Slow and Steady - Day 7

She isn't at the same level as her peers.  She isn't at the same level as her little sister.  She isn't at the same level as anyone....She's at her own level and she OWNS that.  And she is proud of that and she celebrates that.  My prayer is that she always understands that and celebrates who she is and what she can accomplish.

 I knew when she was born, that she was going to be delayed and she would never keep up with the kids her age.  When Emelia was born, I knew that one day her little sister would pass her up, in all areas of life.  What I didn't know, is how that would feel...until this year.

Emelia is faster in the gross motor areas.  She can ride a bike faster and run faster and is swimming faster and jumping better and dancing more.

 Emelia is better at fine motor skills.  She cuts with more ease and is writing most of her letters without frustration.  She can copy her name off her desk.

They are essentially the same height and weight and wear a lot of the same clothes and they are both potty training.....still.....(we have good days and bad, but that's a post for another day!)

Aubrey CAN cut lines and some circles.  She CAN write the first two letters of her name (Au) WITHOUT looking!  She can write H and M.  She can READ!

It is hard to see Emelia do things that Aubrey has not yet mastered, and with such ease, but I have to remember that ALL of Emelia's accomplishments are just as amazing and praiseworthy as Aubrey's are, no matter the order they happen in.  And no one cheers louder for Emelia's successes than Aubrey!

The day I'm waiting for, is the day that Aubrey realizes that she is not keeping up....

That day, my heart will break for her.  And I will love her and hug her and remind her of how much harder she works to achieve stuff than others and I will remind her of all her successes and accomplishments and I will remind her that all people are different and unique and that if we were all the same, and did all the same stuff, the world would be boring....the same things I remind my other girls, when they are feeling down or left out or not good at something.

 Because, when I step back at the end of the day, my girls are all going to go through emotionally rough patches and Aubrey is no different.  When I step back at the end of the day, she's just like her other sisters in so many MORE ways than she is different.  Sure, her experiences and feelings will look different, but she will still feel the same challenges and heart aches that all kids do.

 It's going to be hard.

No doubt about that, but the good news is that I'm practicing on her 3 older sisters, so by the time a boy breaks her heart.....I'll be ready for that conversation!

Day 5 - Words

This has been a post that has been on my mind for a long time.  Writing things that might offend people or hurt their feelings is not something that is easy to do….but it is important to write about them because when people say them to US or about our AUBREY, they are offensive and hurtful.  And so often it is done without thinking.  I know I have said things that are hurtful, and now…..I try to do better and think about what I’m about to say before I do.  And I hope that people call me out when I do.

Babies are born all around me, all the time.  I love to hear about pregnancies and genders and births.  There is nothing so sweet as a new soulJ  I’ve done it 5x and there is just nothing else like it here on earth.

This is my little bundle of Aubrey that was born full term at 4lbs 13oz.  She had an AV Canal heart defect and Down syndrome…..and we loved her. 

I hear people say so often, “We don’t care if it’s a boy or a girl, just so long as it’s healthy.”  I’m fairly certain that I said that phrase for almost 4 full pregnancies too, but now I know.  But here’s the thing:  you don’t really mean that.  Sure, you don’t care, boy or girl.  But I’m fairly certain, that healthy or unhealthy, you will love that little one, no matter what.  Right? 

We didn’t love Aubrey any less because she was another girl or because she wasn’t born healthy.  We probably loved her more than our other newborns, who were born healthy, because she needed that extra love to grow and live, while she waited for heart surgery.

My point is, you don’t care about the gender…..and leave it at that.  What you mean to say is, “We don’t care if it is a boy or girl.  We just can’t wait to meet OUR baby.”  Right?  And there is nothing wrong with PRAYING for a healthy baby, but I'm pretty sure, you'll love that little soul, no matter what.  I prayed that Emelia (my 5th baby) would be healthy, because no one wants their newborn to struggle for health, but I was prepared to do it all over again.

I’ve never corrected anyone that I hear say this.  Maybe I should.  I know people say it without thinking or because they haven’t experienced what we have or know someone who has.  But it still makes my heart ache a little when I hear it.  And I think of the friends who are so desperately WAITING to be mothers and haven’t been blessed….because they don’t care boy or girl, healthy or unhealthy.  They just want a baby to call their own.

So next time you find yourself BLESSED with a new life, just take a minute to think about all the love that you will pour into that new life, boy or girl, healthy or unhealthy and be sensitive to your audience.  You just never know....

Day 4 - Kindergarten

I remember as a teacher feeling bad for the kids with September birthdays.  They missed that Kindergarten cut off date and had to wait a WHOLE year to go to school.  I have TWO September kids....and it has worked out wonderfully.  Ella really did need that extra year, and I'm sooooo glad that Aubrey had that extra year of preschool.  

I was very nervous about our ARD meeting last spring.  We are in a unique situation.  We live in one city, but are zoned for schools in another city, our HOME school.  But because Aubrey has a hearing impairment, she actually attends the Regional Day School for the Deaf, which is in a third city:)  Luckily, there has been a great unity between our home school and the deaf ed program that she has been in for three years of preschool and they have always maintained that it was in her best interest to be in that program.  We are blessed that we haven't had to fight for what we wanted for her.  They knew what was best for her and they provide it.

We were also blessed with the program that is set up.  She is NOT in a general education class all day.  I'm so glad for that.  I don't believe she would have thrived in a classroom full of 20 kids.  I think she would have struggled.  I think more adjustments would have had to be made.  I know that sometimes integration is what so many want for their kids, but I don't think that would be in her best interest.  Her hearing impairment is what is the blessing here, because it puts her into a different class.

In the mornings, she is with Ms. Hall and her 5 other deaf ed friends.  Yup, she is in a class that has only 6 children in the morning, and some of them also have other health impairments.  It is a Total Communication classroom just like she had in preschool.  So they sign and speak everything.  This allows her teacher to really teach her at the level that she is at in those morning subjects.  She integrates for recess in the morning with ALL the other kindergarten classes and then integrates into the general education class after lunch for center time, science, art, music and gym, with Mrs. Godfrey.  I feel like those areas of the day are great times for her to be with the general education kids and I think she is doing well at those times of the day.

She gets so much one on one in the morning and I think that has made all the difference in her success so far.  She is doing so well in school.  She loves going every morning.  She is excited about her homework and has shown very little frustration about school. 

I'm so excited to hear some bits and pieces from her day.  And when I say bit and pieces, it's just that.  Example:  Today, we had oranges for lunch and she signed, "Amy, orange".  Me:  Amy (classmate) had an orange yesterday/  Aubrey: "yes.  buy orange"  Me:  Amy buys her lunch?  And she got an orange yesterday?  Aubrey:  "yes!"  Whether that is true, I have no idea, but at least she told me something about her day at school.

We feel blessed with the school and program that she is in, but rest assured, if it wasn't, we would fight for what we wanted and needed for sure.  There are still things we are working through with the school and I'll share that later this month.

I want to encourage you to really search out and look at all the options for your children and don't compromise.  Surround you and your child with people and teachers and therapists that love your child and will help you fight for your child's best interests.  They answer endless questions from us and they always help us get to where we need to be for Aubrey.  

Day 3 - The Future

Most of the time, Aubrey fits into a different category than you would think.  When she was born, I thought we would be a big part of the Down syndrome community, but we actually fit into so many categories and spread ourselves into all the categories that are important to Aubrey and all our kids.  I think in so many ways, whether we knew it or not, by spreading ourselves out, we make the statement that Down syndrome does not define Aubrey.  

Aubrey the Gymnast (not a strong contender unless Dad goes to work with her every day)

I always think of her as MY Aubrey first and then add in that she is hearing impaired.  I don't know that one disability is greater than the other or more important than the other.  I guess I figure the Down syndrome part is obvious, and the hearing impairment is not.

Aubrey the Grocer

It's sort of a double whammy or double blessing to have both....depending on how you look at it.  Both children with Down syndrome and those with hearing impairments are learning delayed in most, if not all, areas.  So Aubrey got a double whammy of learning delays.  I'll talk more about these later in the month.

Aubrey the Cheerleader - in life, for sure!

But both have provided blessings as well.  We find ourselves in the wonderful place of fitting into TWO special groups.  We are in the special needs community AND the hearing impaired community.  Both have provided us with friends that we otherwise would never have met and both have provided us with unique and different views on life with kids.

To be honest, I feel much more a part of the hearing impaired/deaf community, because that has been her placement in school and we have had to learn sign language to communicate....but it is also a challenging place to be too.  I am learning at the speed of MY daughter, 6, and holding a conversation with an adult in sign language (or even typical kids that are fluent in signing) is both intimidating and hard.  But I'm so thankful that I do and that I can and I know that they understand:)

Aubrey the Ballerina (this is not a strong contender since she doesn't actually
ever stay in the classroom for the entire class....or most of it either:)

I don't know what Aubrey will be able to do when she grows up,or whether she will find her place more in a "typical" community, or deaf community or special needs community but I know she will be successful  and I hope that she never "lets her disabilities crush her dreams". - Tim from Tim's Place

I'm encouraged by the changes that are happening ahead of her and the successes of "Tim's Place" and "Signs".  If you are ever near one of these restaurants....stop in and think of Aubrey.

Tim's Place

SIGNS

Down syndrome Awareness Month - Day 2 Relationships

I remember worrying at the beginning about how Aubrey would form relationships with people.  What would her friendships look like?  Would it be hard for her to make friends with "typical" kids.  Would we have to "help" her make friends and bribe kids to be her friend?

Aubrey and Noah 2 1/2 years

Here is what I have learned in 6 years:

Relationships are hard for everybody at different points in life.  Sometimes friendships are easy and sometimes they take work and we aren't always gonna get along with everybody.

Aubrey and Woody 2 years

Love and family come so easy for this little girl!  She is a joyful blessing to us.  The daughter/sister relationship that we have with her are as strong and true as they are with all our daughters and with her sisters.  

Alice and Aubrey 3 1/2 years

 Her relationships will probably  take a little more understanding as she grows up, but they are really sweet right now.

Megan, Emelia and Aubrey 3 1/2 years

She has friends from all walks of life.  Old and young.  Hearing and deaf.  Typical and Special Needs.  Her love and friendship is so genuine and pure and a real teaching lesson for the rest of us.  There is no discrimination in her eyes.  

Hollanders and Smiths - Aubrey 5 years

 What I love about the kids in her life, is that they don't discriminate against her either.  She's just Aubrey to them and they don't SEE her disabilities or difference.  They just see a friend.  And that melts my heart more than anything else.  Seeing her with friends....doing what friends do.

Aubrey at preschool 3 years

She probably has the most diverse group of friends, that I couldn't have imagined and it never gets old hearing and seeing her friends.  

Noah and Aubrey 4 years

 She gets invited to birthday parties and tea parties and play dates.....just like other kids.  It sometimes means I have to help translate, but for the most part, her friendships are hers and they don't require translation.  Love speaks all languages and see no differences.

I worried about her transition to Kindergarten. I worried about her having friends and being part of a big class.  I need to learn to stop worrying.  While standing in line for pick up a couple weeks ago, I met another mom who has a boy in her class.  When our kids came out, they smiled at each other and the other mom asked her son if he knew Aubrey and he said, "yeah, we play on the playground all the time!"  And the teacher confirmed that they are peas in a pod and they do fist bumps at their lockers in the morning and they talk and joke all afternoon!  And  my heart melted right there....my girl's got a real friend in school without any prearranged play dates or pairings.  Truth is, she has lots of friends without me trying to get her together with kids and it is just so sweet to see her blossoming and playing with other kids.

Noah and Aubrey 4 years

And this guy, Noah, he's a real favorite!  

His mom and I were due with them on the same day - though they were actually born 3 weeks apart.

Their friendships has been sweet from the very beginning....and I can't wait to see it grow.

I know that it won't always be easy and she's gonna grow and she will get her feelings hurt, but right now, we are living in the moment and enjoying all the friendships that she has made and enjoys and checking one less thing off the worry list.  Friendships are easy!

Down syndrome Awareness Month - 1

It's October again, and I'm blogging to raise awareness for Down syndrome.  This year, I'm gonna share a lot of feelings and about some of the challenges and triumphs that we've had on the journey with Aubrey.  It has been a year of GROWTH for me as her mom, but especially for this beautiful girl.

I would guess that you already realize that life with 5 kids keeps me super busy....since there have been ZERO posts in 11 months!  But it is more than that.  Life with Aubrey is busy.  I think that for the longest time, admitting that Aubrey's life added "work" and "challenges" and "hardness" to my life, meant that I was telling people that Down syndrome is a lot of work or that I was admitting failure as a mom.  I'm admitting that having a child with Down syndrome is first of all, so AMAZING, but I'm admitting that her life is a lot of work.  But hard work reaps great benefits and I would do anything for this girl, so that she can be the best at whatever she does.

I have had to work through mentally, what is hard and it isn't the Down syndrome.  It is everything all at once, that gets overwhelming sometimes.  Lots of kids out there have learning disabilities and physical disabilities and heart defects and hearing impairments and lung disease and everything else.  Aubrey just happens to have all of that and when appointments and challenges collide and pile up on us....then it does get challenging and hard and it is a lot of work to keep it all organized and under control.  And it gets overwhelming.  But that isn't Down syndrome, that is just life with children, and the love for them to do more and anything for them.

I find my heart going out to parents who have children with these challenges, that aren't so "visible" to the outside world.  The world can be so cruel.  I feel like when people see Aubrey and they know she has Down syndrome, they exhibit such patience and kindness.  I KNOW that isn't always the case for kids with learning disabilities, when you don't visibly SEE the disability.  We have been blessed to be surrounded by kindness and love.

I feel BLESSED to be her mom, so much more often than I feel down about the "stuff".  I'm blessed to be the mom of ALL 5 of these beautiful girls, with all of their challenges and triumphs.  But this month especially, I'm sharing how blessed I am to be Aubrey's mom and that she is so compliant and go with the flow.  She takes it all in stride.  Nothing bothers her much (except the dentist) and she smiles through it all.  So yes, she comes with a very long list of doctors/specialist and instructions, but in the end, this smile and her love and excitement for life wash all of that away.  She is my Aubrey and I love that girl so much!  We are all better for having her in our lives.

Halloween 2013

**I had a few people ask for the yearly Halloween post, especially since not everyone is on Facebook and because I didn't post our fun lunches!  I get a lot of guilt sad emails from family and friends:)

Breakfast was "Ghost Pancakes".  Ghosts say "Ooooooooooooooooo!"  For the record, Aubrey only at the top half of each ghost, which contained the three chocolate chips.

We also had "Candy Corn Fruit Parfaits".  Bottom layer of pineapple, then peaches, then homemade whip cream.  Big hit with all!

 Lunch:  Witch Fingers (cheese sticks with green pepper fingernails)
Mummies (hot dogs wrapped in dough with mustard eyes)
Pumpkins (mandarin oranges.....I just used a sharpie to draw a face)

Kids also got snack mix: Ghost Poop (marshmallows), Witch Warts (chocolate covered raisins) and Monster Scabs (Chex Cereal).

Dinner was boring....we had chili.  Good, healthy and filling before we went out trick or treating.

Theme:  Despicable Me

 Gru is the main character who adopts three girls, Margo, Agnes and Edith

Our Version:  Edith (Kate), Margo (Ella), Gru (Woody), Agnes (Emelia)

A Minion (Aubrey), Edith (Kate), Margo (Ella), Gru (Woody), Agnes (Emelia) and
Dr. Nafario

Dr. Nafario and the Minions

Gru and Vector battling it out!

In the movie the little girls deliver cookies to Vector in a wagon (the minion was extra here:) and Agnes asks him why he is wearing pajamas.  Pretty funny!

In the movie Agnes likes Unicorns.  Our Agnes preffered pushing pumpkins around.

 Our little trick or treater was AWESOME!  She understood the dressing up thing and the getting treats thing!  Walked a good three blocks and did it all herself.  She signed and spoke "Trick or Treat" at each house.  Same for Thank You and Your Welcome!   So proud of her!