I wish I could say last week away from the blog was productive and full of exercise, cleaning, writing, and fun family adventures. In reality, it was a busy week at work and I fueled myself with leftover Halloween candy, causing me to fall asleep every evening after putting Hannah to bed and wake up sometime between 8:30 and 9:30 pm in a total haze.
I was dying for this particular week to end because I was looking forward to attending the CDSC’s Annual Convention. My parents came up to join me while Pete and his mom tag-teamed watching Hannah. The convention was great and made me very excited to attend a national one in the coming years.
The schedule was broken up into 3 sessions with 5-6 different program options, two were held before lunch and the Keynote speaker and the third was after lunch. At the very end of the day the older kids with Ds presented the posters they worked on during their Self Advocate sessions. The day ended with a presentation by Mark Hublar.
10 Things Every Parent Should Know about Birth to Three – tips on effective ways to deal with disagreements or an unresponsive B23 team. The moral of the presentation was to check B on your IFSP if you don’t agree with it and your team has 30 days to resolve.
The IEP is the Key to Effective Services – main message was most IEP’s are significantly flawed and that parents must hold teachers to higher standards of accountability
Mindfulness, “Learning to Surf Life’s Waves” – total bust, it turned into a mini-therapy session with 10 minutes of meditation techniques
American Academy Pediatric Guideline Review – detailed overview of every area where a child with Down syndrome needs health supervision based on consensus recommendations of a panel of AAP geneticists and pediatricians
Amy Allison, Executive Director of the Down Syndrome Guild of Greater Kansas City. See recap after the break.
Planning for the Future of Your Child with Special Needs – an overwhelming amount of information on how to plan for Hannah’s financial future
Knowing the Red Flags of Vision and Learning – evaluation by an ophthalmologist is “better” than seeing an optometrist, but strongly recommended an optometrist with experience in behavioral and developmental vision care
Presentations by Self Advocates
Most people left before this but I wanted to stay to show support and get an idea of what the life of a teen with Ds is all about (basically friends, school, Taylor Swift).
Presentation by Mark Hublar
At 51 years old Mark is an amazing self advocate. He lives on his own, drives a moped and car, has a job, and travels the country to speak, lobby, and campaign for Down syndrome awareness.
Amy Allison’s presentation focused on how to build your tribe and touched on getting through IEPs, and how to raise a strong self advocate.
Build your Tribe
Drain your moat – don’t put yourself on an island
Teach by example – using People First language, etc.
Provide strategies – help your tribe
Check ego at the door – what you want might not be best for your child
Give second chances – but third chances are rare
Focus on today & don’t borrow trouble
Make & share your long range vision
Make friends with your neighbors before you need them for an emergency
If you want people to support your child, you need to support their children also
Make an “All About Me” book
Bring treats and a picture of your child
Are you making extra work for them?
Celebrate successes together
360* approach to behavior
Find the professional who wants your child
Have an exit strategy when trying new things
Volunteer and join PTA
Raising a Happy & Strong Self Advocate
Develop good social skills and coping skills
Ask for help and make mistakes
Have disabled and typical friends
Set bar high
Recognize potential & challenge them
Break the prompt, praise, and reward cycle