Choose a Party

 Today Riley's class celebrated Valentines Day, Mardi Gras and the 100th day of school.  We can chalk some of that insanity up to the crazy Catholics.  We can't party during lent and since that begins tomorrow we have to cram it all in today.  Thankfully my mom was able to spend the majority of the day with Riley and keep him out of too much trouble.  He had a few melt down moments but overall had a fun day. 

Getting everything ready for the day took some work with Riley.  We counted out 100 goldfish crackers for him to take to class.  10 rows of 10 so we could practice a lot of counting.  Counting by 10 is hard work. 

We've been trying to work on Valentines for a few days because I knew that Riley's wasn't going to sit down and willingly write his name 19 times.  Seriously should have started a week ago but we at least spread it over the weekend.  He did it!  All by himself because I may be more stubborn than he is. 

Getting to use the box like a table made it fun enough to sign a few.  Just a few though.    Rex decided he didn't want treats with his Valentines so it was just Riley and I making marshmallows this year.  Riley loves to help me in the kitchen. 

He loves to stir and  mix

After the ingredients are mixed marshmallow making is pretty boring.  Waiting for it to boil to a softball stage gives us a bit of time to work on other projects...

 

Like making cookies. 

Riley loved mixing it with his hands. 

We of course had to taste the cookies... did you guess they were chocolate chip. 

This is what big brother looked like the entire time we were working.  He has been plowing through the Percy Jackson series since Christmas was excited to be finishing book 4. 

Thankfully I was able to talk Rex into helping on day two of marshmallow fun.  After you make the marshmallow fluff it has to set up overnight.  Its pretty boring in the shape of a cookie sheet so we like to take a cookie cutter to it and make fun shapes.   We added coca to the fluff for yummy chocolate marshmallows. 

Riley loved making hearts and was so proud he could do it all by himself.   He worked so hard to press that cookie cutter down SOOO hard so he could pull out the heart. 

 

See mom I did it all by myself. 

They had to stop and pose for a minute. 

Apparently I stopped taking pictures at this point in the project but we did finally get enough hearts to send to school.  We put them in a little baggie and tied them to the Valentine cards that Riley signed.  I love that Riley is able to do most of the work this year.  

Special Olympics Young Athletes Fun

Today Riley and I went to our local Special Olympics Young Athletes program. 


Young Athletes™ is a unique sport and play program for children with intellectual disabilities. The focus is on fun activities that are important to mental and physical growth.

Children ages 2 1/2 to 7 enjoy games and activities that develop motor skills and hand-eye coordination. Young Athletes is an early introduction to sports and to the world of Special Olympics. The children learn new things, play and have lots of fun!

Our group meets on the 2nd and 4th Saturdays of the month and the kids have a lot of fun. Our schedule has let us go more often lately and its always fun to see our friends and catch up.    

A fast version of Head Shoulders Knees and Toes gets the blood pumping so the kids are ready to play. 

Followed up with some parachute fun.  The kids all think its hysterical when the parents hold the parachute and the kids sit under it.  We all fall down is a lot more fun when you get to be hidden under the parachute. 

Sitting in line for the obstacle course with his buddy Beau. 

 

Coach Marie giving Riley directions

Some times waiting in that line is such hard work a kid just has to take a break.

Riley is quick to cheer for himself when he kicks a goal!

Throwing the ball through the hoop.  He makes it!



The new camera doesn't make me a good photographer. 



A crowd favorite is ribbons and snacks at the end! 

Riley's speech therapist Marie and her sister Liz but a lot of time and effort into making the program a success for the kids.  I'm now that our friends know how much fun we have lots of you will be coming to join us.  

Counting to 100

Next Tuesday Riley's class celebrates the 100 day of school.  We are supposed to send a bag of 100 of something and send it to school with Riley.  Suggested items are cotton balls, pennies or marshmallows.  I wish we could bag up the laughs that Riley has provided over his kindergarten journey these first 100 days.  I'm sure I could fill up a bag with the blessings and acts of kindness shown to Riley and our entire family during this kindergarten adventure. 

  The transition back to school after Christmas vacation has been extremely challenging. It seems like we just haven't been able to get our routine back and  has  had an impact on Riley.  Everyday it has been something new, bigger and better in the creative ways Riley has misbehaved at school.  It has been frustrating beyond belief when I know that Riley is capable of so much more.  His behavior choices were not only frustrating and distracting but at times putting his safety at risk. 

Some days it is almost hard to believe that it is even possible for one small boy to make such crazy choices.  Friends have told me that they love to check my FB updates on Riley because its like reading the comics.  Most of the time I'm able laugh at the craziness that is our life, but the last few weeks I haven't laughed much at the goings on at school.  Something about your son hitting one of your friends kids, and not to mention one of his very favorite people, that just doesn't settle well.  Thankfully he didn't actually hurt anyone or himself during the craziness of last week.  My close friends sent many encouraging messages and offered wine and chocolate to help (they know me well).

A few of these message stuck out. 

And remember for all the stress he causes you, not only does he thoroughly entertain most of us, but Riley teaches everyone around him empathy, patience, acceptance and how to love with your whole being!


...think about how much he has done positively.  He is a guy with Ds in a regular Ed classroom that in a school that has never provided for a child with his needs and has adjusted very well. 

I'm so glad my daughter is in Riley's class.  We want our children to accept everyone and believe that this is what the school is about. 

Some days its good to be smacked in the face with the truth.  Especially when its your friends and they are telling you that your kid is pretty amazing.  It is hard at times because we want so much for Riley and we push and push to make sure he has access to everything he needs but sometimes we forget to listen closely to Riley.    He doesn't always have the words to tell us or his friends what he wants but when we slow down and listen to the messages he is sending with not only his words but his actions he is easier to understand. 

Lately Riley has been sending lots of messages.  Some louder than others.  I think pulling his hearing aids out and throwing them or hiding them is a pretty clear message.  Friday we picked up the new molds and the repaired hearing aids and his compliance has improved drastically.  He still didn't want to wear them at school but thankfully Gramma is on duty tomorrow so I think that will solve its self. 

We have been able to put a few extra supports in place during the school day and he is already making better choices.  Thankfully Gramma has as much fun in kindergarten as Riley does and will be spending some time in his classroom.  My niece loves her cousin and needs volunteer hours for her college courses so she will be spending several hours with him on Fridays.  A classmates mom extended her lunch duty volunteer time and spent some time with Riley after lunch.  Just being able to stay in from recess makes a positive difference in his day.  I hope to continue to add a few supports to give him and his teacher the extra help they need during the day. 

All the extra work and stress of having him in a school that isn't required to meet all of his needs causes some people to  question our decision.  Why don't we just move him to public school where they have to meet his needs???  Some days I question our decision and I think it is something we will always be evaluating but for today this community is where he belongs. Would he have a school where he can walk through  the hallway and have every single student know him and want to be his friend? Maybe, but probably not. Might he learn to write faster if he had more one on one teachers?  Yes, I'm sure he would.  Would he be able to recite the Lords Prayer with his classmates and pray for his Gramma's dog each morning ?  No, he certainly would not. 

You see how easy it would be to fill up that bag with 100 blessings in our world.  So next time I'm a wreck over Riley calling someone butt face feel free to call me a butt face and remind me to count to 100. 

The Better to Hear You With

I wonder if I'll ever stop being surprised with what I learn when I pick Riley up at the end of a school day.  As I waited for Riley's class to finish their end of the day prayer I was excited that he appeared to still be wearing his hearing aids.  This is huge as he has been a total nightmare about wearing them lately.  Well as I watched him peel his hearing aid out of his new holder and pull it apart I realized that he was still wearing the holder but neither of the aids were in his ears.

  As the kids left the line up I went straight to him and we talked about his hearing aids and where they both were.  He handed me the two parts of one of the aids and then melted into tears so he wouldn't have to talk to me.  He knew he was busted!!!  Insert deep breathing exercises here...not so good to freak out on your kid while the teachers are watching. 

I made him cry more when I stripped of his snow pants hoping to find the other hearing aid but no such luck.  I did find play dough and 3 small blocks.  I was trying to calmly ask Riley about where he put his hearing aid but he just pouted and wouldn't make eye contact.  The teacher and substitute that was there to help with testing both helped me look and we did eventually find the other aid in the bottom of his back pack.  Well we found it minus the green mold.

  His teacher back tracked through his day and realized he had only been out of the room for a quick trip to the office while the teacher took the rest of the class to PE.  (Riley stayed with his classroom teacher since there was a substitute for PE - its better for everyone that way)  Its freezing stinking cold so inside for recess and he stayed with his teach pretty much the entire day.  Lucky lucky Mrs Theilman.   At least she said he had a good day.   At some point during the day he took the hearing aid off and stashed the parts and I'm sure the bright green mold will turn up eventually.  The picture to the left shows Riley's hearing aid with the leash we put on it to keep him from losing it.  The arrows are drawn at the top wear the tubes that are part of the green mold attach to the rest of the tube that is attached to the actual hearing aid. 

The green part is replaced as he grows and really isn't cost prohibitive from replacing if he hides it.   Last week after racking my brain for reasons that Riley was refusing to wear his hearing aids it dawned on me that it had been about 9 months since his last set of molds.  In that time he has grown a pants size, a 2 shirt sized and a shoe size so silly me for not thinking about out growing them.  We were able to slip in a get impressions for a new set of molds that will arrive next Friday. 

We choose to go with a more neutral hearing aid color for the actual expensive hearing aid body, but you can see it is available in lots of fun colors.    This is the portion of the aid that makes me sick to think of replacing.  Riley's set was roughly $1600.  As a point of reference in our lives that is more valuable than the car Justin drives to work everyday.  Thankfully my insurance changed right before we learned he needed these and we have an amazing plan that actually covers hearing aid.  Little know fact:  most insurance plans do not cover hearing aids no matter the reason for the hearing loss.



While we were there I asked the audiologist for recommendations on a new "leash" that we might have better luck with since he has figured out if he just yanks on his current one it comes clear off his shirt and he can chuck the entire mess anywhere. Pretty much defeats the purpose of putting it on at all.  She gave us a sample of Ear Gear  pictured to the right.  These fit over the hearing aids like sleeves and come in lots of colors but the best part is that the clip that attaches to his shirt has little claw teeth in it and locks into place.   It works a bit too well when you forget to send directions for the teacher and she cant get it off even when he refuses to keep the hearing aids in his ears.  So while the hearing aids dangled off their leash they were too tempting to be ignored.   If you notice in the picture above there is a tube attached to the hearing aid.  This tube is made of hard plastic and is not designed to come off but apparently Riley can get it off.   The hearing aid I found at the bottom of the back pack was missing this key piece.  Who knows if it will be attached to the green mold when that turns up??

So after this hide and seek game was over we headed out to Riley's ENT appointment that he was 15 minutes late for.  The good news is not only are his tubes still in place but the hearing aid office is in the same building.  We snuck upstairs and miracle of miracle they are able to fix the hearing aid and it will be all ready to go when we pick up his new molds next Friday. 

Are you tired yet???  I am.  Seriously I need to learn not to react when he does this stuff.  It would sure save me a lot of energy if I didn't stress.  I should know that these hearing aids have a life of their own and somehow keep on ticking.  They have spent a night outside in the school playground, a night in our driveway inches from where Justin pulled the van in, lots of time under most of the furniture in our house, countless hours under couch cushions and the list continues.  Oticon makes a really really sturdy product and I really should send them a letter to tell them just how amazing these aids are. 

And just for a fun a couple shots from the kids playing in the snow this weekend.  Loving my new camera!!!

Riley was working HARD to push Rex over

Riley taking a little break under the trampoline. 

Traveling Party

I'm super behind posting but something just can't go without being said even if said late.  Riley's birthday weekend didn't go exactly as planned way back in November.  Riley brought his treats to school, we had a fun family dinner on Friday and were resting up preparing for his big party at the children's museum on Sunday.  Saturday night arrived and so did the stomach flu.  Sunday morning I had to make some very sad phone calls to cancel Riley's birthday party.  6 year olds get really excited about a party and Riley was not the only one very disappointed about the party no happening.  When your birthday falls on the 30th of November it is incredibly difficult to reschedule a party.  Between school concerts, holiday parties, and Jesus's birthday December books up pretty quick. 

One calm Saturday morning in early December I received a text message from my friend Amy asking if it would be OK if her family stopped by.  Well those of you that know me well understand the panic of unplanned company.  We exchanged texts and she promised to give me time to shower and pick up the house. By Saturday the house typically looks like a bomb has gone off and I don't have that gene that compulsively makes me unable to sleep with dirty dishes in my kitchen.  So we ran around like crazy because something told me she was up to something I just didn't know what... and I so would have never guessed. 

Fast forward a couple hours and our door bell rings and these two amazing ladies and their families arrive with a traveling birthday party for Riley.  We are talking cupcakes complete with candles, gifts, party noisemakers and friends! It was one of the most thoughtful things I've ever experienced.  I love that I have friends that love my kids. 



Jenny and Amy~ the instigator



Birthday wishes



Birthday Gifts!



Love

 Its amazing to have 6 kids and parents arrive and fill your home with a party because they love your boy!   Riley loves all of these kids and was so excited to have them at his house.  His party didn't go as planned but turned out wonderful!

The whole crew!

Dear Riley

Dear Riley

Happy 6th Birthday my little man.  It is hard to put into words just how much you are loved by your family and friends.  Rex and your dad and I are so very blessed that you completed our little family.  We didn't know when you were born but we soon learned that you are a perfect fit in our crazy little world.  You have been busy teaching us to be more patient, understanding and compassionate over the last 6 years.  We are certainly a work in progress but you have taught us a lot. 

It has been another great year for you.  You continue to amaze people daily.  I have spent so much time worrying over the best school for you and once again you have showed me that you will succeed where ever you are.  You have certainly taken All Saints by storm and have made yourself and integral part of the school.  Trust me when I say that they will never be the same.  I am pretty sure you know all of the kids in k-4 by name and can get them all to give you a hug on command.  You certainly have the social part of school down pat.  You are learning to read and have a huge list of site words you know.  Writing continues to give you a headache but you can do it.  You will be writing like a champ before I write your 7 year birthday letter. 

Your very best friend, Ella, and her family joined us for dinner tonight to help celebrate.  You two have been friends most of your life and it is fun to watch you together.  Neither of you walked or talked when you started playing in the same room.  Now you both are so busy bossing each other its hard to get a word in edgewise.  You both have genuine concern for each other and truly enjoy playing together most of the time.  Riley your Great Grammy June used to say that a person is truly blessed if they have one really close friend.  You certainly have a beautiful blessing in your friendship with Ella. 

Truly I don't think you have met anyone that isn't your friend.  Riley you have a beautiful spirit that draws people to you.  Your quick smile and mischievous laugh keep make them want to be friends for life.  You have brought countless people into our world and we are so much better for it.  I know that by simply being you and laughing your way into peoples heart you have changed many peoples view on what a child with Down syndrome is like.  I think I will always worry that people will judge your beautiful almond shaped eyes before they know you but that worry get a little less as each year passes.  Time and time again you show me that if they look for just a moment at the twinkle in your big brown eyes they will see an amazing little boy.  A boy that knows no limits that will accomplish anything he puts his mind to. 

Riley someday far into the future you will read these birthday letters and I want you to truly understand how very much you are loved by your family and your friends.  You make us all better because we have you in our life. Even on the days I'm pretty sure you have given me more gray hairs with your antics I love you more that words will ever be enough to explain!

Love,
Mom

Riley's 4th  Birthday letter is here. 

Love Animals

Riley had to give his first report at school today.  The assignment was to choose a Saint and learn about them and then report back to the class on your saint while dressed as your choosen saint.  I scoured the internet looking for the patron saint of Down syndrome but wouldn't you know thats about the only thing we catholics don't have a patron saint of.  There is one guy they are working on but I wasn't about to send him to school with a almost saint. 

So we went the next best route and choose St Francis of Assisi because Riley LOVES LOVES LOVES animals.  Not truly sure how to help facilitate Riley completing this project I'll admit I simply chose for him and wrote in the few facts that he needed to report on.  Then we rehearsed his line.  Saint Francis LOVES animals!  Riley had it down and for those of you who are friends on facebook you know he had it down a week ago when I sent him to school in costume a week early. 

This morning we practiced again and put on the costume which consisted of an Old Navy tshirt of Justin's with a shoelace tied at the waist.  I looped a rosary at the waist and he carried a beanie baby bird with him. 

I picked him up at school this afternoon anxious for a report and the teacher is cracking up giving me the days update.  The morning went well.  They paraded through all the older classrooms and apparently he had to tell all the teachers he was St Francis and he loved animals.  I've heard from a few parents that their kids loved his costume.  One mom said her daughter tried to give him a fist bump but he insisted on a hug.  I love hearing these tidbits about his day from the kids.  He is so loved at school.  After the parade they went up to church where they talked with Father Mee.  When asked who he was Riley replies "I Riley".  Oh well at least he told everyone else he was St Francis. 

The day degraded after that.  He lined up great from recess but then made his escape as the came down the stairs.  Apparently he hid behind the statue of Mary that sits in the court yard.  I think Rex's teacher will help him remember to go up to recess to help Riley back to class since she was on duty and couldn't get him to get back in line.  The reading teacher came out to wrangle help Riley so that the other teachers could take their kids back to class.  It took some negotiations but she was able to get him out from behind the statue and back to class.  Thankfully she has a great sense of humour and loves Riley. 

Rex's teacher in her cute Scottish accent had to stop Riley's teacher to see how St Francis managed with Mary.  Riley is so very lucky he is so darn cute.  Only with the sparkle in his eyes and his smile does he keep himself in every one's good graces.