The Hailey Herald

The Hailey Herald

Friday, April 18, 2014

Down syndrome...the Afterthought

Each year of Hailey's life has been so incredibly difference.  Year 1, started with an explosion of emotion...fear, denial, sadness and guilt.  All of those eventually passed and evolved into relief (after a successful, uneventful open heart surgery) and acceptance.  Her first birthday party brought a lot of tears.  We had made it.  We made it through the abundance of information about different facets of Ds, the therapy and the multitude of doctor and therapy appointments that we had never encountered through with the boys, and finding where we fit in the Down syndrome community.  It was as if we were wearing a medal of honor.  We did it. 

Hailey's second year calmed down some.  We still had appointments, but they had slowed down because fortunately she had been healthy.  She was walking with assistance and gaining independence.  We still had therapy frequently.  That birthday was a celebration.  The fear was gone.  We found our niche in the Ds community and the dust had settled so to speak. 

Year 3 was even better.  Hailey was walking and exploring her world.  Knock on wood, she was healthier than the year before with the help of allergy medicine.  Hailey's speech started to improve and she was interacting more with her brothers.  She was finding her niche in our family.  Her 3rd birthday just was.  We celebrated Hailey and where our family is. 

That first year had me so scared and overwhelmed that I didn't think there would ever be a day that I didn't see Down syndrome in her face.  I was afraid that every minute of every day would scream "I have a daughter with Down syndrome".  I thought it would consume every thought and every activity that we did.  I feared it would overtake our family.  I was so scared that every part of Hailey's personality would revolve around Down syndrome.

The past two years have been much more relaxed (or I have chilled out and started to enjoy life more).  I love seeing the personality that is emerging from that petite body.  I have had several people comment how much personality is busting from this little girl.  She is compassionate.  She sobs when someone else is hurt or upset...almost more than she cries when she is hurt.  She is nurturing.  She still takes such good care of her babies.  Feeding them, rocking them, singing to them and reading books to them. 

She loves her family. 

Just recently, I caught Hailey "introducing" all of her family members to her Doc doll and her bunny chair.  One by one, she went through each picture announcing who it was and nodding at her "audience" and saying "right?"  She is funny and inquisitive. 

Showing her "audience" her family

She is funny, rotten, sassy and mischievous!

She is so much fun and so frustrating at the same time.  But I can guarantee, when I look at this beautiful phase...Down syndrome is not what we see.  We see our beautiful 3 year old...this face just screams Hailey!

Thursday, April 17, 2014


Early on we accepted that Hailey would meet some milestones later than the boys did or other children her age.  It eventually become no big deal.  Recently Hailey has met another milestone.  We transitioned Hailey from her crib to a toddler bed and now into a full-sized bed.  Yes, this was about a year later than we transitioned the boys.  Did we do this because of Down syndrome...nope!  It had absolutely nothing to do with it.  Both boys were fabulous sleepers in their cribs (eventually).  We transitioned them into toddler beds and all hell broke loose.  With both boys, we ended up with them in our bed for at least a year off and on.  Sometimes they would start in our bed and with our middle child, he would wander into our room in the middle of the night and neither of us had the energy or the wits at 3 a.m. to move him into his bed so a bad habit was created.  Hailey stayed in her crib longer because we learned our lesson!  She is a good sleeper (knock on wood) and I wanted to get as much use out of that crib as we possibly could!

About two weeks before Christmas, I took off the side of her crib to make it into a toddler bed.  It never seemed to phase Hailey.  She continued to sleep fine.  Unfortunately she came down with croup the end of February.  This changed all sleeping for several nights.  Hailey and I kicked the boys out of Ian's room.  I slept with her for those few nights.  That is when we decided she needed a bigger bed in case one of us needed to lay with her.  She is now in a full-size bed.  Some evenings we do have issues getting her to sleep, but some of that is the over-exhaustion, some stubbornness and some the bed.  Once she is asleep we don;t hear anything from her.  Knock on wood....she is still in her bed and not in ours!!!  I have my fingers crossed that this transition/milestone is over :-)

She really liked the addition of her Doc McStuffins comforter!!

Wednesday, April 16, 2014

School and Hailey....are they a good fit?

Hard to believe that Hailey has been in school now for almost two months.  What scared me so much has just become part of our routine...part of our every day schedule.  Hailey seems to enjoy school.  She plays shy every day when the teacher comes to get her out of the van.  She covers her eyes, but her hands can't seem to hide her giant smile.  She breaks out in that same giant smile every day when we come to school to pick her up.  I'm not sure I will ever tire of seeing that smile and hearing her squeal "mommy" as she runs towards me.

A couple of days, I've been greeted by her physical therapist and her speech therapist.  Her physical therapist told me what a delight Hailey is.  No matter what the task is Hailey tries her hardest to master it.  She might not be able to do it, but she always tries.  I always get nervous when a therapist or teacher is waiting for me after school.  Almost as if I'm the student again and I'm in trouble with the principal!  It makes me so happy to hear how cooperative Hailey has been with her physical therapist.  Now, the road to success for speech therapy has not been as smooth.  Hailey decided she didn't need to speak to her speech therapist.  Hailey is fine if she gets to lead the activity, but if her speech therapist tries to redirect her, Hailey glares at her and doesn't speak again.  Can you say "attitude overload"?  Somehow and some way, they made a breakthrough last week.  Thank goodness!  Hailey almost didn't want to go home with me and kept hugging her speech therapist.  Yay!!!!  So exciting to actually speak to a speech therapist!!

Let's see...lastly, that leaves Hailey's teacher.  Hailey made her work for it.  For a little bit, Hailey wouldn't speak to her either.  One day, instead of eating her snack (animal crackers), Hailey sat in her seat and signed each animal to her teacher.  Little by little, Hailey is opening up and speaking with her teacher.  I sometimes worry about how much Hailey is taking in (who doesn't wonder how much even their typical children are absorbing!).  I won't spell out word for word what her teacher told me, but she said that Hailey is a very well behaved student and is a good listener and she would take 100 Haileys.  She has been following directions with some adult prompting, but not much.  She is getting the hang of the schedule and how things work.  She seems to be understanding what is going on and is always taking everything in.  It has helped ease my mind. 
I know she has her moments, but it makes me feel better knowing that Hailey is doing well even if she isn't as verbal as we would like.

At home, we haven't noticed many changes in Hailey's behavior due to school.  It is a challenge as the evening wears on because Hailey is in dire need of a nap every day and with afternoon school she misses it.  Fortunately, next year we will have morning class so that solves that problem!!  The biggest change we have noticed is in her speech.  She still isn't consistent with two word phrases (we get a few here and there), but her single words are becoming clearer and clearer with most having correct beginning and ending sounds.

So, I guess our leap of faith with preschool has been a good thing!  She seems to like it and they seem to enjoy having her.

I really think Hailey is trying to plan an escape, but her teacher insists that Hailey enjoyed it!
Looks like an escape to me!!
Hailey loved the "animal clinic" center!

Tuesday, April 15, 2014

World Down Syndrome Day

Yes, I realize this post is about a month overdue, but I decided I needed to share the pics anyway.  Hailey didn't wear her Ds Day shirt this year because it happened to be the same day as her preschool pics.  Well, after looking at the end result....I wish I would have sent her in her shirt.

Gotta love the "who are you, you want me to do what?" look on her face.  Needless to say...we chalk this one up to a loss and decided to not purchase any.  Oh well...maybe next year will be better!!

We spent the evening with our local Down syndrome group.  A local community center held a fantastic event...swimming, activities in the gym, manicures, dancing, dramakinetics, and plenty of fellowship.  I even got a little break because a friend's daughter is absolutely in love with Hailey and spent the evening chasing her every where.  We need to clone her and let me keep one version of Sami  :-)

Apparently, Hailey plays with scooters at school because she knew exactly what to do!

Little thing...she even tried to play basketball with her brothers

This cracks me up...Hailey decided the storage basket on someone's stroller was the perfect place to have a seat!

Hailey fell in love with one of the family's service dog.  Interesting fact:  small dogs freak Hailey out, but she loves large dogs.

She's a little unsure of the parachute.

If you can't tell, Hailey loves Sami, too!!

 I have to admit...this isn't the road I dreamed we would be on, but I wouldn't change a single minute of it!

Thursday, March 20, 2014

Can You Do More this World Down Syndrome Day?

Over the past three years, I know I have bombarded everyone with information about Down syndrome and bored everyone with pictures of my gorgeous (I'm her mom, I reserve the right to be biased), spunky, little girl with Down syndrome.  I advocate for my daughter partly because I love her, but also because I want others to realize a diagnosis is not always what you think it is.  Some things that seem daunting are misunderstood.  Some things that seem impossible just take a few adjustments.  Some things that you think will end your world, can be the best thing that has ever happened to you.

Tomorrow is March 21...aka World Down Syndrome Day.  3/21 was chosen because a person with Down syndrome has 3 copies of the 21st chromosome.

I know I've asked for acceptance and awareness before, but this time I challenge you to do more.  You can show your support by wearing blue and yellow (the colors of Ds awareness), but you can take it one step further.  Do you know someone with a disability?  Do your children have a classmate with a disability?  Can you include those individuals in an activity?  Can you go out of your way to have a conversation with them or see how their day is?  Can you volunteer in some capacity that will benefit an individual with a disability?  Sign up for a run or a walk whose funds benefit people with disabilities?  Can you bring attention to an individual that uses the r-word...ask them to find a different word?

How can you not only show people with Down syndrome that you accept them, but that you respect them?

I would love to hear what you can do!  Do it for it for yourself!

We will be spending our evening with our local Down syndrome families celebrating the loved ones that brought us all together. 

Wednesday, March 19, 2014

A Day in the Life

I'm writing this blog post as part of a blog hop for World Down Syndrome Day (which is March 21st).  I realize it sounds cliche, but honestly, our days don't look much different than they did before Hailey.  We have 3 children now instead of 2...that in itself adds a little more chaos.  Our days aren't much different than they were when Ian was 3.

I think I'll start with what our day isn't.  Our day is not sad.  I do not have a little girl who is quiet and sitting in the corner drooling.  Our day is not full of doctor's appointments.  Our days are not high maintenance.  Our days do not revolve around Hailey.  Our days are not dedicated to Down syndrome.

Our days are a little different now that Hailey has started preschool.  Our day starts getting everyone fed and making sure the boys don't miss their bus.  This week, we aren't doing well with that one.  Ian has missed his twice this week...good thing it is only a mile from home.  Hailey and I hang out at home in the mornings.  A little Doc McStuffins, a little reading, a few puzzles (a few messes and a lot of sass) and then we eat lunch before I drive her to school.  I kiss my peanut good-bye and she is off doing her thing.  I have two hours of "free" time.  I use that term loosely because it is generally running errands for the household.

By that time, Ian's bus is at home and we drive to Hailey's school for pick up.  Our evening is filled with kids playing outside (when the weather cooperates), homework, dinner and baths.  Bedtime wraps it up.  Hailey is much easier to put to bed than her brothers.  They are much higher maintenance.

So you see, our days look similar to yours.  We have boys' sports practices some days and Hailey does have doctor appointments occasionally, but we are fortunate that they are only maintenance appointments and she is rather healthy.

We vacation like other families...we go out to restaurants like other families.  My children squabble and bicker like other children and Hailey likes to pester her brothers.

Down syndrome is nothing that I expected.  It is something I didn't want.  It is something I feared.  Down syndrome is everything I didn't think it was and nothing that I thought it was.  It has challenged me in ways I didn't think I was strong enough for and it has rewarded me like nothing before.  

I'm not sure what our life would be like without Hailey.  She definitely completes our family!

Here are a few pics from Hailey's days at school....

Please check out other "A Day in the Life" blogs below:

Tuesday, March 4, 2014

Time for Preschool Already has been daunting and overwhelming.  Meetings, evaluations, IEPs.  Some of the information was new, some was things we've been dealing with since day 1.  Some evaluations are difficult, some roll right off your back.  Sending my baby to preschool has been frightening.  3 wasn't something we even gave a thought to when she was born.  Preschool seemed so far away.  She is, in the eyes of the world, non verbal.  It's hard when you ask "How was your day" and it is answered with silence.  You are putting a great deal of faith into the hands of the teacher, the aids, the therapists and the administration.  You do your research and you make the best decision for your child and you pray for the best.  You pray that you made the right choice for your child.  It's not easy and it causes a lot of weight on your shoulders.  Do you send at 3? Do you wait?  Do you home school?  Do you choose private preschool?  Is public preschool the best fit?  A lot of planning and thinking and praying go into that decision and yes, it was only for preschool. 

Hailey started preschool on Thursday.  The day after she turned 3.  A year earlier than her oldest brother and 3 months earlier than the other.  I was nervous and I was scared.  I tried to hide it from her.  She seemed excited.  We have been watching signing times school video for the last few weeks.  It talks about the teacher, students and paying attention.  Hailey was in love with her backpack and loves seeing the bus pull up outside picking up and dropping off her brothers.

The first day, the OT met us at the front door and led us into the classroom before anyone else came in.  Hopefully to get Hailey acclimated to room before the chaos of the rest of the class filing in.  Hailey was apprehensive and cried a little.  I left at that point.  I wasn't helping the situation.  We received a good report that evening.  The tears stopped shortly after mom left the room.  Friday, she went again.  This time with no apprehension and no tears. couldn't have handled more tears.  This week will be her first full week.  I'm crossing my fingers :-)  For the hasn't cried...yet.

She wore her backpack through the house for the past week
All ready for school

Coming out to the car