John Marrs - An Inspiring Young Man With Down Syndrome

Over 4.5 years ago, after we received K's diagnosis of Down syndrome, I went on a long research binge.  Most of what I read was " They will reach their milestones in their own time."  I just could not be content with that, & thought there had to be something more.  I searched what seemed to be the furthest darkest corners of the internet scrounging up any piece of information I could find before I found a few kids with Down syndrome that I would consider to be truly inspirational.  Perhaps the stories were there, but I just found it difficult to find them.  At first the few stories I found seemed to good to be true, but they got me researching more & believing that perhaps there was more that I could do than to just wait for my daughter to do things " in her own time."

One of the first truly inspiring kids I learned about is John Marrs.  Although I have never met this family, I will always be grateful for that first glimpse of hope that I got when reading their website.

Here is a link: John Marr`s page Make sure you check out the whole site. It's full  of information & John's poem is wonderful! TNI & a neurodevelopmental program as well as a loving family with high expectations have contributed to John's development.

The reason that I thought to post this is that John's name has come up recently on the internet because he is being inducted into the National Honor Society. Check out Got Down syndrome`s blog for the story.

Spring On The Farm - Isn't he adorable?

This little guy was about 6 hours old when this was taken.  It was quite the spring storm.  Look at the size of some of the snowflakes!

More Questions From Readers

 I was so happy when I came across your blog tonight.  We live in _____ and currently there is little information out here on teaching reading to young kids with DS.  I was just wondering how many flash cards do you think I start with and do I use the same cards until he is board with them or do you change every week?


When we first started teaching our daughter a few years ago, there was even less information!  Thankfully, people are realizing how well early sight word reading works with our kids so we are hearing more about it. When we first started doing flashcards, we did one set of about a dozen cards for 1 week, then switched to a whole new set.  We fast flashed them very quickly like in this blog post.

  http://downsyndromeupupupandaway.blogspot.ca/2011/05/fast-flashing-method.html

In order to fast flash them, they should be laminated.  This post has a few ways to do it:

http://downsyndromeupupupandaway.blogspot.ca/2011/08/laminating.html

A good book is Glenn Doman's How to Teach Your Baby to Read or How to Multiply your Baby's Intelligence - they are for older kids too.The 2nd book is the one that I have & also has information on other early learning programs besides reading.

In  his book, Glenn talks about adding new words & retiring old ones each day.  Perhaps this is ideal, but I am not organized enough, so that is why I chose to retire all of her words weekly.  I think it is better to have a system that is easy to implement & works with my schedule.

At the moment the only words our son says are mum, dad and car .  He is using a few signs. Any thoughts on showing him the word and the doing the sign.

We used sign language & it was very beneficial to our daughter. My only hesitation with signing, is that for some kids, if you teach them too many signs, they may not be motivated to speak because they can communicate enough with just signs. For sure I would teach essential signs like eat, more, drink, help, etc, but perhaps not too many.  Here is my post on my views on sign language:

http://downsyndromeupupupandaway.blogspot.ca/2011/02/my-views-on-sign-language.html

We did at times use words that she could sign or action words when reading, although we did tried to input only, not require output, so we did not require her to sign in response.  

I have just signed up to brill kids.  What are your thoughts on love and learning it other USA based program I've come across.

I think love & Learning, See & Learn, YBCR & some of the other early learning programs are good, but my dd outgrew them quickly.  BrillKids has so many files & has the ability to be completely customized, so it has worked with my daughter from reading single words to customized stories.  For example, last week I made her a book titled "I'm Going to Be a Ski Racer"  I was able to put in pics of her & her sisters skiing, racing going up chairlifts etc with longer sentences & my voice saying it on Little Reader.  My daughter loves family pictures so this is a perfect way to teach her - No other program can offer all that, plus a ready made curriculum if that suits your needs best.

You are aware of the BrillKids Special Needs discount right?

I have some reviews on the following page.  You may have to click on older posts at the bottom of the page to read them all.

http://downsyndromeupupupandaway.blogspot.ca/search/label/reading%20programs

Even though I like BrillKids best, check out the others in my reviews because there may be one that suits your family better.

I was also wondering if you have had success with toilet training your daughter?
Thanks in advance for your help.

We have been lucky that K was toilet trained by age 3.   She had the odd accident after that, but not often. She started preschool 3 months after her 3rd birthday & has never had an accident there.  We really didn't use any special techniques, although I find the Toilet training in 3 days type of program interesting.  You can google the directions - Miriam's Kauck's Einstein Syndrome has a good description with a progress diary of training her daughter too. 


and the next set of  questions from Robin:

My name is Robin and I found your blog by googling Down Syndrome.

My son was born with Down Syndrome in September 2011.

He is almost 6 months old now and I am starting to research using flashcards, word systems, your baby can read, love and learning and etc.

When I saw the video of your cutie reading I thought I would reach out to you. My question for you is... How did you begin with your daughter? What system did you use? How old was she when you started the basics with her?

You must be a very busy lady with four children! I hope you have a minute to respond. I would greatly appreciate it.

Sincerely,
Robin 

We started at around 6 months with very large flashcards with large red letters. It is important to use very large letters so babies can see them well before their eyes are able to focus well on small details.

By one year of age, we were using a bit smaller words & by about 12 months, we started with Love & Learning because at the time, it seemed to be the most commonly talked about  commercial program out there.

I did some reviews on reading programs on the following link. Make sure you click on older posts, as they take up more than 1 page.

http://downsyndromeupupupandaway.blogspot.ca/search/label/reading%20programs?m=0

Shortly after that, I was fortunate to stumble upon the BrillKids Little Reader (LR) program. I have tried quite a few programs, but stuck with LR because it is so easy to customize & is the only program that can still keep up with my daughter's reading ability. It has more ready made content than any other program that I know of & because I can customize it I can make a new story for any purpose. The latest example being a story about going to the dentist. Not only did she learn new vocabulary, but her trip to the dentist a week later went wonderfully because she was so well prepared. She doesn't really like strangers touching her (& it is probably good that she isn't too friendly with strangers) but the book prepared her for everything very well & she cooperated fully when having her teeth examined.

You can use this program as a computer program or use their print function to make your own cards. We used printed cards until very recently as it seemed like my dd learned much more quickly that way.

Here is a link to some info about their SN discount. Make sure you apply. It is VERY generous!


http://downsyndromeupupupandaway.blogspot.ca/2011/03/exciting-announcement-from-brillkids.html?m=0

The other thing that I think is very important, is to either have the computer flash the words very quickly or to fast flash printed cards like this:

http://downsyndromeupupupandaway.blogspot.ca/2011/05/fast-flashing-method.html?m=1

This one is also important:

http://downsyndromeupupupandaway.blogspot.ca/2011/08/laminating.html?m=1

You might also want to click on my important posts tab. Some of them will be helpful too.

Hope this helps. Please feel free to ask any other questions you may have.

Laura

"Just Keep Swimming"

"Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim."

This is what I have been doing for the month of March............. I`ve just been keeping my head above water. March is always like this for us. Our home has been a mad house.  We`ve packed from suitcase to suitcase & I am so glad to just be able to stuff my suitcase in the back corner of the closet & let it gather dust for a while. We haven't done much program at all for about 2 weeks now. I'm happy relieved to finally have a weekend at home now though & am looking forward to a quiet April. This week is spring break for my kids, & we haven't planned many activities - a trip to the pool, a rummage sale to buy books, a movie with a few friends to celebrate with my newest teenager for her birthday & that is about it - not a bad schedule for a 9 day holiday from school.

I think it is good to take occasional breaks from doing program.  Sometimes it is unplanned like this, but sometimes, I plan it that way so that we can take a breather & either just have a well earned break, or often so that I can catch up on everything that has fallen behind.

My other news is that I finally have found someone to help me do program with K! We have been looking for ages, & all of a sudden, we have 2 wonderful candidates! Within the next couple of weeks,I will have someone to help out for 10 hours per week - this will be huge!  Sometimes, we will do it program together with K to try to make it more fun & to encourage her to want to do her program.  During other activities, I will let my new helper work with her so that I can catch up on the many household projects that haven`t had as much attention as they should lately.  I am so excited!
  
I`m hoping to update on K`s skiing progress soon, but for now, just a very quick update. Her current new favorite books are just about anything by Robert Munsch. Tonight she read his Makeup Mess story to me before bed & she thought it was hilarious.  She`s been growing lately too - a lot!  More on that to come in another post too. Because we`ve been away a lot, K has had the chance to swim in lots of the hotel pools.  She regressed a little when we didn`t get to swim much this fall, but I`m pleased at how well she is gaining those skills back again.

That`s all for tonight, but I`m hoping to be able to start catching up on a whole list of unfinished blog posts that I got behind on during these last few really busy months.

Happy World Down Syndrome Day! 

I hope you & your family had a wonderful day!  It was kind of a quiet one around here.  My older girl's team made the provincial basketball playoffs - it was a huge feat to even qualify as we are probably the smallest school in our division!  I actually gave birth to 1/4 of our basketball & volleyball teams - 1/4 of the team means just 2 of the eight girls LOL!  We also just finished our regions finals in GS & Slalom ski racing, so we've really been packing from suitcase to suitcase lately.  We did have a couple of small celebrations though.

This afternoon, it was a beautiful, warm, sunny spring day, so K & I headed outside on the upper balcony of our house & had our own private tea party before her sisters got home. Then, later we had a blue & yellow cake with all of the family. Simple, but sweet, although I plan to try to do a little more next year.

Spread the Word to End the Word

 Spread The Word To End The Word day was on Wednesday.   I actually wrote this post a while ago, but I have revised it & am posting it again, because it really says what I think about the use of the "R" word.


Why is it considered okay, or even funny to use the "R" word?  How is it a joke to make fun of a group  of people who often can't defend themselves?

As parents, friends, & loved ones of people with developmental delays, we need to stand up for our loved ones.  It is not OK.  Any other group being discriminated against in this way would create such an uproar that the word would fall out of general use. We need to be the voice that stands up for our loved ones.

At the age of 4, my daughter does not understand about the "R" word.  Until she does, I will be her voice.  I have spoken out many times to help people realize why they shouldn't use the "R" word, but today I am putting a promise in writing to my daughter.  I hope you will join me in promising your loved one that you will stand up for them as well.

My promise to my daughter:

I will be outraged for you.

I will be strong enough to stand up & say "You cannot treat my daughter that way!"

I will gently correct our friends & loved ones who don't understand the true implication of their words.

I will explain to strangers why it isn't funny to make fun of those who are often unable to defend themselves.

My precious daughter, when you are old enough to understand the implication of this word, I will help you learn how to stand up for others who don't have a voice.

Love you,

XOXOXO

Mom

Questions about starting a reading program with a 5 year old.

I love checking in on your blog.  I have a just-turned-five-year-old (yesterday), Erin, with Down syndrome.  I also have 6 older children and 1 younger son.  I would like to begin a reading program for Erin.  She knows all her letters and a few words.  I signed up for the Brill Kids free trial.  I like it, but have a few questions for you, if you don’t mind me asking.  No hurry....I know you are a buys mom, like me .

1)  I prefer flashcards I can hold in my hand to flashing on a computer screen.  Do you find a benefit to the computer screen method, or would hand-held cards work just as well, in your opinion?

I preferred flashcards as well & as a matter of fact, K didn't like TV or computer programs as well & didn't seem to learn as quickly from them.  We used laminated card stock flashcards until she was about 3.5 years old when we finally made the transition to using Little Reader as a computer program only.  In fact, until K was 3 years old, we included a picture on the back of almost every flashcard because she did not like word only flashcards.  The odd one we didn't do this with, but usually that was because it was difficult to describe with a picture.  After age 3, this was harder as we started doing the Dolch words like and, it, the, which can't be portrayed with a picture.  Laminated flashcards with pictures took lots of time as well as used a lot of ink & time & money for lamination, but I really think that it was the most beneficial way to teach my daughter.  It will not be the same for all kids, but for K it was because:

 1. printed, laminated cards with pictures kept her interest better which is the most important part of teaching a child

2. by including a picture with each word, K developed an understanding of the meaning of each word & I feel that she has excellent comprehension for her age.

We ended up with lots of cards, but don't be intimidated by this picture. This is about 3 years worth of work.

2)  Where to begin?  If you were just starting out, where would you begin?  Cost is a factor, but not the main factor.  Learning to read in the most efficient way is the main factor (keep in mind that my typical 2 year old will be right along side my daughter with Ds, so I have two kids that will use the program)

When just beginning, I recommend starting with familiar & fun words.  Thing like family member & pet names, lots of nouns & fun action words. If you like Little Reader after the free trial, make sure you check out this link to learn about their discount for kids with DS, etc. If you choose to print & laminate cards there will be a cost involved in that, but at least the initial program with it's thousands of files & pictures will be free which will save you tons of time.

If you do choose to use printed flashcards rather than the computer program, I highly recommend laminating them.  I have written about several different ways to laminate in this post.

Make sure you fast flash them like in this post.

I would teach both kids at the same time.  These methods are meant for really little kids, even under age 2, so I'm sure you will have great success with both kids.


3)  Is the Doman book recommended even IF you are using a reading program, such as Brill Kids, or does it basically just teach you what the packaged programs is already implementing?  Or vice versa! 

You can use one of the reading programs to do basically the same thing, but personally, I would still read How To Teach Your Baby to Read, or even the reading section in the How to Multiply Your Baby's Intelligence book.  It really helped me to have an understanding of why the method worked & when I understand things better, I can implement the idea better.

4)  I am a busy homeschooling mom, teaching 7 kids, so I need a program that can be EASILY implemented.  With that in mind, what would you recommend? 

The simplest thing would be to use a video program like Your Baby Can Read or get the BrillKids Little Reader & use their semesters one & two on the computer.  The next best & still pretty simple is to still follow the Little Reader semesters, print them out & show them by hand. If you use the fast flashing method that I talked about above, it will require only several minutes a day to show the cards to both kids.

Thank you so much for sharing what you have learned with the Ds community!

Kris

You are very welcome!

A Quick Miscellaneous Update

We are 3/4 of the way through the skis race season & only have one week left in Jr. High basketball for the next set of playoff games & we seem to be still surviving!  It is a very fun time of year, but I do occasionally long for the summer months because while we still keep busy that time of year, we have no regular practices or obligations.

Anyways, here is a quick update on some miscellaneous things that Miss K has been up to lately.

She has conquered a new kitchen appliance.  K has been using the toaster for a long time,  & the hand mixer for a couple of years now.  I still don't let her plug them in though & I have to admit that this is not because I think she is not capable, but because I didn't let any of my kids do this until they were older because I am nervous about electrical things -  kind of silly, but better safe than sorry!

Anyways, it never really occurred to me to teach her to run any other appliances, until the other day when she "desperately needed" to have popcorn at snack time.  She even used her cutest new technique when she thought that I may say no. "Please can I have popcorn, honey?"  Who can say no to someone who uses the word honey to soften you up & uses please in the same sentence?

I decided that popcorn would be a fine idea for a snack, but as I went to get out the popcorn maker, I realized that there was no reason that she couldn't do it herself & besides me plugging it in & reaching the popcorn kernels in a tall cupboard, she did!  Making popcorn really isn't too difficult, but she did have to remember how all 3 pieces go together & make sure the bowl was lined up properly & be cautious about the hot air as it could burn her.  It was a simple task, but a good one to boost her confidence.

I have noticed some interesting changes in K's reading lately.  Since January she has been reading 3 or 4 books to me each day, as well as several to herself & the improvement is evident.  She is really understanding punctuation & is reading so much more expressively. If she makes a mistake on a word, she will go back & try again.  Sometimes this happens a couple of words later after she has read more of the sentence & she realizes that the word she said does not work in the context of the sentence. This is really proving to me how much of her reading she understands.

The thing that I am most excited about though is that she has grown 3/4 of an inch in exactly one month!  She is constantly asking for snacks, so I suspected she must be growing. Her thyroid was a little on the high side on her last blood test & I have been looking into ways to support it with the help of K's naturopathic doctor, some research & the advice of a friend.  All that I have done so far is to increase her iodine intake & I'm thinking that it is already making a difference.  Here is a link to some information on Andi's blog about stimulating growth in kids with DS.  

That's all for now!