Therapy, orthotics and shoes

I'm trying to not write too much between now and October 1st.  October is Down Syndrome Awareness month.  If I'm going to blog for 31 days, I don't want to use up all my topics!

This morning, Ian, Hailey and I headed downtown for Hailey's regular physical/speech therapy session at Children's.  Some days I look forward to these therapy sessions.  I love, love, love her therapists at Children's.  They love their job, they love their patients and it shows.  They were complaining how tough their jobs were and how hard their two patients before Hailey were today.  For a moment, I thought they were serious until one of them said that is very difficult to work with such cute children.  The gentleman from the orthotics company met us at her appointment and we settled that first.  Once they were snugly fastened onto Hailey's tiny feet, therapy began.  Her speech therapist worked on the alphabet sounds with Hailey while her physical therapist adjusted her body on the small ball to work her core.  Hailey made most of the sounds and even said a couple of the words.  They then moved to a higher surface so Hailey had to stand, squat and bend over.  She played with a little people barn putting animals "up" in the loft and "down" in the stalls after Hailey squatted down to pick up the animal.  She walked down the hall with a k-walker (which she is not fond of at all) while looking at flashcards.  She walked back the hall holding onto a hula hoop.  I think the poor girl was wiped after that.  She was quite smiley and chatty all through therapy.  I do believe she has the makings of becoming a stand-up comedian.  We had a few minutes left so while our physical therapist checked our upcoming appointments, our speech therapist walked Hailey down the hall to practice waving and saying "bye".  She wasn't aware that Hailey has mastered that one.  When they returned, she announced that Hailey has about 6 more people that want to become her therapists!  They were impressed with her waving and her "bye".  It is quite evident what she is saying and she flashes the dimples with her bye.  That gets them every time!

We made a quick trip to Stride Rite to get fitted for shoes.  A brief 10 minutes and quick $50 later, we were out the door with a pair of white and pink sneakers.  In true Hailey fashion, she mastered removing them quicker than it took to purchase them! 

As of now, the girl is not fond of her new apparel.  I figure in good time she will decide to like them or give up because her mom is just as stubborn as she is.  I'm hoping that  they will assist her in her quest to walk.  As with everything else...only time will tell!!!


I was told twice today that Hailey had an extra twinkle in her eye that made her look a little more mischievous than normal...I'll let you be the judge of that!

I think this is my fave in quite awhile!  She is so funny!

No Pink Elephant

Sometimes Hailey having Down syndrome or having had open heart surgery, can be like the pink elephant in the room.  I don't know if other people don't know what to say...if it makes them uncomfortable.  Maybe they are afraid I will get on my never-ending soapbox.  Sometimes it bothers me and sometimes I just brush it under the rug and ignore it. 

This past weekend, my family traveled back to Indiana to attend my 20 year class reunion...***gasp!  I can't believe it has been 20 years.  I've mentioned before how rural the area was where I grew up.  Our graduating class was 74 people.  Everyone knew everyone.  Some of our parents attended school together.  Our teachers knew our parents.  Most of us had siblings in the same grade, too.  You knew everyone and you knew their story.  Graduating from a small school like that and entering the real world can be like a fish out of water.  It is hard leaving people that you have known for a decade.  In the end, I did.  I graduated college and for the most part, never really went back.  Most of the classmates at the reunion, I have not seen for 20 years.  Thankfully with the help of technology, we have kept in contact or reunited over the last few years with Facebook. 

I was nervous attending my reunion Saturday.  I graduated co-valedictorian of my class and now I am a stay-at-home mom.  I worried about what to wear (unfortunately, having 3 children and 20 years, has caused me to add a little weight since high school).  I've always lacked self-confidence so I was worried about what people would or wouldn't say about Hailey.  We grew up in a small community and there were not many people with Down syndrome in it.

I didn't give my class or myself enough credit.  I was presently surprised.  There was no pink elephant...I didn't get on my soapbox.  Every person approached me and gushed about Hailey.  How they love her squishy face...how they love her dimples...they love the two little pigtails...and her one sock on, one sock off.  Pictures of her bring smiles to their faces and they look forward to the next.  Some told stories about people they know with Down syndrome.  Some told stories of other people they know with special needs.  One friend spoke of a cousin that has been given higher than normal odds for having a child with Down syndrome.  I gladly gave my contact information, but also told her not to push her.  One even commented how much she would love to adopt a child with Down syndrome.  We spoke of her heart surgery.  The worry...the waiting...the relief.  We spoke of other obstacles we have overcome over the last 20 years. 

It was great catching up with dear friends.  We always say that Down syndrome does not define our children.  It was so fabulous to know that others see it the same way!  Hopefully, we get to reconnect and visit again before the next reunion!

Part of our class.  I wish more could have made it!

Me with 3 of my best friends ever

Fabulous Foto Friday

I have a lot to say, but haven't thought it all through yet.  Maybe I will get to it next week.  Just wanted to share these two pics of my favorite baby girl.

Messy girl!  She loves spaghetti!

My big girl!

In House Staff

I have always loved where we live but since we have had Hailey, I have more of an appreciation of the area.  The resources we have at our disposal are irreplaceable.  Having access to one of the country's top ten children's hospitals for Hailey's open heart surgery provided a great deal of comfort and reassurance during one of the most difficult times of my life. 

However, I realized at a very early stage in Hailey's life that one of the best resources and motivators in her life had nothing to do with where we lived.  They were going to be with her no matter where our house was...because they were her big brothers.  They are her in-house physical therapists, speech therapists, feeding team, motivators, and physical trainers.  The love they share brings a smile to my face always!

A few snuggles after all that chasing.

She's ready for more and he's ready for a nap!

Therapy...Gains and Support

Anyone who doesn't know Hailey would think she is a ten or eleven month old child, not almost 19 months.  Gross motor-wise, that is where she is.  Maybe a little closer to twelve months.  She is the size the boys were at a year.  She isn't walking.  She is on the verge, but I'll leave it at that because I have become superstitious since having Hailey.  I don't like to make any announcements on any milestone until she has mastered it because she has been known to stop making progress the second I say she has accomplished something!  What a stinker!  Hailey had an early intervention evaluation this week and we had to update her IFSP.  She had mastered everything on her last IFSP, but some we kept on there for the next 6 months because they are evolving and on-going.  Other than gross motor, she is on target and not delayed in the eyes of the state.  No, a stranger may not recognize some of her words when she speaks them, but they are there.  She can also sign them and more.  She's learning them faster than I am. 

One of the boys forgot to shut the door...she emptied the entire roll later in the day.

What?  I didn't do it.

Ready to empty the cabinet

If I smile big enough, maybe I won't get into trouble!

Looking sweet and innocent.

Apparently she didn't want Cheerios this morning.

As I watch Hailey play with her toys or empty my cabinets or climb on the couch (yes, we have figured that one out this week!), she's a toddler...just as mischievous and frustrating as the boys were.  Guess what....I love it!!!!  I love watching her figure out toys, stealing her brothers stuff (especially their snacks), or sneaking into the cabinets looking for anything and everything she isn't supposed to have.  She is a handful and a charmer.  The handful part I'm good with.  The charmer, I'm going to have to address as she gets older.  When being told no or when she is begging for something, she will tilt her head and grin.  This tactic works for everyone but mom.  I don't want people to give into her or expect less because she is the baby, because she is a girl or because she has Down syndrome.

Head tilt...generally it is paired with a pouty look or a giant smile.

The only thing that she does sit still for...Signing Times.

Hailey's speech therapist definitely did not read my blog post where I declared I am giving up on straw drinking...they worked on it at therapy this week.  Guess who actually attempted it.  She didn't scream and refuse to even try...she saves that for her mom :-)  She actually even succeeded in taking a few sips...on her own.  So, this mother is now eating her words.  I dug the honey bear cup back out and attempted to use it today at lunch.  I've decided that the easiest bottle to remove from her daily routine will be her lunch bottle.  It took us a little while, but sip by sip her and I worked on the entire bottle amount out of a straw.  Hopefully, she will eventually get the hang of this straw and we can remove her bottles one by one.  If she ever gets the hang of it (she won't go to kindergarten with a bottle!), her bedtime bottle will be the last one to remove. 

I am going to have to share a little brag.  Hailey's speech therapist made an ABC book.  While Hailey's PT had her balancing on a ball, the speech therapist and Hailey looked through the ABC's.  One by one, she said the word and made the sound...one by one Hailey repeated the sounds.  Hailey made every sound but one (q or x...I can't remember).  I was amazed because Hailey will not do that for me at home.  Her PT looked at me and said, "We have never had a child go through the entire book on the first try.  That is amazing."  I was speechless (which doesn't happen often!).  Who was that child in therapy?  I was very proud of her.

In therapy this week, Hailey was also measured for her Sure Steps.  I was upset at first because I really wanted Hailey to learn to walk without the assistance of them, but it hasn't worked that way and she needs them to succeed so that is what we are going to do.  She will get them in two weeks.  I'm actually excited about them now.  She has made such strides in the last two weeks (right when her momma needed the encouragement) that there will be no stopping her once she has the right support.  Boys beware...there will be nothing safe in our house anymore!

Worth Determined by Ability?

Motherhood...it's a sorority that you join from the minute you get the "positive" or "plus" on your pregnancy test.  You share stories of mishaps, you share helpful hints and tips that worked for you.  Most of the time it is a good thing.  There is something that seems to go along with it that I didn't realize...competition...bragging.  Your child is a part of you.  Somewhere in our subconscious, our child is an extension of us.  If your child misbehaves, of course, everyone believes it is a reflection on you (isn't that how we feel?).  When your child succeeds, we brag.  Does it mean we are better parents?  Does it mean our child has better genes?

As a mother of a child with special needs, we do celebrate when Hailey does something new.  It's different than the "my child was reading at 4" or "my child was potty-trained at 18 months".  This is pure celebration because I've watched her struggle, I've watched her fight to overcome obstacles to achieve a particular goal.  We celebrate little things that most people wouldn't understand.  Hailey climbed on the couch yesterday.  Do I dislike that we will now have to take her off the couch 100 times a day?  Yes, but I am so happy that she had the strength to climb and she had the motivation to do it.  Hailey loves the inside of my cabinets.  I told her physical therapist today that she stands at the cabinets and opens the doors.  Does this sound like something most people brag about?  Nope, but with Hailey it means she is getting stronger.  She is standing with only one hand supporting her and she is reaching and moving her other arm and her body.  It means a lot of work for mom (cleaning up her messes), but it means that the work we are doing is paying off. 

I'm always happy to rattle off the things that Hailey can do, but I'm quite frank with what she cannot do.  The girl cannot and will not drink out of a straw (did you hear that Hailey - maybe it will make her want to since I've told the world she can't). I hope I can get my point across here.  Sometimes to the outside world, I feel like I "need" to tell them the list of things she "can" do.  I feel like that is what people want to hear.  As if, I have to show her value by the things she can do that other toddlers her age are doing.  Why?  Does it make me a bad parent because I do not have the patience to work on the straw with her anymore?  Am I not working with her enough if she isn't making animal sounds?  Why as parents are we judged by what our children can and cannot do?  Is Hailey less of an individual because she isn't walking?  Will you not acknowledge her because of it?

I'm not sure how to combat it.  Do I just give up or do I list all the things she "can" do?  What do you think?  How do we make people realize all people have the same value regardless of their abilities?

I can't get her to smile anymore with her eyes open!

Buddy Walk - All Joy, No Tears

I've been in a blogging rut this week.  We traveled to Indiana for my husband's 20th year class reunion and the boys started back to school (I'll blog that one later) and I have another one swimming in my head.  Hailey has an eval this week with the county EI and then gets fitted for her Sure Steps.  We have lots of going on, but I just haven't had a clear enough head to blog.

Today we participated in our first ever Buddy Walk!  I didn't realize it until watching the news this morning that our Buddy Walk is generally the largest in the country.  Last year there were 11,000 people participating.  I was worried about the weather.  It stormed last night and the weather channel kept saying it would rain until 9:30 a.m.  Ironically, as we drove downtown the rain started to let up and the skies started to brighten.  Everything was water-logged, but the rain stopped about 9:20 as we climbed out of the car to join the festivities. 

Hailey loves Joella (and her long, ready to be pulled blond hair!)

Of course Ian has to check out the Reds tent!

There was no way to get a picture of all of the people!  It was unbelievable.

Isn't she beautiful?!

Hailey trying to get Laney's attention...Joella trying to protect her big sister.

What a gorgeous day it was!

Too much excitement for Baby Isaac!

Taken just for Hailey's uncle.

Gapper...another must stop for Ian!

Dad and Ian

I was so excited to join the Buddy Walk this year because we didn't last year.  It was too close to Hailey's heart surgery (2 months) and we were emotionally spent.  I couldn't deal with the emotion of the walk.  My oldest son had a soccer game at the same time as the walk.  We left it up to him so he has decided he will go to the Buddy Walk every other year so he played his soccer game this year and next year will join us.  So it was the 4 of us and I received an email the end of last week from a very dear friend that her and her family were planning on driving up from Lexington to join us.  Her daughter, Joella, is a beautiful, sassy, 5 year old and has Down syndrome.  They participate in their local Buddy Walk, but she wanted to join us in our first.  I'm so glad she did.  She was a distraction for me!

There were so many people....so many groups (families, cheerleaders, co-workers, therapists, Xavier University sport teams, high school teams).  Everyone has a different reason for being there:

• have a child, sibling, grandchild, niece, nephew or cousin with Down syndrome
• a friend has a relative with Down syndrome
• a co-worker has a relative with Down syndrome
• volunteering for community service hours for school

I don't care the reason they were there.  It was overwhelming to so many people there for one reason...to support individuals with Down syndrome.   To celebrate those individuals.  To show that their lives are valuable, they are loved, they are cherished.  All day, I kept my tears at bay and now they start to fall.  I just can't explain the feeling of being there.  It is also nice to be somewhere that Hailey isn't stared at because she is different, but is stared at because she is so incredibly adorable!

Hailey finally gave it up!

I was afraid that this walk would resurface my fears of DS, but they didn't.  Seeing people of all ages sometimes will bring up original fears that I had once Hailey was diagnosed, but I didn't feel them at all.  I could just feel the love and happiness and pure joy from everyone.  I know that not everyone will make it to a Buddy Walk in their lifetime, but I encourage everyone to try to make it to one.  Your support would mean everything and you won't regret it!