Special Olympics

Everyone has heard of the Special Olympics at some point.  I did not realize how young the program starts.  Recently Hailey has been participating in the Special Olympics Young Athletes Program (YAP).

"Young Athletes is a unique sport and play program for children with intellectual disabilities. The focus is on fun activities that are important to mental and physical growth.  Children ages 2 1/2 to 7 enjoy games and activities that develop motor skills and hand-eye coordination. Young Athletes is an early introduction to sports and to the world of Special Olympics. The children learn new things, play and have lots of fun!  Parents say their children in Young Athletes also develop better social skills. The confidence boost makes it easier for them to play and talk with other children on the playground and elsewhere."

We meet once a week for 45 minutes.  Sometimes the boys go with us to be her partner, sometimes it is mom as her partner.  Some days Hailey participates, some days she doesn't.  Some days she listens, some days she doesn't.  She is 2 and does as she wishes!   She has fun, gets moving and might pick up some listening skills!

Ever Changing Dreams

The night before Hailey was born, I started making a "to-do before the baby comes" list.  Along with that list, I had dreams for my baby girl.  How would she like her brothers?  How would it be dealing with the clothes that comes along with a girl (boys are so much easier)?  How would she look in her first communion dress?  How would her brothers tease her with her first crush, her first date?  How nervous would I be when she left for college?  What career path would she take?  How would it be when my little girl found the right man and got married?  How would my little girl be as a mom? 

You don't realize how many hopes and dreams you place on your unborn child until they are taken away.  With just sentence, all those questions and hopes were gone...vanished.  "Your daughter has several physical markers that lead me to believe she has Down syndrome."  Just like that, they were gone.  No dates, no college, no marriage, no babies.  In my heart, they were all gone.  To even go so far as to question whether or not she was worthy of the name we had chosen for her.  I had lost all hopes and dreams for her.  They hurt too much.  I still occasionally get sad over Hailey never experiencing the love I feel for my children.  To never be a mother. 

Slowly, I dealt with Down syndrome and what I couldn't deal with I shelved.  It could wait, we had an impeding open heart surgery and heart failure to go through first.  The only dreams I had during that time was getting to the other side of open heart surgery.  To see her dimpled grin...to hear her laugh.  To get her to her first Halloween, her first Thanksgiving, her first Christmas, her first birthday.  The dreams were small to most and they were short term.  None of them were too far into the future.  It hurt too much to think ahead.  I was afraid that future wouldn't exist. 

Open heart surgery came and she rocked it.  Days passed...weeks went by...milestones were met.  I learned more about Down syndrome and capabilities.  More importantly, I truly met my daughter.  I saw her...the person.  Her strengths, her weaknesses, her spunk, her charm, her sense of humor, her curiosity. I underestimated her.  Without realizing it, I began to dream again.  I have hopes for her future...dreams...some are the same as the old and some are new. 

No one knows what the future holds for our little girl, but it is nice to dream again.  Little Hurricane has her entire life in front of her.  I can't wait to see what her dreams are!

Hi dear friend, how have you been?

See what I can do?

What do you mean, I'm not supposed to have this?!

You have to catch me first!

Toddler on the Go

Spring has turned into such a busy season in our house this year.  With both boys playing different sports, Hailey's therapies, and now her young athletes program with the Special Olympics, we seem to stay busy almost every day/evening of the week.  Add in the kids' allergies, one child's asthma, and frequent thunderstorms, no one seems to be getting enough sleep in our house either. 

Hailey being #3 gets to be carted around from one practice to another and one game to another.  For the most part, she does okay.  She prefers to be able to run freely, but since I enjoy watching both of the boys play sports, that doesn't happen often.  Otherwise I'd spend the entire game chasing her off the field and removing her from other people's conversations.  I've named her the team toddler.  She enjoys walking down the side of the field waving and chatting with people as she goes.  If they have a blanket out, she will plop down and join them.  Thankfully, most people don't seem to mind her visits (which just encourages her!).  She does like cheering for the boys (and occasionally the other team!).

We haven't seen many tantrums with Hailey, yet.  We have seen maybe two.  She does a good job of letting us know what she wants.  She has spent a few minutes in time-out recently.  I'm not sure she understands it all, but I remove her from the situation and place her in a chair.  That is not what she wants to do so it makes her mad.  She has a bad habit of grabbing people's face.  Anyone have a suggestion?  She doesn't seem to intend to hurt someone.  Almost as if it is her way of saying Hi.  Our other behavior issue is throwing things.  When she is finished with her plate, there it goes....like a frisbee.  She recently threw my phone at her brother's head (right where he was recovering from an accident between his head and a landscaping stone).  I would love suggestions!!!

We have seen an increase in signing and spoken words.  She rocked her last speech therapy session!  Her speech therapist actually said we are probably going to take a break again because she is doing so well.  We'll see how this week's appointment goes.  I'm hoping to take the summer off from therapy.  I'd like to see how she does just being Hailey...just playing and learning on her own.

I still watch her walk in amazement.  I'm not sure when this will wear off!  She's getting sturdier on her feet and faster.  She likes to be with the big kids! 

Cheering for Ian!

Absolutely rotten!

Dancing in the car.

Modeling her new dress.

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Love watching her walk and play outside!

Spring has Sprung...My Heart is Full

Spring in the Midwest is finally here.  Temperatures have warmed up and instead of freak snowstorms we are getting thunderstorms and showers.  Days are getting longer and the boys' activities are filling those evenings.  Brayden's soccer and Ian's baseball are in full swing.  Our evenings and weekends are spent at one sports field or another.  Little Miss Attitude has decided that this round of sports isn't near as fun.  She doesn't like her stroller near as much as she did in the fall :-)  It is a work in progress. 

Hard to believe that this guy has been playing soccer for almost 6 years now!

He chose #4 because of Reds 2nd baseman Brandon Phillips.  He is such a sport nut!

 Spring and walking has opened a whole new world for Miss Hailey.  She seems to be looking everything with new eyes.  Birds chirping, grass, sticks, the kids playing, cars driving by, trees, etc.  Everything seems to catch her attention.  I love watching her play outside and try to chase down the older kids, which isn't too hard because they seem to stop by frequently to chat and play with her.  Each week she is also taking baby steps in her communication.  She keeps adding new signs and new spoken words.  This week, it was "E" for big brother Ian.  We all call him that.  She also has added "here" and "tank to".  Every time she hands you something she says, "here".  Sometimes she signs thank you and sometimes she says "tank to". 

Hmm...I might like this stuff

I wonder if I can sneak this in the house by hiding it in my shirt?

What me?  No, I haven't had any of the chalk near my mouth!  Blue on my face, really?

Wonder who I can find down this way?

Oh wait, guys!  I'm over here!

No mom, I'm not coming home.  I'm heading this way.

See...I can play basketball with the boys!

 Two years ago, these images were too hard to imagine.  So much of what Hailey has accomplished, I didn't know if she would do.  Her personality shines brighter than I ever imagined.  She is exhibiting so many typical 2 year old behaviors (there are a few I was okay if she skipped :-)  I'm so proud at everything she has accomplished and how hard she tries.  The funny thing is...she will never understand that.  She is just being Hailey.  She doesn't know anything else.  To her, she is just having fun, exploring her world, loving her family and friends.  She will never realize how much she has filled my heart by just being herself.

Finding a Balance

I always feel I second guess my parenting with Hailey at this age much more than I did with the boys.  Too much free play time, not enough free play time, right supplements, too much therapy, not enough therapy...you get the picture.  I have the same internal conflict with activities...how much do we do with groups with Down syndrome and how many do we do with all typical.  I know I've repeatedly told everyone how Hailey is more alike typical than not.  I do believe that raising Hailey thus far has not been harder than the boys at this age...just a little different.  However, I think each of the boys were different.  The same discipline that worked with Brayden has not worked with Ian. 

I don't want all of Hailey's activities to be 100% with children with special needs.  That isn't a true representation of the outside world.  However, I don't want Hailey to think she is the only one that has Down syndrome or is "different"  (yes, I hate that word to describe this, but at the moment, I can't come up with another word to explain it). 

Up until now, most of Hailey's activities have been all "typical".  The boys' sports, swim lessons, etc.  We have participated in a few events with our local Down syndrome group, but not a bunch so far.  I would like Hailey to participate in a few of the sports organizations that the boys have participated in, but I am well aware, there may be a point that we may want to consider a different route.  We were approached this past weekend at the grocery store, for Hailey (when she gets a little older) to join a special needs cheer/dance team.  I haven't decided how I feel about that yet.  It's a little early to form an opinion on it, but I guess I am glad that I know it is an option.

I have always been curious about the Special Olympics, but have never known where to start.  A member of one of our Ds groups posted a message about the Young Athletes Program (for ages 2-4) with the Special Olympics starting a session this past week.  I didn't know much about it, but thought it might be a good experience for all of us.  I signed her up and when the night came, I had both boys with me also.  I thought they would moan and groan when we got there.  There was a lot of dancing, jumping, and singing.  They were awesome big brothers (maybe a little rowdy), but they participated and worked with Hailey and didn't bat an eyelash.  I love those two :-)  Hailey seemed to enjoy it, but in true toddler form, didn't always listen and did her own thing :-)

So...bottom line....we will probably find a happy medium with Hailey's activities.  I would like her to have a broad range of friends.  I'm sure we will find a balance between the two that works for her and our family. 

Um...excuse me, Ian....I'm supposed to be doing that!

Evaluations, Therapy & the Down syndrome clinic

Before we had Hailey, I had visited Cincinnati Children's Hospital once.  I had heard many great things about the facility since had moved to Ohio 13 years ago.  I visited a dear friend's son there a couple of years ago.  However, in the last two years, we have visited this hospital or a subsidiary of it more times than I can count.  I remember driving there in the wee hours of the morning the day of Hailey's open heart surgery.  The streets were fairly empty.  Rush hour doesn't start at 5:30 a.m.  I looked at my husband to say something.  Before the words were out of my mouth, he said, "I never wanted to know this place like the back of my hand, but we certainly do."  How did he know what I was going to say.  We were sad about that fact.  75 hours later, that mood had changed.  Our little girl was "heart healthy" for the first time in her life.  Heart failure and death were no longer looming over our head.  We don't go as frequently for Hailey's heart, eyes, or hearing, but we are there often for other appointments.  Hailey sees her private therapists through the Thomas Center (the Down syndrome clinic).  I loathe the drive downtown every time.  I hate the traffic, but I love her therapists so much that I can't switch.  I spoken before about how your therapists become part of your village.  You trust them, you rely on them.  Your child develops a relationship with them.  Everyone has to click.  We clicked and I don't want to mess with that dynamic.  You've heard the phrase, "If it's not broke, don't fix it."  Hailey responds well and is progressing so we aren't messing with it.

Hailey ready to rock her appointment!

Originally, Hailey was scheduled to meet at the Thomas Center every 6 months.  Unfortunately, the way the appointment is billed and how my insurance pays, the appointment is quite pricey.  We see the same therapists privately that would evaluate her during the appointment so we only go once a year.  The purpose of the appointment is to get an overall check of how Hailey is doing in all aspects:  medically, socially, gross motor, fine motor, speech, nutrition, etc.  I know that people have different opinions of the appointment and the overall appointment can be quite overwhelming for some parents and some of the children.  Generally, the appointment will consist of vitals taken of your child and a quick question and answer.  Similar to what you expect from a well-check with your pediatrician.  In a group setting, you will meet with a developmental pediatrician, speech therapist, occupational therapist, physical therapist, nutritionist, social worker and a nurse.  This latest appointment of Hailey's (3 weeks ago), the physical therapist was out so the OT took over her evaluation.  In addition to all the others, we had a resident attend the appointment.  Hailey wasn't as friendly and cooperative with him as the others.

We were early for our appointment and surprisingly we were called back right away.  The nurse weighed Hailey, checked her length and measured her head.  She then took us into a room for questions. 

I'm sure I can help the nurse with this paperwork!

She asked us to wait there for a few minutes until the group was ready for us.  About 10 minutes passed and the nurse returned.  She said they were tied up in another evaluation and the child was not cooperating so Hailey and I would need to wait awhile longer.  The room we were in was small and extremely warm.  She brought Hailey a few toys to occupy her. 

Hmmm...the nurse is gone, I'm sure she won't mind if I rearrange her desk!

About 15 minutes later, the team arrived.  I think the room was a little small for all of us, but maybe it was just me.  I was extremely worried that Hailey wouldn't cooperate with the evaluation because of our long wait time.  I was partly right.  There were parts that Hailey 100% knows how to do, but refused.  Instead she would smile, stand up and walk away.  Fortunately, the speech therapist is one who knows Hailey so she "knows" what Hailey can and cannot do.  She has seen it and heard it.  My child was quite the stinker.  One part was a giant flashcard with several black images on it.  The speech therapist asked her what do you ride on.  Instead of pointing to the bike (the correct answer), Hailey signed "car" and made car noises.  Smart little cookie.  Hailey refused to stack blocks, but fortunately, I took a picture of her stacking while we were waiting.  I think I almost choked when the OT pulled out a handful of coins and a regular piggy bank.  We've never tried that at home.  I'm not purposely giving Hailey a choking hazard.  I thought for sure she wouldn't get them, but that little girl rocked it.  She put them all in the bank.  I was impressed with that one. 

The nurse let Hailey play with this light up toy...she was mesmerized by it!

At the beginning of the appointment, Dr. O asked how long Hailey had been walking.  I replied that she had been walking a couple of weeks before her 2nd birthday.  Dr. O continued asking me questions while observing Hailey with the therapists.  About 20 minutes later, Dr. O looked at me with a little of a shocked look on her face.  She said, "She just turned two."  It was a combination of revelation and question.  I nodded.  She followed with, "She is doing extremely well."  My mom heart expanded.  Sometimes with all the guilt mom's hold, it is nice to hear you are doing okay. 

After everyone evaluated, the group left the office to confer with one another.  A few minutes later, they came back in with their recommendations and results.  I never did ask where Hailey fell with gross motor.  To be honest, it isn't high on my radar anymore.  Hailey is walking.  We have her walking as much as we can when we are out and about.  Some days it is nearly impossible to have her walk places because we are on time constraints.  She is a "looker".  She wants to explore everything and speak to everyone.  Eventually we need to work on jumping, running, skipping, etc, but right now we need to build up those muscles by walking more and playing outside.  The OT said she is right on track for fine motor skills.  We need to keep working on it.  Play with sidewalk chalk this summer.  Keep working with crayons and pencils.  She doesn't recommend private therapy at this point.  The speech therapist said with receptive language, Hailey is at age level.  Proving that even though my little girl doesn't speak much, she knows what is going on.  She understands.  With expressive language, Hailey tested at 18 months.  Unfortunately, the testing model they use does not count sign language.  If they counted the 50+ words she signs, she would be at age level there, too. 

I left the appointment with several recommendations from each professional in the appointment.  We have no medical concerns at this point so Dr. O said we could come back in 2 years if we would like.  More than likely, we will come back next year, right as Hailey is transitioning into preschool.  At that point, we will probably pick up OT and alternate appointments with them and PT in addition to our speech therapy.  We are also considering having Hailey's sleep study done next year at 3.  She doesn't show huge signs of having apnea, but for some reason I'm paranoid about it.

Hailey likes to stay busy while waiting!

This week we received the written follow-up for Hailey's appointment.  They are all very good about writing the summary treating Hailey as a person and not a number.  She was described as "a delightful little girl who is doing extremely well.", "engages beautifully in a social environment", "beautiful little girl" and "engaging".  I generally loathe the follow-up summary because it depresses me.  This one was good with the exception of one part.  According to the nutritionist, Hailey's weight increased too much from 1 year to 2 years.  Dr. O didn't seem too concerned with it because Hailey has just started walking and we just recently switched from whole milk to 1%.  We watch portion sizes because Hailey doesn't seem to have the "I'm full" trigger or she hasn't learned to listen to it.  We'll keep an eye on it, but most of my kids thinned down once they started walking.

I'm glad that we have a wonderful Down syndrome association in the area and we have the Down syndrome clinic at Children's.  I hope they are a wonderful resource for others as well.