Wednesday, October 31, 2012

Halloween Part 1

Too many photos from today to get through so here is what happened yesterday...because you know two days of Halloween is better than one!  Sweet Pea had a parade and party at preschool and Angel got a chance to go with Grandma to story time at our library.  Princesses were a last minute costume change as it had been so hot here so we raided our dress up box and found these.  The girls LOVED them!

Before school photo shoot

Class photo before parade:

The beginning of the parade...excited, but she has no idea what is coming:

Did she really put candy in my bag?

Mommy!  I got candy!!!!!

Constantly checking on her growing stash:

Enjoying the noodle bowl and tongs during the Halloween party.  I was impressed she could work the tongs...and she figured it out all on her own!

And we can't forget Angel!

Tuesday, October 30, 2012

Future Circus Star

Looks like Sweet Pea might have another vocation possibility in her future...

Flying on the trapeze:

Hanging on the trapeze:

Monday, October 29, 2012

Sweet Pea Riding a Tricycle

On Saturday morning we attended a block party before we went to a birthday party.  There was a tricycle that Sweet Pea climbed onto and before I knew it...she started pedaling it!  I couldn't believe it!  As you can see in the video she had to scoot far forward to reach the pedals, but she was able to do it.  And she did it all by herself!  She tried a few times and this first attempt was her best.  I need to speak with her PT at school and see if she has been working with Sweet Pea on the giant tricycles that they have a school.  It would seem like they might have been, but who knows...

Sunday, October 28, 2012

We Have a Rolling Machine

Sweet Pea discovered how to roll this week!  I don't know who taught her, but I'm guessing it was someone at school.  I love it and hope that she will start rolling down the grass hill at school with the other kids too.

Check out this video of Sweet Pea steamrolling Angel and of Angel showing a little bit of her actual jumps.  I love how at 1:12 she gets into steamroll position.  Her left leg does an odd buckling move that I just don't know how to describe, but it makes me crack up every time she does it!

Saturday, October 27, 2012

Fine Motor Skills

I'm not sure what I've shared about Sweet Pea's fine motor goals, but we have been working on a few things at home in addition to writing her name.  Writing her name is actually something that is a few steps ahead of where she is, but that's okay.  One of her IEP annual OT goals is to imitate up to 3 pre-writing strokes (vertical line, horizontal line, approximated single closed circle) and imitate intersecting lines.  She is making good progress towards that goal, but since practically right after we made that goal she stopped doing single closed circles and started doing circle after circle after circle.  Her outside school OT couldn't believe that she started doing that so consistently, but we all knew that we could get her back to single closed circles eventually.  It's still a work in progress, but I find that by using the phrase "start...stop" she does very well almost every time.  The video was supposed to show you the circles she was making, but the crayon color was a very poor choice so unless you REALLY squint and put your nose up to the computer probably can't see them.

But the video also shows her accomplishing her second IEP OT goal...Using adaptive strategies as needed (including but not limited to: adaptive scissors, varied materials to cut) Sweet Pea will use scissors with her right hand to snip material (paper, play-doh) held in her left with no more than minumal assistance (Sweet Pea does at least 75% of the task) in 4 out of 5 trials as measured by observation/data and staff report.  We purchased the Maped Koopy Spring Scissors, but we don't use the spring anymore.  I think if the scissors were just a little bit smaller she would have an easier time, but she is doing pretty good as is.  I am going to speak with her OT about increasing this goal as I believe that she might have met it.  There could be some piece that I'm missing, but she seems to be meeting the goal if you look at the video below.

This gives you an idea of why we work on some of these skills at home...she really enjoys it!  We don't push.  When she is done we let her be done.  Sometimes we have her finish what she is working on just to teach her to complete tasks, but if her mood isn't open to that we just let her be.  We don't want to risk losing her love of learning!

Friday, October 26, 2012


There was no school today so I decided to be brave and put the best interests of my girls ahead of my own sanity.  I took the girls to the aquarium!  To make it even more difficult I decided to forgo the stroller as we haven't used it much the last couple of trips.  I was meeting a really good friend who has joined us at the aquarium a number of times and I knew that if things got really bad she would help ensure that we got back to our car safely.

The day started off great...if you don't count Angel's meltdown in the parking lot because I wouldn't let her bring her blanket inside.

Excited to go into the aquarium:

I realized a few minutes after getting inside that I left my phone in the car.  Finding my friend might prove to be an issue, but it was early and I knew about what time she was coming so I decided to just deal with not having it and not make the trip back to the car with the girls.  We headed over to the first exhibits and all was going great. 

The girls are happy, talkative and engaged.  Just listen to Sweet Pea talk in this video...I love that she is doing more and more of this!  I think Angel's verbal prowess is helping spur Sweet Pea to do a bit more talking.

We move to a few other exhibits that are still in the main area because that is the easiest place to find people and it's about the time that my friend was supposed to join us.  Wouldn't you know that Sweet Pea decides that this is the time that she has to go potty!  (Side Note: Potty training has been a nightmare for us and just yesterday I called it off and put her back in a diaper.  I was fed up with what I thought might be a power struggle as I was clearly losing the battle and I was either going to lose my mind and temper or we were going to call it quits.  I told her that when she wants to go we will take her, but I'm not forcing her to go and she can go back into panties and pullups when she wants to, but for now she will be in a diaper.  Today she stayed a heck of a lot drier than she has the past few days and so maybe it really is a power struggle issue we are dealing with!)  We head off to the bathroom and she does actually go, but then her sister decides that she needs to go and just sits there.  After getting both girls redressed and hands washed I am just certain that my friend arrived and has no idea where we are.  I head back to the front entrance and ask if there is any way for them to tell me if another member has arrived and the lady asks if this is the person I'm looking for as she turns her computer towards me.  Sure enough...there was her membership photo.  Crud!  Off to try to find her and her youngest son "J"...

Of course, my girls decide that they are much more interested in the benches in the main walkway than finding them.  I know...shock of all shocks!  This was after all called the bench museum for a very long time for a reason! 

These aren't the benches, but these were photos I captured earlier of them enjoying some nicer chairs in one of the exhibits instead of caring about the fish.

As I try to get them to move a little bit closer to the exhibits I watch as huge group after huge group are walking through the entrance.  I'm not sure I will ever find her if this keeps up!

The fish really aren't the biggest attractions at the aquarium for my girls.  Between the benches, ropes, railings and the aquarium map's amazing they looked at any fish.

Luckily my friend had seen my car in the parking garage and knew we couldn't have gone too far.  Yep, she has been with us enough times to know we make very slow progress anywhere we go!  She had taken J through one area in hopes of finding us and then came back to the beginning when we hadn't been there.  I was elated to see them!  Turns out her phone had lost all its contacts so she didn't have my cell number after all either.  We were quite the prepared moms!  Oh well...

Once we were all together it was quite between the tantrums and whines and fits that my girls would alternate performing that is.  J would try to get my girls to move on to the next exhibit and that never went well.  They really like him, but don't want to be bossed around by anyone.

They enjoyed monkeying around together!  I missed the shot with all 3 pairs of feet off the ground, but I got 2!

Fun "submarine" section according to J.

The penguins swim right over you when you are in this area and today both my girls were good going in there.  I believe last time Sweet Pea wouldn't do it and before that Angel didn't want to.  You never know what either girl will do...

I attempted to get a cute photo of Sweet Pea with the penguins in the background, but she thought this was the appropriate face to make.  Maybe she was trying to create a beak with her lips like the penguins behind her?

Mommy help me!  The penguins are about to attack me!

And my failed attempt at a cute sibling photo.  It's IMPOSSIBLE to get a cute photo of both of these girls.  Doesn't mean I'll stop trying though!

By the end of almost 3 hours at the aquarium, the kids were done...I mean, stick a fork in them done!  But, we had done it!  We ate a quick bite and got back to the car in one piece.  It wasn't a smooth day, but it was a day that the girls deserved and I am so glad we did it.

On a side note...this friend is an amazing friend!  J and Sweet Pea were born just days apart and so there are times when it is hard to see how different they are, but she never makes a big deal out of it and is extremely supportive when it comes to Sweet Pea...and Angel for that matter.  We can laugh and cry about our tribulations and enjoy each others successes and that means the world to me.  She is one of only a handful of friends that were there for me during that first horrible year and has never made me feel uncomfortable for the feelings that I've had through these last 3 years.  She is 100% supportive and for that I am extremely thankful!  If only she lived closer we would see each other much more often I am sure!  Thank you friend for everything!

Thursday, October 25, 2012

Handwriting Without Tears

I've heard about Handwriting Without Tears (HWOT) since Sweet Pea was just a few months old and I was listening to the NDSC convention session mp3s.  It is...surprise...a handwriting program that was developed by an Occupational Therapist and is heralded by so many teachers and therapists that we have worked with.  Everything that I have heard makes sense, but I knew that I had a long time before I needed to worry about it.  I should have known that the day would come a lot sooner than I thought it would!  It's definitely here and I've been looking into HWOT for a few months now, but refuse to pay the money for the actual curriculum.  Sweet Pea is getting pieces of it at school and so I just don't think it is necessary to put out the money for the real versions of this stuff for at home.  However, there are some ways to utilize the HWOT techniques without all the equipment!  This blog has a great list of how to make DIY versions of many of their items.  She points readers over to this blog for the templates of the letters for build-a-letter formation.

So I went to a local craft store today and bought a pack of foam sheets and am having hubby print out the templates and I will get busy making my own set of HWOT tools.  The wood pieces from HWOT are about $30 and the letter template mats are another $20 so the ink and a few dollars for the foam is much more feasible for us!

I'm still looking for a little chalkboard as our local stores don't seem to carry them anymore, but I might just get chalkboard paint and make my own if it comes down to it.  I've thought about painting a door with that paint so I might go for it...eventually.

HWOT has an app available now, Wet/Dry/Try, which has promise, but I don't think Sweet Pea is ready for that yet.  For one thing writing on the ipad is very different than writing in real life.  You can't rest your hand on the screen and that is the natural position for writing!  A friend of mine cut the fingers out of a knit glove for her son so that he could use the app with his hand resting on the screen and I thought that was brilliant.  I do like that the app directs you to work on the easier letters first, but allows you to work on any letter if you so choose.  It certainly has potential, but not something that we need right away.

HWOT offers a few workbooks which I have heard good things about.  I will look into those some more when we get to that stage.  I think just working with the play-doh, matman and the wood (foam) shapes will be a great starting point for us.  You can checkout the workbooks on the HWOT website.

Another find was these videos on here for a list of all HWOT videos, but you do have to keep clicking to see more at the bottom of each screen.  There are 65 or so and they would take a long time to get through all of them, but the titles give good descriptions so you can pick and choose what is of interest to you.  There are some songs that go along with their curriculum and music is always helpful with Sweet Pea so I was interested in hearing them...but again...didn't want to buy them since I'm not sure we will use them enough to warrant the expense.  These videos have some of the songs so anytime we want to hear them we can play the video!  Simple as that!  Sweet Pea was really enjoying the one that I came across while she was around so I think these will be very well received.  I've highlighted some of the videos that I found to be the best:

This video talks about why HWOT teaches capital letters first.  I knew this already as my retired kindergarten teacher mom had shared this info with me.  It really is wonderful having her helping me so much!

This video is a song all about the end of the alphabet...V - Z and the diagonals that those letters are comprised of.  I never realized before that the end of the alphabet has all those diagonals!  

This video is for a song, "Frog Jump Letter" that teachers the easiest capital letters for children to learn.  This is the song that Sweet Pea really enjoyed so here it is:

This video is for the song, "Tap, Tap, Tap" and could be fun.  We will see.

This video shows how to build the letters using the wood pieces and the templates.

This video shows how Mat Man works and I think this is where we will actually be starting.  The song that goes with it will be fun to use as well.  The progression of taking Mat Man from the wood pieces to just regular drawings is a great idea!  I would LOVE if Sweet Pea would start to draw actual things instead of random scribbles and this might be a good way to encourage and teach that.  If I can unleash some creativity that would be phenomenal!

Here is a great video for showing how you can use play-doh to create letters.  I personally would make extra copies of the letters so that I had enough for her entire name as I don't think it would be as clear for her to understand that we were going to just use the same card twice (even the girl in the video wasn't keen on that idea).

This video cracks me up!  I think it is really smart to use this technique for teaching the child to hold the paper with the other hand...the "helping hand". 

A cute video and song for teaching proper pencil grip finger positions.

This is a cute video for showing how the wet/dry/try method is used.

I'm looking forward to trying some of this out.  I'll try to update you on our progress...but I'm not very good at that so time will tell if I actually do it.  :-)

Wednesday, October 24, 2012

Just Like You Movie

Over the past few days I have seen numerous posts on Facebook about a new movie that was premiered on Monday called "Just Like You".  It isn't available for online viewing yet, but I am hopeful it will be available soon and I will share it with you if/when it is.  In the mean time, enjoy this trailer:

From the official website:
JUST LIKE YOU – DOWN SYNDROME – explores the life, hopes, challenges and dreams of three kids living with Down syndrome. Elyssa, Rachel and Sam share personal stories to help viewers better understand their condition and why they wish to be treated just like you. Each of our stars has their own talents, characteristics, strengths and challenges. Down syndrome is just one part of who they are and this film identifies how to handle and accommodate differences while celebrating the many similarities our friends with Down syndrome have with their peers.

Kids are naturally curious and the special needs of peers with Down syndrome can raise a lot of questions. When questions are left unanswered it can lead to fear of the unknown, which may cause peers to lash out, ostracize or judge their classmates with Down syndrome. Just like You, is a 501(c)(3) nonprofit which makes films to answer kids’ questions about unique circumstances. This film was made in collaboration with the Down Syndrome Guild of Greater Kansas City with the hopes it will be utilized as a tool by parents and educators to open the door to inclusion, acceptance and friendships.

Our kids in the film speak on behalf of all people with Down syndrome. Elyssa, Rachel and Sam look straight into the camera and into the eyes of their audience to tell them exactly what it feels like to be a kid with Down syndrome and what you can do to support them and be a friend.

Medical and health concerns, communication difficulties, learning needs and friendships are explained with straightforward candor and humor. The stars of the film breakdown myths and stereotypes, educate kids about the unknown, illuminate the human ties they have to each other and allow them to look past labels and accept people for who they are on the inside.

The film’s primary goal is to open hearts and change perspectives because, “when you have the knowledge you understand, and when you understand you can accept that kids with Down syndrome just want to be treated like any other kid, just like you.”

Tuesday, October 23, 2012

More Borrowed Blogs

Wow!  I was completely at a loss at what to write tonight and so I was doing a little blog surfing and I came across a couple amazing posts that I want to share.

The first one is from The Chronicles of Ellie Bellie Bear and is about all the feelings that I had when we received the diagnosis and the months that followed.  I love what she says "I do not regret having Ellie.  What I do regret, is not celebrating her the way I should have after she was born.  I want a do-over of the first few months of her life." "Celebrate your little boy or little girl, but do not feel obligated to celebrate Down syndrome."  I certainly didn't celebrate DS in that first year (and I'm not sure I do very much to this day) and her first birthday party was a celebration that I really did...finally...celebrate Sweet Pea for who she was.  I wish I would have accepted her from the start, but I had to celebrate that I had finally made it to acceptance and that I was looking forward to my life with her.

The other is a post on Our Cora Bean about how obvious the characteristics of Down syndrome are on people and how that causes judgements to be made and what we can do to help shift those judgements.  I full heartily agree that getting our kids out into the community is the best way to raise awareness.  Sweet Pea already participates in a few community activities and I will continue to include her as she gets older.  Being in a full inclusion preschool is also an amazing way of showing what our children are capable of.  I look forward to Sweet Pea showing her peers and their parents all that she can do and how she is more alike than different...regardless of her diagnosis.

I hope you enjoy these posts.  Let me know if there something you would like me to write on as I'm seriously lacking ideas currently and we have another 8 days to go still!  Help!!!!

Monday, October 22, 2012

Pumpkin Patch and a Confession

Warning: Extreme photo overload...probably my way of compensating for my will understand if you stick with this post for awhile.

Sweet Pea's preschool visited a pumpkin patch last week.

This is Sweet Pea's general education teacher (I'm loving Angel's scowl):

And this is the moment that Sweet Pea became infatuated with hay:

It's a pretty pathetic pumpkin patch in the parking lot of mall...but that is what we get when we live in the city.  It's big enough for the kids to enjoy.  They had a bounce house where the kids could be in for a whole 5 minutes.  That was the first time my kids were ever given a time limit in a bounce house and I wasn't sure how either was going to handle getting out when the 5 minutes was up.  They play in them for hours at parties!  I gave them lots of warning as the time counted down and the three boys from her school that were in the bounce house set a great example by getting out without any complaints and so I was thrilled when my girls slowly...very slowly...followed suit.

Big air!

More alike than different...check out what both girls are doing in these next different times:

Reminding herself to be careful (she always signs "careful" as she says it):

Again...more alike...look at their positions...

Proof that there weren't any tears upon exiting the bounce house:

With our admittance fee we received feed for the animals.  This didn't go well last year so I expected that feeding the goats was going to be a challenge again.  I enlisted the help of Sweet Pea's inclusion specialist...Sweet Pea ADORES her and I think it is a two way street!

She is sitting very comfortable with her at this point, but that changes...

Hanging on for dear life as the goats approach them:

Angel thinking about feeding the goats:

And she actually fed them!  Only once, but she let them eat out of her hand:

And then there was Sweet Pea...she held onto the food and started to approach the goats...

And then she dropped it and backed up...

The amazing thing is that she actually looks kind of happy here...please don't be screams, but not happiness either:

When we gave up on feeding the goats we moved onto the line for the pony rides.  We stood in this line for probably 10-15 minutes and so to kill time I tried to get a cute photo of them.  Fail again!  This time it was Angel who wanted nothing to do with it as the feeling of the hay on her bare legs was anything but enjoyable for her.  Yes...she is a drama queen!

At least Sweet Pea was accepting of having her photo taken.  I think she was happy that she was off the ground and away from any animals.

Photo shoot over mom!

Even though Angel hadn't wanted to feed the goats, I didn't think anything of it.  She was just being Angel.  Sweet Pea had done what I expected as well up to this point...all was fine in my head.  And that is where the fun ended for this least for me... 

When we finally got to the front of the line I walked Sweet Pea up to the pony and she FREAKED out!  She screamed bloody murder and climbed me like I was a coconut tree and she was desperate for some coconuts!  I couldn't get her to even look at the pony.  The lady that was working it was ZERO help as she basically pushed us out and never looked at us again.  I was standing outside the gate trying to talk to Sweet Pea about riding the ponies and wanted to try to put Angel on one, but the lady never gave us another shot.  I was so annoyed that she wouldn't try to work with a child at all.  Yes, the place was fairly busy, but if you cater to kids and to preschools shouldn't you at least give the children a chance?  She wasn't willing to have our inclusion specialist walk next to the pony with Sweet Pea or anything to help our attempts.

I am still annoyed by this situation and I think the workers reaction was one thing, but the fact that EVERY other kid had no issues really got to me.  I don't like to have Sweet Pea stand out in negative ways and this was a big one.  I want her to show the world that having Down syndrome doesn't make her that much different.  I know that many typical kids have issues with riding ponies, but none did while we were there waiting in line or while we were watching after.  I automatically go to the DS when I try to find the cause of some negative action even though I know that it isn't always the root cause.  Sometimes it is just typical behavior, but I tend to try to fault DS, because there is no way that a child of mine could EVER act out if she didn't have DS.  (Ha!  Ha!  Ha!  I could die laughing at that thought!)  Anyway, I just think that when people see Sweet Pea misbehaving, they automatically go to DS as the reasoning and it bothers me greatly.  I wish it didn't, but it does!  I don't want Sweet Pea to stand out for any reason other than being her amazing self.  She shines in so many ways and draws people to her in so many situations that it pains me when she isn't doing that.  I guess I'm spoiled by the good side of Sweet Pea?  I don't know.  I hope one day I won't cringe in horror when she has an episode, but I probably will.  I don't cringe in horror when Angel has one of her typical meltdowns because she is just who she is...a tiny tyrant.  But with Sweet Pea it's different.  It absolutely shouldn't be, but it is.

Looking at these pictures makes me realize that Sweet Pea had a great time at the pumpkin patch...why couldn't I?  I felt horrible as it happened and now I feel even worse realizing that she did have a great time even if she didn't want to do everything that I had on the agenda.  She played there for almost 2 hours!  Most of the other kids had already left by the time we were leaving and both girls would have been content to stay even longer if I had brought food for them.  Oh so frustrating knowing that I couldn't get past my mental hangup and live in the moment like my girls do!

I've been delaying writing this post for a few days now as I just haven't wanted to confront these feelings.  I came across this post on Ella Grace with a Pretty Face and I understood it completely.  Sweet Pea has some sensory issues and you never know from one minute to the next how she will respond to situations.  People will ask me if she likes X and I just have to look at them, shrug and say "maybe...depends on the day".  That always makes me feel I don't know my own daughter, but it's true.  Sensory issues are so difficult to pin down!  They are improving, but I don't know if what we are doing is helping or if it is just timing and something will cause them to spike again.  I pray it won't, but who knows!

Confessional over...on to happier times...

Angel did lots of squatting since she didn't like the hay when she sat on it:

Teacher teacher...look what I found!

Angel is so proud of herself:



More hay!

Teacher teacher!  Look at the hay I found!  She was infatuated with both her teacher and the hay.  She kept running up to her everywhere and showing her the hay she would pick up.  It was sweet to watch as I don't get to see her interact with her general education teacher very often.  She is busy working the door at pick-ups and drop-offs so it was really nice to see how much Sweet Pea likes her.

Mom!  Teacher liked my hay!  Do you want to see it too?

Pumpkin sitting:

I love Angel's snarl:

I don't know what to call this look...Angel is the girl of a million looks though.  If she didn't have such a huge vocabulary her face could say everything that she feels.  No poker in her future!

Look Mommy...the hay even bends!  She tried to break lots, but unfortunately it mainly just bent...despite her best efforts.  She would say "break" but amazingly enough the hay didn't obey.

This was the best picture I could get of them with their tiny pumpkins that they got to take home.

To end the morning we stopped by her old center based therapy classroom and visited with many of the therapists and aides that were still working there.  It was great to see everyone and it was especially nice to hear all the praises of how much both girls have grown and changed in the 6 months since she graduated.  We participated in their closing circle time and it was fun to see how comfortable she was there even though the kids were pretty much all new and it had been so long since she had been there herself.  A fun ending to what should have been a fun morning...and was if only I could get over myself!