Down Syndrome Friday – Protecting vs Inhibiting

I’m torn.

With Cody going into Kindergarten next year, I have been having a battle within myself trying to figure out what the best course of action is for him. Do I continue with him in Special Education where I know he will be well watched after and his specific needs will be met? Do I fully mainstream him into a “typical developing” class?

My gut tells me to try to do full inclusion because I think he will be fine. At the same time, my heart tells me that a typical kindergarten classroom is 1 teacher to 30 students and Cody will get lost somewhere in the shuffle or have a hard time adjusting to such a large class full of children still learning to adapt to curriculum, expectations and possibly for some, dealing with the anxiety of being in an educational environment for the first time.

I am probably over thinking this, right?

Recently, HBO premiered a documentary titled Monica and David, in which they follow the couple on their first year of marriage. Though I have not watched it yet, I have been reading and hearing about it from friends.

Monica and David happen to both share the same designer gene Cody sports.

One of the most powerful statements that I read was one from Monica’s mother:

“as parents, we want people to look upon our children with special needs like anyone else…And yet because we want to protect them so much, we are typically the first ones who treat them poorly by subconsciously denying them their rights to have a normal life.”

Honestly, when I read that, I cried. <okay, so I cry quite a bit, but this was for good reason. :)  > It made me look at myself and wonder if I do things because it is in Cody’s best interest or because I am trying to protect him. How do I figure out when my decisions are based on which reasoning? How do I turn off the protective mother instinct that wants to make sure that Cody is not hurt, offended, discouraged, challenged beyond his capabilities or worse, not accepted. I know I can’t fight every battle for him, but  how do I convince myself of that?

When I read the quote from Monica’s mom, it brought me back to my mental battle over selecting which educational road would be in Cody’s best interest.

When I voiced my concern to someone recently, she told me something that made me feel slightly better. She said that Kindergarten is a stepping stone into his education. Whether or not he is in a special education class or a typical developing class for Kindergarten will not affect his success in education. Migrating him to become fully included in a typical developing class can be a goal instead of a requirement. 

She made me feel better and not so pressured (though the pressure was coming from myself) to rush him into full inclusion.

When DJ was in Kinder 2 years ago, the class sizes were 20 students to 1 teacher. If that were still the case, I would be more inclined to lean towards full inclusion. But to tell the truth, I would be scared to put my “typical developing” child into a class of 30 kindergartners.   It just seems like a sink or swim situation.

I would love to hear what other parents have done to lay the groundwork for fully mainstreaming their children. I know we have many IEPs ahead of us and I would love any advice on how to make the most out of the IEPs and most especially, to know what I should be fighting or not fighting for when it comes to Cody’s education.

Highlights from the 2010 Step Up For Down Syndrome Walk

First and foremost, a HUGE THANK YOU to those that donated to Cody’s Gabba Gabba Gang team! We appreciate your support and are touched by the donations from strangers. From the bottom of our hearts, THANK YOU!

A SPECIAL THANK YOU to those that walked with us! It is heart-warming to have your support. It is further proof of just how much you all love Cody! :)

Our Team Captain was nothing but smiles that day. He must have known that we were there to show our love for him!

I’m not saying this just because I’m his mom (okay maybe), but doesn’t he have the most addictive smile??? I know you are smiling right now as you look at his picture. :)

The Co-Captain was ready to go, too! We had to explain to him that Co-Captain was not an abbreviation for “Cody’s Captain”. ;)

This was our first time joining the walk and we were very excited about it. Even DJ was (though he will tell you otherwise!).

 

Papa and Mama came out, too!

My brother, Mike, and his girlfriend Teri joined in the fun.

One of Cody’s favorite playmates was there – my younger brother, Mitch. (By playmate I mean that Cody likes to try his new wrestling or UFC moves on his Uncle.)

And we were excited to have my cousins, Kenneth and Liezl, join us as well! THANK YOU for coming out early on a Saturday morning to walk with us! Next time, I will remember to bring donuts. ;)

If there is music, Cody will find it. And when he finds it he will DANCE his little tushy off!  

This is the look you get when the music stops.

 

And he was off!!!! Look at the joy on his face. He walked about half way then lost interest in the walk. :) 

 

Again, THANK YOU to all those that showed their support through joining our team, sending donations and messaging us with well wishes for the walk!

Dandelion Magazine – Bay Area

If you live in the San Francisco Bay Area, you may have heard of Dandelion Magazine. It is a magazine dedicated to parents of special needs children. It is  a great resource full of information for therapies, activities, events, doctors and so much more.

I was honored, beyond flattered (and in tears from excitement) when I received an email from them a couple of months ago asking if they could run my post about Cody’s First ER Visit in the upcoming edition of the magazine.

Though my first instinct was to say yes, I second guessed myself because this was going to be a fairly widely spread magazine in the Bay Area and my personal experience with my full heart on my sleeve was going to be exposed.

Then I remembered why I posted it on the blog in the first place – to let other parents know that others have gone through their situation and that feeling vulnerable and hopeless during the situation is normal. Even though you feel alone in that moment and that no one could ever understand what you were feeling, there is someone that does understand and can relate.

That alone was more than enough reason for me to say “yes” to sharing my story.

The digital copy of the magazine was made available this week and I was excited to see my handsome baby not only in the article, but on the “What’s Inside” page!

The digital copy of the magazine can be found at: http://www.bluetoad.com/publication/?m=11210&l=1 

It was a pleasant surprise to also see Baby Sofia and her touching adoption story in the magazine as well!!! (Cody has a soft spot for Sofia and calls her his “baby”. He loves to carry her and cradle her even though she is more than half his size!)

The article features a picture of Cody with is “James Dean” stare. ;)

My boys…..

It still makes me choke up when I see this picture of my boys. It reminds me of how blind and unconditional love can be. We worried that DJ, 3 years old at the time, would be scared of all the wires and tubes coming out of his brother, but he walked into the ICU room, walked straight to his brother’s bedside and grabbed Cody’s hand and just held on to it. He didn’t ask about the ventilator;  he didn’t ask about the tubes or wires. He just stood there holding his brother’s hand.

Step Up for Down Syndrome - 6th Annual DSIA Walk for Down Syndrome

Our family is excited to be participating in our first Walk for Down Syndrome on October 17th in Sacramento.

If you are local and are considering walking with us, here are the details of the event.

To join Cody’s Gabba Gabba Gang team, visit our team’s home page and click on Join Our Team. We would love to have you join us!!!

If you are not local, but would like to help us raise money for the Down Syndrome Information Alliance, please feel free to donate here or contact Michelle to arrange a donation.

Thank you so much for your support! We have already had some  generous donations come in and we GREATLY appreciate it. Cody will be happy to give you all GIGANTIC hugs when he sees you!

We are looking forward to participating in the walk and meeting other families whose children have designer genes like Cody! ;)  Don’t worry, there will definitely be pictures posted after the event.

Buddies

Cody can’t get enough of Lexus. He wakes us up at 6 in the morning some days just to tell us “that’s Lexus!”

 

A little background on these two-

Lexus is not the puppy that we intended on buying when we went to the breeder. I had already put claims on a black mini schnauzer girl puppy the day before when I went there with just DJ. When we went to see the puppy the next day, Cody came along and wanted nothing to do with the black puppy (Cody does NOT like small dogs).

He kept going up to one particular puppy and even pet her. He had never pet a small dog before or even willingly acknowledged one so this was a huge step for him.

Throughout the visit he kept going back to her.

We had no choice but to choose this little puppy as our “Lexus” and not the black puppy. Apparently, Cody knew something we didn’t because she is such a well-mannered puppy and she is patient with the boys and puts up with their antics.

Cody and Lexus have a special bond (though DJ claims the puppy is his). I constantly find the two of them cuddling up together and he even lays in her bed with her sometimes.

He is saying “that’s Lexus” in this picture. :) 

A lot of times, I find them sitting together just like this.

This was supposed to be a picture of just her, but someone managed to get his face in the picture, too. He has been doing a lot of picture bombing lately.

 

This is the face she gives when she is ready for Cody to stop “playing’ with her. Doesn’t she just look sad???

 

 

 

Oh that face!

I just LOVE this face!

He is SOOO over getting his picture taken!

Drawing

Cody LOVES to draw. I enjoy that he is now starting to draw faces and things are starting to look like what he says they are. =)

One of his favorite games is asking us to draw something so he can guess it. He likes to draw things, too, and have us guess.

This is him asking “what’s this?”

 

When I don’t guess right, he gives me this “you DON’T know what IT IS?” expression. It makes me laugh every time!

 

Apparently drawing is exhausting.

 

This is him signing and telling me I drew a '”pig”. (Please do not look at the drawing. I’m not very good at drawing so it amazes me that Cody knows what I drew!)

Slow Down

This image kind of made me sad. It depicts where Cody is in life. He is a very independent little boy and loves to explore things on his own. He often lets us know when he wants to do things on his own and because he is only 4 it sometimes breaks my heart. This image reminds me of that. He is taking on his little 4 year old world and that the road ahead of him is open. That there are no obstacles that he sees in his path.

He likes to try to walk a few steps ahead of me. I just want him to slow down and stay by my side.

The Kindergarten teachers at the school Cody will be going to next year are excited that he will be in Kinder next year. I am not as eager as them.

The teacher and one of the aids saw us last week when we dropped his brother off at school and they both exclaimed “Next year, Cody!”.  My response is usually the same “Don’t rush him! I mean, me!”   I also advised them that “Kindergarten” is now a bad word as far as I’m concerned. =) I’m not ready for our youngest to go to Elementary school next year, but I guess I’ll have to get used to the fact that he is getting older and that eventually he has to go to school full-time. But for now, Kindergarten will be a bad word!! =)

Bay Area Discovery Museum – A Great Place for Kids (and Parents)

For the boys’ last day of summer vacation, we took them to the Bay Area Discovery Museum in Sausalito. It was our first time there and will definitely not be our last!

There were so many activities for the boys and they had a blast at all of them!  I appreciated that the activities and exhibits were very kid friendly and that the boys could run around each exhibit without the worry of running into something or breaking something. That is what set this museum apart from most museums we have been to. It was very hands-on and if you have boys (or toddlers for that matter), everything is hands-on. :)

There was so much to do and we spent a few hours just wandering around. We even made our rounds to exhibits twice.

My boys are 4 and 7 and they each thoroughly enjoyed this place. I suggest bringing your kids to the Bay Area Discovery Museum. They had buildings set up with different fun, yet educational, themes. From Space to Ocean Life and Art to a Train Set (where Cody spent a good chunk of his time at) there were lots of fun exhibits.

 

Living With Special Needs Website

A couple of weeks ago, I was asked if I would like to contribute articles to a website for special needs children.

It didn’t take much thinking for me to say “YES!”

It is still new (and seeking more contributors if you are interested!), but I see the potential in the site and appreciate its goal. With so many unknowns about the many special needs diagnosed, it is beneficial to have a resource for parents to share, learn, and support each other.

The contributors are primarily mothers  with children with Special Needs. I invite you to visit each of their blogs listed on their bios.

First Day of School Cuteness!

     

10 Random Things About Cody

1. He is a Yo Gabba Gabba FANATIC – that one wasn’t a secret =)
2. If there’s a  song playing, he will stop what he is doing and dance
3. He is the first person to say “Bless You” if someone sneezes, even if the sneeze is not real
4. When he says “no!”, he means no and you can’t change his mind
5. He absolutely idolizes his big brother
6. If something is missing in the house, most of the time Cody can tell you where it is – after all, he was the one that hid it in the first place! ;)
7. If anyone ever needs a hug, Cody is always willing to offer one. And if he doesn’t offer one, you can usually steal one and he still doesn’t mind.
8. Cody was left handed then switched to right handed last year
9. I think he will make an awesome UFC fighter. The boy has moves and can throw a good punch. My cheeks and stomach can vouch for that one.
10. It doesn’t matter what shoes he is wearing, he will always take off the right one

Potty Training Tips?

Cody is 4 and shows little interest in potty training. He knows what it is and what he is supposed to do, but seems content in his diapers. Not that I can blame him. It is much easier to have someone else take care of changing a diaper for you instead of taking the time to go to the bathroom and do it yourself, right? =)

We have tried the Elmo Potty Book and Elmo Potty Movie. We even tried his brother’s favorite DVD and CD, Once Upon a Potty. He showed no interest in the “old school” animation and laughed at it!!!!

I would love to hear any tips or tricks that you used to get your little one potty trained!

School

Cody is starting his 3rd year of preschool in 2 weeks and it is bitter sweet for me.

This will be the first year that he is going to school four days straight. The thought of “what am I going to do without kids for four days, three hours a day” is still shocking, I can’t help but feel guilty that I am secretly enjoying the thought of 12 hours of “me” time each week. I will miss my little munchkins like crazy, but the thought of being able to go to the gym again, enjoy my morning coffee in just one sitting and not having to reheat it at as the morning passes, working quietly in my office without the worry of what that last crash was and just the simple thought of silence is appealing. :)

Cody will do great in school – he always does, but I wonder how he will react when 3 of his “girlfriends” aren’t in class. I am sure he will get over the heartbreak of not seeing them and find new friends. It is just his nature.

Speaking of nature – Cody is quite the tornado. So much that I refer to him as the Codnado. Here is proof?

This is the latest trend in sofas as defined by the Codnado. Cushions go UNDER the sofa cover. Apparently, it is much more comfortable that way. I find him sitting on that sofa more and more now that it is Cody-ized.

The Boy’s Got Heart!

(This was originally posted on MRS Photography as one of the Cody and Down Syndrome Fact Friday posts.)

I was overwhelmed with the support and love for Cody that everyone shared after I shared  “Did You Know?”. You all had me in tears. THANK YOU for the love!

It is interesting to find out that many of my friends that have children with Down Syndrome did not know their baby had DS until shortly after they were born. I often wonder if I would have reacted differently if I didn’t know about Cody’s diagnosis until after he was born. I know without a doubt that he would have been LOVED just as he is now. That would not have been different at all.

Another question I am asked is how I coped with knowing he had Down Syndrome during the 4 months of waiting for him to arrive. In all honestly, the Down Syndrome was far from our minds.

One week after finding out Cody had Down Syndrome we found out something that was hard to comprehend. Our son had a heart defect. (Almost 50% of children with Down Syndrome have heart defects.) It hardly seemed fair that our unborn child already had issues with his heart.

Cody had (I am SO happy to be able to say that word – HAD) a condition called Tetralogy of Fallot. He also had an ASD (a hole in the septum – the wall between the upper chambers of the heart). Sometimes I hate that I know all this terminology because all this happened to Cody, but other times I like it because I have always wanted to be a nurse. ;)

After finding out about his heart defect, the remainder of the pregnancy was focused on keeping Cody as healthy as can be while in utero. That included monthly pediatric cardiology appointments for cardioechograms on his heart and visits with a pediatric heart surgeon. The world of medical technology amazes me. Although it was comical being the only adult in the pediatric cardiology waiting room awaiting an appointment, it was comforting that they could track Cody’s progress while he was still securely protected inside me.

Because we were so focused on the heart defect, we “forgot” about the Down Syndrome.

I think the most stressful part about it was waiting for him to arrive and wondering if he would be okay.

I LOVE that he was born at Mary Birch Woman’s Hospital and that they had a “secret” (okay, it’s not really secret, but I just like the mystery of the way that sounds and have always referred to it that way!) passage way to San Diego Children’s Hospital. They prepared us that after the c-section he would highly likely require surgery immediately after birth and that he and his dad would take this passage to Children’s Hospital for the surgery while I (probably impatiently and nervously) recovered at Mary Birch.

That’s the part that scared me the most – not knowing what was going to happen at birth and the high probability of him needing surgery after birth.  Would the Ductus Arteriosus close as it is supposed to and he will get blood to his lungs? Will he scream and yell after birth to tell us he is okay? Will his heart have to work overtime due to the birth and cause him to have even more issues?

On May 4th (he was supposed to be born May 5th for my mom’s birthday present, but my doctor was off to celebrate Cinco de Mayo instead! LOL), Cody was born….

…and he screamed…

…and he fought…

…and true to my feisty Cody, he pulled his oxygen mask off his face and smacked the nurse….

….and did NOT need surgery!

He came out with his arms swinging, legs kicking and a warrior cry that filled the room! His cry was the most beautiful thing I had ever heard.

After 4 months of waiting for that cry, I finally heard it. It was the cry that told me everything was going to be okay.

The cry that told me “look at me, mom! I’m fighting! I’m not going to let them take me to surgery just yet. I haven’t even met you!”

I love that the hospitals were prepared. The cardiologist was waiting to be paged, the ICU staff was on hand, the team to take him to surgery was on hand. What I love even more is that we didn’t need them. Cody didn’t need them. (He didn’t need them for another 5 months.)

In this moment, I knew my little guy was a fighter. 

Top 10 Things I Have Learned From Cody

1. Keep trying – if you keep trying, you will eventually get the outcome you want
2. Don’t give in to expectations – if Cody only lived up to the expectations people have of him they would never see his true potential. I love that he can prove people wrong!
3. Keep smiling – even when he was laying in a hospital bed connected to a ventilator, he never stopped smiling. Even when he is sleeping I catch him laughing and smiling while dreaming. I want his dreams. :)
4. Never hold a grudge – the boy can’t stay angry for the life of him. He can be super mad at me one minute, but as soon as I smile at him, he forgets all about his anger.
5. Be able to laugh at yourself – when he falls, he is the first to laugh. If he bumps his head, he is the first to laugh. I think being able to laugh at myself and things I do reminds me to not be serious about a lot of different things.
6. Make friends everywhere you go – Cody is like a friend magnet. Adults and kids love to talk to Cody and he is always open to chatting with them as well. Not that I’m NOT talkative, but it is a reminder that you can never have enough friends.
7. Don’t forget to be silly – Every day items turn into a hat or a toy. He can crack himself up for half an hour with a basket or a silly dance. I try to be silly with him and his brother as much as I can.
8. Show your love often – Cody has an endless supply of hugs, kisses and “i lub yous” to give away. Hug someone and it can make their day. :)
9. Be there for someone – If ever anyone in the house is upset or in trouble (aka the puppy or his brother), Cody is the first one by their side to comfort them or stand up for them. (He is also likes to help scold them, but that is after he has comforted them).
10. Enjoy life – Cody can turn anything he does into something fun and enjoyable. I think us adults need to do that more often!!!

Did You Know?

I think one of the first questions I get asked when people find out Cody has Down Syndrome is “did you know?”. I always tell them yes, but I do not tell them that I think I knew before I really knew.

Yes, I found out on December 28, 2005 at about 22 weeks pregnant that Cody had Down Syndrome, but I think I new that before even the medical tests confirmed it.

I used to drop off and pick up my cousins’ kids from school. And almost daily before and after school with the crowd of parents filtering in and out of the school there was one baby boy that always stood out to me. I was not sure what drew me to him, but whenever I would see him pass by in his mother’s arms I would just watch him and think he was beautiful and that I just felt drawn to him. So much so that I would mention him to my husband and cousins and that I had to introduce myself to his mother so I could say hi to him.

That little 10 month old had Down Syndrome.

During a Thanksgiving visit to my folks’ house I picked a book out from my mom’s collection (something I always did when I visited). The book was The Memory Keeper’s Daughter by Kim Edwards.

I did not get very far in the book. When I got to the part of his shame over his newborn daughter’s Down Syndrome I stopped reading. It bothered me…A LOT. I figured it was because I was pregnant and overly sensitive.

The following month I went to my monthly doctor’s appointment and took the recommended AFP test and thought nothing more of it.

Within days, my doctor had called to say that he wanted me to do further testing because the test came back with a 2% chance for Down Syndrome. 2% meant that there was a 98% chance that he did not have Down Syndrome.

I had an amniocentesis done and again, thought nothing of it. There was only a 2% chance, right? The amnio and any chance of Down Syndrome were the furthest thing from our minds. We never discussed it because we honestly did not think they would find anything.

On December 28th I received the call from my doctor. You know something is wrong when the first thing the doctor tells you is “I have some important news to tell you. You may want to sit down if you are not already.” My first thought (because I am silly like that) was “REALLY? People say that in real life and not just in movies and TV shows????” Then he gave me the news. Our son has Down Syndrome, more specifically Trisomy 21. My husband had a look of wonder as he watched me sitting on the steps holding the phone in my hand and bawling. I did not know how to tell him. So I just said it out loud…and we cried.

I cried. I cried for days. I mourned the idea of a “normal” child. I wondered why.

One of the first options they give you after telling you your child has Down Syndrome is that you have the option to terminate. My husband had told me that “the easiest decision to make is the one when the baby is not born yet, but how do you know if that is the right decision?”

I would have never been able to live with myself if I terminated for a vain reason. Down Syndrome is a condition, not a death sentence.

As a mother with a child already I knew my life was great with DJ. I did not want to NOT know how great life would be with Cody.

Welcome!

Welcome to our blog where we will share the experiences, learnings, trials and triumphs of raising a child with Down Sydrome.

I would love to hear feedback and encourage questions. My goal is that through this blog I can help build not just awareness, but meet other families with children with Down Syndrome so that we can, in turn, learn from their experiences.

Happy Reading!

(P.S. If you follow my other blog, you may have already seen some of the first few posts that will be posted here. I am pulling from my "Fact Friday" segment to this blog. I promise new content will be posted, too!)