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