Happy Halloween 2011

Another great year of trick or treating.  Just a couple of us from tonight.  Unfortunately the day got away from me and my costume just didn't get put together, so I'll have to get started just a little bit earlier next year, but I still had a great evening watching the girls and being with friends.

 Here is our Peacock, Rapunzel, and the Harry Potter Crew of Hagrid, Hedwig the Owl, Hermionie and Ginny Weasly

Schools: Part Three - Success!

Every morning, when I get her up, I ask her, "Are you ready for school?"
Then I ask again  as we get dressed and eat breakfast and put on shoes and  as we head out the door, with our backpack and lunch in tow and again as we are getting in the car and as we approach the school.

In the beginning, she did nothing.  Then she would sign "ready school"  when it came into view.  Then it was at the corner when we got off the freeway.  Then it was getting on the freeway. And now she signs "READY" when I get her out of bed....most days!

When she missed a whole week because she was sick, she didn't once ask about school which I thought was strange.  On the day she finally started to feel better, we got in the car to go pick up other kids and she signed, "ready" and I asked for what and she signed "school' with a HUGE grin!

Once Aubrey got used to school and the routine of everything, she has LOVED it!

She could ride the bus...but I don't feel like she's ready for that step yet...and neither am I.  I feel like it is really an important time to be with her in the morning and talk about the day, and especially to see her right as she is finishing her day at school and things are fresh on her mind from the day.

Her teacher does a journal with her each day and she keeps it in her backpack so that we can see it at home and on the weekends, we journal so they can talk about it at school.  It  has been a great tool for communication back and forth from school.  This was one of those things that we requested from the teacher since she can't actually tell us what she does each day.  She LOVES to look at the journal and "talk" about each of the entries.  I sometimes find her just sitting on the floor by her back pack reading her journal.  She is very proud of it.

There is lots of "HOMEWORK" aka Family Activities that we do at home with Aubrey to enrich her preschool experience.  We have helped make a book about our house with pictures to share with the class when they talked about the three little pigs and their houses. We have made a family flag to share during the family themed week.  We hang these projects up on the kitchen wall.  Aubrey likes to go over and look at her things and talk about them.  I especially love when they send pictures home from school and she can show me what she did that day.  (black and white 8.5x11s on bottom left)

Preschool is a lot of work for us!  But when I see how much she is enjoying it and learning, I wouldn't have it any other way and I know that someday, she'll actually be able to TELL me about her days all on her own.

A little more about Pearson:  It is like a typical preschool program but is HEAVILY language based.  All the kids in Aubrey's class (3 others right now) have hearing aids.  She is in a TOTAL COMMUNICATION classroom which means that the teacher speaks and signs everything.  There are two classrooms like this and two where there is no sign language (in that classroom not everyone has hearing aids or such large speaking delays).  It is a full day program from 8:15am - 2:15pm.  We have opted to not send her in the afternoons so that she can get a long nap in at home.  The speech therapist is IN her classroom twice a week and often teaches lessons.  She is receiving some physical therapy, about twice a quarter.  She is receiving occupational therapy as well.

Schools: Part Two - Process

(if you missed part one it is here)

Once we had sorted out, WHO we needed to meet with and contact, we were in business.  Aubrey is assigned to a "home school" in the school district that we are zoned for (not in the city that we actually live in).  She will always be assigned to that school.  We also have a school district representative....her name is Allison and she has been the most helpful to us.  She is the Early Education Coordinator for the district.

At Aubrey's 2.5 year ECI meeting, we talked for a bit about transitions to school, our concerns and wants for Aubrey (and our own) and about the process.  Our next step was to have our ECI coordinator contact the school district and set up a meeting with the  Early Education Coordinator.  She explained the entire process and even took us on a school tour and answered a million questions.

We were assigned to our home school and a transition teacher.  Her job was to evaluate where Aubrey was at through an interview and then through some testing, and set up any other testing, based on the services that she was getting through ECI.  The testing she did was lots of developmental things like stacking blocks, naming shapes and colors, counting and that sort of thing.  The test was scheduled for 12:30pm (right in the middle of nap) and in an boardroom at a HUGE table.  Things did not go well!  It was a good thing they allow parents to answer by interview and not only on what she could "perform" for them.

We also had a speech therapist come, who after 5 minutes, decided she was done, because Aubrey was "non-verbal"!  I could have saved her the trip by telling her that Aubrey actually SAYS about 5 words and signs all the rest!

We saw a physical therapist as well.  She was completely impressed with Aubrey's abilities and we were proud to show off all the hard work she had been doing.

It should be stated that in ECI, a child can receive services based on a diagnosis, such as Down syndrome.  In school, you only receive services if you are unable to "function" in the class and throughout the routine.  Since she is walking and can do all those physical things required to function in a classroom, we assumed she wouldn't get PT.  And since she didn't receive Occupational Therapy through ECI, they didn't test her.  Our PT covered both areas.  (she is getting PT at school now and also OT--more on those tomorrow)

After all the testing, they set up  her initial ARD meeting.  ARD stands for Admissions, Review and Dismissal.  Basically a meeting to  admit her to school, review frequently if she needs special help at school and dismissal which happens when they no longer need services (for Aubrey it will be graduation from high school).  It is held at her "home school".

There were a lot of people at that meeting.  It is made up of all the people that tested Aubrey (3), the school principal, a preschool teacher, a general education teacher, 2 people from the Regional Day School for the Deaf, the District Early Education Coordinator (Allison).  These people were "required" to be there.  We are then allowed to invite anyone else that we feel knows Aubrey well and can speak to her needs, so we invited our ECI service coordinator as well as speech therapist.

It was a two hour meeting that outlined each test and then set goals for her in the coming school year, and IEP or Individual Education Plan.  It was the committees recommendation that she attend the Regional Day School for the Deaf to address her language needs.  The home school classrooms are not taught by teachers who know sign language, beyond the very basics, and wouldn't be TEACHING her any so that she could further her communication skills either.  And non of the kids would know sign language and be able to talk with her....she would be all alone in the classroom!  It was a very scary thought.

So she would be attending Pearson!  (the official name for the Regional Day School)  And we were so pleased and relived that they agreed to send her there (her home school district actually has to pay for her education there and it is not a frequent recommendation...so we are thankful).  If there is anything that I learned through this process it was to ASK lots of questions and NOT to be afraid of pushing for things.  We knew Pearson was going to be the best place for her and we would have pushed for her to go there if they hadn't recommended it.

Tomorrow:  Preschool Experiences

Schools: Part One - Why We Moved

Before Aubrey was born, we moved from the "Newberry" house...to the "Tyler" house.  It was the right move for our family.  We loved our city, so we stayed, but our growing family needed a bigger house.  So we moved a couple miles north, to a much bigger house, with a much bigger yard.  I loved that house....  But when we found out that Aubrey had Down syndrome,  we both knew that we wouldn't be staying in the "Tyler" house.

We have friends that had used the special education in our city....and it wasn't the best.  Neighboring city....had the best around.  Every parent wants the best for ALL their children.  Since our other girls go to our church school, they wouldn't be affected by a move.  But moving, might make all the difference to Aubrey.  So wanting the best for our girl, we decided we would move for sure before Kindergarten, but probably before she turned three.

Fast forward....Aubrey is almost two and I have officially quit my job to stay home and manage the house and schedules and the Lord blesses us with the news that another one is on the way!  I knew we would never be able to keep a clean house with a new baby in the house.  So we put the house up last fall, in the hopes of moving before Baby arrived in January.  We moved right before Thanksgiving.

Here is where our story gets a little complicated.  We were blessed with a great ECI team in our old city, and they all agreed they would keep Aubrey since they had had her since birth and it wouldn't be too long before she turned three.  So we have ECI from City A.We now live in City B, but are zoned for schools in City C
( our desired school district), and because Aubrey has a hearing impairment, she was eligable to go to the Reginal Day School for the Deaf in City D.  It couldn't get any more complicated and city to city is so different and they don't work with each other much.

Our ECI Auditory Impairment Teacher - who happens to now work at Aubrey's school:)

In then end, we are still so glad that we moved here.  We LOVE our new house and neighborhood and the school thing....has all worked out.

Our ECI Speech Therapist

(coming up, ARDs and IEPs and where she goes to school)

Good Day

It was a good day today....make that a great week for Aubrey at school.  We had another ARD meeting this afternoon for her and that went great too!  And I would love to write more about that....but it will have to wait...because it is soooo late.....and the RANGERS are trying to WIN the World Series right now:)

WW: Good Bye Summer

(this should have been a GO RANGERS post...but that will be delayed too:)

Growth

 If someone had told me 10 years ago that I would be a mom of FIVE and they would all be girls and one of them would have special needs....I wouldn't have believed them.  I think as people, we under estimate ourselves all the time.   I NEVER would have thought that I could do all that I have done since Aubrey was born.  I have more growing to do...but she has put us on a new and different path of growth.

I saved this quote awhile ago, because it is a good reminder for me that I am strong.  And that no matter what comes my way, I"m just gonna face it.  We've been through a lot with Aubrey and I know that there will be more challenges in the future.  But because of her, we are stronger more confident people and parents and we have learned patience and understand and we're gonna keep learning and growing.

Fairness

Let's just get this out of the way:  Life is NOT fair.  And my kids are learning that among other things.  It is not fair that Aubrey had open heart surgery at 4 months old, and it isn't fair that they get dragged along for lots of appointments sometimes.  But they are learning, that life isn't fair.  And while sometimes it feels like a lot of our schedule revolves around Aubrey and her schedule and needs...Monday's are not about her....they are reserved for someone else.

Monday's are for Ella's ballet!

(Ella is on the far left in the long sleeves)

And if you aren't Ella, then your place is in the hall....or doorway if they leave the door open and you don't distract the class.

My little girl, watched carefully and took it all in.  I could see the wheels turning in her head as she watched and I have no doubt that one of these days....we'll see her moves too.  They're coming, but in their own time:)

If you know Ella, she is NOT shy.  She will and DOES talk to anyone and everyone.  But at ballet....she is shy and quiet and nervous.  I don't know why except that I have to talk her nerves down every single class.  It is foreign to us that she is so nervous about this.  

Ballet is hard work for her.  And I have to reminder her that all things take hard work and practice and very few things will come easy.  But if she loves it, she will succeed and if she tries, that is ALL that matters.  My girl loves ballet and tries hard and she is getting better week by week.

She is a good listener (shocking, I know:).  She watches carefully and only when confident, does she display that she can do it.

And sometimes, when she's feeling confident and good about herself, she lets herself get silly and loosen up and enjoy that grin in the mirrors!

And that little spectator, who spent on HOUR sitting in the doorway....

Was having a hard time just watching.  She kept scooting a little further in, but was always mindful when I reminded her ONLY in the doorway.  And she would flip her legs out behind her, and slide herself out and start her scoot all over again.

Watching is HARD work!

Life isn't fair and it is hard work and one needs to be patient, but the rewards....are tremendously wonderful when they finally do come.  (especially covered in orange glitter:)

Being Aubrey's BIG sister

I was recently asked, "so what do the girls think about Aubrey having Down syndrome?"

When we brought Aubrey home from the hospital...we sat the girls down and told them that she had Down syndrome and what it might mean.  (they already knew about her heart)  Alice was 6, Kate was 4, Ella was 2.

Water on a ducks back....they didn't care....they just wanted to get their hands on her!  I figured that they would ask more when time went on.  So far they haven't asked much.  They attribute all of her needs to her physical problems.  She doesn't talk, because she can't hear as well, which in turn is why she gets to go to preschool even though she is so little.  She is little because she had heart surgery.  And in some respects they are right on.  Aubrey's whole preschool class is there because they have a hearing impairment and speech delays and none of them have Ds.

She is just Aubrey to them...and they see love and beauty and sisterhood.  I wish we could all see people with disabilities this way.  The world would be a better place.  It is an open conversation and when they have questions they ask and when they don't....they don't.

 I have no doubt that someday, they will realize what it means to have a sister with Ds.  Their relationship with Aubrey will be different than it will be with their other sisters.  DIFFERENT....not bad, or worse, just different.  And I don't know what that means....we won't know til they grow up.  What I do hope is that they have a wonderful bond like me and my sisters have and that they ALL worry about each other and stick up for each other and take care of each other.

Something I do worry about is where Aubrey will live.  Obviously she would always be welcome in our house....but what if we couldn't take care of her or something happened to us.  I wonder if her sisters would take her in.  Which one would step up?  I hope they would fight over having her come to live with them:)

Do they always love being her big sister?  NO!  They hate being dragged to appointments (especially the older two) and they don't always want to be helpful with her.  I guess that makes them like everyone else!  But for the most part, they are her biggest cheerleaders and always wanting to learn signs and hear about her school and stuff.

This weekend at the Forensics Fair at school, Alice did try to "sell" Aubrey....but she tried to sell them ALL.
You know that poem by Shel Silverstein "For Sale"?

For Sale

One sister for sale!

One sister for sale!

One crying and spying young sister for sale!

I’m really not kidding,

So who’ll start the bidding?

Do I hear the dollar?

A nickel?

A penny?

Oh, isn’t there, isn’t there, isn’t there any

One kid that will buy this old sister for sale,

This crying and spying young sister for sale?

Alice changed it to FOUR....and had a sign to hold while she recited the poem.  It was funny and she did a great job.  And while some days I think she would like to sell her sisters off....most days they come home and just love each other up!

I love how she drew each sister on her sign and the "I'm not kidding!"

So there you have it....having a little sister with Down syndrome....No Big Deal!

Buddy Walks

I am including a post about Buddy Walks, so that those who are not familiar with them, can be. I didn't actually know about the Buddy Walk until Aubrey was over 1.  We've not had a chance to walk in one yet.  Seems every year we have sick kiddos.  We're really hoping to this year.  Many states hold their walks in October, very fitting:) However, Dallas likes to hold theirs in November, when it is much cooler and more enjoyable to walk outside:) These walks help promote awareness and set up programs that help those with Down syndrome and so much more. Here is a bit about Buddy Walks. 

The Buddy Walk^® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

Over the past sixteen years, the Buddy Walk program has grown from 17 walks to nearly 300 expected in 2011 across the country and around the world. Last year alone, 285,000 people participated in a Buddy Walk! They raised more than $11.2 million to benefit local programs and services as well as the national advocacy initiatives that benefit all individuals with Down syndrome.

The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is an inspirational and educational event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk in your local community!

Find a walk near you by following this link.

Best Place for Afternoon Snacking.....

UNDER the kitchen table...of course:)

Aubrey is such a good big sister offering to actually share her beloved snack with Emmie.  Good today because it was veggie stix....bad yesterday when I was fishing PEANUTS out of her mouth from the trailmix she was sharing (Emelia may or may not have enjoyed an m & m too before I could fish it out ..only evidence was a blue mouth:)

Still sick....

For us, one of the biggest problems with Aubrey is her immunity.  Kids with Down syndrome are more likely to get infections that affect lungs and breathing and they also tend to take longer to get over them as well....Story Of Our Lives!

Heart Surgery: 3 weeks in hospital....came home on oxygen.
2nd Winter:  Got Pnemonia and RSV (followed by various other viruses for weeks), hospital for 8 days, came home on oxygen for almost a month.
3rd Winter:  Got Flu, stayed a week and had the hardest time getting her OFF that oxygen.

Anytime she is sick....it is a long road back to health.  So much work to keep her healthy, but so much easier that dealing with her when she is sick and trying to regain health.

She has a fragile immune system and we take that very serious...and sending her to preschool, my main concern was her health and ability to stay healthy.  She missed what was supposed to be her first day of school in September because she had a flu bug and now she has missed a whole week...wondering if her whole year will be like this....and if she will ever have a better immunity to germs.

Since she was running a fever still yesterday we went back to the doctor.  Her ears have ALWAYS been clear.  1 ear infection at 5 months and 1 other time she had some fluid.  That is it.  He said she was starting to get an ear infection, so it called for antibiotics.  Many kids with Ds have lots of ear problems and infections and often require tubes.  We have been lucky there.  We are hoping that is the end of the fever....but the cough and snot are still pretty bad.  Keeping on top of our nebulizer treatments and vitamins and trying to keep her eating and drinking....she's down 2 lbs since her birthday:(

Hoping to kick it this weekend and send her back next week....