The Hailey Herald

The Hailey Herald

Saturday, September 6, 2014

Back at Preschool

The summer was short this year.  Just barely over two months.  The kids did a lot of playing with friends, a little swimming, a few trips to the zoo and Kings Island and a trip to visit family in Indiana.  Routine and schedule were not really in the vocabulary until the week before school...oops!  Hailey started a week after the boys.  The boys started the day after Brayden's 11th birthday.  I'm not sure where the years have gone! 

The boys are less than thrilled with my annual back to school photos.  They humor me, but not all the smiles are genuine!  Ian started 2nd grade and Brayden headed to 5th grade.

Hailey seemed a little lost without the boys for the week, but the smiles she gave them when they returned home were absolutely priceless!!!  She walked around all week with her backpack.  A week later, it was her turn.  She even chose her own dress.  We were walking through the Disney store when she announced "want it" to this Doc McStuffins dress.  It was hard to say no!  She was happy to put on her backpack, but doesn't always cooperate for the camera.  It normally is a two or three person job!

Look out she comes...ready or not!

She returned without skipping a beat.  No tears, no whining, not even a wave bye for momma.  My big girl was off again.

Since she has started school, we have gotten a few reports from her teacher and therapists.  For the most part, it has all been positive.  We have had a couple of not great words used....defiant...her own agenda...  Hmmm....imagine that!?!?  I love this little girl with all my heart, but neither of those comments surprised me, but they stung a little.  The defiance has gotten better.  Hailey has issues transitioning from one activity to another.  She prefers a:  it to be her idea or b: that she finishes with what she's doing before moving on.  She is like that at home.  Before school this week, she was serving food to her stuffed animals in her play house.  I told her it was time to go to school and she responded quickly with a "no, clean".  She was adamant that she cleaned up the food before she went to school.  Most of the time at home, we can let her finish her thought process before moving onto the next activity.  At school, she doesn't really have that option.  There is a schedule and she needs to follow it along with the rest of the class.  Her teacher started her with a visual schedule.  It shows a picture of each activity.  She knows that she can look at the schedule to see what it next.  One day she chose to lie on the floor instead of going to the table for snack.  Occasionally, she would look out of the corner of her eye to see if anyone was watching her.  Hmmm...sounds like a little girl who loves attention (shocker there too, huh).  No one gave her the attention and she finally sat down for snack with about 3 minutes left for snack.  Oh well little missy.  The next day, she did much better. 

Hailey's teacher has been fantastic.  She gives me updates randomly throughout the day.  She answers every email and responds with a very detailed account of the day.  I feel sorry for her teacher though because Hailey refuses to talk to her.  She will chat with her until her teacher asks her a direct question...what color is this, what shape, etc?  Not sure how evaluations will go if she won't talk to her!  She does seem to talk to her speech therapist and occupational therapist.  Her physical therapist said Hailey seems to have her own agenda, but is very cooperative.  I'm grateful to have a team that keeps plugging away at that attitude to provide her with fantastic services and pushing her to learn. 

Hailey loves kids and being around them all.  She loves the playground.  Her favorite center is the dramatic play one which is set up like a pet shop...hmmm....sounds a little like Doc McStuffins :-)  She loves learning the songs and movements. 

I'm happy to see the progress she has made.  I'm happy to see her growing up.  She never runs or dashes away at school.  It has rubbed off a little at home.  She doesn't dart quite as much.  Her speech improves every day.  We are getting closer to jumping and her fine motor skills are improving. 

We have had a few bumps and I'm positive we will have more along with way.  It's a learning experience for us all, but the main thing is everyone has Hailey's best interest in mind and she LOVES school!!!

Friday, September 5, 2014

Hailey's New Found Love

Well, maybe it's not Hailey's new found love, but it is something we didn't realize before.  Hailey LOVES cats and big dogs.  It's a little funny because we do not have pets and the boys have always been apprehensive around pets and animals.  I first noticed it when Hailey was at therapy at children's hospital.  They have a dog visitation program.  It's not uncommon to see dogs walking through the halls and waiting rooms.  Hailey has always loved seeing them.  She seemed to love the bigger dogs and backs away from the smaller ones.  She prefers them to be substantially bigger than her. 

This summer we visited family in Indiana.  We stayed with my sister-in-law who has a large dog.  This is what we saw. 

If you were ever searching for Hailey, you just needed to figure out where Skip was...Hailey would be close by.

Apparently, Skip makes a good pillow...not sure Skip is as convinced!

Not sure what it is about big dogs that Hailey love so much.  Maybe they are calmer than small dogs.  She is super gentle with them, too.  I was worried since we don't have pets that she would be rougher or pull on him, but she is super gentle and just wants to be near them and love them.  There are no pets in our future, but I do love watching her with dogs.  It is so sweet!

Thursday, September 4, 2014

Who is Hailey?

In honor of the Buddy Walk which is Saturday, I made a new "Who is Hailey?" profile pic.  Someone kindly pointed out that I left out a lot of adjectives for my daughter.  I admit I did, but I could only fit 10 or so.  It's funny, I made a similar one about 6 months ago for World Down Syndrome Day.  Most of them are the same, but just like any toddler a few new ones have emerged.  We had to add "dog lover" to this one...that's an entirely different post!

I always want others to see that Hailey isn't Down syndrome.  I want them to see what we see.  Yes, it is a part of her, but she is so much more!

Wednesday, September 3, 2014

Favorite Event is Almost Here!

 This weekend is an event that we as a family look forward to every year...The Buddy Walk!  The Buddy Walk® was established in 1995 to celebrate Down Syndrome Awareness Month and to promote acceptance and inclusion of people with Down syndrome. Worldwide, The Buddy Walk has grown from 17 walks in 1995 to over 250 walks planned in 2013 (2014?). Last year, 295,000 people across the country raised more than $11.75 million to support local programs and services, as well as National Down Syndrome Society advocacy and public awareness initiatives that benefit all individuals with Down syndrome.

In Cincinnati, 50% of our Down syndrome associations needed resources are raised during this event.   Hailey and her friends benefit so much from this fundraiser.  She has attended group physical therapy sessions and sign language classes.  She attends a Christmas party and an Easter get together.  We had someone from the Down syndrome association visit us at our house shortly after she was born.  Now that she is older there are other programs we can participate in, but with two older brothers in sports, we are having a difficult time getting to some of them.  Our local association also funds the National Down Syndrome Adoption Network.  Their mission is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.  They do not charge a fee for their services.  Last year was a banner year not only in terms of money raised but also participants.  Over 11,500 people walked!!! 

The Buddy Walk to us is so much more than a fundraiser.  Yes, that's the main purpose for the event, but to us it's just a part of it.  The Buddy Walk to us is over 11,000 people together celebrating one thing...individuals with Down syndrome.  Every one there knows someone or is related to someone or has been touched by someone with Down syndrome.  Down syndrome is the norm there....Hailey isn't "atypical" there.  She's one of the stars.

We missed the first year Hailey was with us.  We had just come off of an unexpected diagnosis and open heart surgery.  We decided to lay low for the first year.  The first year we participated was 2012.  Hailey was 18 months old.  She was still such a little peanut.  I would be lying if I said the event doesn't bring tears to my eyes every year because it does.  It's overwhelming.  To see that many people there to support Down syndrome makes me speechless (and not much does!).  The boys look forward to the Buddy Walk every year.  This year both boys have decided to miss their soccer games to attend.  The boys might like it because of all the free food, but they would never admit to it :-)  It's important to all of us. 

Last year our team was smaller.  Big brother decided to play his soccer game.

If you ever get a chance to attend a Buddy Walk, please do!  I think everyone should attend one in their lifetime.  I think if you go once though, you will want to go again!  The more the merrier!!!  It's guaranteed to bring a smile to your face!!

Friday, August 1, 2014

Raising Hailey

Raising Hailey is quite similar to raising the boys.  Some days are bad where nothing seems to be going your way.  Some days are good.  Then there are some days you are on auto-pilot.  However, some days are fantastic.  There are days when everything seems larger than normal.  When everything seems to exceed your expectations and everything is better than you imagined or dreamed.  Yesterday was one of those days.  I didn't see it yesterday, but in looking at the pictures I took yesterday of was a fantastic day.

I can't help but think back to the first few days and weeks after Hailey was born.  My being uneducated.  I didn't believe how happy we would be.  I didn't realize how much laughter she would create.  I didn't understand how much we would love this little girl.  I didn't realize how normal life would be.

Who swapped out my baby with this little girl?
Hailey must be getting into school mode (she's very well behaved and cooperative at school).  She held my hand, never tried to run away, waited patiently in line for the next ride and then insisted on greeting Snoopy.  At one point, I thought my daughter had been cloned and I had the knock off version!

Hailey insisted on seeing the "doggy".

She backed up to Snoopy and posed.
Then she followed it with about 10 hugs!

She loved every ride.  She was all smiles and waved every time she passed us.  I was so proud of my little girl yesterday.  She is everything I never let myself believe she would be.  She's a beautiful little girl with loads of personality and opinions.  She is everything I dreamed about and there is no way we could ever love her more.

She always likes taking selfies and pushing the "button".

Saturday, July 26, 2014

Comforts & Connections...Summer Blog Hop

I will never know what it feels like for Hailey having a disability.  I sometimes wonder what she will verbalize about it when the time comes.  It's weird me talking about Hailey's disability when I don't know that opinion.  I can only write from my point of view.  An outsider to disability really.  This week's prompt is "comforts and connections."  Just as with the challenges of her disability were a surprise and sometimes are outside of my comfort zone.  The positives have been just as surprising and outside of my comfort zone.

I never dreamed how exciting small milestones could be before we had Hailey.  How much we cheer and chant when Hailey learned to sit up or crawl!  You would have thought she won a gold medal in the Olympics the way we carry on.  I remember crying and cheering in the hospital when Hailey drank a 3 oz bottle after open heart surgery.  To most parents of a 4 1/2 month old, that isn't anything out of the ordinary.  Hailey had never finished a 3 oz bottle and when she came close, it would take over an hour.  To see her finish on in less than 10 minutes is overwhelming.  I had NEVER seen it.  This abundance of excitement "might" be why the girl is such an attention seeker, but it is quite deserving.  The girl works hard.  She's not struggling or suffering, it just takes more effort for her to accomplish things that we take for granted with our typical children.  Due to that extra work that she puts forth, we celebrate smaller milestones and we celebrate often.  We break out into spontaneous dance parties because Hailey shouts, "Dance daddy" or "Dance mommy".  We do it like it's second nature.  We are proud of her perseverance and proud of all of her accomplishments no matter how big or how small they are.

We occasionally encounter people who look at Hailey as if she is "damaged goods" or not worthy of their time because she is "less" than typical.  I can honestly say though that for every 1 person I find like that, I encounter 10 that feel the opposite.  They will seek Hailey out.  They will go out of their way to make her smile, say hi to her, or shake her hand in church.  She has a personality that seems to draw people to her.  There are days that I feel bad for my boys, but they seem to take it in stride (sometimes with an eye roll). 

The boys like the extra activities they get to do because of their sister.  Baseball games, play dates, picnics, ice cream socials, etc...all because their sister has Down syndrome.  They seem to make a new friend no matter where we go.  Sometimes I'll see them play with siblings and other times, I'll see them playing with an older child with Ds.  They are going to be great role models one day.

One of my biggest fears when Hailey was born was that our family would be isolated.  That we would be all alone.  I was afraid we would have no one to turn to or relate to.  I was afraid we would become hermits and not out in the world.  I actually have laughed out loud at this fear since Hailey has been born.  First off, if you have ever met my family...quiet, reserved and shy are not three words that could be used to describe most of us.  Secondly, I have never had more support in my entire life.  The Down syndrome community is absolutely amazing!  Shortly after Hailey was born, I started receiving emails.  All of them were from friends and acquaintances of mine that knew someone who had a family member with Down syndrome.  All of them came with a contact name, phone number and an email address.  I couldn't do that.  I couldn't just start talking to a total stranger about the biggest, most shocking thing that had ever happened to me.  Each email also included the same message, "contact them when I was ready".  Seriously...I would never be ready.  I have to laugh at that one, too.  Little by little, I have contacted many of those individuals.  They have helped me through some bumps in the road about acceptance, feeding, behavior, etc.  They didn't know me from Adam and were willing to help a complete stranger based on one common factor...we both had children with Down syndrome.  I didn't understand that bond at first.  I do now.  I have now been on the other end.  I have had family and friends contact me saying, "I know such and such.  They just had a baby with Down syndrome.  Can I give them your name and email?  Can they friend you on Facebook?  I think it would be good for them to see Hailey and her pictures."  So then, I become that person that is reaching out to a stranger trying to help them through some of those initial unfamiliar waters.  I get to pay it forward.  I get to help them like someone helped me.  I get to see their little bundles achieve the same milestones Hailey did.  I get to celebrate with them.  It is so amazing. 

Not only have I met amazing people online, but I have also met amazing people in person.  We are very fortunate to live in a large area with a large Down syndrome association.  We have a very active community.  I'm lucky enough to attend a Mom's Night Out dinner once a month.  It is a group of women that I may never met had I not had Hailey.  I honestly don't know what I would do without them sometimes!  I look forward to the dinner every month and am extremely disappointed when I have to miss it.  We don't even talk about Ds all the time, but they are a group of women that I can be 100% open and honest with.  They understand it all.  There are no explanations necessary.  They are always there.  If I need to vent with a one sentence text or I need a full blown conversation, they are there.  We are tied together by what many would think is just a thread, but that bond is more than that.  I thought it was just a local thing until I attended the National Down Syndrome Convention in Indianapolis this month.  Wow.  It left me speechless.  It's definitely a common bond no matter where you are.  I need to blog about that later.

We have been very fortunate with our team of therapists as well.  Even though these are people that are paid through their career to help my child, they have all gone above and beyond.  They truly love their jobs and many times, they come to love your child as well.  Most of ours have even made themselves available to us for questions and concerns outside of our appointments. 

I also take comfort in knowing that Hailey was no mistake.  Hailey was created just as God wished.  Why Hailey and not someone else?  I'm not sure, but I do not doubt for one minute that she was intended to be who she is...even with all her stubborn opinions and personality!

Who would have ever dreamed that my fear of being alone would be so far from the truth?  I never dreamed our life could be so full. 

I never could have imagined the world that this little girl would open up!

Friday, July 25, 2014

Challenges...Summer blog hop

I'm on a roll now! I think this will catch me up on the summer blog hop that my friend, Meriah coordinated. Today's topic is Challenges. I think this subject is more difficult for me than my letter to my younger self. I feel that the challenges of raising a child with Down syndrome goes in waves. It can be extremely difficult at times and just when we feel like you cannot take it any longer, the waves crests and glides you to shore and life balances out again.

I think a large factor in this is the birth order of your child with Ds. Hailey is number 3. By the time she was born, I had a 7 year old and a 3 1/2 year old. Yes, they both reached milestones at different ages, but they were still similar and close to the same. Actually with some things, my second did mastered them earlier trying to keep up with his big brother. Then along comes Hailey who is delayed. I had data and memories to compare her development to. Sometimes that can be overwhelming. It was hard watching her struggle with simple tasks that her brothers seemed to master overnight or even in their sleep. I didn't know how to break down the process of sitting up or standing for her. Gross motor planning comes easy to most typical children. Unfortunately, that is not always the case with a child with Down syndrome. We needed to break down each milestone into a dozen or so components. I am an impatient person...this makes Ds a challenge on many days! It seemed every time I was ready to give up "she's not going to every crawl, walk, etc.",she would make an advancement or meet her milestone. Trust me, if I could will this child to master her milestones, she would have been running at a year. Gross motor delays are a huge challenge to accept early on. When you are out and about, you see parents holding hands with their one year old while walking at the park. You look at your child sheepishly knowing she has just mastered crawling. No, in the grand scheme of life, it is not a big deal, but in that moment, it is. Sometimes I find myself dealing with jealousy over typical children because simple tasks come so easy to them when Hailey had to struggle with each and every one of them.

 As much as a challenge that gross motor was, it doesn't compare to the intellectual side of things. I always "knew" that Hailey would crawl, walk, run, etc. Intellectually there are no guarantees. I grew up getting straight A's and graduating valedictorian of my high school class. I attended college on a full ride scholarship because of those grades. In short, I grew up...if you get good grades, you will go to college and you will be successful. With that mentality, you look at a child with developmental does that translate? It's hard letting that go. When I say that to some people, I get a small sympathetic smile followed with a "it will be ok". Really, is it your child? No. You push your child to get good grades. I push my boys to get good grades. It's hard to change that mentality to pushing for progress and not perfect grades. Yes, I'm getting there, but it's hard. It's difficult to hear children Hailey's age carry on full conversations with their parents, recite their alphabets, count, etc. Hailey is not there yet. She will get there some day, but we don't know when. We don't know what her future holds. Will she attend a program at a college? What will her dreams of her future be?

 I've encountered other challenges that I never gave much thought about before. When we received Hailey's diagnosis, I received a crash course in terminology that I never heard or even knew existed. Medical terms for her heart and Down syndrome, organizations I didn't know existed, tests that needed run on Hailey that I didn't know anything about, educational jargon that made my head spin. Even now, I feel like there is so much I don't know that I need to know. Things that I am afraid I'm going to miss with her that will cause her to be less successful in the future.

The biggest challenge I am having being a parent to Hailey is the fear that I am not enough. That I'm not a good enough parent. That I am not a good enough teacher. That I haven't done enough research. That I don't work with her enough. That I am going to short change her in some way. Society will judge her based on her outward appearance, by her speech, by her mannerisms, her reading and math skills.  What if I don't do enough now. Will someone think she is less of a person later?  What if I don't do enough now...what happens when I am no longer around?

No matter what challenges arise with my little girl and her disability, I wouldn't trade her for anything in the world.  All the challenges we have overcome thus far with Hailey pale in comparison to what we get in return.

Take a minute to read some of the other challenges below...