Is Downs Syndrome really a severe burden?

an educator of children with special needs and as a parent of a child with Down’s Syndrome, this topic tore at my heart.

Why is a person with Down’s Syndrome considered to be so dreadful to the world? Sally Phillips in her documentary, A World without Down’s Syndrome, BBC 2016, highlighted several key points for society to consider including what kind of society are we that wants to abort these fetuses right up until birth? Why is it socially acceptable to do this?

Facts in the UK on DS  (I don’t have Australian data):

  • In the UK 9/10 women choose to terminate a fetus with DS
  • Screening was introduced in the UK 30 years ago with no public discussion – there has never been a public ethical debate on the issue.
  • A new NIPT screening test developed by Lyn Chitty at the Greater Ormond St Hospital gives testing for DS 99% accuracy (more ‘choice’?). This test formerly available to private patients only, is to be rolled out under the NHS described as “the most exciting development in pregnancy care for decades …”
  • A medical description given to parents on DS lists ALL that could possibly go wrong. How about giving the same list to EVERY prospective parent!!!
  • Mothers are given a very grey picture: DS was described by a Professor (fetal medicine expert) “For some people having a child with DS is an intolerable event ….. a burden to the family and society which will last for a long time ….”
  • Comments from a person with DS: “Who is perfect? We have lives just like everyone else.” This person because she has DS, has to justify her existence.  DS is NOT a disease.
  • Counselling services do not have up-to-date advice to give prospective mums on their diagnosis. They listen and then ask the person how do they think they can cope?
  • When a parent spoke from her heart about her journey with her DS child including her second pregnancy and the pressure she was under for testing to a room of nurses and midwives, every single person cried.

 

How do we change society’s fear and the people who tell prospective parents their child will be a burden? By education. For people born with DS, it is not the end of the world for them!  They love life, they love people and they appreciate any opportunity which comes their way.

This whole issue is very close to me as I received the same pressure in my second pregnancy when I was expecting twins and one was identified as DS. I was offered genetic counselling and the ‘choice’ to abort the DS twin. Again, at labour, I was reminded, “this child will be a huge burden for the rest of your life. We can deny him oxygen …. “(my twins were both prematurely born so needed to be in a premi-crib for 6 weeks).  My third pregnancy resulted in pressure for testing as ‘I already had one child with a disability.’

When we live our lives in a way that we consider some people less worthy to live because of some ‘defect’, or a fear of what might be, we are not appreciating the  existence of that person as a living being, an atma, the person residing within the body, a person with the same feelings and dreams as any of us – yes they are different, but so are we all.  Prospective parents need support and reassurance that their journey will be somewhat different but nonetheless their child will be loved and cherised as any other child.  And just as it takes a village to raise any child, it takes a society to support these individuals in their life’s journey.   If we are looking to eradicate people born with Downs Syndrome, where does it end?  What about people with other disabilities? What about a person with an acquired disability?  What about the elderly? At some point or another, we are all going to be a burden on society. What kind of society or world do we want?

 

Teaching Practical Money Skills

Looking for real life learning on money for a class, I came across this fantastic resources at Practical Money Skills.  All resources are free and download as workbooks as well as accompanying PPTs.  Resources are available for Primary and Secondary, as well as special needs.

Resources for students with Down Syndrome and Autism

Looking for resources to teach special needs children, found the following which are going to be added to my essential classroom materials.

Sparkle Box: great selection of early primary resources for literacy, numeracy, signs and labels, resources for themes (role play, everyday life, living things, weather and seasons, places etc), classroom management tools, editable resources.

do2learn: Ahuge selection of resources for games, songs, communication cards, print resources and information for special needs.

The Learning Program: It is necessary to register for these resources, no charge though.  Great selection of literacy, maths and daily living resources for young Down Syndrome learners from early intervention to primary.  Literacy resources here are free, word cards and booklets can be printed free of charge. Level 2 readers need to be purchases.

I was particularly inspired by the research that had been done by Natalie Hale and have learned a lot about how Down Syndrome children can learn to read, using the correct instruction.  I’m reprinting this valuable information below for the benefit of special education teachers, general teachers and parents.  Thank you so much Natalie!  Natalie has additional resources available at Special Reads for Special Needs.

The following is taken from Special Reads for Special Needs.

HOW TO MOTIVATE YOUR STUDENT WITH DOWN SYNDROME TO READ

This one’s easy. We work with whatever floats their boat, whatever fires their jets. What do I mean by that? We begin to teach reading by focusing on topics that they care about more than anything in the world, and work from there.

Particularly with learners who have a reputation for being strong willed (what, my child?) it’s essential to hook their motivation. It’s not an exaggeration to say that engaging motivation is a prerequisite for teaching your learner with Down syndrome to read.

Our children have enough challenges before them; to struggle to read about things which do not interest them in the least is counter-productive. We want to hone in on their absolute favorite things on the planet and work with reading from there.

Are you ready? Good!

We begin by making an “A” list. Start your project by listing three items in each of these categories:

  1. favorite people/family members/pets
  2. favorite foods
  3. favorite toys/ activities/sports.

Your list of 9 topics will vary greatly depending on the age of your learner. Once you’ve completed your list, you’re armed with 9 different routes to the heart of your learner’s reading motivation.

So now what?

Now you begin. This plan, which is research-based and respected as best practice for teaching individuals with Down syndrome to read (regardless of age!), begins with sight words coupled with personal books.

Head to your nearest office supply store and stock up on the following simple items:

1. 5” x 8” blank index cards for making flash cards (if you can’t find blank, use the reverse side of lined index cards)

2. A ream of 110# card stock paper, white (for printing your books)

3. Several red markers: broad or chisel-tipped (for making flash cards)

Your job will be easiest if you have access to a computer and a printer, and I’ll assume you do as we progress through this reading process. But if you don’t, you’ll just write everything by hand.

With your Hot Topic List and your office supplies in hand, you’re going to write your first book.

For this exercise, I’m going to assume that you have an emergent or beginning reader as a student. If your learner is more advanced, simply write your reading books at a more advanced level.

1. Write the text for your first reading book. For a beginning reader, try to limit yourself to a vocabulary list of only 10-15 words. Here is an example of what you might do; keep in mind that each short sentence occupies a page all by itself. I am Joseph. I love my Mama. I love my Daddy. I love Sarah. I love my family. The End. After each short sentence page, the next page turn will reveal a picture all by itself: pictures will be of Joseph, then Mama & Joseph, then Daddy & Joseph, then Sarah & Joseph, then a picture of the whole family. Kids love “The End,” because it gives them a feeling of reading accomplishment and success, so teach those words from the beginning. With this example, you’ve got a total of 11 vocabulary words. Perfect for your first book.

2. Create flash cards for all the words, using your index cards and the red marker. The most effective reading method for learners with Down syndrome uses large red letters, so make your words as large as possible on your 5” x 8” cards. Either print them or computer in red ink, or use your red markers and try to make the letters as uniform and well-formed as you can. You’re after visual clarity, so keep that in mind.

3. Take photos which correspond to your text (digital camera is most convenient if you have one), or use magazine cut-outs if appropriate.

4. Write the text on your computer and print it, with these guidelines:

a. Set the page setup as landscape
b. Use 70 to 100 point type, black ink
c. Use the 110# index paper stock you’ve bought
d. Print only one short sentence to a page
e. Assemble your book with NOTHING ever on the left page when you’re looking at a double-    spread.The best way to bind it is to take it to an office supply store/kinko’s/etc and ask for “plastic coil binding.” Don’t use “comb binding.” It lasts about 5 minutes in the hands of a child before coming apart.
f. Assemble it in this way:

1. text page on right side page
2. turn the page
3. picture page illustrating the previous text, on right side page also
4. turn the page
5. next text page, right side page
6. turn the page
7. next picture page illustrating the previous text, right side page again
8. etc.

So this is what we’re doing: we are creating a book which is Hot Topic for your learner with Down syndrome, a reading book which is highly motivating and personal. We’re coupling that with your learner’s first reading vocabulary. And we’re going to use the fastest, most effective method for teaching those sight words.

And what’s that method? We call it Fast Flash. It’s simple, astonishingly effective, and has a decades-old track record of success.

Here it is: divide your flash cards into groups of 5 or so; show each set 3-4 times to your learner, calling out the words as you move the cards at a rate of approximately one per second. There are brain-based reasons which support this method, and we’ll cover that in another lesson. But for now, just try it and you’ll believe it!

Then read the book to your learner and enjoy it together. End by showing/calling out the flash cards again, 3 or 4 times in a row, as before. End of session!

A frequent question is: “Does my student have to repeat the word aloud as I flash them?” No. The only requirement is that they look at the cards and listen as you say the word.

As your learner begins to be able to recognize the words, encourage him/her to read the words aloud. Eventually you’ll have an independent reader for this book, and that’s just the beginning.

Many parents and educators have made the amazing discovery that, using this reading method, their learners with Down syndrome grasp and retain all the vocabulary words in as little as a few weeks’ time. When this happens, motivation and excitement are so high that your learner gets on the reading fast track and, with continued reading support, just keeps going.

We love to see what you’ve created; so if you feel inspired to send us a photo of your child and his/her reading book, please do!

IT’S NEVER TOO LATE TO LEARN TO READ
When You Have Down Syndrome

I could give you an official quote from a highly respected research source to back up this claim, and I certainly will later in this article.

But I want to start with the story a young man I’ll call Brian.

A recent transplant from out of state, Brian arrived at my tutoring doorstep nearing his 12th birthday. He was standing at my door only because he had missed the boat. That elusive reading boat had somehow passed him right by.

He could read only a few color words and the names of his former classmates, the latter skill sadly being of no use whatever in his new home in California.

In addition to Down syndrome, Brian had just a touch of OCD (Obsessive Compulsive Disorder), and basically had only one interest in life: emergencies. Ambulances, hospitals, and “Call 911!” floated his boat, big time.

These restrictions and his disinterest in reading not withstanding, his parents ached for Brian to be able to read. So here he was.

My method with our learners with Down syndrome, regardless of age, is to begin teaching reading by focusing laser-like on what interests them most.

Many years ago, I did that with my own son Jonathan (now 24), who also has Down syndrome. At age 5, I made his first book, “Spaghetti,” because it was his Number One Favorite Food in the universe. Within two weeks, he had learned the eleven vocabulary words in the book, and could read the homemade picture-less book perfectly. I continued the method and creating homemade books, and he was soon off and running as a reader.

But back to our friend Brian.

I created personal reading books for Brian built exclusively around emergencies. I downloaded internet images of stethoscopes, blook pressure cuffs, wheechairs, you name it – all those things that made him sit up and take notice with eyes wide open.

I knew that this was the way in, the way to hook him, and I was prepared to make these books ‘till the cows came home, until I could reel him in and land “Brian The Reader.” I didn’t care how long it took.

After several months of this, one day Brian arrived for his lesson and noticed—for the first time—a stack of early reading books I designed and use with my other students. These books had always been close by, and Brian had always ignored them. But not today. Today he grabbed several of them and plopped them on the worktable.

“These!” he announced. I was nearly speechless. “Brian, you want to read those books?”

“Yes!” he yelled.

Veeery carefully, treading gently lest I shatter this amazing moment, I led him through reading the books. When we finished, he pushed his chair back from the table. “MORE!” he yelled.

“You want more books like these, Brian?” I was stunned.

“YES!”

And we were off and running. I felt like high-fiveing Helen Keller’s Annie Sullivan. Dude! Within weeks, his mother reported, “Brian came home from the school library today with books on volcanoes and Native Americans!” Who knew?

And that was how Brian The Reader was born. There are many other stories, of course, from many other teachers, but this one remains my favorite.

Now for the official research quote I promised you…This is from Sue Buckley, head researcher and director of Downs Ed International, and can be found in their series, Teaching Reading and Writing to Individuals with Down Syndrome:

“It is always too early to say that children, young people, or adults cannot learn to read…children with Down syndrome can ‘take off’ with reading at any age.”

She further states, “Almost all children with Down syndrome are capable of reaching a level of reading achievement that will be functionally useful if we, their parents and teachers, believe that this is possible and steadily help them to progress.”

Well said! And repeatedly proven to be true. It’s NEVER too late to learn to read!


Read the words

readthewords.jpg

Thanks to Kate Olsen for the lead to Read the Words, a text to audio site that enables users to have text read out by computer voices.  Once you create a free account you can then upload your document for reading and it will convert the text to an audio file.      Once your recordings are saved they can be downloaded as mp3 files or even embedded in a blog.

This is a useful resource for education.  I see its value in downloading text files such as lecture notes, revision notes and study material to an ipod.   The user can then listen as they travel, exercise or whatever.  This is a great easy way to prepare for exams and no-one will know you are studying!  Make sure the notes are not too abbreviated as the computer readers will have difficulty with abbreviations such as ‘eg’ (better to type the word ‘example’ for the reader).  You can slow the voice reader down and select from a variety of voices for your reading.

This is also a great resource for visually impaired learners and therefore has potential in the special education environment. 

To record, after opening an account, click on create a new reading, select your document type (such as Word or PDF), upload the file and follow the instructions for converting.  (Note: It will not accept Word 2007, so convert to 2003 before saving).  Once you have your recording made, you can click on download to mp3.  If when you do this you get the reading only and no download happening (which is what happened to me) follow the directions that the nice people at Read the Words sent to me:

readthewords2.jpg

Simply click the download mp3 button.  Some browsers are set up to just play the reading.  IF you are having this problem, right click the download button, and choose save as.  You can then specify the location where you want to save the mp3.  You can save it to your computer, and then put it on your ipod, save it in itunes, or plug in your ipod and save it directly on there.

I am always pleasantly surprised that there are real people who offer great support for tools that are available on the Web.  I wish some customer service reps were as helpful.

Click the play button to hear Michael, a computer reader from Read the Words reading this post.

Meeting needs: special education learners

Although I have worked in a mainstream school with a group of special learners, this is my first experience in a dedicated special needs environment.  Students have varying needs from low to high.   The challenge for me is to integrate my new found skills to enhance students learning.   I love wikis, blogs, del.ic.ious, twitter and all the resources I come across via my educational networks which totally enrich learning.  My head becomes full with ideas and the potential of all these tools. However,  I am keeping in mind the wise words that I have heard from my teaching buddies (online):  to take baby steps!

My first baby step: to get a computer facility up and running. This felt like a huge endeavour.  I wanted a working space with about five computers.  My goal was to run a technology class for seniors.   It involved borrowing tables from other rooms, sourcing unused computers within the school, putting them together, and the frustration of realising some of them were so old, had no operating systems on, were blocked for use and so on … It took weeks.     As most other schools would have experienced, having computers in the school is not enough, it requires a team effort between teachers, administrators and the powers that be to get them up and running to standard.

My second baby step is to introduce unitiated teachers to wikis, the special needs resources wiki I have put together for their use and samples of what other students in schools are doing such as Anne’s ejourney with technokidsMy third baby step is to introduce the idea of senior students being involved in preparing their own digital portfolios, hopfully as a blog.