having a 3rd baby.  It was my Dad's birthday and we gave him a frame with 3 picture slots.  A picture of Logan was in the first slot, Maddie in the second and the third just said, "June 29, 2010."  No one got it at first, but when they did, there was LOTS of celebrating.

This morning, my precious little Georgia peach has her 4 month Doctors appointment and I'm thinking, "where has the time gone?!?!?!"  Honestly, she's growing up so fast and it's killing me.  I want her to stay a newborn forever!!!

Many of you have heard me say that Georgie is "my favorite."  And, I just want to clarify a little as that apparently makes me seem like a bad mom :)

Georgia is BY FAR the least stressful of all my babies.  I'm sure you all know why Logan was stressful and Maddie, wow, she just about killed us with her crying. ALLLLL the time.

Georgie is basically a mini-Logan without all the stress.  She's snuggly and smiley and so, so, so sweet.  She smiles, laughs and giggles at everyone.  She actually rarely cries unless she hungry or tired.  She's just a dream of a baby.

So, I just wanted to share that with you.  In case there's someone out there who has a baby with DS and is scared to have another one.  It CAN be a joyous occasion, it WILL be!! I promise.

Also, while Maddie's labor was so scary, Georgie's was AWESOME!!!  It was like a party in the delivery room.  I'll remember it for the rest of my life.  It was a blast.  And, in case you're wondering, we had ZERO tests done while I was pregnant with her.  I mean NOTHING.  We didn't even know if she was a boy or a girl (although I knew she was a girl all along).  And, it turns out, not having the tests done were less stressful for me that having them done.  I was just able to enjoy being pregnant with my peach :)

Georgia has recently started "singing" and giggling so I took a little video of it to share with you.  I'm pretty sure it's the kind of video that only a mother would truly love, but I'm sharing it anyway!!!

Follow-up from Lulu

While reading Katie's post about my dad and how he lives on in Logan, it made me realize just how strong her faith is. We all have come to rely on our faith through difficult times and it is that faith that helps us see that everything happens for a reason in all of our lives. Yes, it is easy to say, and sometimes hard to understand why we are given some of the challenges that we face. but it is those challenges and how we handle them that make us the people that we are. I truly believe that God chooses, very carefully, who he will send these very special, wonderful babies with Down syndrome to.We must have done something very right in this life to be given such a gift as to have them in our lives. Since Logan has joined our family, he has brought a close family even closer and we have meet some of the most wonderful people through the CSDPG, people we may never have met, that have truly enriched our lives in so many ways. The bond that we have with all our other friends has grown even stringer and the love and support to Logan and his family is overwhelming. We have all been blessed to have Logan teach us so many new things about ourselves and about our faith. I know this is very deep, but sometimes, it just has to be said.  

Sent from my iPad

Linda Galvin Anderson

1246 Clearfield Circle

Lutherville, Md 21093

410-440-4009

irishchance@aol.com

Bill

I'm writing this post on Monday night.  The kids are asleep and I have a glass of wine in my hand and I'm already crying.

(Sigh) So, I'm writing about my Bill tonight because Tuesday, October 26th, is his birthday.  He would have been 80 years old today.  But, Bill passed away 5 years ago.  And, believe it or not, I still miss him, so much, everyday.  I'm still shocked that he's gone.  I can't believe it.

Bill was my grandfather, my mom's father, and, truly an all around awesome guy.  He was, and still is, one of my favorite people.  I can't even think of words to say about him because he was just so great.  He was funny, and handsome, and kind, and witty, and strong, and so smart, and very crafty.  He was just amazing.

Truly, one of my biggest saddnesses in my life is that Bill will never meet my children.  It breaks my heart.  But, I have a secret to confess, I feel like Bill knows Logan already.  I felt Bill's presence so strongly when we were in the NICU and I still feel him around Logan from time to time.  It's such a peaceful, reassuring feeling.  I think the reason I feel Bill around Logan is because Logan is SO much like Bill.  He's easygoing and funny and kind, but doesn't take any BS from anyone.  I feel like Bill guides Logan a lot, and I know he always will.

So, while I'm still so sad about losing Bill, and I miss him so much, I know he's with us.  I know he knows my little angel, because I believe he played a part in Sam and I being "chosen" as Logan's parents.
Thank you Bill.  We love you so much.  Always.

My Uncle Blake pointed out that you never know how much people mean to you until they're gone. 
I hope you get the chance today to tell someone that you love them.

Logan and Maddie

Ha! Where do I even begin with these two!!!  Trouble, trouble, trouble.

I guess I'll start at the beginning.

Sam and I always knew that we wanted our children to be close in age.  So, when Logan was about 9 months old we began talking about having another baby.  Almost exactly a year later, Maddie May entered our lives.  And what an entrance she made....

My pregnancy with Maddie was stressful.  Why?  Because I was so, unbelievably scared that something would go wrong.  See, when I was pregnant with Logan, I was blissfully happy.  I was pregnant with many of my girlfriends, which was awesome, and every night I went to bed dreaming about my beautiful, perfect baby and every morning I woke up with a smile on my face.  Even labor with Logan was wonderful.  I LOVED it!!!

Until they took him away from me in the delivery room, blowing oxygen in his face, and worried looks on theirs.  That's when things changed for me.

I went from being blissfully happy to, ummmm, cautiously skeptical?  Yeah, I guess that's a good way to put it. Which is why I decided to have another baby, despite being scared, we went for it, cautiously, skeptically.

So, scared during my pregnancy with Maddie, and, consequently, a little grumpy (according to Sam and my mom) and, literally, terrified during her birth, which lasted an excruciating 18 hours.  Excruciating because I was FREAKING out!!!  So, so, so scared of what was going to happen.  I think I even told Sam that I didn't want to "go through with it" I wanted to go home...lol.

Anyway, Mads popped out at 11:23 p.m. and was totally fine...sort of.  She cried A LOT!!!  I mean A LOT. All the time.  ALLLLL the time.  Get the point?

It makes me laugh now, I mean really laugh.  She was a trip, and she still is.  She's a feisty, sassy, spunky, incredibly smart little peanut.  I love her to death, but man-oh-man she drives me crazy sometimes.

She also drives Logan crazy, A LOT.  But, you know what, they are truly best buds (most of the time).  They cause a lot of trouble between the two of 'em.  One's a little devil and one's a little angel.  Depends on the day which is which.  I know most of you are thinking Logan's probably, usually, the angel, but that is NOT true.  Maddie's a loud child.  When she does something bad, everyone knows about it.  Logan's the silent, mischievous one who constantly eggs her on, causing her to get in trouble while he smiles his sweet little smile and escapes punishment. 

Today, we were having a picnic outside.  A breakfast picnic, and Logan polished off his pancakes pretty fast, then started eying Maddie's.   She's very slow and deliberate about how she eats, she doesn't just shove it all in like her brother.  She notices that he's looking for seconds and she flat out tells him "Do NOT take my pancake Logan."  "Okay," he says.   So he's looking around, acting all nonchalant, then gasps and screams, "A bunny!!!"  Maddie turns her head to look, he grabs the pancake and takes off in the opposite direction.  a.)there was NO bunny b.)  he should have been a little more stealth about it, but running was NOT the way to go.  She takes off after him, and is much, much faster than he is, grabs him by the shirt, pulls him down and grabs the pancake.  He, of course, starts pretend-crying.  She feels bad so, bless her heart, she say's "okay Logan, how about you can have half of mine?"  He says, "okay" and off they go, holding hands, back to the blanket.

This is the nature of their relationship.  They fight, hard, but they love each other harder.  They're definitely worst enemies a lot of times, but most of the time, they're best friends.  I love watching them play together and I pray they'll always love each other this much.

Someone recently asked me if I thought Maddie knew Logan had Down syndrome.  I don't think she knows and, truthfully, I don't think she'll care when she does find out.  To her, Logan is everything a big brother should be.  He irritates her, he picks on her, he loves her, he protects her and he takes care of her.  To Maddie, Logan is just her big brother, but also her hero and I have a feeling he always will be.

CDSPG

Whoops, forgot to write yesterday!! Does it count if I write ABOUT yesterday, do you think? 

The reason the blog slipped my mind is because we had our first annual CDSPG bull roast yesterday and I was feeling slightly stressed about it.  Tricia and I recently took over as co-presidents of the CDSPG and we just have so many things going on I was worried that we hadn't paid enough attention to the bull roast.  However, it turned out to be a phenomenal event!!!  The people who put it together could NOT have done a better job.  It was such a well run event, and I think everyone who went had a blast.  I know I did!!

I remembered something yesterday, as I looked around the room at all my friends, that made me chuckle.

When Logan was first diagnosed, the Doctors at Hopkins were SO positive about his diagnosis(I firmly believe that their attitude is the reason that Sam and I handled the news so well).   Anyway, they were constantly reinforcing that DS wasn't that scary, and that everything would be okay, and the day after Logan was diagnosed, one of the Residents brought me the CDSPG post card with all the contact information.  She said, "This is a great group of people, you'll love them and, just think, you'll have a whole new group of friends." 

This sort of irked me because, I thought begrudgingly, I don't NEED or WANT anymore friends (I was still a little bitter).  However, I called them, and went to a few playgroups, then the adult social, then the new parents brunch and, slowly but surely, started to get more and more involved, and somehow I did end up making a whole new set of friends.  And, let me tell you, I LOVE that I've met these friends.  They ARE the greatest group of people.

I feel so blessed to have Logan in my life for so many reasons, one of which is my "new" group of friends.  These are the people who will always understand what I'm going through.  And, because they know, they'll always be there for me, and I for them, when we need each other.  It's such a warm feeling to know that we'll be in each others lives literally for the rest of our lives, and that we don't have to "go it alone." 

This isn't to say that I don't love and appreciate my other friends, I already wrote about how much they mean to me!, but this is a different kind of love and support and I'm eternally grateful for the amazing group of friends I've met because of my precious Logan!! 

I'll attempt to put pictures up from the Bull Roast later, I'm not very good at figuring this blog thing out so, fingers crossed, I'll be able to do it :)

Happy Sunday and GOOOOOOO RAVENS!!!!

Big Brother

Jen and Brian have been friends of ours since High school and we LOVE them to death.  They are 2 truly wonderful people.  They were the first in our "crowd" to have a baby and he's just as wonderful as they are.  Conor Nicholas is now 8 years old and we really, really love this kid. 

I mean, honestly, Conor is one of the greatest kids you'll ever meet.  He's a super sensitive little boy with a huge heart.  He truly looks after all of our little ones.

We're all lucky  to have Conor in our lives, but our kids are especially blessed to have him as their "big brother."

Thanks Conor for this super sweet, funny, heartwarming post.  Logan, Maddie, Georgia, Sam and I love you!!!

From Jen (Conor's mom)

When the five of us finally sat down for a family dinner on Sunday, I asked Brian about his blog writing status for Logan.  We decided that this year another member of our family would write about Logan.  Not surprising, Conor immediately asked what we were talking about.  I told him about Ms. Katie's blog for Logan and how different people were writing to and about Logan through the blog.  It just so happens that Conor is working on pen pal letter writing in school.  He asked if he could do one.  I decided that the first person to get me their letter would  be the "blogger" for our family.  Again not surprising, Conor came back first with a letter that he had written to Logan.  Here it is (unedited and all despite the English teacher and mom in me!).

Dear Logan,

As the oldest kid in my family and our moms and dads' friends, I feel like the oldest brother of everyone.  I like to watch over everyone to make sure that nobody gets hurt.  So I decided to tell you about some "life lessons" about school, third grade, and everyday life that I have learned.
1. Have fun everyday
2. Always listen to your teacher
3. Always read
4. Don't go in the girls bathroom
5. Don't get caught picking your nose
6. Lock your bedroom door so your sisters can't get in
7. Unlike my brother Brady, always wear underwear
8. Just be yourself!!!

Logan, you are an awesome kid.  I will always watch over you.  I am happy to have you as a friend and "little brother".

Your friend,
Conor

Special Friends from the Special Olympics

Sam and I met Tom and Kelley Schniedwind about 4 years ago when we first formed "Logan's Heroes" for the Special Olympics Polar Bear Plunge.


Tom called Sam on a cold Sunday afternoon and asked if Logan would be the honorary chairman of the plunge.


We were beyond thrilled, but, more than that, the plunge, and the folks at Special Olympics, really, really changed our lives.  They completely embraced us , and have loved us, and Logan, ever since.


Kelley has written today's blog and, in it, she talks about "how remarkable" our family is.  But, as I've said, many, many, many times we're only this way because of the love and support of YOU!!!  


So, not only does Kelley work at SOMD, but she's honestly become a great friend of mine.  I adore her, and I think SHE'S an amazing person and mother.  


I really appreciate her unique perspective, because she's one of the few people who can see and understand mothers of children with disabilities and mothers of children without disabilities.


Thanks Kelley and Tom for taking the time to write such a GREAT ;)  message.  I, for one, really appreciate it.


xoxo

I want to preface this post by saying that I am not a parent of a child with DS, or with an intellectual disability.  I am fortunate enough to be an 11-year veteran of the staff of Special Olympics Maryland, and I am a mom/stepmom of 5 children ranging in age from 15 to almost 1 year.  I say this because while I, as a result of my job, have perhaps a better understanding than some about the struggles and challenges that Katie and all the other moms face, I am still very much on the outside looking in.

There are so many ways I could have gone with this post, and I have been thinking about it for days now.  I have had the privilege of getting to know Katie, and Sam and Logan and without a doubt, my life is better because of it, so I could talk about that.  I could add to what has already been said about what a bright light Logan is, and how is more like my 3-year-old son than he is different, because all of that is true too.

But as a mom, I thought I’d take the time to tell Katie something.  I have been reading the blog, and every time I do, it reminds me of what I find most remarkable about Katie…and that is just how unremarkable having a son with DS has been to her.  Katie (and Sam too, but for now it’s all about Mom!) has completely taken it in stride that her first-born child happened to have that extra chromosome.  One need only spend five minutes with them to understand the meaning of seeing the person and not the disability because this family lives that.  It is as if Katie was hand-selected to be Logan’s mom…and well, maybe she was.  Now that she has added two daughters to the brood, it is even more evident that Logan is just one part of a busy family of five – albeit a very, very happy part!  Yes, Katie worries, but even in the limited time  that I have spent with her and her family, I can sense that she has never for one minute asked “why me?” or wondered what if would be like if Logan were “normal.”  Actually – I know that for a fact, since she just recently said that she would never want to change Logan.

So I see this and I admire it and I wish the whole world would understand what Katie does – that Logan is a gift to us all, if only we are wise enough to see the person and not the DS.  

But I also know that while I worry about whether or not the other kids in pre-school will like my 3-year-old son, Katie wonders whether the other kids will even give Logan a chance.  I fight daily battles with my older children to get them to study, while Katie fights a different battle to allow Logan into the classroom.  I am working hard now as a parent to prepare my children to be independent and go out into the world, while Katie evaluates that on a completely different scale and her worry about what will happen to Logan after she’s gone takes on an entirely different meaning than mine.

Because I can’t take on her struggles or her challenges anymore than I can know the rewards of being Logan’s Mom, what I would like to do is make Katie a promise.  I promise to raise children who DO see Logan for Logan and not define him by his DS.  It’s not a perfect world and one thing I do know from my work at SOMD is that there is too much hate, intolerance and ignorance out there.  But all of us moms can be a part of the solution by teaching acceptance and love, and helping this next generation to see that different is not a bad word and that intolerance of others just won’t be tolerated.  I want to live in a world in which Logan has all the same opportunities as my children – a world in which Katie’s worries are the same as mine and every other mom’s.  I can’t change the whole world, but if feeling loved, valued and respected by one more family matters, then at least it’s a start.

High Expectations

So much to say about the wonderful lady/family who wrote today's post.  Kate Miceli Lepley and I went to high school together, although we graduated in different years.  We became good friends when she was pregnant with her first child and I was pregnant with Logan.  NOW, Carter (Kate and Barry's son) and Logan go to school together.  Logan adores Carter because he is sooooo "super cool." 

Barry and Sam are also great friends and Barry is a loyal, loyal plunger every year.  Barry is also a nurse anesthetist at GBMC and always helps us out when we have to go there:) 

Barry and Kate are all around awesome people, they truly are.

They also have a beautiful niece, Megan, who has a loss of genetic material on the long arm of chromosome 15.  This is a rare genetic disorder that the docs at Hopkins don't know much about.  So, of COURSE, Katie and Barry have stepped up to be the wonderful Aunt and Uncle that they are, and are helping to raise money for the Miracle for Megan foundation that Kate's brother and sister-in-law started.  The foundation has three goals:

1.       To provide funding for research and equipment for therapeutic centers working with children with genetic disorders.

2.       To provide funding for key neurological research facilities, to increase early detection, identification, treatment, and possible prevention methods for genetic disorders.

3.       To fund a scholarship program for the families who have children with genetic disorders who require assistance in funding medical care and education.

On October 30, 2010 the first annual Miles for Megan 5k and Family Fun Walk will raise money and awareness for people with genetic disorders.   Please, please, please join us at this amazing event!!

http://www.miracle-for-megan.com/events_2.html

 Meanwhile, enjoy the post that Kate has written, it's so insightful!!

Thanks Kate, Barry, Carter and Brooks :)  We love you guys!!!

           

My blog entry is all about expectations. As parents, we are filled with these! Some are realistic, like expecting that your child will be polite, and others, not so much… (Like expecting that they will be polite 100% of the time)! What I would like to write about is the importance of having high (but realistic) expectations for your child. When I think about Logan, and how amazing he is, I also always think about his amazing parents and the role that they have played in helping him to be exactly who he is: a smart, kind, loving and sweet boy! Katie and Sam have always put Logan first, not his diagnosis of Down Syndrome. They shower him with unconditional love and support. They are constantly providing him with opportunities to grow and learn and never miss a chance for Logan to experience all of the joys of being a kid. Through their example, they have helped to teach their family and friends to have high expectations for Logan too, and are helping to change so many people’s views of children with Down Syndrome and other disabilities.

In my work as a teacher / school counselor, I have found that the more you expect of children, the more they rise to the occasion and meet your expectations. Children need adults who believe in them and treat them as if they are capable of achieving whatever they set forth to accomplish.

 “When children are given responsibilities and held to expectations, the message is clearly communicated that they are worthy and capable of being contributing members of the family.' 'For families to create environments that are caring, have high expectations, and have opportunities for participation, they, in turn, must exist in communities which also provide support and opportunities”

 These are not my words but are from a book about resiliency and positive outcomes for children. They resonate with me more than ever now that I am a parent and I often think about this when I am watching my husband let our almost-4-year old use a real hammer or saw. Inside, I am dying thinking about my child losing a finger or two. But my husband always lets our boys try things and help ‘for real’ around the house with odd jobs. To see the looks on their faces when they get to use real tools, or help push the wheelbarrow, is priceless. They are thrilled that their dad thinks of them as big enough and strong enough to help out. These are the kinds of experiences that help to build a child’s sense of self-worth, of importance, and of belonging.

The quote also fits perfectly for Katie and Sam, since they are constantly giving Logan the opportunity to experience all that life has to offer. He plays soccer, goes to preschool, has play dates, and even does a little spokesmodeling, when he has the chance, for the polar bear plunge. Katie and Sam have never put limits on what Logan can do, and for this, he is rising to every occasion! Through their example and their advocacy, I know that they will change many lives, as they have already changed Logan’s!

Today

I didn't get to this today.  Today was a busy day.  It was the only day this week that Logan and Maddie have school so I had to do a lot of errands while they were there.  Then we had lunch with Lulu and Darbs, then we came home and I realized my house is a disaster zone.   Now, I literally have 5 minutes until I leave for work.  HOwever, I promised to do 31 entries this month, and I'm going to do it!!!

I did want to share a quick story that brightened my day yesterday.  I decided to take the kids to get their pictures taken yesterday.  I hired an awesome, excellent photographer, dressed the kids in their BEST clothes, packed oodles of delicious, super yummy snacks, and off we went.  All the way there, I was trying to build it up (particularly to Maddie) about how great it was going to be, we were going to be like models.  To Maddie, I said, "You're going to be a beautiful princess, just like Ariel."  She was pumped.

Then we got there and she froze.  She could NOT make herself smile.  Seriously, it would have been hilarious if I hadn't been so pissed.  She wouldn't even LOOK at the camera.  I tried everything, "pizza for dinner, ice cream for dinner, McDonalds for dinner, lollipops for dinner, a new princess movie, ANYTHING YOU WANT!!!!"  I was also trying to be nice in front of the photographer, but on the inside I was screaming, "Ahhhhhh....JUST SMILE"  I even started talking to her through my teeth, you know, so the photographer wouldn't here my threats..."you get over there and hug your brother and sister or else....."

Anyway, it didn't work.  She just kept staring blankly at the camera, then she gave up and just frolicked and skipped around the field while Logan and Georgie laughed and cooed for the camera.  We finally got one picture with Maddie and she ended up growling at the photographer.  Nice manners, huh?

On the way home she was in a delightful mood, talking about how great it was to be a model.  WTH?!?!?  I thought it might be a good opportunity to talk about how it's not really nice to growl at adults.  I was going on and on and on about how we should try to be nice to grown-ups, and really all kids, and blah, blah, blah.  And she was totally not getting it.  Apparently, she likes to growl at people and why should she be nice to people anyway?  This went on and on and on, and I could tell Logan was getting irritated with us because he wanted to watch the Transformers movie I had put on for him as a reward for being so good.  So, Maddie's questioning me, and I'm trying to explain WHY she should be nice to people and all the sudden Logan blurts out, "because it makes everyone happy!!!!" 

Silence in the car.  I was stunned silent because, duh!!!!, that's exactly why you should be nice to everyone and Maddie was stunned silent because it made sense to her.  She goes, "Oh, I like to be happy.  Okay, Logan, I'll be nice from now on."  End of discussion.

Thank God for Logan, you know.  He's totally going to keep this family in line for the rest of our lives.  He just gets life, plain and simple.  He's one amazing kid (although sometimes a pain in the butt).  Very insightful though :)

Also, please, please, please read this tomorrow and Thursday as we have 2 really great posts coming up!!!


Enjoy your rainy Tuesday:)

Friends Are the Family You Choose

I've been thinking about this post for a long time.  I want to write about how great my friends are and how very, very much I love them.  I sometimes, no, actually, a lot of times, feel like my friends save me.  They pull me out of the darkness that sometimes I let engulf me.  You know, those times when you're just feeling so overwhelmed with life, and everything is stressful, and you feel like just curling up with a snuggie on the couch and watching reruns of The Real Housewives of.... over and over and over again?  Maybe that's just me....

But, it's amazing to me how just a quick chat with a good friend can snap you out of that.

When I first had Logan, I spoke with this woman who had a child with DS and, I mentioned the support of my great friends, and she basically told me that she wasn't friends with any of her "old" friends anymore, she was only friends with people who had children with disabilities.  This DEVASTATED me as I already was scared that I would lose all of my friends because we would be living different lives.

But, guess what!!  That's NOT true.  It's not true at all.  You can NOT let that be true.  Because, if you do, then you're letting Down syndrome define you.  You're letting it define your family.  And, worst of all, you're letting it define your child.  And you must NEVER EVER EVER do that.  Down syndrome is ONE characteristic of a million that are you and your family.

So, anyway, back to the friends.  Last week was a particularly hard week.  Not because of Logan, or really anything to do with Logan.  It was just super busy and I was feeling tired and drained.  And, it amazed me, each day how a quick phone call, a donut with daughters, an evening pedicure/sippy cup of wine:) and a chaotic family dinner made me feel so much more energized!!!   It's remarkable the strength you can gather from your girlfriends, isn't it?

Everyone knows that I love my family to death.  But, I also love my friends to death and appreciate everything they do for me.  So much!!  Love you girls:)

My Sweet Boy

Today I had the absolute pleasure of going to the grocery store with JUST Logan.  What a delightful trip it was!!! 

First of all, Logan is so un-spoiled that when he asked for things, and I said "no" he did NOT have a temper tantrum (Maddie has 20-30 temper tantrums a trip).  Amazing!!!  He just said, "Okay mommy!!"  

He also said hello to every person that we saw.  And, the best part was, everyone said "Hello" back (this doesn't always happen).  I guess there were some happy people at Safeway at 8 a.m. :) 

So, next we went to the butchers and asked for some steak.  Logan was SO excited to have steak for dinner, he kept screaming, "I love steak"  The butcher was cracking up.  Then, the nice butcher, showed Logan how he was cutting the meat.  Logan was like, "Wow...cool."  It was so sweet.

We finished our trip, checked out, grabbed our bags and headed out the door.  Logan took a bag from me and said, "Here mommy, let me help"  And, he carried it to the car. 

When we got all strapped in he said, "thank you mama."  I love this kid.  How great is he?  He THANKS me just for taking him out.

Such a sweet, precious boy.  Not sure what I did to deserve him.....

Gifts

Love, love, love this video. The book, Gifts, is one of the ONLY books about kids with DS that I recommend. It's the only book I read that didn't scare or depress me.

Questions, Questions....

Someone asked me this weekend, "what are some of the worst things people have asked you about Logan?"  And, I had a response right away, but, as I thought about it some more, I realized there aren't A LOT of things that have offended me over the past 4 years.  Obviously, there are a few, but in general, I'm just really happy that people care enough to ask questions.  I understand that not everyone knows EVERYTHING about Down syndrome, I don't even know everything about DS, but I WANT to share the knowledge that I do have.  So, please, keep asking me questions.  I probably won't be offended, and I love to talk about it and raise awareness.  I also realize that sometimes, in an effort to be "politically correct" you feel like it's better to not say anything at all.  I do NOT agree, ask questions!!!  Show you care, we'll tell you if you aren't being "PC."  Hahaha.

However, their is one question that one person asked and I want to set the record straight right here right now.  Not in 1 million years, not for 100 BILLION dollars would we ever, ever change a thing about Logan, extra chromosome and all.  We feel the same about our girls as well.  We love, and cherish all of our children.

We are so eternally grateful to be Logan's parents.  We feel like we were chosen for a reason.  The hardest thing about being Logan's parents are that we know the stereotypes about people with Down syndrome and it's hard to realize that people sometimes think those things of our child.  But, we try, every day to dispel those myths and stereotypes.

So, please, please, please ask me your questions, tell me your thoughts and share what you know with others.

College!!!

Dan and Janet Weller are two of our oldest, and dearest friends.  They were also among the first to truly, truly love and accept Logan.  I don't know why, but I remember, so distinctly, them coming over one Sunday morning to play with him and I could just tell that they really loved him and did not care that he had Down syndrome.  You know, it was scary in the beginning, wondering if everyone would accept him, if everyone would love him.  So, it was so reassuring that they did.  And, they have ever since.
What Janet's written about is amazing!! She's definitely gone above and beyond and has done some very in-depth research and has gotten information that could help so many children.
Please, please take a minute to read her blog/article and pass it on to ANYONE who may benefit from this info.
Thanks Janet!!!  We love you guys so much :)

First, her email to me:

Hi Katie,

I've been following your blog this month (I even have it as a bookmark app on my phone!) and have been working on an entry, if you'd like to use it. I had wanted to write something last year, but found myself swamped and never put it all together. I decided this year I would finish what I started last year.

I could easily have written about how much Dan and I love your family and have been challenged and changed by knowing Logan, but I thought that I could possibly do even more good if I tried a little "professional soul searching." In school counseling, one of our largest roles both in the school and in the community is that of advocate. As a college counselor, I asked myself last year, "What can I do to advocate?" So I started doing a little research and this year was able to polish an entry that I had started about college access for students with DS (and other cognitive disabilities, but inspired by Logan and others with DS). I hope this isn't too "clinical" for your blog, but I know I'll keep learning about this and wanted to get the word out there about it. I think that too many people discount the ability of those with DS to attend college -- we shouldn't be doing that! The information that I found also further supports the importance of inclusion (I mention it in here). 

Now, the article:

It’s October 1 and I’m sitting in my office across from a young woman who has moments ago collapsed into a puddle of tears. She struggles with math. Her Mathematics portion of the SAT was too low for her first choice college, and she is devastated. “I won’t get in anywhere!” she moans. Her grades in the subject are no better, and if I’m being honest, it’s not just math. US History and Spanish are flagging as well. I ask, “What have you been doing to try to work through the tough concepts? Have you seen your teachers for help?”

“No. I haven’t had the chance.”

“No free periods or after school hours?”

“No. I’ve been too busy.”

“What if we went together to make an appointment for you to see the teacher, say, next week? That way you could plan in advance to use that time for extra help.”

“She doesn’t like me.”

“I’m sure that’s not true – teachers really want to help. I promise. Really, they do. What evidence do you have that she doesn’t like you?”

“Well…”

And so it begins. College Counseling really is counseling, in case any of you doubted! But as I mentioned, this is October 1, and I know that Katie has started her month-long blog to help raise awareness about DS. So, as I am working through the stages of Cognitive Behavioral Therapy with this tearful self-diagnosed dysgraphic teenager, I am also thinking somewhat bitterly about how good she has it. “Bad at math.” I was bad at math, too, I think. I turned out pretty much okay. Try having challenges that you can’t overcome by simply going to see the teacher for extra help.

I have a hard time, sometimes, with privilege as it relates to my job. In my field, we talk often about learning disabilities and access issues, equity in higher education and colleges that open doors. I have a listserv communiqué saved in a resources folder on my computer that lists colleges for the underachiever, colleges for the “B” student, colleges for the kid who needs a second chance, and a list of colleges where students ADHD will find resources. Where would I counsel a student with Down Syndrome to look for college, I think to myself, handing my weeping young friend a tissue.

I have never doubted that Logan can attend college if he chooses, and I’ve always hoped that Katie and Sam will allow me to help advocate for him when the time comes. At present, fewer than a quarter of these students earn post-secondary degrees, but as recently as this past summer, new initiatives were begun to address this issue and there is a lot of reason to hope. There are only around 150 known programs of post-secondary study – with differing rigor and structure – currently in place (compare that with over 2500 four-year traditional undergraduate programs and 1700 two-year certificate or associate programs). Congress reauthorized the Higher Education Opportunity Act in 2008 (it was implemented this past July), however, which has provisions for improving the quantity and quality of post-secondary programs for students like Logan. In addition, the HEOA allows students with intellectual disabilities the opportunity to apply for and earn Pell Grants, Supplementary Educational Opportunity Grants (SEOGs), and Federal Work Study Program.

But policy work can only get us half of the way there. The other half has to do with the student’s own readiness for college, and that piece of the puzzle relates back to one of Katie’s earlier posts about inclusion. Advocates are loudly acknowledging the role that inclusion plays in keeping students with intellectual disabilities motivated, prepared, and challenged to the level that they will pursue higher education. In a February 2009 article in U.S. News and World Report (See? They do have valuable information about college if you ignore that odious rankings list!) featured an interview with Stephanie Smith Lee, senior policy advisor for the National Down Syndrome Society, who extolled the virtues of inclusion in helping students with DS achieve college readiness. A quote from the article:

“Inclusion helps young adults with intellectual disabilities expand their independence, their ability to earn competitive wages, and their ability to be part of a community, Lee says, adding that these are the same skills any college student gains by attending an institution of higher education. Whether students audit one class a semester, challenge themselves to take a few courses for credit, or spend an entire semester simply learning how to take public transportation to and from campus independently, Lee says the benefits of these experiences are evident.”

Lee’s own daughter has DS and dreamed of attending a four-year college. At the time, there were no programs of post-secondary education that would support her in the Washington, D.C. area where the family lived. So, Lee worked with George Mason University to form one that is now recognized as one of the best in the country. Other such programs exist at Mount Aloysius College in Pennsylvania and Becker College in Massachusetts. At the certificate/associate’s level, the Inclusive Concurrent Enrollment Program at Massachusetts Bay Community College is recognized as a leading model. And the numbers are growing. Since the HEOA monies began being distributed at least 54 new programs have been identified or started.

There’s a lot more to learn about HEOA, IDEA, ADA and other policies that support the effort to provide access and equity to students with cognitive disabilities. I plan to study up and use my area of expertise to advocate as best I can. My inspiration to do so is that sweet, funny, kind, stubborn, one-of-a-kind towhead that we all love, and also:

http://www.nytimes.com/2006/11/05/education/edlife/downs.html?_r=1&ex=1167022800&en=dd486b1d3ab1f740&ei=5070

http://stoloff-law.com/blog/college-bound-students-with-intellectual-disabilities/

http://www.thinkcollege.net/

Logan's Slideshow

Good Morning!!  Running VERY short on time today, crazy busy day.  So, I thought I would share with you a little slideshow I made of the first 2 years of Logan's life.  I made it to show our to our newest members this weekend at the Chesapeake Down Syndrome New Parents Social!!  I hope you enjoy.
And, please check back tomorrow for an amazing post written by my friend Janet.  It's DEFINITELY a must read!!!
Have a great day everyone :)

Make a free slideshow design

Best Buds

About 6 weeks after Logan was born, another little angel entered our lives.  Declan O'Conor Bell was born on July 8th and he and Logan have known each other since then.
We did everything with them when the boys are little and this is the first year they're not in some sort of activity together.  We miss them, but luckily see them often.
Declan is an amazing boy, who comes from an amazing family and we're so blessed to have such wonderful friends in our lives.

Here's from Molly and Declan Bell:

Last year Dyer and I expressed how much Logan has touched our lives in these past four years.  For this year’s Downs Syndrome Awareness month, our son Declan wanted to share some of his thoughts.  I was happy to be the conduit because it’s always refreshing to look at life through the eyes of a child.  His words are not profound, but indeed sincere.  After hearing what Declan had to say, I’m even more grateful that my sons have Logi as a friend because he makes all of our lives a thousand times richer just by being a part of them.  We don’t think of it as having a friend with Downs. Logan is just our friend. A great friend, but just a friend, like all the rest. However, we’re not the same as any friend, because God made us each unique, just like snowflakes. Some of us are tall, some of us are not. Some of us have glasses, some of us don’t. Some of us throw righty, some lefty. But, Logan did Gymboree, Declan did Gymboree. Logan sings and dances, Declan sings and dances. Logan enjoyed playing at co-op, Declan enjoyed playing at co-op. Logan talks a lot, Declan talks a lot. Logan loves donuts, Declan loves donuts. Yep, NDSS is right, they are more alike than different!

My Friend Logan

“Logan is my best friend ever. And, we have been best friends, forever. Since we were tiny babies. We have so much fun together.  I love playing lacrosse, teeball, basketball, soccer and golf with him. He is really great at playing dress-ups too. One of my favorite things to do with him is go to the Fourth of July parade. I hope we always do that. Logan is a really good talker. He is always nice.  He gives really good hugs and high fives. And, he always lets Mac play with us.  I just love Logan with all my heart. I think he has really cool eyes, cool shorts, cool shoes, and awesome baseball bats. God made Logan extra happy.  I’m so glad I get to be his friend.”

~ Declan Bell, 4 years old

Follow Up

So, I've gotten A LOT of feedback on my post about Logan having friends.  It seems that a lot of us worry about this!!!  My sister and my mom also reminded me that I used to worry about my brother and father having friends.  Apparently, according to Darbs, I used to get upset when my Dad traveled because I was concerned that he had to eat dinner alone.  I wasn't kidding when I said that I worried A LOT about EVERYTHING.  I really do, and always have.  But, I really appreciate the phone calls, emails, and facebook messages that, a)promised me that I was not alone and, b)reassured me that Logan will have friends.

Really, I just feel like we are so unbelievably blessed to have the most amazing support system in the world.  A big part of me really wants to name names of all of you out there that constantly go above and beyond for us, that are ALWAYS there for us and love us and support us uncondionally, but there's the reasonable, logical part of me that knows I'm still a sleep deprived new mom who's SURE to forget someone and I'm not willing to take that chance.  Sorry!!!  However, I'm pretty sure you all know who you are, and we love you and will always be eternally grateful to you!!!

Also, as part of my follow up on the friend post, and the Hunt's post, I want to share a little email I got from Logan's teacher this weekend.  Again, reiterating that she is the BEST teacher EVER!!!!  She is amazing!! Thanks Ms. Kelley!!!  We love you :)

From Kelley:

Ok as I sit here and try to see the keys to type I'm wiping the tears from my cheeks.  OMG!!!!  I was just reading your Blogs and I read the one about Logan at Hunt's.  WOW!!!  For some reason it is making me cry like a baby.  Just reading that you are so happy with Hunt's and the nice things you said about us makes my heart so happy!!!  So as I sit here and cry happy tears I thought I would comment on your Blogs. BUT I DONT KNOW HOW!!!!!  How do I become a follower if I don't have a Goggle account?  How do I write my own Blog?  I love this idea!!!  If it is too hard to explain in writing I can wait until Monday and you can tell me how to do it.  I'm going to print that Blog and show it to the teachers at Hunts.  Also, the one about you worrying about Logan having friends.....All I can tell you is right now in the three's program he has TONS of friends.  The children fight over who can sit next to him, who can play with him alone, and so on.  It is so funny to watch because Logan is just like "whatever...line up and I'll get to you when I have time".  LOGAN IS AWESOME and he is very liked!!!  I have even had parents come in and ask me who Logan is because their child comes home and talks about him and tells them how much fun they had with Logan that day.  Funny though because I worry about my middle child and making friends.  He is so shy (don't know where he got that) and it is some times painful to watch him socially.  When I hear other boys are getting together and he just sits back and watches or waits to be included, it KILLS me!!! His two brothers always have plans, but not Travis, he will just plug along and be happy with whatever!  I am finding that me pushing him to take initiative with planning is helping.  He has always struggled in school, he is Dyslexic,  and works his butt off to get good grades, while his brothers do the bare minimum and get great grades..   UGH motherhood is so hard!!! Anyway, I'm getting off track, I just want to say thanks for your kind words and for sharing Logan with us!!  I know it is hard not to worry, but just know that he is doing great at school and has many friends.  You actually should be worried about what a "ladies man" he is.  Girls LOVE him!!!!!  Have a great weekend and I'll talk to you on Monday.  Love you guys!!!!  Kelley

P.S.   Tell Maddie I have PLENTY of lipstick for her next year when she is in my class!!!  LOL!!!  I LOVE LIPSTICK TOO!!!!

Field Trip!!!

 Logan and I got to go on a field trip on together on Thursday.  It was super fun!!!   Sam drove Maddie to school and Logan, Georgie and I went to the farm to meet up with his class.  I often get to spend one-on-one time with Maddie because she insists on it, but I don't do it with Logan as much as I want to.  I know I had Georgia with me, but she's so easy, it was basically one-on-one.  Anyway, we had a blast!!  He ran through the hay maze, LOVED the little turkeys that were gobbling around, wasn't a huge fan of the hay ride, but also loved riding all the cool tractors and pretending to be in charge of the hay ride.  I was a really, super awesome mom and brought my good camera so I could take great pictures to share with you all, but, guess what!, I didn't charge the camera's battery.  Soooooo, there were a lot of really great shots I COULD have taken, but didn't because the camera was dead.  I did capture a few with my handy cell phone camera, so take a look and enjoy and have a GREAT Sunday.
Go Ravens!!!

The Difference Between Girls and Boys

First of all, let me start by saying, ahhhhhh, it's Saturday. Crazy busy week, and another one coming up so it's nice to be sitting here sipping coffee and relaxing!! Hope everyone else is doing the same.

Luckily, I have a hair appointment in a few hours, so Sam has to take Logan to soccer (hehehe...planned that one well, huh?)

So, as we were rushing out of the house the other day to go to school, Maddie all the sudden screamed, "I need my lipstick!!!!" That kind of stopped me in my tracks, because, WHAT?!?!? I DON'T even wear lipstick. How does she even know what it is? However, in an effort to avert a temper tantrum, I dug out some chapstick from my purse and watched as she very delicately applied it in the bathroom mirror. I basically just stood staring at her with my mouth hanging open.

I've sorta felt this way since she was born. Maddie and Logan are SO different, and so stereotypically girly and boyish. Logan would NEVER put lipstick or chapstick on. He doesn't even like it when we put lotion on him after his bath. And, speaking of baths, Logan HATES baths. Why? Because he LOVES dirt. He seeks dirt out. He'll walk 20 feet out of his way to jump in a puddle on a rainy day. Maddie will walk 20 feet out of her way to AVOID that same puddle. She doesn't like to get her shoes messy. She has, I don't know, maybe 30 pairs of shoes. Logan has 3 pairs.

One day last spring, it rained. It was the perfect rainy day to play outside. So, I put their boots and raincoats on and out we went. Logan thought this was the greatest thing of his life!!! Maddie thought I was trying to torture her, and finally just asked if she could go in to go to sleep. She was holding her hand up to her head as if to say, "This God awful experience has so exhausted me, I need to take to my bed immediately."

Very, very different these kids.

When I pick Logan up from school, I ask him a million questions about his day, "How was your day?" "Did you have fun at school?" "Did you play with any friends?" "Did you make a craft?" "Did you have a snack?" "Did you go outside?" IF I get an answer, it's a version of no (nope, nah, NOOOOOO).

Maddie, on the other hand, tells me step-by-step what she's done from the minute I dropped her off, until the minute I pick her up. It goes something like this, "first, i played play dough at the table, I sat next to Sabrina and Sam, we made apples. Then, I took care of my babies, Mrs. Judy helped me. Mrs. Judy loves me, I'm her best friend. Then we did circle time and I sang 3 songs. The letter of the day is C and we learned about the number 3. For snack, we had............." And it goes on and on and on like this until I put her down for her nap. SOMETIMES she wakes up TALKING about her day (you know, in case she forgot something).

Anyway, it's just funny to me. These kids of mine....so different.

Alright, I'm off to paint Maddie's nails :)

Happy Saturday everyone.

Will Logan have friends?

This is something I constantly worry about. I've worried about it since he was born. Do all parents worry about this with their kids? I'm not sure, but I do know that I don't worry about Maddie having friends, she'll probably just TELL people to be her friend and they'll listen. Georgia's too young for me to worry about that!!! But, Logan, I worry about. I don't know why, he's an adorable, lovable, highly social little guy, but will everyone else see that in him?

I know a couple of really, really, great women who have Down syndrome. They seem to have gotten through middle school and high school just fine and they have GREAT friends. The have this group, called the Circle of Friends, that meets on Friday nights and they do lots of really great stuff together. These ladies are so great and put together and happy and fulfilled it warms my heart. But, where are the boys? I literally don't know any grown up men with DS. I don't even know any teenage boys with DS. So, that's really hard, you know? NOt being able to SEE what Logan's life will probably look like when he's older. If he was a girl, I wouldn't worry because I see Julie, Sharon and Melissa and they're awesome. But no boys.

The one thing I do have is my great friends who have kids the same age as Logan. I have friends who have kids without DS and I have friends who have kids with DS. That makes me feel a little better when I'm lying in bed at night worrying about this.

Now, I feel like I have to disclose something before I go on. I worry A LOT about EVERYTHING. It seems like every year of Logan's life I've worried about something big and it always keeps me up at night, then I get over it and move on to another worry. I think right now I worry about the friend piece because he's actually in school away from me 3 days a week and I worry that he's just sitting in a corner playing by himself everyday. I KNOW he's not, but I sometimes let my imagination get the best of me. There was also an "incident" at the park the other day. Logan wanted to play with some older boys, probably 6ish. They did NOT want to play with him so they started to run away from him. He thought it was a game so he started chasing after them, giggling the whole way. Already my heart was breaking for him, but he didn't seem to care. THEN, the one boy turned around, looked right at my little Logan and screamed, "Jerk!!!" Oh my God!!! I stood there in shock with tears brimming in my eyes, I was just about to go over and yank him away from this terrible scene when my little pistol, Maddie May, came flying over from the other side of the park screaming, "That was NOT NICE, that is NOT a nice thing to say, this is MY brother and you are NOT NICE!!" Then she grabbed his hand and off they went. I have to admit, I couldn't help but smile. She's 2!!!! She's so awesome, sometimes, you know? Logan and Maddie fight like cats and dogs most days, but it's nice to know they love each other, and will take care of each other. But, the scene was still imprinted in my brain, I obviously still think about it. Why do there have to be bullies in this world? Why can't we all just get along? I don't know, but I hear all these stories about these poor, poor teenagers who are KILLING themselves because they're being bullied. I wish we could stop that from happening too.

Wow, I really went off track there. Anyway, yesterday my friend Tricia wrote a blog saying she really feels like DS is "No big whoop" and that everything will work out okay in the end. It made me feel better. But I'm still going to worry, I'm pretty sure it's probably normal to be worried about this. Normal-ish at least, and I'm writing it in case anyone else out there feels the same way. Now you know, you're not alone.

Logan's Lulu

A note from Logan’s Lulu (grandmother)

I have come to realize that being a grandparent is one of life’s greatest balancing acts that a woman can face. You love your children unconditionally and forever, and when one of your children presents you with a grandchild, that unconditional love reaches an all time high. The joy and the love that you feel for this amazing child is unbelievable, all you want to do is be there for them all time the time with hugs and kisses (and special grandmother treats). The balancing act presents itself when you have to come to the realization that you are not the parent and it is vital that you respect the wishes of the parents, even though it may not have been the way you did things with your children.
When my oldest daughter Katie, gave birth to Logan, we were ecstatic! However, within a few hours we learned that he was being sent to Hopkins because his lungs were not receiving optimal oxygen levels, he had an open PDA and low muscle tone and Katie and sam’s pediatrican wanted him at Hopkins. His life was never in danger, but in the next couple of days we learned that they had confirmed the suspicion of Down syndrome.
You may notice at this point, that I have used “we” frequently, because being the overly involved mother that I am, I wanted to be there for my daughter and her husband and my precious new grandson every minute. Believe me when I say that if I could have absorbed the fear and anxiety for them, I would have done it in a heart beat.
My husband and I went home that evening after getting the news that Logan had Down syndrome and talking with the genetics’ for a long time and asking a million questions, we were in a fog. We both immediately got on the computer and looked up everything we could, to better educate ourselves about DS. The one thing that we learned, that we decided would be our focus, was that the development of children with Down Syndrome depends a lot on the child’s environment. We decided that we would do all that we could to help our daughter and her husband provide love, support, education, and any services needed to maximize Logan’s developmental capabilities.
Logan is very lucky to have a mother that is a teacher, and she seemed to know just how to keep him focused on whatever new milestone he was attempting. His Dad has the patience of a saint, and is constantly taking his time to show Logan how to do different things, like kick a soccer ball and go into the ocean.
Needless to say, I was over there almost every day, offering to help, and I so loved spending time with my precious new grandson. I am quite sure that I overdid it in a big way, but I couldn’t help myself.
Logan is now 4 years old and has 2 sisters, Maddie age 2, and Georgia age 3 months. He is an amazing little boy, he sings and dances all the time and always has a hug or a high five for anyone and everyone. His smile is enough to melt your heart. Even strangers are drawn to his happiness.
His sisters provide constant activity for all of us and there is never a dull moment. He is in nursery school 3 days a week, and he really loves it. Besides his allergies and asthma, which he inherited from multiple family members, he is very healthy, and we are so grateful for that outcome.
The opening in his heart, at birth, just went away when he was 2 weeks old. Speech seems to be his biggest challenge, although he is clearly showing great improvement with each passing week.
There is nothing better than when your grandchild calls you on the phone and just goes on and on about what they are doing. I may not understand every word, from either of them, but I have the biggest smile on my face the whole time.
The hardest thing for me to accept was that Logan was not MY child and that MY daughter is now a mother herself. I am no longer in charge of my children’s lives and being a control fanatic, this was a challenge for sure.
So I try very hard to be a grandmother and not a bossy mother. (Why is there no handbook on becoming a grandmother?) I have never had a child with Down syndrome, and I will never walk in my daughters shoes. I respect all that she does, and I think she is an awesome mother, and has embraced Down syndrome passionately.

So just a little side note to all new mothers, especially if you have a child with special needs, “be tolerant of your mothers and mother-in-laws, we are doing our best, our love for our grandchildren is overwhelming and all we want to do is help. We are well aware that we are out of control! But we are too old to change our ways.”
Remember, we changed YOUR diapers! (Ever hear that one before?)

I am actually quite proud to tell people that I have a grandson with Down syndrome. I love to say that we must have done something right in our lives to have been blessed with this remarkable child. He brings total joy and happiness to our lives by just being with him. He is the absolute best thing that has happened to our family. He is truly the light in my heart.

Preschool

I just want to piggy back on what I was saying about inclusion yesterday. There are not many public, inclusive pre-k programs in Baltimore County, so last year Logan attended a private preschool. Honestly, even if there were A LOT of programs out there, I'm pretty sure I still would have sent him to Hunt's. Let me tell you why :) First, I taught at Hunt's Preschool (now Hunt's Church Preschool) when I was in college. I absolutely LOVED it then and always dreamed that my kids would go there.


When Logan was born, I wasn't so sure where he would go. However, 2 years ago when I started looking at preschools a couple of things told me that Logan absolutely HAD to go to Hunt's. First, a new director had taken over, Kathy Goldbeck. Ironically, Kathy was a teacher whom I had worked with at Hunt's. When I worked there I thought Kathy was an amazing teacher, but also someone who truly, truly loved all children. She was also an incredibly open and honest person, and I had the highest respect for her. Soooo, that was a big plus!! Then, when I went to visit, I walked into the class that would be Logan's the following year and saw my former swim team coach was the teacher!!!! I'm sure ALL former Roland Run swimmers remember Becky!!! Becky was the most beloved swim team coach at Roland Run EVER and one of the reasons why I became a teacher. Soooo, another BIG plus. THEN, I went downstairs, to continue the tour, and learned that another one of my former colleagues taught the 3s. Kelley was honestly one of the BEST teachers I have ever worked with. She is SO much fun, so positive and so loving towards the children, I thought, if Logan comes here, his first few years of school will be amazing. Obviously, it was a no brainer.

And, I have say, I have not been disappointed, not for one day. The parents and teachers at Hunt's are so inclusive and so loving and accepting and Logan has thrived there. It's truly a perfect example of how wonderful an open, honest, communicative inclusive environment can be for a child.


So, I would love to take this opportunity to thank Mrs. Goldbeck, Ms. Becky, Ms. Kelley, Mrs. Wagner, Ms. Ann and Ms. Bobby. You have truly made an amazing, remarkable impact on our family's life!!! We will love you and be grateful to you forever. (I know all you Hunt's moms are nodding your heads in agreement right now!!) Thank you :)

Inclusion

Today I get to do one of my favorite things, speak to a group of college students about Down syndrome. I absolutely love doing this because I feel like I'm speaking to Logan's future teachers, and I'm helping them to understand that Logan and his friends are, and will continue to be, wonderful students. They are in fact, beneficial to everyone in the classroom. I've read many, many studies about the importance of inclusion and I naively believed that everyone agreed with me, and had read these studies, and that inclusion would be no problem once we got into "real" school. Last night I attended a CDSPG board meeting and, as I looked around the room, almost every single parent of a school aged child had fought, or was fighting, to have their child included in a regular education class. Can you believe that?!?!?!? We have to FIGHT to have our kids learn with other kids!!! To me this is APPALLING!!!! What's even worse, and so sad to me, is that schools in Maryland, and specifically Baltimore County, are among the WORST in the country for inclusive education. Ugh, it just breaks my heart. It breaks my heart that all of my friends, and myself, are going to have to convince people to teach our kids. We have to keep doing it, over and over and over again. I wish I had the time to go to Annapolis and DC and talk to our congressmen and women, I don't right now. BUT, mark my words, I WILL fight for this,I will make it happen, I will prove that Logan and ALL of his buddies should be with everyone elses kids. We'll make it happen in this lifetime!!!
In the meantime, I'm going to keep speaking to future educators, and praying things change. If YOU want to help, check out the Maryland Coalition for Inclusive Education website: http://www.mcie.org/index.asp
And, if you're interested, I've attached an article about the Benefits of Inclusion which I got from the National Down Syndrome Society's Website.

Benefits of Inclusion

A number of studies over the years have reported the various benefits of inclusive education. In 1996, the National Down Syndrome Society published a research report on the inclusion of children with Down syndrome in general education classes1. After analyzing and comparing extensive parent and teacher questionnaires, this study found that with proper support and adequate communication between parents, teachers and professionals, inclusion is a favorable educational placement for children with Down syndrome. The study also found that the learning characteristics of students with special needs were more similar to their nondisabled peers than they were different. Moreover, teachers reported positive experiences with students with Down syndrome. They described their students as eager to learn, especially when encouraged, and reported personal satisfaction in terms of their professional achievements.

Literature documenting successful inclusion practices is significant and growing. An analysis by Baker, Wang and Walberg in 1994 concluded that “special-needs students educated in regular classes do better academically and socially than comparable students in non-inclusive settings2.” Research by Hollowood et al., (1995) found inclusion was not detrimental to students without disabilities3. In fact, a national study of inclusive education conducted in 1995 by the National Center on Educational Restructuring and Inclusion (NCERI) reported academic, behavioral and social benefits for students with and without disabilities4. The study also concluded that students within each of IDEA’s 13 categories of disability, at all levels of severity, have been effectively integrated into general education classrooms. NCERI also reported positive outcomes and high levels of professional fulfillment for teachers. A number of other studies confirming the educational and social benefits of inclusion for students with and without disabilities can be found in the reference list at the end of this publication5,6,7.

In May 2000, the Indiana Inclusion Study8 investigated the academic benefits of inclusive education for students without disabilities. This study concluded that students without disabilities who were educated in inclusive settings made significantly greater progress in math than their peers. Although their progress in reading was not significantly greater than their peers, there was a “consistent pattern” in their scores that favored educating students without disabilities in inclusive settings.

This and other research has highlighted improved academic skills, social skills, communication skills and peer relationships as four of the most important benefits of inclusion. Nondisabled students can serve as positive speech and behavior role models for those with disabilities and students with disabilities offer their nondisabled peers acceptance, tolerance, patience and friendship. As allies and friends, peers can offer support both in and out of the classroom. These findings show that everyone involved in inclusive schooling can benefit from the experience.