Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts

Sunday, June 11, 2017

Special Olympics Summer Games 2017 Gymnastics



Wow!  Just WOW!  Yesterday was one of my favorite days of Sweet Pea's life!




She turned 8 in March which meant that she was eligible to participate and compete in the Special Olympics.  She has been asking to do gymnastics for a couple of years and we kept telling her...when you turn 8.  We are sure lucky that Special Olympics Southern California didn't decide to end gymnastics last year instead of this coming year!




The first weekend of March was her first practice with her Westside team.  Her coach, Natasha, is beyond amazing and all of the volunteers are incredible!  During this first practice Sweet Pea lasted about 30 minutes (out of the total 90 minute practice) before she was done.  The volunteers learned that she wants to do what she wants to do, when she wants to do it.  She had a meltdown when she got scared on the "high bar" (it is just slightly taller than Sweet Pea).  She needed to hold someone's hand every time she did the balance beam.  To say it was a challenging practice would be an understatement.  However, they were very encouraging and asked all sorts of questions to see how they could try things differently next time to try to get her to participate longer.  I told them that she didn't have a lot of endurance and so I really wasn't surprised with the 30 minutes that they got out of her, but that hopefully it would improve over time.


Well, fast forward to the end of the season, just 3 months later...Sweet Pea was participating in the entire 90 minutes of practice and doing amazing!  She would stay with her group.  She would wait her turn for various activities.  She had learned an entire floor routine.  She was having fun on the high bars (and we saw this carry over to her school playground too which was super awesome)!  She would do the balance beam without support!  And when she would bounce her way down the trampoline at the end of every practice, the smile on her face would light up the darkest room.  To say she loved gymnastics is an understatement!


Yesterday was the culmination of a hard and challenging season when her team got to compete in the Special Olympics Southern California Summer Olympics 2017.  I teared up numerous times during the event and watching all the competitors was so wonderful!  Talking to a variety of volunteers that have no direct tie to a person with special needs, but they give freely of their time and energy to allow this and many similar events happen for all of those with special needs.  To say we are blessed to be a part of this community is to put it lightly.

Here is a video I compiled of some of the excitement from yesterday:



Special Olympics Southern California has decided to stop offering gymnastics and switch to cheerleading.  We aren't sure what sport Sweet Pea will do in 2018, but I assure you, she will be doing something!  This program is so wonderful and I thank everyone who volunteered during the season, during the summer games, or donated money to Special Olympics at any point in their lives.  I highly encourage everyone to find your local chapter and cheer on the athletes at their next competition!


Sweet Pea, we are all so incredibly proud of you and all that you continue to persevere through.  You are a special light in all our lives and we promise to keep giving you opportunities to shine for the world to see!  We love you!!!!!

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 http://sda.doe.louisiana.gov/ResourceFiles/IEP/IEP%20Makeover%20LADOEl%5BHO%5D.pdf
  • 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!

Wednesday, August 25, 2010

New Parents should read this

I have been doing a lot of thinking since our local DS support group meeting last Wednesday night.  You see, this meeting had a very small turn out of only 6 families total, and yet 2 of those were new families.  And I mean NEW!  One husband and wife have a 4 week old little girl (saw a photo and she is just precious!) and another gal was there with her 3 week old little boy.  I was lucky enough to actually hold this little boy and my goodness did it feel like forever since Sweet Pea was that size!  He was so sweet and just slept so peacefully in my arms.  Anyway, back to the point...having these new families there caused the conversation to be very different than in recent meetings when we haven't had new families.  We were there to answer any and all questions that these new families had and they had a lot of great questions.  Sitting there talking with them it started to dawn on me...that was me 15 months ago when I attended my first meeting!  I was the one super nervous about what were therapies like, what was the future going to be like for our children, how did we speak about it, etc.  Now I was actually the one helping them know that everything was going to be okay.

I have often felt that on the road to total acceptance I am probably at 70% or 80%.  I have felt that I've been stuck at that spot for the past 9 months.  Wednesday night made me realize that either I wasn't at 70% 9 months ago yet or I'm now at 90%!  It was amazing to be able to honestly tell these new families that everything really would be okay.  One gal was funny and shared that when she tells people about her son they try to immediately tell her that it will be okay.  She says, "yes, it will, but it still SUCKS".  It made me laugh because I felt the same way that she does in that I knew deep down that it would eventually be okay, but having a child born with a disability does suck in that it wasn't what you were anticipating and didn't fit the picture of the perfect child in your head.  However, today I don't feel the same level of suckiness (new word) when I think about Sweet Pea's diagnosis.  I still wish that she didn't have DS because it would make her life a lot easier (and heck, ours too), but I know that she wouldn't be the same adorable little girl if she didn't.  I do believe that the extra chromosome had a major impact on her personality and not just her cognitive and physical attributes.  She probably would have been adorable in her own right if she were typical, but she would definitely be different and this particular little girl has stolen my heart completely.   I remember not feeling very connected to her for many, many months.  I worried that I never would feel for her as I expected to feel for a daughter.  I don't know when it happened, but that has definitely changed and I couldn't be happier about it!  She certainly deserves a mommy fully in love with her and heck, I deserve to have a daughter that I love so much that I would do anything for.

Here is a very sad secret that I will share...there were many times in those early weeks and months that I actually wished that she had some serious illness that would take her from us!  Now just thinking that thought makes tears stream down my face (I need a waterproof keyboard), but I did have those thoughts at times.  Just having those thoughts made me feel like the worst mother ever, but I couldn't change that I had them and I just tried to be honest with myself about them.  Now I would fight to my death to keep her from anything that might take her from us!  Back then I hoped that this day would come, but I honestly had no idea if it would.  I am so elated to be able to share that I felt that way because there is no way that I would have shared that if I felt that way at all anymore.

16 months and I'm still not 100% there, but wow, I'm still making good progress!  It took these new parents to be so open to sharing their fears and concerns for me to realize that I am not there anymore.

To any new parent that might be reading this, have faith that it really will get better and easier.
  • Give yourself time to adjust to the diagnosis and how it will impact your life.  It will impact your life, there is no way around it!  But it isn't a fraction as bad as I imagined initially.  
  • Give yourself time to grief the loss of the child that you thought you were going to have.  I am sure there are some people out there that have always hoped that they would have a child with DS because they knew someone very dear to them with DS, but I certainly didn't and I had 31 years of picturing my children in my head and Sweet Pea is not what I pictured even once.  To grieve that loss is natural and actually healing.  Here is a great article that I posted in a prior post: http://www.pediatricservices.com/prof/prof-15.htm
  • Get involved with a local DS support group or make virtual friends with a DS mommy via blogland.  Blogs have provided me an amazing glimpse into others homes and I believe played a huge role in my progress.  Through blogs you can see older children with DS doing many of the things that I feared my daughter would never be able to do.  Through blogs you can meet other kids around your child's age and see how they handle issues and share successes.  However, be careful that you don't read blogs of children with severe medical issues early on.  Even typical kids can have serious health issues, but you don't need to be fighting more battles emotionally and I know with me, if I read about someone else's problems, I spend time worrying about them.  Stick to the healthier blogs at least until you get your feet under you.
  • Give yourself the space to feel negative thoughts.  Maybe journal or share them with a very close friend.  This blog was my attempt at getting feelings off my chest and the funny thing is, I think I started to feel better about Sweet Pea when I started this blog.  It gave me a forum to share all that I do love about her.  I started looking for positive things to share with family and friends and those new friends from blogland.  A blog isn't for everyone, but even a weekly letter to a distant relative might give you the same push that this did for me.  But allow yourself to feel the wide variety of feelings that you might be feeling.
  • If you already feel pretty good or even better, congratulate yourself!  Don't worry if you feel like you fall backwards a bit at times because it is very normal.
  • Congratulations on your new baby!!!!!  I couldn't hear those words without cringing for a long time, but you deserve congratulations because your baby truly is a very special baby and you will love him/her with all your heart soon enough.