"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Wednesday, April 27, 2016

Have you ever...

known in your gut that something needed to be done, but you just don't know how to make it happen?


Well, I am going to try something new. I hope and pray that maybe, just maybe, this might work.


Let me tell you about my Lilah.

My sweet Lilah doesn't really like to be woken up for school in the morning. She's kind of like a teenager in this regard. But, once she does wake up she is happy. I don't mean go with the flow. I mean my kid is singing, laughing, loving, joyful. Thank God she gets that honest.
Lilah loves food. Chips, cheese-dip, salsa, mac and cheese, gum, and CHOCOLATE. 
She really gets that honest.
Lilah loves to smile... (again, gratefully she gets that honest) 

 

Lilah is a stunner. I mean she is a phenomenally GORGEOUS child. So, blessed that God gifted her with this immense beauty. See....

Lilah LOVES the color purple. Yep, I died her hair purple ombre'. I am fun that way. (get over it, stuffy people. Its hair and life is too short to not have fun!)

Lilah loves to learn. Lilah, although legally blind, is a visual learner. She uses her eyes more than you could imagine. She mimics others. Lilah can spell several and correctly identify many words. Lilah is beginning to add.

Lilah loves the beach. Loves the sand, the wind, the shells, the birds, and she loves the water.
Lilah loves cheer. 



 Yep, I am one proud Mom...


 

Lilah loves to color, sing, dance,  and she adores music.
Lilah has this amazing ability where she can correctly identify the instruments playing in a song. She can tell you that the song is, for example, Bennie and the Jets just by one or two notes being played or in the middle of the song she can identify it by the voice and tune. Lilah uses her voice more with music than she does just speaking to you. Lilah moves her body more with song than she does when it is quiet.


 Lilah needs me to carry her heart and help....



She needs me to tell you that she needs more. She needs you to see her as a person more than someone who has special needs. She needs you to speak up. She needs you to stop being scared to lose your job and start doing what is right. She needs you to rock the boat. She needs you to stop living so scared and start doing more.

Lilah isn't alone. Lilah, and many like her, can and do learn. They need an environment where they can learn at the level they are currently on and grow. They need to be able to learn at their pace. Not the "standard." See, we have these meetings called IEPs...oh the dreaded 3 hour IEPs drive me NUTS! Stop telling me what my child cannot do. I am not an idiot, nor am I in denial about my kid. 

Are you?

Spend more time telling me how you can help her grow and less time pointing out her defects that don't stay on track with her peers. I am not stupid. I have grieved the fact that my baby will, most likely, never walk across a stage and receive a high school diploma. I have grieved that she may never go to college. I have cried HARD at the fact that her "friends" have moved on and here she stays. Stop treating me, and her, like we are unaware of these hard truths.
Now, for some that you need to read and hear. Lilah is capable of more than you have given her credit for. When you read her IEP and see the paper of what the "child" can do you place a judgment on her. You have branded her and for that you need to admit fault and forgive yourself for giving her less than your best each day.

Lilah, and many like her, need daily exposure to music, instruments, choir, art, dance, theater and more. Our children, those who independently walk the streets of Holland, need more than once a week, if that, exposure to the arts. Exceptional human beings need their senses stimulated in order to effectively learn. Our school systems are failing our typical children and the exceptional kids by eliminating the much needed healing of art.... in every form.

Ever hear a song and it take you directly back to a place and time? Ever see a painting and wonder how the artist touched your soul just through color and shape? Ever seen a picture that made you weep without even knowing the identity of the individuals in the image? Ever played a piano and gotten lost in the song as you touched the keys?

Imagine if exceptional human beings had the opportunity to the life-breathing, much needed world of art? Imagine an adaptive classroom  for children who can learn where they are given the freedom to grow in an environment immersed in the beauty of the arts?

What if the next savant is sitting in a self-contained classroom with that gift never opened and embraced by the world?

Stevie Wonder brilliantly addressed this....
"I just want to say..... that we need to make every single thing accessible to every single person with a disability.” 

So, I am begging for help.

I know this will work. I know that this will help. I know this will change the trajectory of my child's future. I know it will change the lives of many.
Are you willing to take the risk with me? Will you hold my hand and take the leap? Will you ask your "friends" in high places? Will you help me fund-raise for a place like this? Are you willing to do more than the minimum?


God gave me Lilah to make a difference.

I can't build it, fund it, staff it by myself....I can't do this alone. 

But with your help....we CAN do this.

We can give hope.

1 comment:

andrea chiu said...

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