Friday, October 3, 2014

Happy Down Syndrome Awareness Month!

Fact #3 - based on my own experiences

So, why is this important? Why do we need a Down Syndrome Awareness Month? Don’t we all need to raise awareness for something? "Yes!"

This month is an important month. Many groups raise awareness during October. I think it is fitting. The weather in most places is cooling off. We see a change in the environment and that is what we need for our groups. Change. It may be we need funding or we need acceptance or we need new laws. Each one of our groups needs something and we all need to listen.  It’s important. We are a community. A huge community.  Clearly we can’t all monetarily fund each and every group that needs help, but raising awareness does not cost a penny. Talk to a friend about someone you know that has the syndrome, the condition, the disease. Whatever it is you can make a difference.

For our family it is Down syndrome. There is a big reason why it is important to raise awareness for Down syndrome.  It means education, it means jobs, it means inclusion – it means life.  But, for today I just want to point out that this month is such an important month.  Read the posts you see on social media, share the knowledge, attend a walk, smile at these people – or just make it easy - show kindness to everyone. That is a wonderful place to start.  Everyone you see is going through some sort of battle – some big, some small, some healing, some wounded. It isn’t for you to know what it is or to even define it. It most certainly isn’t for you to judge it.  It is for you to accept your fellow mankind and to treat them as you’d like to be treated. 


Raise awareness for Down Syndrome, Rett Syndrome, Autism, Cerebral Palsy, Dwarfism, Breast Cancer, Ovarian Cancer.… I could keep typing. The list goes on and on of things that need our attention. As one person you can’t solve all the issues, but you can keep the conversations going that may lead to a cure, funding, awareness, or maybe something like a job offer for someone that once upon a time - not too long ago would never have been able to work to support themselves. 

Pick a cause or two or three.  Do some research, ask some questions.  Volunteer.  Raise Awareness. Be A Friend.



More Alike Than Different

Happy Down Syndrome Awareness Month!

Fact #2 - based on my own experiences


More Alike Than Different – that is what Down syndrome means to me.  For example today I wanted to get Allie to say her ABCs for me at dinner.  She knows them well, so this was just supposed to be something fun to do. But, like her typical peers, she doesn’t always want to do what a parent thinks is fun. So, she says “no”. I tease her.. “oh, you don’t know your alphabet? How sad”. Her response was delivered with so much sweetness and concern you’d think the Alphabet was a real person.   “Awww...poor Alphabet… so sad”.

She has a funny sense of humor; a silly sense of humor. She is so unique it amazes me and she is so typical it amazes me as well. In fact, when I have to leave her with new people now I find myself telling them she is a “very typical 6 year old”. She is. She loves to read and play and will watch TV until I have to force her away from it. She wants the music on and she wants it loud. She wants to sing along. She wants to hear it again.  She wants to do it her way and will find a way to get you to agree.  She loves anything and everything Disney – except the Disney movies I suggest. See a pattern? Independent, free spirit, fun-filled little girl.


Oh… and I can’t leave out compassionate. She cares so much for other people it really does make you stop and wonder just what is in that extra chromosome. She teaches others how to love and ease up on life with a single hug or sometimes a wave.  She is first to hear a crying baby from anywhere in the vicinity and will look at me with all the seriousness she possess and lets me know that she needs to go take care of it.  She has literally almost pulled babies out of their Mother’s arms – with a gentleness and confidence that makes us all wonder how she learned these behaviors.

She is a true gentle spirit with an independence she is learning to control - with the help of all those adults around her who I’m sure pray daily for patience like I do.

Yes, we have our hands full, but our hearts are even fuller.  Down syndrome – I must have done something right to be rewarded so greatly.



October is Down Syndrome Awareness Month!

Happy National Down Syndrome Awareness Month!
10/1/2014


I want to congratulate the state of Alabama and Governor Bentley on the decision to declare October 1st officially as Down Syndrome Day in Alabama. It is an honor to be a resident of a state that recognizes the importance of promoting awareness for those with Down syndrome. This, of course, leads to acceptance and is an excellent way to advocate for them.

Fact #1 - based on my own experiences
Having a child with Down syndrome will mean that your heart will immediately grow at least 100x its initial size and you will find yourself documenting every amazing moment as your child amazes, blesses, entertains and teaches you new things each and every day. You will go to bed exhausted but filled with love and more thankful than you could have imagined.

I know I am blessed...





Tuesday, November 19, 2013

Happy 6th Birthday, Allie!

Allie on Hat Day, October 11th
It seems like only days ago we were about to celebrate Allie's 5th birthday with her and all of a sudden we are at the 6th birthday.  She is feeling a bit under the weather lately and yesterday had to go to the doctor to get her thumb "stuck".   She seems to have one of those dreaded "fever viruses", but we are thankful it isn't anything worse.  She was rather rambunctious yesterday, so I ended up rather tired and I seem to have taught her the lesson of sharing quite well. I'm not sure if it was the sneezes in my face or the coughs or just all the together-time, but I went to sleep feeling a bit worn out and woke up wondering how a truck hit me in the middle of the night. I can't imagine how bad she has felt!

We are all surprised at how quickly the last 6 years have gone.  I guess every parent says that and I should just accept that time is going to fly past, but I can't do that. I seem to know it is going to happen and so I take pictures... lots of them.  I think I used up an external drive just with the pictures from the NICU!  I know someday she will be out on dates and at her friends' houses and I'll be up worrying, so I figure I will do something creative with all of my pictures at that time.  But, in honor of her 6th birthday, I put together this collage of memories.  We have always referred to Allie as our "Amazing Allie" because - well, she has been and continues to be amazing. 

Before she was born we had so many ultrasounds we have a whole photo album of her development. There were so many scary findings during those ultrasounds and we were lucky that God led us through them with positivism and courage.  We set the record straight after the first in depth ultrasound that despite the list of a dozen things "concerning", we weren't concerned. We believed she was just too small to really see all that they needed to see. We introduced her as Allie and everyone continued to be amazed as something fell off that dreaded list each visit. 

She is still growing - at 6 years old she has now reached the 29.4 pounds. I swear she was at 30 not too long ago, but I suppose fluctuation is okay.  She is about 37 inches tall, but I haven't measured her in a little while, so that could have changed, too. She is chattering non-stop - even more today being under the weather. I think she has a determined soul. She isn't feeling herself, so she goes the extra mile to tell us every story under the sun. Some we understood.  She is a very fun little girl. She is sweet and a good friend.  I found out the other day she is a good shopper, too. I didn't even realize she was paying attention since she was watching herself in a mirror. I tried on a pair of boots and she immediately looked at me in them and said "ooh, those look good".  She keeps me laughing all the time. And not, just a little smile here and there.. often belly laughs. I can't help it. She cracks me up. 

Tomorrow we will sing "happy birthday to Allie" probably more times than I'll be able to count. It is her favorite song especially when it has her name in it.  And we will say goodbye to our little 5 year old. The age I was particularly worried about. We changed schools during that year and she began "real" school. Kindergarten. I was worried. Now, I have no idea why. She is fitting in wonderfully and has some wonderful friends that look out for her, but give her space and time to do it on her own.  She has become rather independent and I hear "I do it" more than I thought was possible. Oh, and she has become quite managerial, too.  For example, today at the doctor's office, the Nurse asked Allie to step on the scale.  Allie looked at her and pointed to the chair and told her to "sit down". I've never seen someone move so quickly to sit down before. I looked at the nurse and said "it works on  you, too, huh?" She commented, "she was so authoritative I had to do it."  I see leadership qualities in our girl.

video
Here is the compilation of the last 6 years. She is amazing and since you are following this blog, I guess you know it, too.  Thanks for loving our little 6 year old angel.

Tuesday, November 5, 2013

Introducing Allie's New Buddy - Benny

Allie, Benny and friends..
The volunteers are so wonderful at Special Equestrians!
You met PJ and now it is time to meet Benny. Isn't he adorable??  They did some shifting around in her Special Equestrian class and moved Allie to this sweet Shetland Pony, Benny. Allie loved PJ, so we weren't sure how that would go, but it went wonderfully. She won't even consider getting on PJ right now. Benny is just her size and she seems comfortable and happy with her new friend. I'm so thankful for Benny's owners to let us enjoy him during our classes.  In fact, Allie is in for a change, we only have one class left before we take a break all the way until March!!!  

Can you see the confidence?
Horseback riding has been great for Allie. She has learned so much and gets on quickly and confidently these days.  The last few classes she has been the first one on her horse. She is learning to hold the reins more and even started practicing standing up while riding.  Her favorite thing is when Benny goes fast.  In fact, when they tell Allie to tell Benny to "walk on", she gives that special Allie smile and says "Run Fast". She is participating wonderfully and really enjoys the session.  Of course, she equally enjoys our routine of going for ice cream after class. It is funny, I can't even think about skipping the ice cream because as soon as her feet hit the ground she is telling everyone "ice cream". This is all because the very first time we went, I suggested ice cream. She equally remembers the one time they
 offered her Cheetos after the ride.  I wasn't there that day, but I found out quickly where the Cheetos were hidden. After riding, she walked right to the cabinet and started opening it and saying Cheetos.  Can't blame her - she loves a tasty snack and this kiddo has an awesome memory and loves a good routine. 


She spotted her Daddy
Hi, Daddy!
Adorable, Amazing, Awesome Allie

.

Allie fits in beautifully down on the farm





Sunday, September 15, 2013

Allie and a Horse Named P.J.

PJ
Allie and Daddy meeting PJ March 2013
This entry really started back last March when we got the phone call that Allie's name was at the top of the waiting list for Special Equestrians.  We had been on the list for about 4 years. I had expected a call last fall, but knew it was just a matter of time. Plus, with her being so tiny and so spunky, I knew that the call would come when God knew Allie was ready and when Tim and I could handle it.  So, I didn't rush it. Plus, there was the scary idea of having to have a neck x-ray done before she could ride. 


March 2013 -Slight sign
of nervousness
I'm probably jumping ahead of you right now, so let me back up.  Special Equestrians is a horseback riding theraputic program for people of different abilities.  Their website has a great video that can explain and show you much better than I can so feel free to jump over and see what it is all about. http://www.specialequest.org/  So, as you can see from the video - getting Allie into a program like this was really a no-brainer.  We just had to wait until a spot came open and pray that she would be ready at the same time. 


Nope. Not going to ride.
We also had to have her neck x-ray done.  This is because it is estimated that up to 15 % of individuals with Down syndrome have a misalignment of the cervical vertebrae C-1 and in the neck. This is called Atlantoaxial Instability. This can potentially cause injury if they participate in activities that hyperextend or radically flex the neck or the upper spine. So, for participation in activities like Horse Back Riding and Gymnastics, Soccer, etc, we had to have her neck x-rayed. We did this quick procedure last December - and I still am so proud of her! It was our first x-ray that she stood like a pro and even said "cheese" for the picture.  We were done before I knew it and I was so proud of her! (Earlier x-rays involved several people holding her down, lots of tears on all of our parts and exhaustion). 

I'll walk PJ
Great news came back days later that she did not have this condition and we are free to go forward with these type of activities. (Although, the mention of "gymnastics" still can cause her Daddy to get very worried).
So, in March, we went for our evaluation. Allie could not be encouraged to get on the sweet horse we met named, PJ.  She did enjoy brushing him, however, but sitting on him was out of the question. 


"Allie, this isn't how we ride a horse"
We had some scheduling issues arise, so we couldn't come back until the summer session began. Summer was a 4 week session. The first week it was like starting all over again. We enjoyed talking to PJ, but Allie refused to put on the helmet so we couldn't do much more that day. We went home and spent a week practicing with the helmet... we all wore it... we all talked about it and at our next visit to see PJ... Allie wore her helmet!! 

She came back from the trail
ride facing the right way!
As soon as we got there, I showed her how everyone has to wear a helmet or they can't ride the horses and she put her helmet on right away!  That visit she enjoyed brushing PJ and talking to PJ, but was ademently refusing to sit on PJ.  Week 3 we came back and she wore the helmet, brushed PJ and refused again to sit on poor PJ.  Her amazing teacher, Melinda, got on PJ and put Allie on her lap - however, Allie wanted to face Melinda and so, off they rode.  I swear we heard Allie crying the whole way, but we were thrilled when we saw them coming back and Allie was facing the right way and not crying at all!  


Kayley and Allie
The last week of the session neither Tim nor I could be there, but our friends, Sherry and Kayley took Allie to her class and I was thrilled when I got the phone call that "Allie was riding PJ!"  She did such a great job and they took so many wonderful pictures and videos of her riding a horse all by herself! 

Last week we began the fall session.  Again, I had a conflict and couldn't attend.  Tim was able to be there for only part of it, so Sherry and Kayley came to the rescue again. I was thrilled to hear that Allie got right on again!  Tim was a little concerned as he saw her waiting and was worried that they had her wait too long, but when it was her turn, she told Melinda "no" and proceeded to be allowed to be put on PJ. She had a great time as you can tell from these wonderful pictures.  Melinda was so proud of her!
Today was her second lesson of the season and I finally got to see Allie ride PJ all by herself!  At first, I worried, too.. she was waiting so patiently and I was afraid she wouldn't ride.


"Hi, Mom!"
Then, I saw her refusing. I saw her hugging Melinda in a clingy type of way. I worried if I'd ever be able to take her anywhere and she still be the girl determined to do things.  Sometimes when "Mommy" is around, I see behavior no one else sees. I worried I'd have to sneak in to these type of events for the rest of her childhood. 

But, she started the lesson by walking PJ into the ring and following instructions and next I knew she was on the horse doing a fantastic job! I found out later she wanted to ride the whole time, but it seems it may be a game now to make everyone wait.  Allie seems to like to be in charge and when she was a ready, then she said okay. 
Looking for Mom




Either way, she was riding the horse again and participating and learning and growing!! She had such a great time. She didn't want to get off the horse at all.



In Class
On a side note, after watching that video on their website, I must admit that her Kindergarten teacher/Aide (Mrs. Harper) asked me if something happened recently because this past Monday Allie seemed like a different girl. They all noticed it.  Coloring has not been something she has ever enjoyed. She has tolerated it when she had to - in pre-school it was for about 10 seconds.  At home - even less I think. 



Whoa, PJ.
But, at Kindergarten, she has to do it.  It is part of school. Every morning, they start their day off with coloring.  So, she would fein sickness (cough, cough, cough), she would literally hold her hand as if not a single muscle in her hand worked. The poor girl acted like she could barely hold a crayon. Then, when forced to color, she would scribble but her head and eyes would look everywhere but at the paper or crayon. (We have a bit of a drama queen).

Confidence shining through
Still, every colored item she brought home got a ton of praise and hung up in the kitchen, we talked, we praised we complimented.  I'm not sure what made Monday different.  Perhaps she realized Mrs. Harper was not going to give in and let her get away without coloring, or perhaps she realized she loves the praise (okay, she knows she loves the attention) or perhaps PJ taught her something that we will never understand. But, she sat at her desk on Monday morning and colored.  She has even started asking to color at home, she is coloring much better and staying attentive.


Mommy watches Allie go on the trail ride.
Today, we went to visit her Grandmother and I noticed there was significantly less running out of the room, acting silly, etc.  She has either hit a new milestone and gotten more mature quickly or more likely - a combination of all things.  She is learning so much in Kindergarten, she has discovered coloring is a lot of fun and she has learned to be a bit calmer when doing things... just like PJ. 



I'm so proud of Allie - and so is everyone else. I hope she will want to continue to ride horses for a very long time!

Melinda is signing to Allie how Proud she is of her!
I love her teacher!!










Tuesday, August 27, 2013

Kindergarten Pro

We are now into our second week of Kindergarten.  But, I know you are most curious about the very FIRST day and how it all went... so let's go back...

Last Monday, August 19, 2013, Allie started her primary education with the brand new Alabaster City school system.  It is exciting for our growing town to have their own School System and exciting for us to have Allie in the very first Kindergarten class.  I will admit... I was a bit worried how the first day would go.  Allie is used to being in school and used to being away from us all day, so I didn't expect tears, but there was always that chance from any one of us.

The night before, we had everything all ready, bedtime went smooth and the kiddo was tucked into bed about 40 minutes early. She did that all on her own, she was tired and we started the routine, which can last 30 minutes sometimes, and boom. She was out!  All went well on that end, but I was a bit nervous and piddled until way past my bedtime. A decision I would regret just a couple hours later.  2am... Allie comes in... hi, Mom.... Oh, no... it's back to bed I tell her - following the normal process for when she does make her middle of the night appearance at my bedside.  She potties, we snuggle back in bed and I'm thinking... good.. this is all good... no problem... then I hear.. MOM.. Movie... and MOM... snack.... and MOMMY!  Game??  She is awake... there is no denying it.  She is denied all her activities, of course, and we spend the next 3 hours attempting to snuggle and doze. Never worked despite a grand effort.
 
















Clearly she was too excited.  I didn't know it at the time, though. I just thought it was another sleepless night.  Around 4:30 Mommy was so tired all the first day of school emotions came out. Visions of my now overly tired child not listening, knocking chairs over and pushing kids jumped into my head. Can they kick her out on her first day?  I feared... I turned my alarm off. There was no need in waiting for it to go off. We were awake and we might as well face the day. With a prayer they don't kick her out on Day 1!! 


We got ready and she seemed fine. I realized she was excited as we started to do the school pictures. She was all willing. She was ready. She was going to Kindergarten!!  Both Daddy and Mommy escorted the big girl to her class - with about half the other Mommies and Daddies.  We walked into the front door and she was ready to march to her room!  We headed to her classroom. Kids were sitting "criss-cross applesauce" in the hallway by their rooms waiting on the first instruction of the year. Allie... as if a princess in a parade, waved and said hello to several children. 

We found her classroom - the one furthest from the front door - and she let go of Daddy's hand and walked straight up to the teacher and introduced herself with a finger pointed at her chest and her proud one word. "Allie!"  Her sweet teacher, Mrs. Colburn, smiled and said, yes, I know you are Allie. It is so good to see you. Mrs. Colburn took over and we watched Allie take her place in the hallway as she waited with her new classmates. A few hugs later her Daddy and I retreated.

Yes, we hid. Of course!! We hid behind people and doors so we could watch. She was fine. Excited clearly, but fine. Our sweet little girl with the big bookbag and snack and lunchbag. She was ready.  We left before they kicked us out and we weren't the LAST people to leave either. :-)

It's a new world in Kindergarten; not only for the 5 year old, but for the parents. There is no tv monitor in the lobby for us to go to and punch in her room number and watch the silent class move around into their centers.  There was nothing to do but walk out the front door, pray, and let her begin her anticipated first day.  I sure wanted to be a fly on that classroom wall.

waiting for school to start
After school I picked her up at After School Care. This is held at the school in the gym and on the playground. I quickly found out she has an aid that follows her around the whole time. That is comforting, but by Day 2 Daddy picked her up and realized she already had this whole game figured out. She was ordering him around like he was a servant. She wanted to go to the swings.. "come here" she'd say. She wanted to go on the slide.. "come on..." she'd say. She has leadership skills for sure!  As we left, she told the ASC teacher that she wanted to go to the playground. The teacher told her that she could go every day!  That did it.. After School Care seems to be good for Allie.

school was fun!
She was very excited to see me and even allowed a few more pictures, which I love because I can see the genuinely happy smile. I was excited to open up her backpack and see what they had to tell us. We were happy to get a first day of school picture and we love our daily binder. But, but let's face it... there really isn't enough information ever to the parents that not only want to see the sheets she colored, but know which hand she used, did someone help her, did she stay in her seat, what snacks did she eat, did she "drop" any on the floor, did she make friends, etc. etc. etc.?  I want a monitor to watch her! 



I did learn a day or so later that yes, she did nap. Right away. No worries. For a kid that takes a long time to settle down and fall asleep I never thought a 20 minute nap would be helpful, but clearly on day one when you've been up since 2am... there was no debating.  She fell asleep the second she was told to.

At home, it was fun to ask her about her day. I gave her a choice of words.. was your day... wonderful? terrific? awesome? okay? great? fun? etc. etc. She chose the word GREAT and I believe it was great. We celebrated by stopping at the store for some ice cream - with sprinkles and a cup cake. I'd say they were both earned today!


What a day celebration! Ice cream
and cupcake!
I'm extremely proud of her. She was very independant and happy to go to school. I was proud of us. No tears were shed (well, except those 4:30am desperate for sleep and worry of having to find a new school tears). But, I can assure you a lot of prayers were said by these two parents. Leaving her was hard in a world as scary as our world is. Knowing she can't communicate as well as we'd like. But, it was also exciting. Allie is going places. We know that. She is smart and determined and able.  That's our girl!! Our Big Kindergartener!