Friday, November 15, 2013

Our Girls

I love this big girl of mine so much! She makes me one proud momma...most of the time :)

And this little girl of mine....makes it really hard to be in a bad mood (at least for a long period of time.).....even today when she decided to take it upon herself to change her own poopy pull up :/. Lucky for all of you, I don't have pictures of that mess!

Thursday, October 31, 2013

Happy Halloween

The scary pumpkin head person....and the little witch :)


Because of the weather, we decided to go Trick or Treating last night.  We had so much fun!!!  Of course Randy and I were busy chasing Flash, I mean Sophia, all over the neighborhood.  She just can't contain her excitement sometimes :)  There were so many people and so much to do, she didn't know where to start!  But it was the cutest thing watching her sprint across the yards, right up to the door, give a little knock, then step back and wait :)  And as soon as she got her candy, she was off, looking for the next porch light.  Her greatest treat came at the last house we went to though....a bag of cool ranch Doritos.  Bless that man!  He made one little girls Halloween night, just perfect :)

Wednesday, October 30, 2013

Tuesday, October 29, 2013

Raising Awareness and Social Media

In a society where women are still terminating their pregnancies solely based on a Down syndrome diagnosis and some medical professionals are giving parents false information on what their child's life will look like with Down syndrome....I think that any positive awareness put out in the media about Down syndrome is awesome!  I want people to see stories like the ones listed below, and understand that life, with Down syndrome, is worth living.

Just a few of my favorite stories about individuals with Down syndrome making a difference: 

1. Teddy Kramer, Cincinnati Reds Batboy and his own Baseball Card

2.  British artist, Tazia Fawley, paints a gift for Prince George

3.  Middle school student, Owen Groesser, makes 3 pointers

4.  Katy Perry's Roar Contest Finalist

Monday, October 28, 2013

A Cure for Down syndrome

New research is offering clues about what is happening in the brains of people with Down syndrome and why they appear to age more rapidly than others. 

Many individuals with Down syndrome get gray hair, wrinkles and even develop Alzheimer's disease in their 40's.  Researchers say they now have more evidence that the cause of this accelerated aging could be a high level of what's known as oxidative stress in the neurons of those with the chromosomal disorder. 

Researchers took skin cells from individuals with Down syndrome which they transformed in order to grow brain cells.  Doing so allowed the scientists to observe how brain cells in those with the chromosomal disorder develop from the start.  They found that communication between brain cells in those with Down syndrome are occurring at just 60 percent of the level seen in typically developing individuals.  Those with the chromosomal disorder had significantly more genes designed to respond to oxidative stress, which occurs when there is tissue damage, and these genes were present from day one in the cells studied.

"This suggests that these cells go through their whole life with oxidative stress, and that might contribute to the death of neurons later on, or increase susceptibility to Alzheimer's," said Anita Bhattacharyya, a neuroscientist at the University of Wisconsin-Madison who worked on the study. 

The finding is significant, Bhattacharyya says, because scientists may now be able to use the brain cells they've grown to test or design drugs to potentially treat symptoms of Down syndrome......

When I hear the word 'cure', I think of someone who is sick.  My daughter isn't sick.  Would I like to take away all of her struggles and challenges and make things easy for her, of course, but at what expense. 

Yes, Sophia's extra chromosome has caused her to have health issues.  It has also increased her risks of developing other health issues later in life.  This has been the worst part of having a child with Down syndrome.  The fear that I go through as a parent always thinking that one day these health risks are going to catch up to us and smack us right upside the face.  But the reality is, any child is at risk for developing anything in their life.  But because we have a Down syndrome diagnosis in our back pockets, we become more aware of just how likely it is to have to face certain roads. 

I think all parents of individuals with Down syndrome would like to help make their child's life easier in ways and to prevent, or slow down, the aging process in adults with Down syndrome, but it's still unclear what the costs may be to this new research. 

There is so much more to people with Down syndrome besides health issues and developmental delays.  Most people with Down syndrome offer lessons in patience, kindness, and what it means to be human.  There is something positive that people with Down syndrome contribute to the world.  Would this 'cure' take all of that away too?

Sunday, October 27, 2013

A Broken Heart

How does a parent prepare themselves to see their child like this?  I don't know that you can ever prepare yourself enough to see your child in such a fragile state.  No matter how much you read and research and try to prepare, it's a whole different ball game when it's your child in a particular situation.


I remember the day that we found out about Sophia's heart defect, something that is pretty common in children with Down syndrome.  She was two days old and they were about to take her back for her first surgery, to repair a blockage in her intestine.  They informed us that Sophia had an Atrioventricular Canal Defect (AV canal defect) and would eventually need surgery.  Basically she had two holes in her heart, one in the upper chamber and one in the lower chamber of the heart, causing her blood to mix.  Sophia was monitored very closely by her cardiologist for her first few months before it was evident that due to Sophia's pulmonary hypertension, she was going to need to have her heart repaired, at 6 months old. 

I knew it was coming, but the day I heard the news that we would be moving forward with her open heart surgery (OHS), it was a blow to the stomach.  I wasn't ready for this.  But I went home and tried to find as much as I could about babies with Down syndrome and having OHS.  I found some helpful things that prepared me a little for what was about to come, and then I found things that only took me to a place I never wanted to go. 

When the day finally came and we had to hand our baby over to her team of nurses and her heart surgeon, I didn't know what to do.  I had no control over what happened inside that surgery room.  I felt helpless and scared.  A million 'what ifs' went through my mind that only did more harm then good.  So the only thing I knew to do was pray.  I had to put my trust in God's hands.  If anyone was going to take care of my baby girl in that room, it was going to be Him.  In such an emotional state, that was the only way to find any comfort in the know that God was with my baby and was going to keep her safe for me.  And He did just that.

Sophia came out of surgery with a mended heart and no complications.  Thank you Jesus!  She definitely looked intimidating at first, but she needed me and I needed her, so I had to put my own fears aside and be the strong mommy that my little girl needed me to be.  When you see the pictures right after her surgery, it's looks horrific almost.  But nine days post surgery and we were getting our discharge papers and heading home, complete with a whole heart, and a new outlook on life. 

Saturday, October 26, 2013

Asking Questions? Please Do!

The one thing that hurts the most about raising a child with special needs, are all of the stereotypes that are out there about my child and people who believe those stereotypes.  If you learn nothing else from reading my blog, understand that everyone is different.  Just like people who don't have to live with a diagnosis hanging over their heads every day are different from one another, people who share a diagnosis are also different from one another.  And until you get to know a person individually, you have no idea what they are capable of. 

Of course it's true that individuals with Down syndrome share similar characteristics that aren't always common with the general public, but that doesn't make every individual with an extra chromosome the same person with the same strengths and weaknesses and hopes and dreams. 

Over the past few years, since I started blogging every day in October to raise awareness about Down syndrome, I realize that ALL of this information that I put out there can be so overwhelming.  I mean to someone to who doesn't live their day to day life around a loved one with a special need, it can be hard to remember all the "rules."  One thing that I never want someone to feel around me is that they have to walk on egg shells when they talk to my child or talk to me about my child.  We all make mistakes sometimes, I get that.  I don't even want to think about all of the disrespectful and inappropriate language that I have used over my lifetime.  I'm sure I would be horrified if I could look back.  But I didn't know then what I know now.  And maybe you don't know either, which is why I want to educate as many people as I possibly can.  Because you may not ever be as lucky as me to have such an awesome daughter who also has Down syndrome :)

Until you educate yourself about Down syndrome (or anything else for that matter), how are you suppose to know anything about it?  And part of educating yourself is asking questions.  ASK QUESTIONS, it's okay really!  We grow up being taught to look the other way and don't talk about why someone is doing something that we don't understand.  We are taught to just move away from the situation and pretend like we never saw anything and just go on with our own lives.  But when you, or your child, is sincere in wanting to know why my daughter does some of the things she does, and you're not just being a nosey butt who wants to simply judge me and my daughter, then stop and ask.  I would be happy to answer any questions that you have about Sophia!  Because I want to help educate others about my daughter, and provide people with accurate information, instead of  people being educated by the stereotypes that are out there about who my daughter is. 

Thursday, October 24, 2013

The Truth

Raising a child with special needs is hard.  It's exhausting some days.  It takes you to a place of extreme sadness and extreme happiness.  It makes you question everything that you once thought you knew about raising children.  But if I had the choice to go back to the day when I found out that I was pregnant with Sophia, and know then everything that I know now, would I do it all over again?  Absolutely. 

That is what all my blogging and trying to raise awareness about Down syndrome is really about.  I never want to give people the wrong impression about our life and journey with a child with special needs.  It comes with struggles and challenges that families without children with special needs usually don't face.  But I don't want your pity.  I don't want you to feel sorry for us or my child.  I just want you to know that even though there are more struggles and challenges and roadblocks to overcome, it is all worth it.  I would do it all over again, because my child with Down syndrome, IS worth it. 

I am constantly writing about how Sophia is more alike than different, and I do believe that.  But the truth is, she is different from a lot of her "typically" developing peers.  Yes, she loves to be around kids and to play and interact.  She wants to be included and accepted and feel wanted by the people around her.  She cries and gets her feelings hurt when people aren't nice to her.  She is curious and wants to explore her surroundings and wants to learn new things.  She is discovering her independence and wants to express herself without feeling controlled by others.  She is a "typical" kid in all those respects.  But at four years old, she struggles with speech and communication and getting her point across to others.  She struggles with fine motor activities like coloring or drawing a picture, using scissors or writing her name.  She struggles with staying on task and focusing long enough to learn age appropriate material.  She struggles with personal space and appropriate play with others.  She struggles with most kinds of personal care, like dressing herself and toileting.  She has a lot of challenges to overcome that a lot of her "typical" peers have already conqured.  But the real truth about that is, she will overcome all of those challenges, just in her own time. 

I also talk a lot about how Sophia has changed my life.  How she has made me into a better person.  She has opened my eyes to a whole other world that I was closed off from all my life.  She has made me realize that all individuals want the same thing in life, acceptance.  Everyone wants to be respected and to feel like they are a part of the their community in which they live in.  She has made me understand that being different is okay.  That you don't have to be the fastest or the smartest or the prettiest person in order to be valuable.  We all have unique strengths and weaknesses, and it's important to help people display their strengths, especially when everyone else around them can only see their weaknesses.  But Sophia has also changed my life in other ways too.  Because of Sophia, I am more aware of sick babies being born every day and of the ones who desperately have to fight to stay here.  I am aware of countless trips to hospitals and doctors offices that so many families have to make day in and day out because their child is at a higher risk for health issues.  I am aware that some children don't just meet their milestones at age appropriate times, but need therapists, and dedicated parents, to teach them how to meet their milestones, which can be a lifelong journey in itself.  I am aware of the financial hardships that families have to face in order to give their child the best care possible.  I am aware of all the extra paperwork and hoops that you have to jump through, throughout your child's entire life, just to make sure that they aren't being cheated of something that they deserve.     

Being a parent is hard, hard work.  No one ever said that raising kids was going to be easy.  As parents we are all faced with our own set of unique challenges in making sure our kids grow up to be the best adults that they can be.  Sophia will most likely never be a doctor or a lawyer, but she may just be that person out in your community that turns your day around every time you see her, no matter what she is doing.  And the world DOES need people like that.  I know that in my heart, no matter what Sophia grows up to be, she will make a difference in the lives around her.  And I am happy knowing that.   

Wednesday, October 23, 2013


Today my husband and I celebrate our 9 year wedding anniversary.  I truly feel so lucky to have such an amazing person by my side to share all the good and the bad times with.  When I have been weak, he has been my strength.  When I have been scared, he has been brave for both of us.  When I have felt lonely, he has been there with open arms reaching out to me.  When I have been stressed and worried, he has been the calm that I needed.  And I am forever thankful to have found such an amazing person like Randy.  I can't imagine my life with anyone other than the man I married nine years ago today.  He has proved himself over and over again how great of a husband, and a father, he can be.  I love you Randy and Happy Anniversary!!!!

And just to keep with the Down syndrome Awareness theme this month.....a picture of Sophia :)

Tuesday, October 22, 2013

Inclusion, Acceptance and Tolerance Everywhere

Inclusion is part of a much larger picture then just placement in the regular class within school.  It is being included in life and participating using one's abilities in day to day activities as a member of the community.  Being included is being a part of what everyone else is, and being welcomed and embraced as a member who belongs.  Inclusion should occur everywhere, in schools, churches, playgrounds, work and in recreation. 

We all want to feel wanted.  We all want to be included in certain things that are happening around us.  Feeling accepted, welcomed or embraced into your surroundings is important to everyone.  We all have things that we are capable of contributing to those around us.  We all have a way to make a difference in the world around us.  Finding our place within our family and our community is important.  And being accepted into that role is equally important. 

As human beings, regardless of having a disability or not, we all have basic needs that need to be met in order to feel fulfilled.  Our basic needs of food, water and shelter are necessary for us to exist.  But having meaning and purpose to what you do and who you are, provides inspiration.  Feeling useless or doing things that are meaningless, decreases motivation and self esteem.  A sense of belonging, being loved, having relationships, and friendships with others enriches our lives. 

Some of the benefits of inclusion to the person are:

* Improved feelings of well-being and self-esteem
* Access to resources and activities not available in the group home.
* Expanded "horizons"/life experiences.  Participating in activities in different types of settings.
* Participation - engaging with others; being known.
* Feeling the excitement of being part of a community group
* Opportunities to make new friends and develop new and varied relationships.
* Incentive to learn appropriate social behavior.

Some of the benefits of inclusion to the community are:

* More diversity in their relationships.
* The cost of supporting people decreases when persons served do not have to rely on paid 
    professionals.  This can affect tax dollars needed to provide supports.
* People with disabilities can pay taxes if they have a job.
* People with disabilities share their gifts and talents with the community.
* People in the community can become better educated about differences.

Even if a person isn't able to actually work in the community, just by acknowledging someone out in the community, making eye contact, saying "Hi' or giving a smile as you walk by is important too.  No one wants to feel invisible in the world around them, we all want to feel accepted wherever we go.

Monday, October 21, 2013

Learning with Down syndrome

The more children with Down syndrome you know, the more it is apparent that not all children with Down syndrome are alike.  The fewer you know, the more apt you are to generalize that they are all alike, and that their potential is the same. 

This bothers me.  Especially entering into the school system, I don't want Sophia's educators to simply place her into a learning category simply based on her diagnosis.  Just because someone has taught a child with Down syndrome, doesn't mean that they know what all children with Down syndrome are like or what all children with Down syndrome are capable of.

Children with Down syndrome are not all born with identical learning problems, health problems, appearance, and potential, nor are they born in the same environment.  Even though all children with Down syndrome have some characteristics in common, they are each their own unique person, with their own unique strengths and weaknesses.  Which is why our kids have IEP's (Individualized Education Programs), to meet their own special needs in school. 

School curriculums for your "typical" students are determined by the school district, but the curriculum for a student with special needs is determined by the student's own strengths and weaknesses and written down in his or her IEP.  That student's "team of educators" can then plan a program to the individuals unique needs.  Then if the individualized program is not successful, the team must figure out why and make changes so that it can be.  If the child fails in a program developed just for him or her, then something is wrong with the program. 

Inclusion is something that most parents of children with special needs really strive for.  We want our children to be full members of his or her age appropriate classes to the extent that they can be.  Inclusion not only benefits the child with special needs, but actually benefits the rest of the class even more.  When "typical" children are around children with special needs on a daily basis, they learn about that student.  They ask more questions about that student and really get to know who that student is as a person, not as a diagnosis.  Children are more likely to make friends and help out their classmate when they understand why he or she does the things that they do.  And in turn these "typical" peers go out into the community being more educated about special needs, and hopefully more accepting of others differences.

A well written IEP is so important for children with special needs.  Teachers who only went to school to teach in "regular" education classrooms, are not prepared to teach a child with special needs.  These teachers need the support and the plan of the IEP, and the rest of the child's team, to make their student successful.  I read this next paragraph in a guide book for parents and teachers and thought it was right on:
      'During a team meeting about a child who was to be included in a kindergarten class, the kindergarten teacher said, "Frankly I am scared.  I don't know how to teach this child, what to expect of her, or how to deal with her behaviors."  A father of another girl with Down syndrome who was also at the meeting responded, "Now you know how we felt when we first had her.  We were scared too.  We did not know how to parent her, what to expect from her, or how to deal with her behaviors, but we learned.  You will too."'

It takes a village to raise children, and it takes a village to educate them.  No one person can do it alone.  Some children just learn easier than others.  They require less assistance, no modifications to their work and they just flourish naturally.  But some students need extra help, some just a little and others a lot.  It's a learning process for everyone involved, but you need to have a plan and a support system backing up any child in order for them to shine. 

Some Learning Practices:
*  Inclusion: Being included in a general education classroom is less likely to stigmatize and provide a much more natural environment for the students.  With inclusion there are more opportunities for peer relationships to occur and much of research states that full inclusion works better.  Children with behavioral issues can benefit from seeing the correct way to act in a classroom from his or her peers.  Children with speech delays can benefit from hearing his or her peers communicating to one another on a daily basis.  And your typical peers can learn a very important lesson about accepting everyone around them, no matter what their different abilities might be. 

* Intellectual:  There have been many studies over the years that have documented that many children with Down syndrome plateau---that is, they display a pattern of advances and declines in their rate of development in specific areas.  Just because a student has Down syndrome, don't expect that they will only be able to master skills up to a certain level of learning.  Always strive to move the child along the learning curriculum, and never assume the child isn't capable.  Don't expect and encourage a child to stop learning any more than what they have mastered so far to a certain point.  Learning is a lifetime experience for people who have Down syndrome, just as it is for those who do not. 

*  Short attention spans:  To help students who struggle with attention issues, try making direct instruction into shorter periods of  time along with smaller chunks of activities to help support learning.  Introducing new material slowly, sequentially and in a step by step fashion will help to ensure maximum learning occurs.

*  Distractibility:  For children who are easily distracted, employ strategies that work to minimize distractions such as keeping the student away from a window, using a slightly more structured environment, keeping the noise level down and having an orderly classroom where students are free from surprises and know what your expectations, routines and rules are.

*  Behavior Management Techniques:  Positive reinforcements are always a much better route to take.  And reinforcers need to be meaningful to the student, find out what motivates and drives your student to want to do better. 

Today's classroom has many students with special needs included into it.  Having an inclusive classroom lets all students learn what it means to be a full member of a school community.  Treat all students as valued learners.    

Sunday, October 20, 2013

Raising a Child With Special Needs and One Without

Jayden is your typical big sister, I think.  She secretly LOVES Sophia more than words can say, on the inside, but DISLIKES her little sister, more than words can say, on the outside. 

Sophia is Jayden's first experience at sisterhood.  And because of that, I think that a lot of the things that go along with having a little sister in general, get Jayden confused with having a little sister, who also has Down syndrome.  Jayden seems to associate a lot of Sophia's little sister habits, with her having Down syndrome, and we all know that isn't the case.  Little sisters are suppose to bug their big sisters.  They are suppose to get on their nerves and tear up their stuff and pester them until they want to scream, that's a little sister's job.  But sometimes I get the feeling that Jayden thinks that just because Sophia has Down syndrome, that is why she does all of those things.  I'm not sure Jayden is quite prepared for the double dose of little sister evil that is about to be placed upon her! 

I have told Jayden about Down syndrome.  I have explained to her that even though some things will take Sophia a little longer to learn, she is no different.  I have tried to make her understand that we accept everyone, for who they are.  We don't bully or make fun of others just because they appear different from us.  We accept everyone and play with everyone.  And just because someone has different abilities than we do, doesn't mean that we can't be their friend.  It's always been important to me that my kids would be nice and accepting and stand up for what is right, no matter what.  But sometimes I feel getting my own daughter to accept her own sister's differences is a challenge.  And if I can't get my own kid to accept Sophia for who she is, how do I expect other kids to accept her? 

It's hard to see how Jayden truly feels about her sister, because Sophia is her little sister after all, and she does what a lot of big sisters probably do, torment their little sister tirelessly, day in and day out.  But I have seen Jayden truly scared for her little sister.  I have seen her truly concerned and worried about Sophia.  I have seen glimpses of Jayden standing up for Sophia around other kids, when I wasn't right there with them.  And that, makes my heart sing. 

I want Jayden to grow up and help advocate for Sophia.  I want Jayden to help to be a voice that encourages her peers to accept others for their own abilities.  I want Jayden to be able to stand up for what is right, and protect Sophia when she needs protecting, no matter what the cost is.  I want Jayden to be on the side of inclusion and acceptance, even if she has to stand there alone sometimes.  I want Jayden to be a voice for those around her who don't have their own voice.  And as Sophia's mom, I put a lot of pressure on Jayden to live up to all of these things. 

When I see another child mistreating my kids, I want to go and wring their necks!  Sorry, but that's just how I feel :)  But when I see my own kids mistreating another child....OH HELL NO!  I'll do more than just think about wringing someone's neck!  I never want my kids to be the center of being picked on, or made fun of, or mistreated.  But I also never want my kids to be the ones who are doing those things to another kid.  I worry about peer pressure and feeling like you have to live up to certain standards around your friends, more with Jayden than with Sophia.  When I hear Jayden come home from school and talk about some kid being "weird" or if I'm around Jayden with her friends and someone excludes someone else from playing, and Jayden does nothing about it....I get fired up a little.  My mind immediately jumps to Sophia and I think, what if someone was treating her like that?  I sure hope there will be a brave little kid around who will stand up for her, and I really hope that brave little kid is her big sister. 

Saturday, October 19, 2013

2013 Times Square Video

Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square.

The Times Square Video presentation kicks off Down Syndrome Awareness Month on the morning of the Flagship Buddy Walk® in New York City. NDSS received over a thousand photo submissions for the 2013 Times Square Video contest and the featured photographs highlight children, teens and adults with Down syndrome working, playing and learning alongside friends and family. These collective images promote acceptance and inclusion, which is the foundation of NDSS and the National Buddy Walk® Program.

Click HERE to view this years video!

Learn more about NDSS, the National Buddy Walk® Program and the Times Square Video at

Friday, October 18, 2013

Flashback Friday

Sophia turned ONE!!!!!
She was such a cute little chunk :)