The Hailey Herald

The Hailey Herald

Tuesday, November 25, 2014

Halloween before Thanksgiving

I spend so much time and energy blogging the entire month of October that November seems to get lost.  I just realized that I never shared about Halloween.  I fretted so much about the weather that day.  I was so excited for Hailey to trick or treat this year.  The first year, she was obviously was too little.  The second year, it was so frigid that she was outside for 5 minutes top.  Last year, Hailey was finally walking and I was giddy.  Then the monsoon hit and my wonderful neighbor planned a last minute party, but no trick or treating for Hailey.  This year they kept calling for rain...loads of it.  We decided we were going to give it a try anyway.  Hailey was a trooper.  She didn't use her stroller much at all and we walked a ton.  She would always say trick or treat as we were leaving, but she said "thanks" or signed "thank you" at every house.  My favorite (yes, we had a conversation about manners afterwards) was when someone handed her a candy bar and Hailey proclaimed "No, another one".  The woman gave her another one, but I made Hailey put it back. 

I enjoyed watching my little girl keep up with the big kids.  She had a ball!!!

Two zombies and Doc McStuffins

This is what I saw most of the night....following the girl on a mission

She's a "little" excited about that pile of candy


Friday, October 31, 2014

Sensory Play Fail

The kids love to carve pumpkins every year....wait.  Let me rephrase that..the kids love to choose a stencil for their pumpkin, but somehow it always ends in mom carving the actual design.  The boys did help a little more by setting up the design on their pumpkin, but I still get the honor of carving it. 

I decided this year, they were all cleaning their own pumpkin.  That in itself was comical!  The boys did most of theirs as they moaned, complained and gagged.  Hailey even had her own opinion as she kept telling me "wash hands". 

Hopefully each year, mom's work becomes less and less with them!

Brayden kept complaining how gross it was


Ian handled it the best of the 3



You want me to do what?

Yuck, what was that?

What is in there?

Wash hands now!

Haven't we had enough of the pumpkins?




Thursday, October 30, 2014

Finding Passion (Guest post)

Today's blog post is by one of my friends, Emily.  She is a member of the (Extra)Ordinary group.  It is our 2011 subgroup of our local Down syndrome association.  Her daughter, Nora, and her twin, Katie, are two days younger than Hailey.  She is a phenomenal mom who always seems to have it together and seems so calm handling her 4 young children.   Enjoy!!

I was always jealous of people who had a passion that drove their life. My best friend is passionate about everything, and always seems to be doing great things. Another dear college friend is a pastor and has been serving others since the day we met.

When Nora came into our lives in February of 2011 I was thrown off kilter. We knew about her heart condition, and had had a conversation with a genetic counselor while pregnant, but hadn’t put too much thought to what Down syndrome was or would mean to our family. I knew right when I saw her – those eyes told me immediately. And it’s not that I jumped for joy, I was sad with the possibility and a few days later the confirmation. But I am an optimist to my core and knew no matter how I felt about it, it’s not something I could change, so I started to learn about what it would me to us. Three and half years later it has given me more than I could have imagined.

I hope others can see the passion in me as well, and that it’s not too overwhelming when I do share. Like many parents to children with special needs, I am excited to teach the world all about Down syndrome and why it’s really not as scary as it may seem at first. On behalf of Nora and other individuals with special needs I learned more about government than I ever recall from high school by serving on the Government Affairs Committee for the Down Syndrome Association of Greater Cincinnati including travelling DC to meet with congressmen and encourage them to pass legislation (the ABLE Act - https://www.congress.gov/bill/113th-congress/house-bill/647), I worked for two years to network and land a job with Cincinnati Children’s Hospital so I am now helping to “improve the outcome” for many families, I am a member of the Family Affairs Committee for the Division of Developmental and Behavioral Pediatrics for CCHMC, I am taking part in local level government on the County Board of Developmental Disabilities, I am advocating for Nora and becoming an expert on her IEP. All of this, and more, because of one little girl.

And I am not a super mom, I am just a regular mom who has found her passion – and it feels great.

And before I go, just a touch of my passion in form of Down syndrome Facts: Did you know?

* The correct terminology is Down syndrome. There is no apostrophe and there is no capital “s” in syndrome. The syndrome is named after the physician, Dr. John Langdon Down, who identified the common characteristics as a syndrome in 1866. A child with this condition is a child with Down syndrome, not a Down’s child or the Down’s kid in Mrs. Thompson’s class. Parents greatly appreciate your sensitivity when you address their child as a “person first” and not merely as a syndrome.
* The average age of a mother giving birth to a baby with Down syndrome is 28, 80% are under 35. (see #1 ref below)
* Most people with Down syndrome have some degree of intellectual disability, however, it usually falls into the mild to moderate range and is NOT indicative of the many strengths and talents each individual possesses.
* People with Down syndrome are not always happy. They have feelings just like everyone else. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behavior.
* Down syndrome is the most commonly occurring chromosomal condition. It occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes characteristics associated with Down syndrome. Down syndrome occurs in all races and economic levels.
* Individuals with Down syndrome have higher rates of Alzheimer’s Disease. The 21st chromosome contains the APP gene which produces amyloid precursor protein (APP). This gene causes APP to be produced and form beta-amyloid plaques which are characteristic in the brains of individuals with Alzheimer’s. Starting in infancy, individuals with Down syndrome produce lots of APP. By middle age the accumulated plaques wreak biological havoc on the brain. There are currently two clinical trials underway with people who have Down syndrome through NIH to study drugs that may limit, and hopefully even stop, the effects of this plaque and the resulting Alzheimer’s. (see #2 ref below)

References: # 1 http://www.dsnmc.org/wp-content/uploads/2011/01/DSNMCEducationResourceGuide.pdf #2 http://www.nia.nih.gov/alzheimers/features/researchers-seek-alzheimers-clues-people-down-syndrome

Wednesday, October 29, 2014

Invaluable Resource

I've spoken all month about Down syndrome, about Hailey and about our life.  I can't leave out a very important resource that exists in our life...the Down Syndrome Association of Greater Cincinnati (DSAGC).  Our association serves 12 counties and approximately 1,400 individuals with Down syndrome and their families.  They serve all ages from a prenatal diagnosis to people in their late 60s.  It was established in 1981 by a group of parents that envisioned a better community for their children.  The DSAGC hosts the largest Buddy Walk in the country with over 11,000 participants.

Their mission is to empower individuals, educate families, enhance communities and together, celebrate the extraordinary lives of people with Down syndrome.  This mission starts with the first day contact is made.  We had put Hailey's Ds on the back burner for the first few months.  I did research on the internet and spoke via email with several people that I had never met and a good friend from high school who has a little girl with Ds.  It was easier to contact this way and we had bigger issues to on hand.  Hailey's heart defect and impending open heart surgery took precedence over her having Down syndrome.  I contacted DSAGC shortly after and the early matters coordinator came to our house to meet Hailey.  I met with her for an hour or so.  It is fantastic to have someone who knows about Ds "oooh and aaaah" of your baby.  I think she could have stayed holding Hailey all day!

There are so many events and opportunities available through the DSAGC.  Some programs are divided into age of the person with Ds...early matters (birth to age 5), school age, and adult matters.  Some of the activities that have been available to Hailey are monthly sign language class and physical therapy.  She is now old enough to go to Dramakinetics and music therapy.  Along with educational opportunities, there are also social gatherings annual...spring fling, summer ice cream social and a harvest party.  There are similar events and educational sessions with the school age group, along with workshops to help us navigate through the world of Hailey's education.  I do not know much about the adult matters group, but I know that as Hailey gets older, I will be checking all of the opportunities that exist there.  I have only heard positive comments about all of it.

These groups are available to families and individuals with Ds in the entire 12 county area.   However, in order to serve such a large area, community groups have been formed to meet the varied and unique needs of our community.  These groups include community groups based on geography, DADS, extended family, Ds plus (a diagnosis of Ds along with another diagnosis), single parents, African American family network, Hispanic community group, social groups (for individuals with Ds 16 years and older) and birth year groups (like the 2011 extraordinaries).  We fall into a geographic community group that I attend monthly mom's night out, coffee chats, playdates, etc.  It is nice to get to know families in my local area.  We are also active with the 2011 group.  These families are dealing with the same obstacles and celebrating similar milestones at the same time as us.

There are two events that we attend annually that encompasses the entire group.  One is the annual holiday party which is right around the corner.  Last year, Hailey visited Santa about 20 times!  The boys love the crafts and Hailey loves the music and the attention she gets from the volunteers.  Mommy loves that the volunteers chase after Hailey so I can have adult conversations!  We also participate in the Buddy Walk.  The funds raised through the Buddy Walk provides about 50% of the needed resources to help the DSAGC fulfill its mission.  There are other events, but for some reason, these are the only two our schedule seems to allow.

The DSAGC isn't only about social functions and social networking.  They have a fantastic health outreach program that provides accurate health care information to our local hospitals, clinics, doctors, nurses and midwives.  They also have a board of medical professionals that sit on an advisory board to keep all of the medical information up-to-date.

The last information I would like to share about the DSAGC is the National Down Syndrome Adoption Network (NDSAN).   This network is funded through the DSAGC.  It provides information to birth families who are seeking an alternative to parenting a child with Ds.  The NDSAN also provides support to families who wish to adopt a child with Ds.  There are no fees for any of the services they provide.  Their mission is such a beautiful one....to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.

I'm sorry if I bored you with a very lengthy post about our local association, but we have a very active...very present association.  It is such a fantastic resource and partner to all of the families with a loved one with Down syndrome.  I honestly don't know how difficult some of the relationships we have established would have been without the DSAGC.  It has made our life so much fuller and balanced because of the support system they have helped us put in place.  I am thankful that we have such a fantastic resource in our area.  I am grateful for the dedicated staff they have.  I love the passion they show about their jobs and I appreciate all their hard work and support!!


No...these pictures have nothing to do with the DSAGC except that this little girl is fortunate to have them in her life (and the pictures are so cute that they need looked at again).



For more information about the DSAGC...visit their website at http://www.dsagc.com/

Tuesday, October 28, 2014

Reason for a Party

Over a year after Hailey was born, I found out there was a sub-group of our local Down syndrome association for kiddos born with Ds born in 2011.  I was super excited and extremely nervous.  All of these families are going through the same things we were going through at the same time.  For the most part, Hailey is the only one with Down syndrome in our day-to-day world.  She does have one little girl in her classroom with Ds, but other than that...Hailey is it.  I feel it's important for Hailey to have time in both worlds...That may have come out incorrectly.  I don't want there to be two separate worlds, but I want her relationships to be seamless.  A friend is a friend...46 or 47 chromosomes...blonde hair or brown eyes.  I want her to know that she isn't the "only" one.  I don't want her to feel alone.  Who knows...the thought may never cross her mind, but I also don't want that to ever be an issue.  I like Hailey playing with and having friends that have Down syndrome and some that don't.

On Sunday several of us were able to meet up and let the kids play, eat, wear their costumes, listen to stories and trick or treat.  There might have been a lot of searching for children because several of them are "explorers", but we had a good time and I look forward to seeing these fabulous families again soon!

These two posed immediately:  Hailey & Jaia

Hailey chasing Katie to give her a check up.

Katie didn't cooperate to Hailey's standards so she searched out Ian.  He's a regular patient.

Zola, Nora & Hailey

Zola was an adorable bumblebee!

Jaia was the cutest cowgirl!

Big brother leading Hailey through the trick or treat stops.

Katie & Nora adorable in their Minnie costumes!

Our attempt at a group photo...cutie Trip on the far right was as close to a smile as we were going to get.


Monday, October 27, 2014

Happy Birthday, Daddy!

Happy birthday to the person that has been with me through it all.  He is my rock.  He balances out my crazies, but can also drive me crazy :-)  He is the "fun", but don't mess with parent.  He is as mischievous as Ian and Hailey.  My children couldn't ask for a better daddy and we are lucky to have him.

I love to look back at pictures from birthdays past.  I love seeing how much the children have changed (and I try not to see how much we have aged!)

2009

2010

2011

2012

2013

2014
 
Hailey is itching for those cupcakes!

I don't think she's ever had a cupcake she didn't like.

So happy!

Sunday, October 26, 2014

Sunday Shots

 Today we had a three parties to attend.  The kids had plenty of dressing up to do!  Hailey played her Doc role quite well.  She tried to give several people a check up.  Luckily, Hailey didn't seem too bothered by her brothers' make up.