DSR Episode #27: Inclusive Practices with Michael Remus

DSR Episode #27: Inclusive Practices with Michael Remus
Michael Remus is an expert on inclusion.  He is a parent of two children with special needs.  He has been a teacher and has written several books.  But most importantly (to me anyway), he took an entire school district into the world of full inclusion in 5 years.  Not only that, but it is showing great results and he has the data to prove it.  Michael was a super guest and told us lots of important information we can use to better the education of our children.  What a resource for the rest of us!
We learned about what inclusion means.  Inclusion means including EVERYONE in the main classroom.  However, some children will require additional support (modifications and/or accommodations).   This means that your child may need extra help in the classroom.  It may also mean that your child will work from modified materials while in the classroom.  It DOES NOT mean throwing a child in the classroom without the proper supports.

DSR Episode #26: 321Foundation & IEPs!

Just a catchup episode here to keep you up to date.
First we did a quick wrap up on World Down Syndrome Day (March 21).  Then we jumped into the newest and coolest Ds Organization – the 321Foundation.  This new organization was started by a group of families in Delaware – One of which was our very own Rick Kosmalski!  Go Rick and friends!  Check them out at their site and go and like them on Facebook.  Check out the pictures of their kickoff gala on WDSD and while you are there, buy a T-shirt!

Then we simply gave a ‘kid by kid’ update on the IEP process.

• Dexter (~3yrs) is just entering the school system.  Jason had their IEP but they are already in a private preschool and getting some private therapy so it was pretty low key.
• Luke (5 yrs) is ready to go to Kindergarten.  Mark is worried about inclusion and the fact that there is only one teacher for ~25 kids. Luke will likely need some in-class support (an aide).  When you want more than they are willing to give – that is when IEP meetings are tense.  Our plan – bring food! (we actually give more advice in the episode – you should listen…)
• Kayla (7 yrs) is in second grade – To Rick, the whole thing is dependent on the teacher – a good teacher means Kayla will have good year.  At this point the IEP is really a update from the previous year with improvements based on lessons learned.

Here are some lessons learned:

• In general as husbands, we take on the role of ‘bad cop.’
• It is best to ‘go in with a plan’ – in other words, know what services you want in advance.
• The teacher is crucial.
• If you feel that the situation/services set up is not working for your child, intervene IMMEDIATELY.  A ‘wait and see’ or ‘just give it a few months’ is just a bad idea.  You can quickly miss a half a year this way…

If you are looking for a good cause, our first ever DSR guest from waaay back in Episode 3, Dan Moreno, is running a 50K (that’s 31 miles!) in the mountains and desert(!) this weekend.  Show him some love and donate a few bucks to support Research Down Syndrome.
Sorry we haven’t had an episode in a while.  We have two great guests lined up, but we have had bad luck coordinating schedules.  We will keep the episodes coming – don’t worry…
Download Down Syndrome Radio, Episode #26.
Better yet…subscribe, rate us and leave a comment on iTunes!

DSR Episode #25: DS Connect with Lisa Kaeser

The new DS Registry will provide huge opportunities to improve the lives of our children! We had the opportunity to speak with Lisa Kaeser about DS Connect which launched in September.  Just listen to the list of potential benefits that will come out of this important new registry:

• Help connect people with DS to scientists who study DS.
• Speed up research in DS by collecting information that scientists can use.
• Help scientists learn why people with DS have different symptoms.
• Help health care professionals improve how they treat people with DS.
• Advance understanding about how and why certain treatments work and don’t work.
• Help scientists develop and test new treatments for people with DS

Get excited people!  These are serious benefits for our loved ones!  Signing up only takes a few minutes – both Rick and I did it.  Also, you get access to awesome demographic data on children with DS.

Lisa Kaeser is the Director of Legislation and Public Policy for the Eunice Kennedy Shriver National Institute of Child Health and Human Development.  Lisa was a wonderful guest and told us ALL about it.  We went over the history of the effort and the development of the registry as well as the types of data it will contain.  The uses relate directly to the goals listed above.
One really big issue was privacy.  This is important to many folks so we went through this thoroughly.  The contact data is kept completely separate from the actual data.  Researchers can see the registry contents by category, but can never find out information about a specific individual.  Registrants can ‘opt in’ to be contacted under specific circumstances such as a medical discovery or to potentially be part of a research trial.  Rick and I both filled it out and I for one thought it felt really safe.
Go and register – it is quick and easy, we promise:

Oh and while you are in a good mood, go to iTunes and look us up.  Click subscribe and give us a good review.
Thanks,
Mark
Download Down Syndrome Radio, Episode #25.
Better yet…subscribe, rate us and leave a comment on iTunes!

DSR Episode #19: Happy World Down Syndrome Day!

We got the band back together for a quick roundup of events happening in celebration of World Down Syndrome Day on 3/21.  Much like the podcast, this write up is going to be short and sweet.

To celebrate, you can:

• Attend (either in person or virtually) the World Down Syndrome Day Conference at the UN in New York.  Our tireless superhuman cohort, Rick, and his amazing daughter, Kayla, will be there.
• This year’s conference theme is “Right To Work”.  Check out this awesome video and share it in all of your social spaces.
• Wear lots of socks to get people talking and raise awareness for Down syndrome.
• Learn about the research programs and clinical trials in the DS Cognition Research 101: An Introduction webinar put on by DSRTF.
• Support cognition research by donating to DSRTF and have your donation matched three to one.  Only on March 21, your $100 donation becomes $400 in celebration of World Down Syndrome Day!!
• Do something in your local community.  There are tons of events happening all across the globe!
• Lobby Google to use the World Down Syndrome Day Google Doodle on March 21st.
• Get the word out to all of your friends through your social media connections.
• Keep an eye on Parents.com for a guest post by someone you may recognize.  :)

Most of all, make your voice heard.  The best way to raise awareness is to celebrate the people in your life who have Down syndrome.  Show the world what it means and how people with Down syndrome play a vital role in our communities.
Happy World Down Syndrome Day!
Download Down Syndrome Radio, Episode #19.
Better yet…subscribe, rate us and leave a comment on iTunes!

New espisodes from the DSR Podcast

from the Down Syndrome Radio Podcast:
New espisodes are available on iTunes from Down Syndrome Radio. Down Syndrome Daily is featured in episode #6 and the NDSC Convention is freatured in episode #7.

DSR Episode #7: NDSC Convention Download Running on fumes and adrenaline, we recap the highlights of the NDSC Convention from a very busy weekend in Washington, DC.  From advocating on Capitol Hill to dancing the night away – with workshops, exhibits, hallway and pool meetings in … Continue reading →

DSR Episode #6: Down Syndrome  In the first few installments of this humble podcast, we found ourselves continuously visiting one site for ideas for our “great/amazing/inspirational story” segment.  Down Syndrome Daily is an excellent resource for the Down syndrome community and we are very excited … Continue reading →

Episodes on iTunes: http://itunes.apple.com/us/podcast/downrightawesome-down-syndrome/id535852575

Introducing the Down Syndrome Radio Podcast!

from Down Syndrome Radio's Introduction:

When my friend, Mark – fellow Down Right Awesome dad and a podcast veteran – noted the lack of regular podcasts about DS and suggested that we just do our own, I jumped at the chance….well, I was a little hesitant at first, but with a bit of arm twisting, Down Syndrome Radio was born!

We are doing the DSR podcast to share our stories about parenting children with Down syndrome – from a dad’s perspective.  We are definitely not experts, but hope that we can help other parents going through similar experiences.

At this point, we have recorded four episodes and plan to continue to try to record about once per week, shooting for about an hour per episode.  We would love to incorporate guests as we progress and the topic allows (less work for us!).  We have a pretty good grasp of the format for the show, but we will continue to experiment as we go forward.  Please, feel free to leave comments or send us email – let us know what works or doesn’t, tell us your story, ask us questions….anything!  Enjoy!

• iTunes Listing: http://itunes.apple.com/us/podcast/downrightawesome-down-syndrome/id535852575

Podcast Episodes:

• DSR Episode #1: Getting the News

• DSR Episode #2: Telling Family and Friends / Common Medical Conditions

• DSR Episode #3: Essential DS Resources

• DSR Episode #4: Special Needs Advocacy