Reading and Down Syndrome

Dr. Seuss. “The more that you read, the more things you will know. 

The more that you learn, the more places you'll go.”

Now that I am on top of all my book reviews,

Whew! That was crazy.......

Id like to update you where we are 

and a bit about the process.

We have still been working hard on reading. 

For so long it felt like we were never going to actually be able to " read".

I've been using these flash cards purchased at the $ Tree for a single dollar per pack!

When I can I purchase two packages of each category-

This really helps when we want to play a matching game or I can add both words to our stack

Then when using the fast flash method I can go through the set twice easily. 

If you are new to teaching reading to little ones with Down Syndrome

This book was a great place to start.

It now comes with a CD so if you have an old version like I did 

You can purchase the CD separately.

It's really great to print off what you might need.

If you know where the CD is.......

I have found that adding five new words at a time works best for us.

Always using positive reinforcement, I never say "No". 

If she misses a word or pauses more than a few seconds,

 I just say the word and move on. 

When she knows those five words I add in new ones. 

I try to add words that don't resemble others visually at the same time. 

So maybe words that begin with a different letter? 

Not sure if this makes sense but she is learning how to read these visually 

and that is one of her weak areas, since she is legally blind, 

I want success as often as possible! 

She loves clapping and cheering when she is successful 

we want school / learning to stay fun, positive and upbeat.

We started using these sentence strips when we had a limited vocabulary

Reinforcing left to right tracking.

These were also purchased at $ Tree!

You can see there are other colors and currently I have left the pink and yellow for later.

I don't want her to see a yellow card and memorize what is on that strip.

Yes, she does that. 

Some of the word cards are light blue-

she will say the word without " reading it".

She knows its either "do" or " but" 

Ugh.

These were some of the first sentence strips

                               

                                             This is what she read yesterday. 

                      ( I would love to add bold, large typing, and italics, and undlerine to that sentence)

Quickly, and with ease.

I think the most exciting part is that she did it verbally and with ASL.

Her speech has come so far!

 We also have this flip book and are working on phonics

In addition to sight words. She is doing phenomenal with this!

I've seen on pinterest an idea for making your own flip books using spiral bound 3x5 cards.

                      

                      

My next project is making some books without pictures using her words

I'm going to use these books I bought for $1 at T@rget!

Reading is possible!

She is 8 years old 

But when you take into consideration that at 4.5 years of age she was on an airplane

No spoken language,

Only comprehended Spanish.........

Legally blind.......

Quite amazing if you ask me.

I'm quite humbled to think of all the tears I shed.

Happy letter "A"

School is in full swing and we are trying to stay on schedule.
Monday, Tuesday, and Wednesday all have one 30 minute drop in Therapy session.
The rest of that day will include some kindergarten type activities.
I'm working on a scope and sequence as I type this
Introducing a letter, number and color each week makes sense.
She knows her colors so we are learning to read the colors name
and some simple coloring pages from an inclusive preschool review book have been included since high success rates keep this girl motivated.

Lil G has sight words that we review each day,
I use the quick flash method.
I've added a few words and will wait until she doesn't hesitate before adding more.
We are up to thirty words in this stack.
Currently we are using flash cards that I bought at our local $ Tree.
There were several versions preK, Kindy, and first grade, verbs......
They are 2" bold print so perfect for what we need.
( having 20/200 vision and 3 power bifocals allows her to see things this large quite well)
I bought two of each set so we could play matching games etc with them.


I also have a phonics flip book that has CVC ( consontant vowel consonant) beginning words in it.
Each letter flips on its own.
We've mastered the - at ending words. 
Last week we added the -an endings.

I've continued working with HWT ( handwriting without tears) writing program.
The only thing I have changed is the pace we are working at.
I'm introducing letters in her name right now.
We had started with the letters E,F, L, which is how the curriculum works,

 and she insisted on learning X.
This is the order used in HWT mind you but I have regrouped and I am going out of order.
Since Lil G is legally blind I have decided to focus primarily on the skills that will get her moving educationally. I will continue to work with handwriting but our focus will be primarily on Braille.

 Both for literacy and communicating.
In her handwriting she will need to know her name so we have switched gears-

She has now mastered the order of the letters in her name and can read her name! 
If you are curious and have questions feel free to ask.



She received a soft touch Perkins brailler over the summer.
I've placed it on a small child's desk in her old bedroom and keep paper in it in case she feels the need to type. No pressure.
When she pushes the #1 cell key that makes an "A" so I say, "a" and so on.......
Which leads me to dream a little.......
Oh how I would love to have a smart brailler.
It would provide the feedback that seems to motivate my little one.
There were five children chosen to "host" the traveling smart brailler over the spring/ summer. Once each family had a turn to use it and write reviews on their blog
they were listed for people to vote on who should win a smart brailler of their own.
The families that didn't win ended up getting funded 100%
by others that were generous enough to donate - $2,500 is the cost.
The website Wonderbaby started by donating $500 for each family.

What is a smart brailler? Well.... It looks just like the brailler we already have
Except it has a brain and a screen that shows what the child has typed, and audio feedback!
Yes, you read correctly! Audio feedback. There are also levels of learning programmed into it from what I understand. ( or maybe ordering the software is additional?)
Since I am blogging from my IPad I can't hotlink it for you. Just google it.
Trust me. You will be amazed.
Currently we are doing it the "old school" method.

I've asked the company selling it if the keys were easier,

The sad thing is she is typing her letters correctly but since she has Down syndrome

Her hands are small, think special order gloves from Lands  end  for infants small,

 Plus she lacks muscle strength to get the keys pushed correctly.

I don't correct her. She is doing it correctly.

Plus all this hard work will pay off, one day her hands will be stronger from all this practicing!

For " reading the Braille" I type out rows of letters that are correct for her to practice.

I can only imagine what having the smart brailler would do for her progress.
I've already seen what having an IPad has done for her.

Yesterday she sat down, typed the #1 cell key and said"A".
No prompting!
I'm pretty excited.
Baby steps. 

 
While I have your attention I would also like to write a book review.

I recently read " Chasing Hope" by Kathryn Cushman.

This was such a good book, I couldn't put it down. I loved the main character. She is focused and strives to do her best in everything she does, almost to a fault. Sabrina has had to walk away from her dreams and it has changed her. Sometimes that is the purpose in unexpected challenges in life. I love how the two young ladies in the book have a common interest but are from two completely different walks of life. That common interest, running, is what drew them together but they both have something to offer the other - that is what God does. I enjoyed the complex characters and real life scenarios. there was romance and some tough spots caused by illness and soul searching that had to be done by both main characters- such a great story! I can't wait to read more by this author.

Once again, thank you to Bethany House Publishers for the review copy of this book. This review is completely my own opinion.

New school tools!

If you've been following our adventure for any amount of time you will know that we've recently learned that Grace was born with congenital cataracts, she has no lenses, therefore she is blind - since her vision was not corrected all along she is also blind with her glasses.
Since the new diagnosis in September I have had to shuffle some of our school goals around. What will literacy look like for Lil G?
She has incredible "functional vision", meaning: she has learned how to function well with the vision she has. Here is more about how that is measured if you would like to learn more http://www.perkins.org/resources/scout/vision-and-blindness/functional-vision-assessmen.html

Since she does so well I am fighting an uphill battle when I express my desire for G to learn Braille. The fact of the matter is, Braille isn't easy. Secondly, many of the teachers that work with children that have visual impairment don't read Braille or know how to teach it. With technology abounding Braille seems to be an outdated way for those that are visually impaired to read and write. Third, lil G has Down syndrome, I often forget about this diagnosis so I can become hypersensitive to the thought that it would even be part of the equation. Sadly I think that it is, it would be much easier to teach her to use the remaining vision she has and only learn to read with magnification devices, read books on her computer in extra large print, and have audio books. But as her mother I need to take everything into consideration and that means teaching Braille. She is blind and Braille is the mode of literacy for people that are blind. It's as simple as that. It doesn't matter how long it takes for mastery, but I believe that she can do it and that it would be much easier to start the learning process now rather than waiting until she develops another eye condition rendering her completely blind, the facts are there. She is at a higher risk for glaucoma and other eye conditions.

Today we are placing Braille ABC stickers on her leap frog fridge magnets and in a few books
And repurposing them. We will also read a few of her new books, books filled with textures and Braille to develop sensitivity in her tiny little fingers.

Packages in the mail

"Free Matter for the blind"
That is what Lil Gs recent deliveries look like.
Please forgive me while I continue to process this.
A diagnosis of Down Syndrome is one thing,
But the diagnosis of Legally Blind.
A whole new ball game.
Don't get me wrong.
It hasn't changed much in "parenting 101".

I am just amazed at what this looks like.
You know, services that are a "legal right".
I have been trying to move full steam ahead
Advocating,
Making phone calls, sending e-mails.
Today I had a nice whirlwind conversation with someone at NFB.
(NFB- National Federation of the Blind)
It was very enlightening.
She confirmed my gut instincts.
And I don't even like when the thought comes to mind,
Much less sharing it.
Thankfully I didn't have to.
She knew, she has worked as a special Education teacher
and as a teacher for the visually impaired.
She could voice what I couldn't even allow myself to think.

It's all about perceptions,
If my beautiful little girl had one diagnosis,
It would certainly be an uphill battle.
Any of my fellow bloggers that still might happen to read my posts
with a child that has DS can attest to this fact.
But the fact of the matter is that she has three.
Line them up in a row.....
Well, now I understand their shock and amazement
When I nonchalantly mentioned she knew 400 ASL signs
And used them fluently.
How shocking that a little girl with English as her second language
A little girl with epilepsy
And Down syndrome
And that is legally blind
Could possibly accomplish such a feat?!
gasp! In two years no less!
Then in the same breath they tell me she is better off in their public school setting.
With trained professionals.
Please excuse my sarcasm.

Lets just say I am prepared to feel underwhelmed with the services they might decide to offer.

"Braille?! You would need a letter from her Dr stating her vision would worsen for us to consider that. " What?! Let me get this right she has only 10% of the vision the rest of us have. It has to worsen? "We will do the evaluations in her home environment where she is most comfortable to determine if she needs Orientation and mobility." ( learning to become independent in unfamiliar surroundings and how to use a cane.)

Let me tell you that she gets around pretty well for a "poor little blind child".
She's had her fingers shut in doors enough times and fallen and skinned her knees enough to learn how to avoid that scenario. But put her in a crowded mall, or walking on a sidewalk, she can't assume the lines or variance means nothing. She needs to be holding a hand or hear the words,"it's okay. " to know its just a pattern.
I will continue to march forward.
With or without their help or approval.

Parenthood

(Headed to Ecuador to go get my girl!)

Today I thought I would talk about parenthood

And Down Syndrome.

I've only been a member of the club for two years
(well parenting a child with Down Syndrome)

So I really can't speak for everyone.

But I do have a few thoughts to share,

That might be applicable 

Whether  you have a child with Down syndrome

Or not.

(day 2 at Para Sus Ninos)

Being the parent of a child is as huge responsibility

One I don't take lightly.

(signing important adoption papers in Ecuador)

(a new family!)

But one thing I need to be reminded of 
time and time again

Is my need to take care of myself 

So that I can in return

Take care of the ones I love.

You know there are many sayings out there about motherhood,

(carolina park in Quito)

"If mama ain't happy ain't nobody happy." 

"The hand that rocks the cradle rocks the world." 

If I got paid salaries for all the jobs I do around here,

We'd be pretty well off.

But the thing is I don't.

(Easter 2011)

That doesn't diminish the importance of what I do though!

I am needed around here

And if I don't eat right, get plenty of sleep, exercise.

Well, it's not just me I am hurting.

I have this family that needs the things I bring to the table.

My daughter has Down syndrome.

My daughter is legally blind.

My daughter needs me to be around,
present

To be her advocate,

To be her teacher,
most of all

to be her mommy.

You know

The one that makes up silly songs,
 who is teaching her to read, and kisses her owies,
that knows her likes and dislikes

Wipes away her tears, and puts in her DVD of choice!!

No one, no matter how hard they try,

Will ever be able to fill that role in our child's life.

All you mommies out there....

You know who you are.

Please make that appointment.

Have your annual check ups.

Eat right, get plenty of rest,

Take some time to enjoy life- 
a book, friend, a hobby you enjoy!

(what Im knitting! You can see Ginnys Page for the directions for the hat.  Im knitting a sweater with the same lace and its own matching hat for a gift too!)
                                             

Do your Brest self-exams.

If not for yourself,

Do it for the ones that love you!

Day 14- 31 for 21

Today I am joining the ladies over at studio JRU

sharing whats been going on in my studio.

(oh how I look forward to sharing on Friday!)

Since we live in NW Florida

Fall hasnt arrived in full force yet.

This morning I did wake to the sound of birds singing -

husband opened the windows. A new cool front.

Tuesday mornings I attend a Bible study,

We are reading "One thousand gifts" by Ann Voskamp.

We left with a project-

find God around us and photograph it.

This is what I saw when I got in my car to leave.

A vine of heart shaped leaves bright yellow hanging down with a background of green.

It made me think of the many flowers and vines with heart shaped leaves......

Like God visibly showing us love through nature.

My artist eyes and heart sang with the thought of it!

We have two kinds of wild vines in our area with heart-shaped leaves,

then you add Scuppernog vines,

morning glories, moonflowers.

I saw them all day as we ran errands.

"God Valentines" all day.

I am knitting a prayer shawl.

Filled with love and prayers

to wrap around a dear lady going through a hard time.

It has falling leaves in the lacework.

And Ive been painting on these.

I was thrifting last weekend and stumbled on these SOLID

round back windsor chairs.

A little elbow grease, primer/paint-all in one

6 chairs for $50$15 in paint and sandpaper-Not bad.

(I also bought a $5 rocking chair for little G that needs the same treatment!)

Since I am also blogging about Down Syndrome Awareness this month,

Id like to add a thought,

My parents were so concerned that adding a little one

with that extra chromosome

would change our lifestyle, for the worst.

I can assure you,

I am just as busy now with the things that I love, enjoy

as I was before lil G, maybe even more-so

because I am so thrilled at seeing how love

a family

really can make a difference.

I can make a difference!

If you have time and havent read it yet,

take a peek at yesterdays post.

then.....

if you still have some time

Go take a peek at "whats in my studio"

if youd like to see some creative hearts at work.

Praying God sends you plenty of valentines this weekend...

I remain,

Under His wings,

Anna

21 for 31

Okay, so I just signed up to blog the whole month of October.
I know, I am laughing too! I mean really, I can do things.
I can do some things fairly well.
But blogging. Not so much.
SO here it goes. Ive already gotten behind because, well, we werent a family with a loved one that had Down Syndrome last year. So I didnt know.......
So last year this time I was the excited parent to be. The excited Adoptive parent to be if you want to be technical about it all. Stars in my eyes. Ink not yet dry on the application form and fees sent. "oh, she is so special you will have her home by Januruary." But we are dealing with a third world country. New Hague laws. And newly elected officals...... Fall turned into winter turned into Spring turned into summer and now I smell fall in the air again. The newness and the excitement are mixed with a dull ache. A "little G "sized hole in my heart. The empty room ....... the clothes....... the toys. Waiting for a sweet little girl that has captured our heart.
The first pictures we saw of "little G" were the cutest ever! Such big eyes....behind such big glasses, cute little waterfall on the top of her head.(you know that little bunch of hair) She aged six months from that day to the next update we got all in one fell swoop. Then the months have ticked past and she has learned so much. She is now walking and drinks from a straw. (part of her therapy is to blow bubbles with the straw in her drink Im told)
I just got a new update yesterday. new pictures. New stories about a little girl that visits me in my dreams........ sigh. I dont get as excited as I used to when we got a new update. TO see how much she has changed hurts. I WANT her to be making milestones and learning new things. I just wanted to be part of the crowd cheering her on.
We are supposedly so close as far as the paperwork is considered. But her country is so far away. And weve been in this same place, waiting since April. (and were told then that we'd hear something within two weeks )
I am tired.
I amWeary.
Iam Worn down.
Yet.... still trusting that this is where God wants us.
And here I will remain until we bring "little G" home.

Through the Looking Glass- Our perspective

I was just reading a fellow bloggers post (Down with OZ) about Down Syndrome and the reactions and stares from others.I had to smile. I pray no one has seen us when we forget our manners.... when I see a child with Down Syndrome I wonder "do I say something?" "Do they want to be left alone?" You know the thoughts... I just nod and smile and see where it leads. Many times I think I must be thought of as "a little off" . Some lady held her child tighter after I told her how beautiful her son was...... huh......I know, these days you never know. But really? Really?

So back to my story. I read this blog and just had to share. Husband was in "big box store" (they can pay for their advertising..... no freebies here!!!!) He happened to run into Married daughter. They were chatting it up and a mother and her 18 year old daughter happened by. Husband does a double take. "Hey, she has Down Syndrome!" (or something of the sort) He is so excited, beaming from ear to ear. So, if you are a parent or family member of someone that just happens to have an extra chromosome. Just know that we dont mean to offend you. We just get so excited that we forget our manners. Really.... we have waited over a year now to bring a special little person into our family. We mean no harm..........