Monday, February 22, 2010
- how did food get on my tray?
- does food come from the sky?
- why is she putting me in this water?
- I like to splash...this is fun. What is this?
- This room sounds different. Where are we?
- I don't hear my Mommy. I am scared. Where is she? Where am I?
- I hear Alex laughing. What makes her so happy? I laugh to because it must be great.
- I hear Eli scream. I am scared. I scream too.
- I hear Sammie loudly asking for a toy. I love her, but I am worried when she's loud.
- I feel my Daddy's "wiskies" and I giggle with excitement. I sure do love him.
- I hear my Mommy's voice. I kick my feet with excitement. I feel safe with her.
The list goes on...and on...and on.
In order for Lilah to really understand. We must talk to her. Talk, talk, TaLk, tAlK, TALK!
I want her to experience this life to the fullest. I want her to be confident knowing she can face any obstacle set before her. I want her to "see" it all.
And what I know...from Diana in The MASK ...is...that Lilah will "see" this life far more amazing than we have ever seen it ourselves.
Friday, February 19, 2010
Thursday, February 18, 2010
Wednesday, February 17, 2010
Tuesday, February 16, 2010
Monday, February 15, 2010
Sunday, February 14, 2010
Saturday, February 13, 2010
Friday, February 12, 2010
Monday, February 8, 2010
Sunday, February 7, 2010
Friday, February 5, 2010
I am the type of person who is always thinking.... what is our next step. (I was worried that this may be a lack of acceptance. Thank you to Joey, my Ga Pines rep, for calming my fears and helping me to see that I just want Lilah to get and have the best.) I have been researching vision services in Georgia... Teachers, Therapists, Preschools, Services, Plans, IEPs, etc.
Even though Lilah is only 14 months, I am constantly thinking about what she needs to help her. What can I do better? What have I missed or forgotten? What are we as Lilah's team(me, PT, OT, VT, Representatives, Coordinators, etc) doing that is helping Lilah? What are we as her team doing that isn't giving her the absolute best?
I have learned in the past few days that Georgia doesn't have a preschool for Visually Impaired Children(0-3). Georgia is lacking Vision Therapists and Vision Teachers. There aren't great options here in this state for visually impaired children. From what I have been told, and read ,and learned is... that most children with vision impairments have other disabilities, too. So the vision impairment is usually pushed to the back burner. Children like Lilah, that only have vision impairments, are kind of...forgotten about. I have been told many, many, many times that "it could be worse" or "you are lucky it is just her eyes." These things may be true to other people, but in our home...this is our life. It is a HUGE deal to us. This is all we know. I do not know what it is like to live someone else's life, have someone else's child, or do what they do. I would never judge them, what they do, or how they cope. I am not asking for pity. I am asking for answers. For HELP! I am asking for Lilah to be able to receive services, treatments, therapy, help, etc. that she needs. That she deserves. Vision is what motivates us to change, move, laugh, play, talk, act, etc. With a lack of vision...delays occur.
Lilah is 14.5 months old and she is not crawling....yet. She is not pulling herself up....yet. She is not babbling very much....yet. Lilah isn't "doing" what they would like her to do. YET! BUT she is making amazing strides.
So my frustration is with the lack of services offered to visually impaired children in my state. My frustration is not, in anyway, shape, or form with Lilah. If Lilah never crawls, pulls herself up, walks, talks well, etc. that is perfectly fine. But I, her PT, OT, VT, Doctors, etc. know she will do those things. We all want the best for her!
Besides move to another state, what options do I have to help Lilah get the most and best she deserves?
Thursday, February 4, 2010
One of my concerns was whether or not Lilah would reach certain milestones because of her visual impairment. Having a child with special needs was new to me. I was learning. I asked questions, begged for more information and help, but was still so unaware and yet at the same time I am a MOMMY....My first and most important priority is to love my children with all my heart, figure out their unique needs as a person, and love them according to their personal love language.
I remember thinking about little things...crazy, small, out of the blue...where in the world did this come from type thoughts..."Will she smile?" (because she's happy or because like sighted children she is mimicking), "Will Lilah know when I leave the room?" (Separation Anxiety) "Will she be able to look in the mirror and know how beautiful she is?" "Will she crawl?" "Will she walk with or without a cane?" "Will she walk at all?" "Is it more than just her eyes?" "Will we ever really know?"
Yesterday, Lilah did something I have never seen her do. I was playing with her on the floor. I heard Sammie ask for something from the other room...so I kissed Lilah's head and proceeded to get up. I barely made it to the hallway and looked back and there Lilah was starring at me... crying.
She didn't want me to leave. She officially has Separation Anxiety. Something so basic, so little, so small... something that drives other Mama's nuts...warmed my heart. She is growing. She is learning. She is aware. She knows what she wants and that is a VERY good thing!