Happy Down Syndrome Awareness Month

AND........ HAPPY HALLOWEEN!

Is It Good Enough?

Advocating for Sophia is so important to me.  I want people to see her the way I see her.  I want people to accept her the way we accept her.  I want people to see past what's on the outside and learn about what she has to offer from the inside.

I think it's fair to say that Sophia is a super cutie!  She's petite, and has gorgeous, long, blonde hair, and dazzling, blue eyes, and a smile that melts the coldest heart.  Really, what's not to love?  But she also has a fire in her that gets her into trouble more than once a day.  She likes to test people, a lot.  She's very curious about how much she can get away with around certain people.  Depending on what side of Sophia you see, you either think she is the most adorable little girl ever, or that she is a big, bad bully.  I think most people probably think a little of both!  

As Sophia's mom, I find it safe to say that I know her better than anyone else.  I've seen the good, the bad, the great, and the ugly.  But without a doubt, the good and the great outweigh the bad and the ugly at the end of the day.  Sophia is a five year old little girl, still trying to learn all the rules that society expects us all to follow.  And it's convincing her that she HAS to follow those rules, is what gets a little hard sometimes. 

When I look at some of the things that I post, throughout the year or just during the month of October, I always worry, am I giving out a bad impression about who my daughter is or what it means to have Down syndrome?  Instead of advocating for Sophia, am I doing more harm than good?  

There are so many possibilities associated with a Down syndrome diagnosis; from medical issues, to behavior issues, to cognitive ability.  I have to wonder, do these possibilities scare people......like REALLY scare people?  Sometimes I think that people read about all of these issues and convince themselves that they could never handle any of that.  Forgetting that any of those possibilities could also become an issue with their typical child as well, at some point in his or her life. 

All of my kids pose challenges for me.  Jayden is demanding, and bossy, and feels like the world owes her everything (or at least her Dad and I  owe her everything).  Sophia holds the cards when it comes to behavior challenges, but I must say, Jayden gives her a run for her money some days!  And Adalyn, well she's about the best kid I have right now.....until she learns how to walk and talk!  

We've went through a lot since we learned Sophia had Down syndrome, but there has never been a day where I had regrets.  She has brought more joy and love into my heart then I could ever dream possible.  I love all three of my girls with everything that I have in me, but Sophia did something magical to my life that I never could have experienced if she hadn't been born with a little something extra.  I feel lucky to be her mom.  She has taught me so much about life and people, that I never would have known had it not been for her.  

      

Wordless Wednesday: Ninja Style

Welcome to Holland

Welcome to Holland

"I am often asked to describe the experience of raising a child with a disability, to try and help people who have 

not shared that unique experience to understand it, to imagine how it would feel. It's like this....

When you're going to have a baby, it's like planning a fabulous vacation trip, to Italy. You buy a bunch of guide

 books and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You 

may learn some handy phrases in Italian. It's all very exciting.

"Holland?!?" you say, "What do you mean Holland?? I signed up for Italy!! I'm supposed to be in Italy. All my 

life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important 

thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. 

It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a 

whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a 

while and you catch your breath, you look around.... and you begin to notice that Holland has 

windmills.....Holland has tulips....Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful 

time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's 

what I had planned. And the pain of that will never, ever, ever, ever go away.....because loss of that dream is a 

very, very significant loss.

But....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the 

very special, the very lovely things.....about Holland."

BRITTANY

I reached out to other moms I know who are experiencing a similar journey of mine, raising a child with Down syndrome, and asked if they would want to share their story.  Here is what one mom wrote:

Many people do not know that when I was in high school I spent ALL my free time with the special needs class.  I would go in early to meet them as they were getting off the bus.  I would spend my lunch hour with them, and any free hours I had during the day.  I would arrange for them to come to the gym and watch me and the rest of the guard practice.  I did this for 2 years.....I loved being with them so much, that I had decided that I was going to be a teacher to kids with special needs.  

When I graduated high school, I wasn't ready to go to college, so I took some  time off to just work and spend my time with my now husband, Mike.  We got married two months before I turned 21, and when we found out I was pregnant, we were thrilled!  Since I was only 21, the doctors had no reason to test me for anything.  I did have the Alpha beta protein test, which tests for spinal bifida and Down syndrome.  Everything came back normal.  I wasn't due till the end of June of 1990, but at the end of May of 1990 I came home from work in a lot of pain.  My husband, Mike, ended up taking me to the E.R. and I had to have my appendix out.  I was 8 months pregnant at the time.  They were able to do the surgery without doing any harm to the baby.  My doctor did tell me that coming off the pain medicine may kick me into early labor, and 3 days later, still in the hospital waiting to go home, my water broke!  We found out that our daughter was breech, so back into surgery I went.  On May 28, 1990 at 5:50 A.M. Brittany Renee was born!  She was 6 lbs and 8 oz and 20 inches long......and 4 weeks early!  

The doctors knew right away that Brittany had Down syndrome, but the family didn't want to believe it.  I think my husband took it the hardest.  Taking off out of the hospital to walk around the whole thing.  The doctors wanted him to tell me when I woke up, but he just couldn't.  When I finally woke up, they told me, and I remember looking at them and saying, "ok, what do we need to do?"  I knew from spending my time in the special needs class at school that this was NOT a death sentence.  I also knew that the Lord had sent her to us to take care of her and raise her, and that we had a job to do.  Not one time have I ever questioned Him.  

Riley Hospital came and got Brittany by 11:00 A.M. and everyone, except my husband, went with them.  He stayed behind to be with me since I was still recovering from 2 major surgeries in a week.  I think he really needed me by his side when he did get to go up to Riley, which didn't happen for a week.  While I was still in the hospital, my doctor came in holding my chart saying, "I just don't understand how she could have Down syndrome.  The test came back normal."  I just shrugged my shoulders and said, "It's ok."  

Now it's not been a bed of roses, but it's not a death sentence either.  I would not change a thing that I have done, where my daughter Brittany is concerned.  

Fast forward 22 years, the year is 2012.  Our little Brittany is all dressed up in her cap and gown sitting in the "green dome" with the rest of her high school senior classmates.  The principal gets up to make his speech, and he starts out talking about how everyone has their own hero.  They may be a movie character or in a comic book, but his hero delivers the newspaper to his office everyday with a smile on her face, that makes his day.  By this time, I was in tears.  I knew my daughter delivered the newspaper everyday to him, because she would always come home talking about it.  She loved it!  He continued to talk about how the doctor's didn't give her much hope of living when she was born.  How she had been through a couple of surgeries and was in a wheelchair for a while due to one of her surgeries, but TODAY , she was going to walk up the stairs, and across the stage, to get her diploma.  After he was done, he looked at Brittany sitting out there with her classmates, (I'm fighting back the tears writing this)and everyone in the green dome jumped to their feet and gave our little Brittany a standing ovation while they were wiping their own tears.  Graduation went on, and when it was Brittany's time to walk up the stairs, and across the stage, I was in tears again.  When they called her name, the entire senior body stood once again, followed by the audience, and she received another standing ovation!  I was totally shocked that these young people showed our little Brittany so much love that day.  I can say that at least 50% of the audience did not know Brittany, but it didn't matter.  That day, in 2012, it was Brittany's day.  A day I will never forget.  

- Renee
(Brittany's Mom)  

Selfie Sunday....mom and sister

The Creed of Babies with Down syndrome

The Creed of Babies with Down Syndrome

My face may be different, but my feelings the same

I laugh and I cry and I take pride in my gains

I was sent here among you, to teach you to love

As God in the heavens, looks down from above

To Him I am no different, his love knows no bounds

It's those here among you, in cities and towns

That judge me by standards, that man has imparted

But this family I've chosen, will help me get started

For I'm one of the children, so special and few

That came here to learn, the same lessons as you

That love is acceptance, it comes from the heart

We all have the same purpose, though not from the start

The Lord gave me life, to love and embrace

And I'll do as you do, but at my own pace

- author unknown   

Wabash Valley S.T.A.R.S.

Receiving any kind of diagnosis for your child can be scary.  People are typically afraid of what they don't know.  For me, I can honestly say that I don't think I had ever met a person with Down syndrome before my daughter was born.  And I find that very sad.  How did I go 28 years and never meet a person with Down syndrome, or really never have much interaction with people with intellectual disabilities?  Looking back, it's hard to understand how that even happens.  Today, everywhere I go there are people with intellectual disabilities.  Adults working in the community, kids going to school with my kids, families out eating with each other......the list could go on and on.  So how did I go most of my life never experiencing life the way I am experiencing it now?

When Sophia was 7-8 months old, I was put in contact with a local mom, who had a son with Down syndrome.  She invited me to be a part of a local group called, the Wabash Valley S.T.A.R.S. (striving toward acceptance, respect and support.)  Wabash Valley S.T.A.R.S. is a play/support group for parents, caregivers and families who have a loved one with Down syndrome.  Going to that group that day, 4 1/2 years ago, was one of the best things I ever did.  It gave me a chance to meet some incredible families, who have helped me along this journey.  They have given me support, advice, and a shoulder to lean on when I just needed a break.

I value the friendships that I have developed with people from our support group.  Walking down the road of special needs isn't always easy, but it's always been worth it.  As parents who all have a child with special needs, we can relate on a whole other level than with parents who don't know what it's like to raise a child with developmental delays.  These women for me are my safety net.  Whether they are walking ahead of me, beside me, or behind me, we are all in this together.  When it feels like the world is against you some days, it's nice to know your always have someone who understands.

But being a part of the Wabash Valley S.T.A.R.S. has not only benefited me, it's impacting my entire family.  My girls are going to grow up knowing that just because people are different from one another, doesn't mean that we treat them with any less friendship or respect.

I grew up being a little intimidated by individuals with special needs.  I felt uncomfortable if I couldn't understand what was being spoken to me.  I felt awkward if someone displayed actions that weren't considered "socially acceptable".  Those were MY issues, not anybody else's.  My kids are learning that things don't always happen the same way with every person.  We all look different, and sound different, and act different......and that's ok.

**You can find Wabash Valley S.T.A.R.S. on facebook and get information about upcoming events!**              

I Have Down syndrome.....Know Me Before You Judge Me

**This post was originally written on 3/3/2011**

"its whats on the inside that counts"

I came across another GREAT article that was published in National Geographic for Kids and wanted to share it with my readers!  Click HERE to read, I Have Down Syndrome--Know Me Before You Judge Me.

Wordless Wednesday.....Cute and Crazy

21 Things About Sophia

1.  Sophia likes wrestling....yes, WWE wrestling.  Her favorite wrestler is, John Cena.  She even has his "you can't see me" hand move down, and does it every time Monday Night RAW comes on.

2.  Sophia is a BIG sister and a little sister.  She has the annoying little sister and the bossy big sister roles down perfectly.

3.  Sophia is a cuddler.  She loves to be held and snuggled with, and at five years old, she still fits perfectly in my arms :)

4.  Sophia's favorite foods are: pizza, ice cream, goldfish crackers, chips, and popcorn.

5.  Sophia's favorite shows/movies are: BARNEY! BARNEY! BARNEY!  More recently though she has expanded her viewing pleasures to movies like; Diary of a Wimpy Kid (Rodrick Rules and Dog Days), Despicable Me 2, Judy Moody and the Not So Bummer Summer, Toy Story 3, and Frozen.

6.  Sophia's favorite outdoor activities are: riding her bike or scooter, taking our dog for walks, jumping on the trampoline, swinging, swimming, and playing anything that involves a ball.  Sophia also plays t-ball in the spring through a Buddy program and she LOVES it!  We can't wait for Spring!!!

7.  Sophia knows a lot of signs and uses those to communicate.  She also uses a lot of gesturing to get her point across as well.  We are currently trying out a communication device, called a Vantage Lite, to help her communicate on a bigger scale.  Within the past year though, Sophia's verbal communication has exploded. She is saying so many new words daily!  Some of it is still hard to understand by people who aren't around her all the time, but she is definitely making great progress!  Her newest phrase, which you can understand very clearly is; "bad baby!"  (Adalyn is starting to give Sophia a taste of her own medicine!)

8.  Whenever Sophia gets a hold of anyone's iPhone, the first thing she goes to are the pictures!  She loves looking at pictures, and always knows exactly where to go to find them!  Then after she's looked at the pictures, she starts trying to make phone calls......"Hello, China?"

9.  Sophia is a very forgiving little girl, but she doesn't easily forget.  Which makes going to the doctor, or hospital, VERY, VERY hard sometimes :(

10. Sophia has a laugh , a smile, and even an up-to-no-good, naughty grin that will make your face light up and your heart fill over with love every single time.  Which makes it really hard to get mad, or stay mad, at her :)

11. Sophia is a trickster.  She loves making you think one thing, but doing another.  One of her favorite tricks to pull is offering someone food, then snatching it away right when you try to grab it.  She gets a kick out of doing this.....every time!

12.  When Sophia "pretend" laughs, she puts her open hand over the front of her mouth and shakes her head up and down.....like "it's" the funniest thing ever.

13. Sophia loves to play hide and seek.  She is the worst at hiding.  She doesn't have the attention span to stay hidden, or quiet, but she is a great seeker!

14. Sophia can tell you off without even speaking an actual word.  She gets her finger wagging, and her jabber going, and her head shaking back and forth....and you just know she means business.  Her Daddy and our Shelby Dog get this the most :)

15. Sophia loves shoes!  If she finds a pair without feet in them, she will put her feet in them, and off she goes!

16. Sophia loves wearing Jayden's clothes.....no matter how big they are on her.  She also loves wearing her cousins clothes when we go to visit them.  She will put everything from HIS shirt, pants, shoes, and his underwear on!

17. Sophia loves to do gymnastics, even though she has never actually taken gymnastics.  She has her somersault, and her cartwheel down to perfection......well almost perfection :)

18. Sophia loves to rub, and scratch, other people's skin, but HATES when someone tries to rub her arm or back.

19. Sophia attends all day kindergarten, and even though it can be a really LONG day for her, sometimes accompanied by numerous time outs,  she loves school!!  Every morning she'll ask, and sign, "school?"  And when I confirm, "yes!" she gets the biggest smile on her face :)

20. Sophia loves to go places, especially with Mommy.  It's almost impossible for me to tell her she can't go with me somewhere, because she knows when I'm about to leave, and she will follow me around, with a sad puppy dog face, saying over and over, "I go?"  Usually I confirm with a "yes, you can go." and she gets SO happy and excited.  But occasionally I have to say, "no, not this time" and you would think her little world just ended right then and there :(

21. And finally #21.....Sophia is a five year old little girl.  She loves to play and be around people.  She is curious and loves to explore her surroundings.  She loves with her whole heart, never judging those around her.  Her life is full of happiness, silliness, and laughter most days, but she definitely has her share of  sad, bad, and mad days too.  She's a child.  She's a daughter, a sister, a niece, a cousin, a friend, a granddaughter, a student, and a growing little girl......who wants all the things we all do.

Oh yeah, and Sophia has an extra 21st chromosome, also known as Down syndrome.

I Love Her Just the Way She Is

I know that people look at me with Sophia sometimes and think, "How does she do it?"  I use to look at other moms, and dads, and think the same thing.

A lot of days consist of Sophia getting into EVERYTHING.  Constantly testing anyone's patience that she can.  She LOVES to keep everyone on their toes, every second of the day.  I find myself constantly following her around when we are away from our house, her second shadow I guess you could say.  I also find myself constantly reminding her how to act, what is appropriate behavior and what is inappropriate behavior.  I don't feel safe leaving her unattended for even short periods of time.  I always have my eyes open, my ears listening, and my feet ready to run after her if I need to.  It's our normal.  That's just how it's always been.

I try and give Sophia space to show me that she can be "trusted" in certain situations.  Sometimes she succeeds and sometimes......she doesn't.  It's a learning process.  Sometimes it feels like an extremely LONG learning process, but a process that we are determined to conquer! (And a process that we have had huge gains in!)

I'd be lying if I didn't say I wish there was an off switch that I could flip sometimes.  I get tired and lazy and just want to sit back and watch, instead of being on the front lines playing "catch me if you can"!

But the truth in all of this is, I love Sophia, just the way she is.  She brings joy and happiness and adventure in our lives.  She's unfiltered when it comes to her curiosity and her ability to show love and affection to anyone.  She's pure and honest and tells it just how she sees it.

I look back at situations that we are in all the time.  I think about how stressed out and crazy I felt in those moments.  I think about how I felt like I was being judged by everyone around us, or worse, how Sophia was being judged.  Then I get home and we all settle back down into the comfort of our own home and I think about how maybe the problem wasn't Sophia, but it was me.  Me trying to please everyone else around us, instead of just letting my child be who she is.

As a parent, you always have good days, and bad days, and great days, and really ugly days.  But at the end of the day, when I put my babies to bed and we lay there reading books and snuggling close to each other, it always brings me back to why I wanted to be a mom.  It doesn't matter which child of mine it is, I always feel so blessed to have been given the opportunity to be a part of their life, Down syndrome or not.

Selfie Sunday...Jayden and Sophia style

I Am Not a Down's Kid

**This post was originally written on 10/12/2013**

Person first language....It is SO important!  I get it, no one wants to have someone else telling them how they can talk or how they should talk or what is "politically correct."  Most of the time we say things without even realizing that we are offending someone.  We don't mean to be insensitive.  We don't mean to come off sounding like a jerk or sounding degrading to another human being.  But the truth is, words have the power to either help, or hurt, another human being.  And out of respect for others, I think it's important to educate ourselves and be aware of the things that are coming out of our mouths.  It's one thing to say something hurtful or offensive and not realize that you are even doing it, but to be educated about how it is disrespectful to certain people and still go on being offensive, is not okay.

Person first language is important to all individuals with different abilities, not just individuals with Down syndrome.  But because I am blogging about Down syndrome, this post is geared more toward person first language and individuals with Down syndrome.

A baby born with Down syndrome is not a "Down's baby," or a "baby with Down's".  Just like a child or adult with Down syndrome is not a "Down's child" or "Down's adult."  When describing a person with Down syndrome, always place the person before the disability.  This emphasizes the person first and the disability second.  For instant, a baby (child/adult) with Down syndrome.

I'm sure you have heard both; Down syndrome and Down's syndrome.  The correct wording is Down syndrome.  No 's' after Down and the 's' on syndrome is not capitalized.  Dr. John Langdon Down provided the first formal description of the syndrome, but he himself did not have Down syndrome.  Therefore, no possessive is used in the word Down, but it is capitalized because it was named after Dr. Down.

Individuals with Down syndrome do not "suffer" from Down syndrome, nor are they "afflicted" by Down syndrome.  An individual with Down syndrome simply "has" Down syndrome.

Down syndrome is a chromosomal disorder that is present at conception.  Using the term "birth defect" or "disease" in relation to Down syndrome is incorrect.  There is no known cure for Down syndrome, so these terms are inaccurate.

Avoid generalizing people with Down syndrome as 'always loving', 'always smiling', or 'always happy'.  People with Down syndrome are not all alike.  The diversity of abilities and characteristics among individuals with Down syndrome can be best described as the same for the general population.

When talking about a person with Down syndrome and their peers, instead of referring to their peers as "normal", use the word "typical" instead.

Overall, person first language emphasizes respect for the individual.  If mentioning Down syndrome is not relevant to the conversation, why even bother bringing it up at all?  A child is a child first, way more than a label!    

**Some other basic guidelines for using People First Language, provided by the National Down Syndrome Congress, are:
 

Put people first, not their disability

• A “person with a disability”, not a “disabled person”
• A “child with autism”, not an “autistic child”

Use emotionally neutral expressions

• A person “with” cerebral palsy, not “afflicted with” cerebral palsy
• An individual who had a stroke, not a stroke “victim”
• A person “has” Down syndrome, not “suffers from” Down syndrome

Emphasize abilities, not limitations

• A person “uses a wheelchair”, not “wheelchair-bound”
• A child “receives special education services”, not “in special ed”

Adopt preferred language

• A “cognitive disability” or “intellectual disability” is preferred over “mentally retarded”
• “Typically developing” or “typical” is preferred over “normal”
• “Accessible” parking space or hotel room is preferred over “handicapped”

Your Child has Down syndrome......Now What?

**This post was originally written on 10/15/2013**

I can still remember that moment in the delivery room.  My OB/GYN and the neonatologist came into my room after Sophia had already been taken down to the nursery and they informed me, with long, sad faces, that they suspected my daughter had Down syndrome.......

I remember waiting for the rest of the story.  There had to be more to it than just that.  Especially by the looks on their faces, there just had to be something else that they weren't telling me.  But right then, that was it.  I can honestly say that I had no idea what that really meant in that moment.  An image came into my mind after hearing the news, but that's all I knew.  I had just seen my daughter moments before.  I had held her and told her I loved her and looked into her beautiful blue eyes and I saw nothing.  Nothing except an absolutely perfect little piece of Heaven.

Soon after that we were told of some medical issues that Sophia had and she would be getting transferred the following day to the closest Children's Hospital.  This is when all the real fun began.  We spent the next month just trying to function day to day, with normal life as we once knew it and this new life of hospitals and monitors and tubes and surgeries....It was hard.  But our focus was on our baby and getting her healthy enough to bring home.  In these first few moments, Down syndrome was the least of our concerns.

When Sophia was healthy enough to come home, things began to get real.  Of course my main concern was just taking care of my new baby and loving her, but was that really enough?  Yes and no.  She needed me to be a mom.  She needed all the love and attention I had to give to her.  She needed talked to and cuddled and fussed over, just like any newborn baby, but she also needed more.....

First Steps:  An in home service that provides trained therapists to come and work with your child on meeting milestones from the ages of birth to 3 years.  Therapy was very important for Sophia, and still is.  Milestones that so many parents take for granted, are a lot of work for babies with Down syndrome to meet.  Getting your child started with therapy is so important, especially from the very beginning.

Medicaid Disability and the Waiver program:  I knew that our family didn't qualify for Medicaid, so I saw no reason to go and fill anything out.  Then one day, by chance, I ran across a table set up at the Children's Hospital and they had information about waivers.  No one had ever mentioned anything about a waiver or what that meant.  But I soon found out that waivers are not based on the parent's income, but the child's income....which was nothing.  I was told, that even though we wouldn't qualify for Medicaid based on our income, we still needed to go and fill out an application for Medicaid so that we could apply for the Medicaid waiver.  Basically a Medicaid waiver can provide your child with additional services as they grow.  There is a pretty long waiting list for some of the waivers, which is why it is important to get your paperwork filled out early.  For more information on waivers, you can call your local Bureau of Developmental Disabilities Services (BDDS) office or even contact someone more knowledgeable from Family Voices Indiana or ASK to help you in the process.

See Specialists:  If your baby was born pretty healthy, you may not realize that children with Down syndrome can have some health issues, more so than your typical kid.  Its a good idea to check in with some specialists to make sure that everything is working the way it should.  The Down Syndrome Clinic at your nearest Children's Hospital is a good place to start.  They have doctors who specialize in the care and well being of individuals with Down syndrome.  Other specialists to consider seeing would be a Cardiologist and a Pulmonologist.  A lot of children with Down syndrome have heart defects, some that require surgery, and others that heal on their own.  Making sure that your child has a healthy heart is very important.  A lot of children, and adults, with Down syndrome have sleep apnea or other pulmonary issues.  So having a sleep study done if you notice any unusual sleep patterns or breathing issues is very important as well.  Your child should have his or her hearing checked every 6 months in the beginning and an annual eye exam.  Some other tests to consider having annually, and these can be done at your local pediatricians office too, are having your child's thyroid checked, doing a complete blood count (CBC), and testing for Celiac Disease.  We love our local pediatrician, but we have found great comfort in having our daughter monitored and check annually at the nearest Children's Hospital.  They specialize in kids with special needs, whatever those needs might be, and staying one step ahead of your child's health is always important.

Look into a Special Needs Trust for your child's future:  Setting up a will and planning for your child's future, should something ever happen to you and your spouse, is something most parents think about.  But when you have a child with special needs, who is dependent on government assistance, or will be when they turn 18, it's important to have all your ducks in a row should you and your spouse not be there to care for him or her.  Leaving money to your children is a great thing.  But leaving money to a child with special needs, can be the worst thing anyone could do.  Don't get me wrong, you can leave money to your child with special needs, and you should leave money to your child, but you have to be very careful with how you leave your money to your child with special needs so that you don't effect their services that they may be receiving from the government.  A child with special needs is only allowed to have $1500, I think, in their name before it can effect what they receive from the government.  If they have more than that, they can be cut from all services they are receiving and in turn have to drain their savings in order to continue getting therapies, providing expensive healthcare for their health needs, and anything else they may benefit from in order to possibly be as independent as possible.  Lets just say, that savings will drain out very quickly, leaving your child with no money and back on a long waiting list to get their government assistance back.  And what do they do in the mean time?  With a special needs trust, your child can benefit from the assistance provided by the government and have their own little nest egg for things they may enjoy doing in the community or to travel to see family or whatever!  Setting up a special needs trust is easy, but you do need to see a financial planner/attorney who specializes in doing such things.  The wording of the trust is VERY IMPORTANT.  When we set up Sophia's trust, we went through MetLife, out of Indianapolis.  We met with a financial planner, who worked hand in hand with an attorney, who set up  our will and our trust for Sophia in a way that will only help her should something ever happen to my husband and myself.  A special needs trust can be a little costly, but it is worth every penny!  To know that your child will be taken care should anything ever happen to you, is priceless.  There are also payment plans that can be worked out and you can usually receive a free consultation, just to find out more about the special needs trust and your specific circumstances revolving your finances and your child(ren).  Of course this isn't something that we ran out and did immediately, but something to consider sooner rather than later. 

Most importantly, LOVE YOUR BABY FIRST!  Your child with special needs is a child first and foremost.  He or She needs love and affection above all else.

Educate yourself on your child's special needs and his or her diagnosis.  This will help you to advocate for your child better.  You may be the only voice your child has...you'll need to use it!

Get support.  Not just for your child, but for you.  You need a strong support system in order to help you stay strong for your child.  If it's family, great!  If it's close friends, awesome!  If it's an online support system, fabulous!  Any kind of support that you can get will only help you push through those hard times and come out standing taller on the other side.  And I have to be honest, there will be hard times.  Raising a child with special needs is full of roadblocks and obstacles.  It can feel like a fight, day in and day out.  But your child will be worth it!  You will find greater triumph in your successes as a parent, and their successes as your child, than you can even imagine.  Never feel like as a parent you are taking your journey alone, because there is always someone out there who can relate to the same journey.  Find them and connect with them.  Having support, is so important!      

**If you can add to my list of important things to do after bringing home a child with special needs, please comment!      

I Call Bullshit

**This post was originally written on 9/4/2013**

"God only gives special children to special families."



I've seen this story on Facebook a lot recently and I just don't buy it.  Not the story, the saying.  I thought the story was great.  It's nice to know that when someone sees you struggling in the moment or having a bad day, that they would reach out and do something nice for you, to hopefully brighten your day or make things a little easier in that moment.  We need more people like this in the world. 

I know that when someone says, "God only gives special children to special families," it's meant as a compliment.  It's meant to say that you are doing an amazing job with the cards that you were dealt and I admire all that you do for your child.  But honestly, I don't feel any more special than anybody else and I really don't want people looking at me and putting me up on this pedestal like I'm this great person because I have a daughter with special needs.  I'm just a mom, like millions of other moms around the world who love their children tirelessly and would move every mountain in order for them to have fulfilling lives.  I've done the things that I've done for Sophia, not because I wanted to do them, but because I had to do them.  I didn't want to put Sophia through multiple surgeries before she was even a year old, but I had no choice.  I didn't want Sophia to have to use a feeding tube and be hooked up to oxygen, but I had no choice.  I didn't want Sophia to be delayed in her gross motor, fine motor, cognitive and speech skills, but I don't have a choice in that either.  As a family, we were given a child who has different abilities than your typical developing child, and instead of turning our backs on her and walking away, we did what any good parent would do.....we stepped up to the plate and loved our child, unconditionally.  As a parent, would you not do the same thing for your child? 

Before I had Sophia, I remember thinking that I could NEVER handle a child with special needs.  I wouldn't have the patience or the strength to do what I saw other families doing with their child with special needs.  I always said to myself, "I could never do that."  It's so funny to think back on those days.  I've realized over the past few years, that I am capable of so much more than I give myself credit for.  I can be strong and patient.  I can be an advocate and a fighter.  But most importantly, I can love my child, unconditionally, no matter what her abilities are.  And I can do these things, not because I'm special, but because I'm a mom who cares. 

Yes, Sophia has special needs, but I don't see her as being any more special than my other daughter who doesn't have special needs.  I feel blessed to have be given the opportunity to be a mother to my girls.  I know of too many wonderful women who can't have children, and if you ever watch TV at all, you also know that there are a lot of very unfit women out there being blessed every day with  children that they don't want or refuse to take care of.  I do believe that every thing in our lives happens for a reason.  Sometimes it's hard to understand why certain things happen, but I believe that full circle there is always a positive, even for the hardest to imagine negative.  

If I believed that God thought I was a "special one" and in return gave me my amazing daughter Sophia, then what about all of the other moms out there who don't have a child with special needs, but still fight the fight each and ever day in order to give their kids everything that they need in life to succeed?  Are they not just as special as I am?           

Wordless Wednesday.....Big sister, Little sister

Finding Support

**This post was originally written on 10-14-2013**

When we go through rough patches in life, we turn to people for help, for support.  But what if no one understands what you're going through?  What if no one around you can relate to your hard times?  No matter how hard people try to be there for you and give you tips and advice, sometimes it's just not enough.  You need people you can talk to who really understand your struggles and frustrations.  You need people who will listen to you vent and know exactly what you are talking about.  You need people who understand that no matter how much you gripe and complain, you don't want to take anything away from your life, you just want to find helpful solutions to make it better.

Getting a Down syndrome diagnosis, before or after birth, can be extremely hard for some families.  A lot of people who receive a diagnosis, actually know very little about Down syndrome and possibly have never met an individual with Down syndrome.  And the scary truth is, a lot of these families can't even turn to their own doctor for up-to-date, accurate, information about the life of someone with Down syndrome, because what they know is very little or out-dated all together.

The life of a person with Down syndrome has changed DRASTICALLY over the years.  There are so many resources available today to help individuals with intellectual disabilities grow into independent adults.  Having a child with Down syndrome is not the end of the world.  It isn't a death sentence for your family or your child.  There are no limits to what individuals with Down syndrome can do.  Each person is unique in his or her own way.  Yes, things take a little more work and sometimes require modifications in order to learn what is needed in life, but individuals with Down syndrome DO learn.  The sky really is the limit.  Just because your child has a diagnosis of Down syndrome, never let anybody tell you that something isn't possible, anything is possible! 

Some support groups that I have found helpful so far on my journey with Down syndrome are:

*  The Down Syndrome group on Babycenter.com
*  The Down Syndrome Mommies group on Facebook
*   Parents with Children/Adults with Down Syndrome in Indiana group on Facebook
*  Our Adventures with Down Syndrome group on Facebook
*  Baby Center Down Syndrome Mom's group on Facebook
*  Our local Down syndrome chapter, Down Syndrome Indiana, based out of Indianapolis
*  Our community Down Syndrome Support/Play group here in the Wabash Valley; The Wabash Valley S.T.A.R.S. (Also on Facebook)
*  Family Voices Indiana (Also on Facebook) - which is a family-led organization that provides information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them.  I believe that everyone, or almost everyone, at Family Voices has a child(ren) with special needs and can better understand where parents are coming from.
*  ASK (About Special Kids: Also on Facebook) - This is a place for families and professionals in Indiana to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics such as health insurance, special education, community resources and medical homes. ASK is a connection to family support in the state of Indiana!

All of these support options are places where parents can start asking questions, sharing joys and concerns, get advice and share information with other parents.  There are so many people, from all different walks of life, out there walking the same journey that we are.  All you have to do is reach out and connect with someone.  And most importantly, know that you are not alone!

**If there are other places you know of where families can go for overall support, more so in Indiana, please include them as a comment!!!

The R Word

What would Down Syndrome Awareness Month be without a post about the R word?

The word "retard" and "retarded" were words that use to be used to describe individuals like my daughter Sophia.  In the medical field she would have been referred to as being "mentally retarded", or slow in development.  But today, those words, "retard" and "retarded", are no longer acceptable and are no longer being tolerated by people like myself.

When have you heard these words and felt like the person using them were giving a compliment to someone, or something, else?  Very likely, never.  When people use the R word, it's not used as a compliment, it's used as an insult.  Society has turned the R word into a slang term that means dumb or stupid.  Even in the medical and educational fields the term "mentally retarded" should no longer be used, but instead it should be replaced with the term "intellectual disability", thanks to Rosa's Law.

It's important to me that people not use the R word.  It's important to my family that people not use the R word.  It's important to a lot of people involved in the special needs communities that society not use the R word.  And one day, it will be important to my daughter Sophia that people not use the R word.

As a parent to daughter who has an intellectual disability, I advocate for my daughter every day.  I push for her to be included, accepted, and respected as a person.  This is one less battle that I would like to fight as my daughter gets older.  It's just a word, I get that.  But to me, it's a very powerful word, that holds a lot of hate and disrespect.

There is a campaign called, Spread the Word to End the Word.  This campaign asks people to pledge to stop saying the R word as a starting point toward creating more accepting attitudes and communities for all people.  Language affects attitudes and attitudes affect actions.  Go HERE to learn more about the pledge, and pledge today to use respectful, people-first language!

Selfie Sunday, Buddy Walk Style

Buddy Walk 2014

Sophia and Mommy....hanging out at the Buddy Walk :)

Buddy Walk History

We are gearing up for the Buddy Walk TODAY, so I thought I would repost the history of the Buddy Walk from a post I did last year on October 7, 2013.....

Introduced in 1995 by the National Down Syndrome Society (NDSS), the Buddy Walk was a major breakthrough in promoting the acceptance and inclusion of all people with Down syndrome.  The Buddy Walk has become the premier advocacy event for Down syndrome in the United States.  It is also the world's most widely recognized public awareness program for the Down syndrome community.  It also celebrates Down Syndrome Awareness Month in October.

Chris Burke led the flagship New York City Buddy Walk in 1995.

In 1999, NDSS introduced the Times Square Video to bring attention to the Buddy Walk program and raise awareness of individuals with Down syndrome in a public setting.  Also this year, the Buddy Walk added a fundraising component to raise money for local and national programs and services.  Sophia has her very own fundraising page at: http://www.firstgiving.com/fundraiser/dixie-russell/16th-annual-buddy-walk  And in the past 5 years, Sophia, along with lots of great supporters, has helped raise almost $7,500 for Down Syndrome Awareness!

Some of the programs and services that are given locally, out of Indianapolis, through Down Syndrome Indiana are: New Parent Information & Resource Packets, given to expecting mothers or families who have just welcomed a new baby into their lives sporting that extra chromosome.  Also Educators' Resources to help better prepare you and your child's educational team for the school years ahead.  Social Activities for families to get together, and Support for Research and Advocacy.  Informational and Education Conferences are also organized, as well as Camp HI-Lite Scholarships, which gives school aged and adolescent kids with Down syndrome a one week outdoor living experience.

In 2001, a national Wal-Mart commercial featuring footage of the Buddy Walk in Colorado Springs ,CO aired, which had a large impact in raising awareness about the Buddy Walk.  Many new Walks were organized as a result of the publicity the national program received.  This year, over 100 Buddy Walk events took place!

In 2002, Actor John C. McGinley, most notable for his roles as Perry Cox in Scrubs, Bob Slydell in Office Space, Sergeant Red O'Neill in Oliver Stone's Platoon and Marv in Stone's Wall Street, joined the NDSS as National Buddy Walk Spokesman.

In 2003, the NDSS hired a National Buddy Walk Coordinator to oversee the direction of the program and assist local organizers.  More than 190 Buddy Walk events took place in 49 states and 5 countries with over 180,000 participants.  Raising more than $2.5 million.

In 2004, nine years after the first Buddy Walk was introduced, they went from 17 Walks to now 210 Buddy Walk events, with over 200,000 participants and raising more than $4.5 million.

In 2005, the NDSS celebrated 10 years of the Buddy Walk!  From 1995-2005 over 1.5 million people participated in he Buddy Walks, and more than 250 Buddy Walk events took place raising more than $5.5 million.

In 2008, the National Buddy Walk Program welcomed it's first regional and national partners: Regal Entertainment Group; Knology; and the American Physical Association, Section on Pediatrics.  The Buddy Walk public service announcement, staring TV Host Nancy O'Dell, TV Host Meredith Vieira, Actor John C. McGinley, Actor and NDSS Goodwill Ambassador Chris Burke, and Actress Andrea Friedman, was played nationwide at all Regal Cinemas before every movie for two weeks to celebrate Down Syndrome Awareness Month and the National Buddy Walk program.

In 2009, NDSS held the first Buddy Walk Conference in Columbus, Ohio where Buddy Walk organizers were able to learn from NDSS leadership and share best practices with one another.
The first Buddy Walk held on a military base in a combat zone took place this year at Camp Phoenix in Kabul, Afghanistan.  2009 was also the year Sophia was born and our first year participating in the Buddy Walk held at Celebration Plaza in Indianapolis, IN.  This year we raised $825 for Down Syndrome Awareness, and had our first team of 15 walkers for the Buddy Walk!

In 2010, Sophia's Stars raised $1,355 for Down Syndrome Indiana and had a total of 24 walkers support us at the Buddy Walk!

In 2011, more than 250 Buddy Walk events took place with over 285,000 participants raising more than $11 million.  Sophia's Stars raised $1,495 for Down Syndrome Indiana this year and had our best year for walking support with 36 friends and family showing up to walk in the Buddy Walk!

In 2012, the Buddy Walk was ranked in the top 30 fundraising events nationwide for: money raised, number of participants and best series event since 2008 according to Run Walk Ride Fundraising Council Survey results.
Sophia's Stars raised the most money to date this year, with $1,775 in donations for Down Syndrome Indiana!  We had 26 walkers supporting Sophia in Indianapolis last year for the 15th annual DSI Buddy Walk!

Our family looks forward to the Buddy Walk every year.  It's a chance for our closest friends and family to come together and support not only Sophia, but all individuals with Down syndrome!

** For more information on the history of the NDSS Buddy Walk you can visit HERE.  Also, check out my links highlighted above for more info!

  

Five Years Walking

A WALK DOWN BUDDY WALK LANE.........

Our First Buddy Walk.....October 2009 

Buddy Walk # 2....October 2010

 

Buddy Walk # 3.....October 2011

Buddy Walk 4....October 2012 (the only year we recycled our shirts.)

Buddy Walk 2014....5 years walking for this cutie!

Buddy Walk #6......pictures to come!

Do They See It?

*This post was originally written on 10/15/2012*

When Sophia was first born and handed over to me to hold briefly, I didn't notice any of the features that typically indicates Down syndrome.  I had no clue that shortly after her birth, doctors would come back into that delivery room and tell me that they suspected a Down syndrome diagnosis.  I know that I looked at her as I held her in my arms.  I remember looking into those big, beautiful, blue eyes and being scared out of my mind that I had just had a baby, 6 weeks early, but I also remember feeling happy and excited, because as far as I knew, everything was okay.

There are some distinct physcial features that are more common in children who have Down syndrome and are what doctors look for when they suspect that a baby may have Down syndrome.

1.  Almond Shaped Eyes: Where the outer corner of the eye will be turned up rather than down.  It is similiar to that of someone of Asian descent and will most likely be the most predominant physical feature of Down syndrome as the child grows.

2.  Brushfield Spots: Are the white flecks that can be seen close to the periphery of the iris (the colored spot) of the eye.

3.  Flat Proflie: There isn't much curve from the nose, cheeks or mouth.  The cheeks also tend to hang when looking at the child from the front, which is due to poor tone in the muscles of the face.

4.  Protuberant Tongue:  Due to either a small mouth and a large tongue or again just poor mucle tone in the tongue, some individuals with Down syndrome tend to let their tongue stick out of their mouth more until they build up that tone to keep it inside their mouth.

5.  Single Palmer Crease or Simian Crease: This is a single crease across the palm of  the hand.  Less then half of babies born with Down syndrome have this.

6.  Hypotonia: Is low muscle tone.  Babies with Down syndrome tend to be more floppy or limp feeling.  This affects every muscle from face to ankles.  Which is why therapy is SO IMPORTANT from the very begining.  Your muscle tone affects EVERYTHING!  The way you move, talk, eat and so much more!

7.  Sandal Gap Toes:  A wide space between the big toe and the second toe.  Which makes it perfect for wearing sandals :)

Not all babies with Down syndrome are born with all these markers and just because your baby has a few of these markers, that doesn't necessarily mean that your baby has Down syndrome.  These markers are just more commonly found in babies who rock that extra chromosome.

Looking back at pictures of her right after birth, I see it.  And sometimes I wonder, how did I not see it then?  When you're walking down the street, or in the store, and you see someone with distinct features, you are usually drawn to that first.  You just know that something is "different" about them, even if you can't actually pin point exactly what it is, you just know. 

I sometimes find myself wondering when we are out in public places, do they know that Sophia has Down syndrome?  Can these people really tell?  Because most of the time I don't notice.  That may seem kind of strange, but what I mean is, Sophia doesn't scream, "I have Down syndrome" to me.  She just screams, "I'm your daughter, a little girl, a person, who has hopes and dreams and can do anything that I put my mind to.  I have feelings and I want to be accepted because who I am is exactly who I was supposed to be." 

Last year, on World Down Syndrome Day (3-21), I went to Jayden's preschool and read a book about Sophia and her extra chromosome to the class.  It was simple and more than anything it said, it's ok to be different.  Just because someone is different than you, they still have feelings like you do and it's ok to be friends with them.  I'm not sure how much those 5 year olds got out of it, but I plan on following both of my kids through school, if the school will let me, and reading this book to both of their classes year after year.  My thoughts are, you can't blame someone for doing something that they don't know is wrong.  Children learn their behaviors from a lot of places, and if they are getting negative information from somewhere else, like that individuals like my daughter are weird and don't deserve their friendship, then I want to set the record straight and let them know that she is just like them and that they could only be so lucky to be her friend!