Thursday, October 20, 2016

31 Days of Down syndrome Awareness - Day 20

 Riley's 4th grade gen ed teacher uses a project based approach to homework which typically makes it something Riley can accomplish.  This week we read a fun story about a little boy going on a grand adventure.  We were given options to make a map of our own adventure, a story poster or to write a recipe for an adventure.  Riley gave me all the ingredients for a great camping adventures.  He says I just want to talk about it.  Which is his way of telling me that he'd tell me what to write.  He did make the list completely by himself.  He knows how to have a camping adventure!

Then we made a video of Riley reading his recipe for a adventure.  So technically we are supposed read the story the first night and then pick a project each of the remaining nights I take a little liberty for our sanity and we typically just complete one.  It works and typically Riley is cooperative.

Wednesday, October 19, 2016

31 Days of Down syndrome Awareness - Day19

Tonight's post is brought you by the letter D.  DINOSAUR!!!  This was a perfect costume for my little dinosaur lover.   He used the pick up line "You like dinosaurs?' All summer to make new friends.  More than one of the parents on Rex's baseball team fell hook line and sinker for that line and ended up having very lengthy conversations about Riley's favorites.  Riley will be wearing this treasure for years to come.

I think that extra chromosome comes with a little extra love of the dramatic.  Its seems to me that most of the kiddos I know with Ds really enjoy dressing up and imaginative play.  One of life's many mysteries.

T Rex arms

Tuesday, October 18, 2016

31 Days of Down syndrome Awareness - Day 18

Tonight we celebrated my new job with my old office crew.   It was a great evening with really awesome people that I will always call friends.  I would highly suggest the book Bad Little Children's Books to my most inappropriate of friends.   Laughed until it hurt and then laughed some more.  I am going to miss this fabulous group of people!  

I am super excited about my new position  I have taken skills from all of my previous work and combined them with a whole lot of life experience and am now working as a Case Resource Manager for the Developmental Disability Administration.  I have lots to learn but I feel like this is going to be a really great fit for me.  Plus the insurance benefits are awesome and that makes  me super happy.  

One of the best things I have learned from working in a psychologist office is the official term for drinking with friends and laughing until it hurts.  Self care!  This is a great description for any time you need to recharge you parental batteries and hang out with grown ups.  All parents need to do this but especially parents of children with special needs.  All joking aside self care is critical.  You can quickly lose perspective if you never step outside your small little world and see that others travel similar paths.  Find joy in laughing at yourself and the crazy antics of our kids.  They are amazing little humans but it is exhausting work being a parent.  So take a break once in while and share a meal with friends and laugh.  It is good for your soul and you parenting skills.  

Monday, October 17, 2016

31 Days of Down syndrome Awareness - Day 17

Not sure how this happened over night.  

As a parent I feel like this one needs way more of my attention right now.  Its funny how it kinda bounces back and forth between the boys and who needs what.     Getting so big and hairy  but really just still a little kid.  So many responsibilities to organize and not quite prepared for it all.  He amazes me on a regular basis with his maturity  and equally amazes me with his disorganization.  This parenting stuff is complicated.

Sunday, October 16, 2016

31 Days of Down syndrome Awareness - Day16

Riley tolerated brothers game today.   Riley was not impressed with the rain and was ready to go home pretty much as soon as he got there.  Thankfully the rain didn't last long or Riley and Grampa were headed to spend some quality time in the car together.  I guess that wouldn't have provided some entertaining stories.  Riley always has his own version of things and mom is tired and so I'm taking the easy way out with a video tonight.  I captured him right before shower time but I assure you he has the bottom half covered...well at least his bottom.

Saturday, October 15, 2016

31 Days of Down syndrome Awareness - Day15

Riley loves to tell stories.  He was full of it on the drive home tonight so I thought I'd try to capture a little of it.  These videos capture a small glimpse of what it can be like to try to have a conversation with Riley.  There is often a continuous loop of topics.  Time is fluid and you may jump from today to yesterday to a week ago all the way back to preschool all in the scope of one small interaction.  It is pretty easy for our family to follow but outside of those of us that see him day to day the time jumps can be really challenging to follow.

Before you view this let me clarify that no one has died,  Rick has been his imaginary friend for several years and I have no idea where he came from, and Rex has no injuries.

Friday, October 14, 2016

31 Days of Down syndrome Awareness - Day 14

~Live to Dance, Dance to Inspire~

 Anyone that has spent any time with Riley knows that this kid lives to shake his groove thang.  He has always been a music and dance kid.  I had previously tried a dance class that was happy to include him but the class was geared for typical kids.  There were a lot of dancers and it moved fast.  It just wasn't a good fit.  When we found Inspirations Dance Studio and specifically Mikaela we knew immediately it would be a good fit. 

We stumbled into dance class at a time when Riley was really struggling at school. Both socially and academically he was a hot mess.  There were weeks that dance was the the only happy place he had.  It was an hour a week where he was 100% welcomed and completely accepted for who he is.  Mikaela has amazing composure and is not for a minute fooled by Riley's "cute" routine.  She has very high expectations for him and knows he is capable of so much. It is a special balance when you can meet a person where they are, challenge them to be more, and all the time make them feel special and accepted.  

This is Riley's 3rd year taking dance.  He still loves it.  This past week has been a rough one with a lot of transitions for Riley.  After class when I checked in with Mikaela on how he was since it has been such a bumpy week she says "well it started rough but I just looked at him and told him I needed him to be awesome.  I don't want to be grumpy so Riley be the awesome kid you are."  He turned it around and decided he could join in and did much better.  There is something a little magical about dance that tends to bring out Riley's best side.  
Riley loves to be like his big brother.  Rex plays baseball, football,basketball...  those are things that I am familiar with.  Dance brings an entirely new experience to our family.  I think it is so awesome that Riley has found something he loves and he can do on his own in a meaningful beautiful  way.  Seeing Riley's dance shoes next to Rex's football cleats sums up the beauty in the differences in my boys. 

Inspirations Dance has a full menu of dance classes for typical and special needs students.  You can find the studio at Inspirations Dance Studio   and read all about the classes, schedule and the instructors.  I have added the mission statement below for your reading ease.   

Inspirations Dance Studio is a non-profit organization dedicated to teaching all ages and skill levels the world of dance. We pride ourselves in making sure everyone has a chance to express themselves. We have made sure to implement a variety of diverse programs including: financial options for low-income families and dance classes for people with special needs. We are here to serve our community with highly trained staff and encouraging attitudes. There are classes offered in floor gymnastics, ballet, jazz, tap, and hip hop for all ages and abilities. Everyone will have a chance to shine their brightest. 
~Live to Dance, Dance to Inspire~