Wednesday, February 6, 2013

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
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.


  1. Her vision would have to *worsen?* That makes no sense to me. None. At all. So nobody will give her Braille lessons/services? Oy...

    1. Becca, we will see what they say after her evaluations/assessments on Friday. From the few comments they have made, Grace has vision so we will work with what she has. I told her we needed to look at her future, that reading words magnified to 3in. Was not an option reading chapter books and that we needed to understand that just like in everyone her vision only has the potential to decline over time. If she looses any sight at 30-40 years of age like the rest of us where will that leave her? Illiterate? Dependant on talking books? Is illiteracy an option for any child? So when I mentioned these concerns she said we needed a Drs note stating her vision would worsen. Really?! The Division of Blind Services said all services are provided through schools due to lack of funding.

  2. A rollercoaster...that's for sure.

    Prayers for the wisdom and endurance to do the things needed for your sweet girl.

    Blessings, Jennifer


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