At My Own Pace

Down Syndrome Creed

Author unknown

 

My face may be different,

But my feelings the same.

I laugh and I cry,

And I take pride in my gains.

I was sent here among you,

To teach you to love.

As God in the heavens

Looks down from above.

To Him I am no different.

His love knows no bounds.

It's those here among you,

In cities and towns,

That judge me by standards

That man has imparted.

But this family I've chosen

Will help me get started.

For I'm one of the children,

So special and few,

That came here to learn

The same lessons as you.

That is acceptance,

It comes from the heart.

We all have the same purpose,

Though not from the start.

The Lord gave me life,

To live and embrace,

And I'll do it as you do

But at my own pace.

This is still one of my very favorite pieces on Down syndrome.  It  good reminder of what is important in this life.  Everyone that knows Riley is better for it.  We are very fortunate to be surrounded by so many amazing people that understand this little fact immediately and completely  Others are much slower to understand.  Part of me wants to point it out to them so they can sit back in amazement like the rest of us as we watch and learn from Riley.  The selfish part of me figures its their loss and I'd be happy to soak up all the love and excitement Riley has to share that others are too quick to over look. 

 

Special moms

One of the most important parts of parenting a child with special needs is moms night out. A night out with a few of my special moms is just what the dr ordered. It makes for a much happier much more relaxed mom.

One of the greatest gifts Riley's chromosome has brought us is amazing friendships !!!

Celebration!

Thankfully today we have a great celebration to distract me from the ugly list of "safety" issues that Riley has at school.  I'm not totally sure how we went from great reports to being in the principals office but that is where we are today.  Tonight we take a break from the drama of kindergarten to wish a very very special lady Happy Birthday. 

Great Gramma Elsie turns 94 today.  I never knew my great grand parents so I think that is very very cool that my boys will remember theirs.   We were able to visit her in May during our trip to Florida.  My boys love love love her...  and so do I. 

When we visited in May the boys were able to spend some time getting to know Great Gramma better.  Rex had to interview her for his 3rd grade homework.  It was great to hear some of her stories and for Rex to understand more about his family history.  Rex's favorite quote was when she told him that he shouldn't have to do homework on vacation!

Happy Happy Birthday Elsie!!!  Wish we were there to help you celebrate!







Riley, Great Gramma Elsie,Rex
May 2012





Hitching a ride to Rex's baseball game with Great Gramma
June 2010




Reading Books



 

Progress Report

Hard to believe that we are already close to half way through the first quarter of the school year.  Last week we received Riley's first mid quarter progress report.   He is doing great.  The boys' school require a parent/teacher conference during the first quarter.  Its actually a nice way to start the year with a progress report and a conference so you can make sure things are on track. 

I'm hoping this is considered when I get called into a meeting with the principal to talk about his safety issues due to non listening on the playground.  Recess is his favorite part of the day and the part that gives me the most anxiety. It brings so many variables with it including a variety of teachers wide open spaces and the freedom to run.  We have made huge progress with lining up when asked but added a new issue.  Today he ran up the hill where there are fences to surrounding houses.  Apparently he was putting his fingers through the fence that has dogs in the yard.  He wasn't listening and these behaviors get thrown in the safety concern category which apparently means they are shared with the principal.  I'll be waiting for that call. I feel like Riley's teacher is totally on aboard with treating him like the other kids but it appears that some of the other teachers that only have him during recess aren't quite sure what to do with him.  Not sure why yelling at him and sitting his sassy little bottom down, like they would with any other child that wasn't making good choices, wasn't their natural response.  Sometimes he can play the Down syndrome card just enough to convince adults he is different.   He needs clear boundaries and consequences just like any other 5 year old.  I am thankful that the school is willing to work with Riley but lets try the standard responses before we tackle trying to come up with a new way to deal with him.  I clearly remember the women at my grade school that had recess duty all the time we all loved her but were all clear about the fact that we would be sitting on the "wall" if we stepped out of line.  Riley will learn the rules too but he needs them reinforced. 

 

Good Times

Today when I picked Riley up from school there were no stories of him running into the classroom with out his pants, or cracking jokes during circle time so tonight we are going to take a trip down memory lane and we'll hope for better material tomorrow. 

 This is a video montage I put together during my first 31 for 21 Challenge 4 years ago.   The boys and I had fun watching it.  Hard to believe just how much all four of us have grown over the last 4 years.  Riley is such a skinny thing these days its easy to forget there was a long period of time where he had not neck and his arms were a series of rolls. 

Make a video - it's fun, easy and free!
www.onetruemedia.com

Grab This Button

Two Tiny Pumpkins

Riley's kindergarten class had a field trip to the pumpkin patch today and I volunteered to go on my first field trip. Rex has never been a fan of me going on field trips and working full time gives me a nice excuse to not ride a bus with that many noisy kids.

The morning started as usual and since I was with Riley he showed me how he puts his things away in his cubby and gets is pencil box out so he can work on the entry activity.  There seems to be a little drama about who Riley sits by.  There are a few little girls that are very interested in him sitting next to them.  One little girl had a special picture she had colored for him over the week end.  Must be a rough life when you have to fight of the girls that want to be your friends. 

Riley  was pretty excited that I was going to ride the bus with him. Wow do two kindergarten classes make a lot of noise on the bus.  We settled in for our bus ride to Carver farms.  Riley wanted to take a picture so of course he took one of Molly who was sitting across the aisle from us.  That is hard work for those little fingers to hold on to the camera and squeeze the button at the same time. 

The kids were pretty excited to line up and get ready for the corn maize.  Riley doesn't look as shrimpy next to his classmates as he used to. 

The corn maize.

He was all over this. 

The kids were able to pick two mini pumpkins, two gourds and a small pumpkin to take home.  This turned out to be big work.  At first he was pretty busy following his friends and didn't want to stop and pick out his own, and then he simply got worn out.  Those little legs were done.

One of the other moms did manage to snap a quick shot of Riley smiling.  Great timing because the mood went down him from there.

I don't want to smile in a picture with my friend.  I don't want to look at the camera. Just want to suck my thumb an growl at you. 

I will sit here but I won't look at the camera.  Maybe someday tired won't turn into growling but for today that is how he copes.  He simply wants to sit down and shut it out. 

We a bit more mellow ride home.  Riley didn't nap but he did relax and was quiet and didn't talk to his friends.  I could have settled in for a nap but he wouldn't give it up.  I assumed he would want to go home with me after we arrived back but he perked up and instructed me to go home.  "you go home mom I stay at school"!!!  So that is what I did.  He might not want one but I'm going to grab a quick nap after a exciting trip to Carver Farms. 

Grab This Button

Evening Giggles

We try to sit down for dinner as a family every night.  It might only be over a bowl of cold cereal after a late evening of running around but we typically get there eventually.  Riley typically reminds us its time to pray.  Some nights we have to pray a few times before the meal is over but I figure a few extra prayers will never hurt us. 

 Before you think my boys are too sweet the next  video shows how the meal progresses.  I'm sure Rex will be embarrassed that I shared this video but I figure a I have a few years I can still get a way with embarrassing him before I truly scare him for life.  Living with all boys is often gross and smelly but its sure good for a laugh. 

Not exactly sure when his shirt got wet but he announced that it was as he was stripping it off.  I guess I'm glad it was only his shirt.  We all know he's not afraid to bare it all.  If you've forgotten you can ask anyone sitting in the stands at Rex's football game a few weeks ago.  Riley thought nothing of stripping down to his boxers in from the the crowd.  Thankfully they were cute little football boxer briefs.  He had spilt his glass of water and he wasn't about to sit around in wet pants.  He simply announces "my pants wet" and strips them off.    Gotta love him!

 

Grab This Button