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.

Orientation and mobility day 3

Today marked the third day that we went out in public with Lil Gs cane.
I really let my apprehension build and posted a SOS on FB.
I'm glad to have a supportive community ready and willing to cheer us on.

We met at the mall at the perfect time,
It was about 11:30 and the mall wasn't too crowded since we had tax free shopping
Last weekend.
Most of the time Lil G didn't use her cane.
Ms Lisa is so smart, she just lets lil G call the shots
Basically she lets the adventure happen instead of forcing it.
I need to learn from her.
I always have an agenda and get frustrated easily.
I'm learning,
Lil G is a pretty good teacher.
I get caught up in
"There's so much we need to learn" mentality
And forget that half the fun is the trip!
As we walked along she asked Lil G about colors and smells
Letting her take in the whole experience.
Lil G has started yelling and making odd loud noises
to hear her echoes when we are out and about.
Drives me crazy.
( it's all me, worried about what others will think-
Typical 7 year olds are not doing this you know)
Ms Lisa doesn't even acknowledge it, I do okay until it gets the best of me.
Ugh. I guess it's frustrating because she does it when she knows its not allowed.
I was thankful that when the spinning started Ms Lisa was quick to get her to stop.

We had lunch while there.
We were able to get a little conversation in.
( I sometimes feel like I need to pay her to sit down with me and help me figure this stuff out)

She has sent us home with a new cane to try.
Shorter, folds up, has a red tip and what looks like a ping pong ball at the end.
We will use it some and see how it goes.

A Christmas story- in July

I've been getting to know some ladies that have adopted children that are blind.
This has been quite healing for me.
It feels good that our story has purpose.
Some of the emotions these mamas are having,
I can say, " I felt the same way" and truly mean it.
Or, " I understand". And I really do.

I have been wanting to read Helen Keller's Biography
And possibly Anne Sullivan's as well.
A mom was sharing that she was almost done reading Helen Keller's biography
And it reminded me of a story, something that happened at Christmas.
Maybe it will shed some light on our journey.

At Christmas time we were at my parents house
to celebrate with family and also included a visit / check up at Emory.
it was a beautiful day and we decided to take the children out to play
my sister and I were going to play with out cameras.
We get out to the blueberry patch and Lil G keeps screeching and dropping down onto all fours. The terrain is pretty tough and I was doing my best to keep us from falling
I felt myself loosing patience.
Walk Lil G! Walk!
I couldn't figure out what in the heck was setting her off.
Finally I stopped,
and crouched down,
truthfully to set her straight.
but then something happened.
Perspective.
My eyes were opened.
You see, when I got down at her eye level
I realized she was freaking out because of the tall golden grass.
When the breeze blew it didn't make noise but moved
and it was taller than she is!
She had no idea what it was!
I started laughing and pulled off a stalk to show her
I kept telling her it was okay it was just yellow grass.
I laughed until I cried -and I have to confide
the Mama sat down on the ground and just started sobbing.

The enormity of the situation just overwhelmed me,
we had only had the "legally blind with her glasses" diagnosis
since her visit in September -so this was only 3 months out.
Then add the guilt that I had lost my patience.
My husband saw me on the ground in the field
and came out to see what was wrong.
Together we held Graces hands and rubbed the grass on it
trying to reassure her it was only grass.
(she didnt believe us and was like a feral cat
I said to him, " we are having an Anne Sullivan Hellen Keller moment here"

Of course since then I have read and studied,
we should never force our children to feel things or grab their hands.
Lord forgive me,
this whole parenting adventure,
pure grace indeed.

( I've added photos from Christmas- Lil Gs big sister came home so we had a tea party.
And we watched TV at Grammies house with cousins)

Dr Seuss week

Lil G received a package in the mail yesterday,
Someone special had been thinking of us,
And decided to send some Braille books Her son had outgrown
I am so thankful God placed three families in our lives
That had children that were blind.
Before we adopted Lil G.

One of the books was a Dr Seuss book.
I have to admit I was sad that we didn't have any of his books
In Braille when literacy / Dr Seuss week approached.
Being the kind of girl that doesn't keep close tabs on her calendar
Once I realized it, it was too late to order a few.
I think that is one thing that makes me sad about our new adventure
I can't just go to a big box store a grab a few books.
I have a thing for books, can't seem to get enough.

T@rget had some on sale awhile back and you don't know
how hard it was to control the shopping cart as it veered in that direction!
There are a few companies that produce books in Braille
I'm thinking about earmarking some $$ each month
Towards purchasing a few at a time.
Lil G can see well enough to see the pictures in the books we have
I'm not sure how well. Bright colors help.
(And the new high strength bifocal in her glasses has helped)
The thing we have to remember is that using her vision is tiring.
The nystagmus and strabismus must be very frustrating,
Nystagmus is the eyes vibrating involuntarily. This is due to her brain not interpreting vision.
We are hoping the new prescription will help with the strabismus, the eyes being crossed.
Surgery might be in the future for that once again. She already has increased like hood of glaucoma so if its only going to be for cosmetic reasons her father and I have discussed not having it done. That is up for discussion at our follow up appointment.

Grace reading her Dr Seuss book,
Feeling the bumps.

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.