The Hailey Herald

The Hailey Herald

Friday, January 31, 2014

It's Official...Hailey's a Preschooler

When a woman is pregnant, other women (and people in general) love to comment on giving birth and raising children.  People feel compelled to share horror labor stories.  Not sure why.  As if being pregnant and raising a child isn't difficult enough.  The same goes for education for children with special needs.  From the time Hailey was born, I've had people tell me horror stories about teaching teams and IEP meetings.  It scares you.  Fortunately, our experience this year (yes, I know, it's only preschool) wasn't like that.  Everyone seems to be on the same page and it appears we have reached an agreement as to what we would like Hailey's preschool education to look like.  Yes, I used "seems" which seems quite wishy-washy.  Frankly it is because we don't know how Hailey will react to preschool.  We don't know how she will learn.  We have no clue.  We know how she learns and reacts to her home setting, but preschool is a whole new ballgame.

I know some people don't understand why Hailey starting preschool at 3 is such a big deal.  First off, she's my baby.  Yes, I was nervous when both boys started and they started at 4 years and the other at 3 years and 3 months.  For the record, I cried when they both started school as well.  Secondly, it is difficult to give up the control of her learning and her environment.  I'm trusting people I don't know to do what's in the best interest of my child.  This is a huge milestone for Hailey.  I'm going to be honest, there was a time when we weren't even sure Hailey would live to see her 6 month birthday...I couldn't even think about her 3rd birthday!  Lastly, when most children start preschool, they are verbal.  When you drop them off at school, they know you are going to come back for them.  When you pick them up from school, you know they can tell you about their day.  They played with such and such on the slide.  They learned about the color "x".  They read a story about "y".  They had a snack of "z".  I don't have that.  I have a child who to the outside world is nonverbal.  I have a child who can't tell me if she had a good day.  She can't tell me that she colored a rainbow.  She can't tell me that little Susie sat beside her.  Now, think about how hard it would be to drop off your 3 year old at preschool.

Even though we are making a leap of faith with preschool, I still believe it is a good decision.  I think Hailey will love school and I think she will flourish.  I think she will enjoy the interaction with children her age and I think she will enjoy the break from mom. 

If you doubt any of the above, check out Hailey's pictures below.  We had wrapped up our meeting when the class arrived.  As the kids walked into class, Hailey waved and said "hi".  The children hung up their coats and started sitting at the tables.  Little miss followed suit.  She grabbed a chalkboard, started drawing and erasing.  She was content...she was happy.  No one batted an eyelash.  I'm not even sure the kids noticed her not belonging to the class with the exception of the little boy whose seat she had stolen!

Wish this wasn't so blurry.  She was having a ball!

After a burrito bowl for lunch, the excitement got the best of her.

Within two hours, I received my first email from Hailey's new teacher.  Seems absolutely crazy!

Thursday, January 30, 2014

-5 Degrees...Let's Go Swimming!

Little miss has had a busy few days.  The boys had two more "inclement" weather days...ugh!  She has been swimming, gone to the museum center and has an IEP meeting tomorrow.  Yesterday, I couldn't handle another day in the house.  The kids have too much energy and I'm starting to go crazy (yes, just now starting...I'm not quite there yet).  Hailey loves the water and loves the slides even more.  The pictures look like she is terrified, but she kept saying water slide...over and over and over.  The bad thing is it is a two person job for her to ride the slides and the big kids would only help for a few rides at a time.  They all had a good time and might have worn themselves out "a little".

Monday, January 27, 2014

Preschool or Bust

Wow.  Transitioning Hailey into preschool is definitely not a walk in the park or for the faint of heart.  We have now had 4 meetings and have one more before our process is complete.  The first meeting is an introduction to the process and necessary people.  It was our formal request to have Hailey evaluated for preschool.  The state of Ohio does not automatically qualify children with Down syndrome for services (speech, occupational and physical therapies).  A child has to be evaluated in speech, fine motor and gross motor skills.  They must show that they are delayed by two standard deviations from mean (the average of typical children).  Hailey rocked her occupational and speech therapy evaluations the first day.  She brought her A game...which can be good and bad.  As a mother, I was very proud of Hailey.  She showed off, so to speak, and showed what she can truly do.  Hailey had to return later that week for her gross motor eval and a phonetic eval with speech.  Hailey did not cooperate with the second speech evaluation.  When I say she did not cooperate, that would be putting it nicely.  The girl refused to speak!  Needless to say, a speech evaluation on a child that refuses to speak does not yield a good score.  My brain was saying, "Thank you, Hailey.  Now, I'm positive you will qualify."  My heart was screaming, "What in the world are you doing?!?!?  I wanted to put her little bottom in timeout for not trying and being so defiant". 

A month later, I returned to go over the evaluation and find out if she had qualified for services.  If so, she can attend on her birthday or a date anytime after she turns 3.  If not, she would wait until fall for preschool with no services.  Fortunately, they emailed me a draft of the evaluation results.  I didn't agree with all of the evaluations.  However, since Ohio doesn't take Down syndrome as an automatic qualifier, I had to keep my mouth shut and not argue.  If I argued and any of it was evaluated differently, she might not qualify.  It is a difficult situation to be in.  It's a shame that the state can't say, "Wow, this child is doing well.  Let's see how much potential he/she has by giving him/her services to capitalize on that."  Instead they say, "You are doing too well.  Come back when you are more delayed and then we will try to help you catch up."  Backwards thought process if you ask me.  Luckily, I was able to call her EI therapist and vent out my frustrations.  I was able to keep my mouth quiet and didn't argue any of the evaluations.

So, in the end, Hailey has qualified for services for preschool.  I've always complained that the standardized tests do not consider sign language as a communication component.  They only count "speech".  In this case, it worked in our favor.  Counting her sign language would have definitely disqualified her.  In the evaluation report, each therapist wrote out what Hailey should work on and what they intend to focus on.  These recommendations will transfer directly onto her IEP (Individualized Education Program).  It will become her goals for the next calendar year.  However, I can have them changed or modified at anytime.  We have her IEP meeting next week and we will all agree on what her goals for the next 12 months will be.   There should be zero "surprises" when her IEP is presented to me on Friday.  It will give us measurable goals.

I'm going to admit, these meetings are emotional for me.  As I've admitted before, I cry easy.  I cry when I'm happy, I cry when I'm sad, I cry when I'm mad, and I cry when I'm passionate about something.  I cry during the national anthem.  I cry during Pamper and Hallmark commercials during the holidays.  I cry watching athletes during the Olympic games knowing the dedication these men and women put forth and the obstacles they had to overcome just to make it to the games.  Yes, my tear ducts are in very good working order :-)  So needless to say, I did cry during this appointment with preschool.  After we established that Hailey did qualify for preschool.  I asked if I could be frank and ask a question about the staff and expectations.  I wanted to make sure that the end goal for Hailey would be to push her academically as well as her therapy goals.  I wanted to make sure that Down syndrome wouldn't be an excuse.  I wanted to make sure that even if Hailey doesn't learn everything the other children learn, I wanted it to be an end goal that she will learn to say, read and write all her letters.  The preschool director interjected with, "Don't short change her.  That will be her end goal...don't automatically think she won't reach it".  I wanted to hug her.  No, I'm not living in a fairy tale world with unicorns and rainbows.  I know it is harder for Hailey to learn me...I've lived with her for the past 3 years.  I know how much effort everything takes.  But I also know that if she isn't pushed and expected to do things, she never will.  Yes, I'm setting the bar high, but if I don't push her, who will?

Some people don't quite understand why Hailey starting preschool is such a big deal or why I'm so worried about it being a perfect fit.  Three years ago, when Hailey was born, preschool wasn't a thought.  I couldn't think past the next day or week.  I couldn't even let myself think that far ahead.  I wasn't convinced that she was going to make it through open heart surgery.  I couldn't let myself think three years down the road.  The boys, Jason and I have been Hailey's main teachers and her main inner circle for the last three years.  We are her bubble.  We protect her.  We know her.  Can you imagine sending your three year old to school where you don't even know if anyone will understand a word?   Can you imagine sending your baby to school where you aren't sure she will speak up and people will understand her wants or needs?  Like standing on the edge of a cliff.  Then I stop myself.  I look how far she has come.  I look at what she has accomplished so far.  I look at how hard she works until she gets things right.  I know she will do okay...this mom is just having some issues giving up control.  I am having a hard time accepting that I can't protect her from the world forever.

I have a very good feeling about this preschool.  It is the school district preschool.  I've not heard a single complaint from anyone who has had a child in this school....neither typical or atypical.  I believe it's a hidden gem in the area that not everyone realizes is there.  The classes are divided by age group.  Hailey will be in the young 3s to mid 3s class.  I've been told that communication will be as much or as little as I would like.  The teacher has experience with children with Ds.  The class is 50/50 (or close) typical/atypical.  They have asked that I put Hailey in pull-ups at school and they will take her as the class goes to possibly jump start our potty-training at home (that was the school's suggestion).  I can walk her into school as long as I want or use the drop off line and they will take her into school.  She won't be riding the bus...I'm sure that will disappoint her but maybe sometime in the future.   She will go four days a week.  Unfortunately, the only opening right now is afternoon.  That stinks more than anything in the world.  Hailey still naps and it will make the afternoon crazy with the other two boys getting off the bus, but oh well...we will figure it out. 

My baby starts preschool in 31 month from today.  Will Mom finally be ready?  I know Hailey will.  I'll be lucky if I get a wave good heart is breaking :-)

Hailey told me her baby needed an "iaper and wipes".  I turned around and this is what I saw.

Luckily she just pretended to use the diaper cream.

Ooops...that isn't right.

Now we need a wipe.

Cleaning her baby.

I don't think she'll be changing any real baby diapers for awhile...she just used the same wipe to wipe the baby's face!

And now the same wipe for her hands.
Time for the diaper

Love this girl to pieces!!!

Wednesday, January 22, 2014

Blog Hop: Truth, Tip and a Photo

This post is part of a monthly blog hop...on the 21st of each month (in honor of the extra 21st chromosome).  Yes, today is the 22nd, but I didn't want to shock anyone with two posts in one day :-)

Truth:  You will never be the person you were before your child with Ds was born.  Life has changed.  You will go through a range of emotions that are strong and raw.  You will see, feel and smell life differently.  More clearly.  You will see the world in a different light.  Some of that is for the best and some of that not.  You will realize that life is too short for drama.  As a result, relationships in your life will change.  Some of those relationships will be stronger.  New relationships will emerge that you did not anticipate.  Some relationships will diminish.  The latter is out of your control and you just have to let them go.  No matter how much you advocate for your child, some people will not see him/her in the same light.  It will be their loss to not know your child better.  Bid them farewell (it's too much drama).  Fill your life with those who welcome your changes.  On the flip side, you will have some people that purposely put themselves in your path because of your child. 

Tip:  Find a support group that fits your life, your situation.  Whether it be you have a child with Ds, CP, or any medical issues (feeding tubes, chiari, etc.)  You won't always need them, but they will be there when you do.  They have been through the range of emotions you are going through.  You can scream, vent, cry and laugh...they won't judge you because they have been there.

"I read baby"

Check out other blogs in this month's hop, HERE.

Tuesday, January 21, 2014

Preschool....35 days away

After receiving Hailey's diagnosis, my brain bounced all over the place.  I fast forwarded to what life would like like at 30.  What life would look like tomorrow.  What life would look like in 10 years.  What life would look like for her at 50.  I missed a section of time.  I didn't think about what life would look like at 3.  Early intervention, open heart surgery and a list of specialist appointments were on my radar.  Preschool was not.  When you meet with your county early initiative organization, you are told that they will guide and help you to age 3.  I was told this when Hailey was 2 weeks old...14 days old.  3 years old seems like a lifetime away!  You don't even let yourself think that far because it seems to out of reach.  Her first birthday rolls around.  You cry and cry.  You relieve all of those memories and moments that are still fresh in your mind because frankly, they were only a year ago.  You think of what you and your child have overcome this first year.  You are proud you made it.  Her second birthday rolls around.  You celebrate.  This year was fun.  The newness of diagnosis is over.  You found your niche in the community....typical and special needs.  You feel confident and comfortable.  2 1/2 have a meeting with your county EI coordinator.  It's time to start transition into preschool. 

STOP!  Hold the presses!  What?!?!?  You want me to do what?  You want me to send my tiny, precious, just turned 3 year old with Down syndrome where?  It feels like she is shark bait and you are going to dump her in a pool of starving great whites.  Ok, yes, that might be a slight exaggeration, but it is how it feels.  You go from comfortable and the feeling of "Ok...I've got this down pat" to "oh no" and the world of the unknown again.  I've stayed home with Hailey for almost 3 years.  I've been her main teacher (in addition to her family, friends and therapists).  I've sheltered her from the world.  Now you are telling me I have to let go of some of that control (yep, I'm type A..OCD).  I start to worry.  I get scared.  I suddenly don't have the confidence that I had a year ago.  I don't want to let my baby go.  I want to always protect her. 

That is where I'm at right now.  We go Friday to find out if Hailey has qualified for services at our school district's preschool.  The state of Ohio does not use the diagnosis of Down syndrome for automatic services at preschool.  Stinks, but that is the way it is.  A child has to be evaluated in three categories.  We had her evaluated by a speech therapist, occupational therapist and physical therapists.  According to our initial rough draft evaluation, Hailey does qualify for services.  She will receive these three therapies during school.  She will attend half days for 4 days a week.  The staff seems extremely excited to have Hailey at the school.  Then the following week (if she qualified), we will meet again to discuss her IEP (individualized education plan). 

Mom isn't quite ready for Hailey to attend preschool...Dad is definitely not ready for her to go.  Overall, I think Hailey is ready.  She loves children.  She loves to be engaged.  She seems to love the staff there.  I think she's bored with mom.  I think it is time she learns from someone other than her mom.  I guess it is time for her to get her feet wet in the real world.  I am excited to see what she learns.  I am excited how this adventure will shape her.  I am sad though.  It's my baby.  I truly never gave preschool a thought three years ago.  How can it be here already?!?!?

Watching the snow fall

Fake smile and playing with her brother.

Apparently, Ian is funny!

She thought he was in her way so she "moved" him to where she wanted him to be.

Ready to watch Ian play basketball.

Hailey wasn't about to let the boys get a picture without her. 

She loves her "buthers"

Monday, January 20, 2014

Holidays Over...Mom Procrastinating

Happens every year.  The holidays are over and my anxiety hits overload.  Too many Christmas gifts to put away, have to unpack from traveling and then there is the insanity of putting away all the Christmas decorations.  Every year, it makes me anxious and puts my OCD into overdrive.  This year, I was a little better.  I told myself I could wait until the kids went back to school after Christmas break to put away the decorations.  All my friends laughed at me...full knowing that I would never last that long.  I didn't and everything was put away after a couple of days of us returning from Indiana.  I didn't stress quite as bad this year because I didn't put the pressure on myself that I normally do.  But I have procrastinated.  I've not written here in over a month.  There is a lot of stuff going on in my mind.  Some of it, I don't want to deal with so if I don't blog about then I don't have to think about it.  Some of it is just hard to get back into the routine of things after the holidays and the extra days the kids have had off with snow.  Yuck...snow!

So, I guess I'll start today with the holidays.  The kids and I headed to Indiana a little before my husband and stayed a couple of days after he headed home.  Jason had to work so the kids and I spent a little extra time with the grandparents, nieces and nephews (and the aunts and uncles).  I always love watching the kids with their cousins.  It never matters how long it has been since they have seen one another...they immediately pick up right where they left off...never skipping a beat.  The boys received everything on their Santa list so no complaints there.  Hailey was funny.  She opened her own gifts. If it was a book, she needed to leaf through it.  If it was an outfit, she would hold it up to her body and say "pitty".  If it was a toy, she tried to open it.  I truly believe she would have been content with only 2 or 3 presents.  She unwrapped each gift very slowly.  Almost as if she was afraid of ripping the paper. 

As always, the time with family flew by.  We returned the Sunday after Christmas on Jason and I's 12th anniversary.  A few days later we spent New Year's Eve at home.  The first time in 8 years that Jason didn't have to work.  We spent a few hours with our neighbors and then watched the ball drop with all three children snoozing in their beds. 

2013 was good to us.  We had ups and downs (who doesn't).   We stay busy with the kids, but we like it that way.  I'm hoping for an uneventful 2014 (fingers crossed!!)

Hailey checking out her stocking.  Note the Pringles in her right hand...she swiped them from her brother's stocking :-)

Apparently, she is stealing Brayden's new helmet.

Hello...someone please help me with this!

Hailey let Aunt Staci curl her hair.

These 3 spell trouble.  Hailey is a little over a year older than both the boys. 

Hailey is not quite sure of this Santa.

Waiting patiently to open her presents.

Surprise...a Doc doll

I think she is telling Daddy "help" :-)