Saturday, December 21, 2013

Sweet Pea Started Dance Class

Sweet Pea has fallen in love with dancing since the Twinkle Toes movie has played about 5,000 times in our house.  A friend finally convinced me that I should try a dance class at a local studio and I could not be happier that I listened to her!  Sweet Pea has now gone to class twice and she absolutely loves it!  The other students have been in the class for a few months, but Sweet Pea is trying her best to keep up and I think you will agree, she is doing a darn good job too!  Way to go Sweet Pea!!!!!!

Here are videos from her first week:

Video 1:

Video 2:

Video 3:

Merry Christmas

We have been very busy enjoying the Christmas season and here are a few pictures to share with you all.

Sweet Pea's preschools holiday breakfast:

Santa came to visit
Their friend L did face/hand paintings

Angel made snowman & reindeer donuts and enjoyed the frosting the best

The kids sang a few holiday songs
Angel's preschool did a holiday concert as well.  We were fairly positive that Angel would not sing or even go on stage, but she did!  Cookie bribe apparently worked!  She sang most of the songs and looked pretty happy doing it.  Here is a video clip of one song.  She is sitting on the ground, the third row back so it is hard to see her:

This is at the end of the performance

Angel being cute while dressed up

We have enjoyed Candy Cane Lane:

"I'm scared of the Grinch"
The irony is that Angel is the Grinch!

Sweet Pea enjoyed visiting with Santa again...Angel, not so much

Sweet Pea's favorite mode of transportation

This was the activity of the night...
In a variety of forms...

Enjoying the trains

Waiting for Santa...she loved this Magnolia pod

One of Angel's preferred modes of transportation

 Tonight they even sold hot cocoa to Candy Cane Lane visitors.  They made $18 in 10 minutes!  Do these kids have a sales career in their future?

We've done a few other things, but photos either weren't taken or can't be found. :-)

Friday, November 1, 2013

Trouble Times Two

We captured another video tonight that was just too good to pass up posting.  Just a taste of the chaos that happens in our house.  Angel teaches Sweet Pea things all the time...they just are not normally quite this entertaining.  The upside is that it is a great example of taking turns!  The downside is that nothing will ever be safe in the fridge or freezer again.

Twinkle Toes

Sweet Pea is INFATUATED with Twinkle Toes: The Movie by Skechers. She was given the DVD by the amazing people at Skechers last Thursday and hasn't stopped watching it in a week!  It's about a girl who has terrible stage fright, but with the help of some friends she overcomes it.  She wears shoes that sparkle and light up and you will notice that Sweet Pea is wearing a pair of them as well in this video (also courtesy of Skechers).  While the story is cute, what we like most is that it is getting Sweet Pea to dance!  She rarely dances, but she is dancing along with this video!  Her dancing is getting better and more involved with each viewing.  I get the biggest smile when I watch her.  The problem is...she doesn't like me watching!  If she turns around and see me watching she stops, sits down and yells at me to go away.  Lovely!  Luckily, Mommy is a little sneaky and I turned my back to her with the camera in between my arm and body to record this video.  You will see her looking back to see if I'm watching and watch for her huge grin when she thinks I'm not!  It's priceless!  I hope you all enjoy this video as much as we do!

Tuesday, October 1, 2013

Learning Program

Today is October 1st and marks the beginning of Down Syndrome Awareness Month.  I don't have any big plans to celebrate it this year on the blog, but who knows...maybe I will actually make a few posts!  Here is at least one for the month that shows how my little girl is learning to read and loving every step of the process.

I enrolled Sweet Pea in Level 1 of the Learning Program this fall and I'm very happy with the program that is being run by Club 21 in partnership with DSFOC.  I've had some of the materials for a couple of years, but I needed to actually enroll to get my behind in gear to use them regularly.  I've only attended one class so far, but I'm getting into a good routine of pulling out the books and working with Sweet Pea regularly.  She LOVES the books and requests them regularly.  I try to not let her access them without me, but sometimes she gets her hands on them and I'm happy that out of all the toys in the house she wants to play with those!

Here are some videos that I wanted to share of Sweet Pea reading through our session. 

The first video is what initiated this post.  I wanted to share a cool technique that is really working for us.  The books are all available via pdf so I used the iPad to screencast me reading the book using a laser pointer to highlight the words.  She LOVES the 3 books that I did this with.  She follows along and engages verbally as it is being read to her.  I am going to have Daddy and Grandma read some too so she has more variety and we can keep them fun.  I am happy that she is actually looking at each word as it is being said as when I read the books in person with her she is normally looking at everything in the room EXCEPT the words when it is my turn.  This was my first attempt and I will record future ones a little slower, but I'm still happy with the result.  Hope you like the idea and might be able to incorporate it into other uses too!  (BTW I used Explain Everything to create the video.  The app came highly recommended from the Technology for the Journey Conference so I decided to splurge and pay the $3 for it.  So far I'm happy with the purchase as it is very easy to use.

This video shows an example of how Sweet Pea isn't looking at the words as I point to them.  It's not the best video as I'm holding the camera so I can't be at the normal angle so that I'm not covering the words with my pencil, but she does the same thing when I'm in the preferred position as well.  Sorry for the bad audio!

This next video shows how she likes to assume she knows the words without really looking at what she is doing.  She catches on though...

Now this video is just strange.  You get to watch her recognize a word upside down, a freak out because the card isn't staying put and her guessing two words before even turning the cards over to see the words.  But she enjoys this activity and I just recently added the part where she picks the card and she is a big fan of that change.

The final video (ran out of space on my phone partway through it) was Sweet Pea doing one of the accompanying worksheets.  She requested this activity by saying "write" so I gladly gave this sweet little girl what she wanted.

I look forward to lots of progress in the next few months and I will have a reader on my hands before I know it!

Saturday, September 14, 2013

Club 21's Technology for the Journey Conference

Wow!  I have to start with just, Wow!  I attended the Technology for the Journey Conference that Club 21 put on and I am blown away.  I've written before about their Tools for the Journey Conference that they have historically hosted around February, but this year they listed to their members and created a conference that focused on using assistive technology.  The Friday session was geared towards parents, educators, therapists, etc who have/work with children who are non-verbal.  Sweet Pea doesn't fall into that category even though her intelligibility is a challenge.  Today's session focused on using assistive technology to allow our kids to have the same level of independence as others in their environment.

To start with, I think that is a pretty amazing way of looking at success and assistive technology.  We have always used "independence" as a goal, but I have never really equated her/our success with that when really I think we should.  If we can use technology to bridge the gap that separates her from what her peers are doing, I want to do it! 

Before I get into what the presentation, let me share the bios of the three amazing speakers as shared in the brochure for the conference:

Gayl Bowser is an independent consultant whose work that focuses on the integration of technology into the educational programs of students with disabilities. She is the former Coordinator of the oregon Technology Access Program (oTAP). Ms. Bowser provides assistive technology consultation, training and technical assistance throughout the United States and internationally. Gayl has authored numerous publications. The most recent is the 2012 edition of Education Tech Points: A Framework for Assistive Technology. In 2013, she is co-author of the 2013 edition of Assistive Technology Pointers for Parents, which will be released in November. Ms. Bowser’s passion is for collaborating with families and educators to discover all the exciting ways that technology can help kids with disabilities to be more independent and self-determined.

Dr. Caroline Musselwhite is an assistive technology specialist with more than 30 years of experience working with children and adolescents with severe disabilities, in a variety of settings. She is known for her expertise internationally. She has authored a number of textbooks and software on a range of topics from Literacy to Communication Programing for Individuals with Severe Disabilities. She is a founding member of the Board of Directors for the International Society for Augmentative and Alternative Communication (ISAAC). Dr. Musselwhite’s passion is seeing students achieve literacy skills well beyond all expectations!

Erin Sheldon is a parent, advocate and educator. Her journey began when her daughter, Maggie, was diagnosed with Angelman syndome, low vision and a dual diagnosis of autism. Erin focuses on the use of assistive technology to support literacy development for students with significant disabilities in inclusive classrooms. Maggie was the first student in her school board to use an iPad as assistive technology. Maggie's success with the iPad led to her school becoming a demonstration site for using iPads to support access to the general education curriculum. Erin has a Masters in Education from Queen's University in Canada. Erin’s passion is problem-solving to support students with significant disabilities to participate and contribute in friendships, recreation, and in the classroom.

Below are some bullets on highlights from what I learned today.  I hope I walk the delicate line of sharing some important topics for so many parents, and not sharing too much as these wonderful women have to make a living!

Gayl Bowser -  SETTing up Cognitive Supports
  • Once assistive technology services are in place, school district has to make it work
  • Reasons to use AT
    • increase levels of independence
    • improve quality of life
    • increase productivity
    • enhance performance
    • expand educational/vocational options
    • increase success in regular education settings
    • reduce support services needed
  • Assistive Technology Assessment is:
    • a process
    • a group process
    • an on-going IEP Team process
  • AT Assessment Process:
    • Frame the question!
      • Define the task which causes the child difficulty, the child's present levels of performance and why you think child isn't making enough progress
    • Clarify the problem
    • Try tools and strategies
    • consider the need

Dr. Caroline Musselwhite - Write On! Supporting Emergent Writing Through Technology - Linking Reading & Writing!!
Graphic from
  • Research shows students who write become better readers.  Students learn to write when given daily opps to see others write.  Students need frequent opps to write without standards.
  •  3 main supports for writing for students with significant disabilities
    • Closed, Activity Specific Vocabulary - Word banks, symbol banks - Allows early success, modeling great vocabulary, however it's temporary and not self generated
    • Core & Content Vocabulary - lots of words to pick from and consistent, but finite vocab
    • The Alphabet -
  • WRITE from the start - Use some type of alternative pencil
  • Form follows function - Kids will learn how to write AFTER they learn purpose of writing.  A primary focus on form may interfere with the development of understanding of function.
  • Focus on form in stand alone tasks, but for most activities make it easy for the child to learn function without difficult task of form
  • Encourage scribbling!!!!  Set a purpose for scribbling (gives us context to make guesses about possible meanings) and model scribbling for the student but choose a slightly different topic (so student can't copy your ideas), read what you wrote, then turn over.  Give reinforcement feedback (Good writing, awesome work, you really paid attention, etc) during and informative feedback (I see some letters from your name - let's find them, you have a lot of "C"s in your writing - let's find all of them, etc) after. 
  • Assessing Progress: Typical order of progress
    • repeats letters in order - student repeats the letters in order they are presented.  Doesn't include all letters, but most.
    • repeats letters out of order - continues to repeat letters, but not always in the order they are presented.  May include single letters.  jjjjjiorttghhhhhhemae
    • letter patterns - selectively experiments with a pair or small group of letters to make repeated patterns - hrhrhrhrwwwlwlwlwlllqwllrttytytyty
    • random spaces - experiments with using spaces - rr l l   l  w www qw eeeeeee   fhfhfhfhfhfh    w  w 
    • word like groupings - contains word like groupings - kjl  ryry  ruaiu jdjdjdjdj ajlkj ffff
  • Beyond Scribbling = Developmental Spelling (vote by letters)
    • Use first letter of word
      • For a break do you want to go for a walk or play on the computer (w or c)
      • Read a book about hurricanes or tornadoes (h or t)
    • Do this at least 10 times per day to see real improvement!
  • Publishing is powerful!  frame it, read it, put it on the wall, occasionally publish it more formally.
  •  Apps Recommended: Sticky Notes, Magnetic Letters (lite might work enough)

Erin Sheldon - Parent advocacy and assistive technology
  • When children as old enough, use person centered planning.  You bring the focus onto what is important to the child (now and future) and bring their peers in to help identify the issues and solutions.
  • The purpose of assistive technology is to create a match between our biology, environment and the contexts which we need to function.
  • Paras, generic support and hand over hand are just bandaids in achieving all the things the other kids are doing.  Once the child ages out of school, those supports aren't there.  Finding a way to create independence is key.
  • I love her 3rd rule of assistive technology - Our kids time is valuable.  Lets not waste it.  Yes!!!!!
  • The access barriers that are a nature of the disability are intrinsic and can be solved with a mix of human resources (teacher, therapist, peers, older/younger students, etc) and technology (high and light tech).
  • Opportunity barriers cannot be removed by assistive technology and need to be problem solved by the IEP team.
  • "How can we do this?" and "What would it take to..." are great phrases to use!
  • Separate the cognitive task from the sensory-motor act.
  • Need an IEP goal for the task and then you match the tool to the task
  • Assess each of the following areas to identify strengths and weaknesses: communication, cognition, physical abilities, sensory, attention, affect and medical needs.  These can give you very valuable insight as to what types of supports will be most useful.  It's essential to have clarity about the nature of the barriers and that is what this can help do.
  • Most important take away for me: There are red tasks (requires high cognitive engagement) and green tasks (require low cognitive engagement).  With red tasks you MUST pair a green tool so that cognitive engagement is reserved and available for the task not the tool.  With green tasks you can use a red tool.  Don't mix hard with hard!  Example: Spelling test, don't have child who has a hard time writing use a pencil to write when spelling the words alone is complex for the child.
  • Recommended a few apps, not all of which are applicable to Sweet Pea: Pictello, AbilipadExplain Everything, WordToob, Animoto. Not an app we will be buying anytime soon, but she couldn't stop raving about it: Go Talk NOW.
  • Summary: "Effective advocacy leads to effective problem-solving.  The tool, the technology, should be the result of individualized problem-solving of specific barriers.  Tools require instruction until they become automatic.  Prioritize the tool that provides many supports over many tools that each provide one support."

There was so much more but hopefully that gives you a place to start!

Saturday, September 7, 2013

First Day of Soccer!

Sweet Pea had her firsts soccer game today.  She is playing in the youngest group of kids that are 4-5 years old.  They don't have set teams and call it Jamboree.  The first 30 minutes is for skills practice and the last 30 minutes is for scrimmages.  It is very cute to watch and Sweet Pea did a lot better than I expected.  She didn't participate in the scrimmage at all, but maybe next week she will.

Enjoy the overload of photos...

Getting ready to hit the field:
She is running and excited!  (almost dead center #4)
 The last one to huddle up, but making her way there...
Oh wait...maybe not...
Daddy, "Go back to the group" and Sweet Pea "No"
Everyone lined up:
Dribbling practice:
Trying to keep up with the group (coach is looking at her to his left)
She wanted to practice putting her foot on top of the ball, but needs help balancing to do that skill:
Angel wanted to be on the field too so she wasn't so happy:
There is room for improvement, but we survived the first day.  Think good thoughts next Saturday!

Tuesday, September 3, 2013

Sweet Pea is Drawing!

Last week Sweet Pea was drawing with sidewalk chalk and said "moon"  and sure enough...there was a drawing of a crescent moon!

Then today, as we were driving home from dropping off Angel's blanket at preschool, Sweet Pea was drawing on her magna doodle in the backseat. I heard her say "apple" and for some reason I decided to pull over and have her show me. When she turned it towards me I couldn't believe my eyes!  Here is what she drew:

Now I have no idea if this was on purpose or if she was just drawing randomly and noticed that it looked like an apple, but either way I will take it!  It was only a few months ago that she started labeling what she was drawing even though there wasn't any obvious correlation to the untrained eye to what she said and what was drawn. Random scribbles are normally "birds" and I was still proud because it showed progress. Now I'm even more proud of my Sweet Pea!

Her first day of school treated her and mommy well!  Can only imagine what this year is going to bring!