My Family

My Family

Friday, December 7, 2012

Beginning to see the light

It has been super busy around here (translation:  I would kill for a dull day).  Christmas has exploded around our home.  The tree, lights, and various decoration.

For a child with visual impairments, I often wonder what Cary sees.  I put up the tree and lights and held her up to it.  She turned away and cried.  Not good.  She has accepted the tree since then and seems to enjoy the jingle bells I have placed around her play areas.

Marvin, on the other hand, loves it all!  He enjoys "helping" me with the decorations and generally getting in the way.  But he is so enthusiastic about it all.  It is hard to stay mad at him.

It has also been a rather frustrating couple of weeks in the vision department.  I won services for Cary weekly.  I felt that this was and is what she needs.  Vision therapy connects her to her world.  I thought that I would have weekly services until she turns three.  Oh boy, was I wrong.  According to her vision therapist we are "trying out" this for a month.  In other words, she does not want to make the trek out here weekly.  She is a great person, but complains about coming out and insists that I am doing "just fine".  It is like the proverbial adult patting a child on the head and telling them to scoot along.  Plus, she "double booked" this week and "was unable to fit me in her schedule this week".  Plus there is Christmas break coming up and she "won't be available."

So I took some deep breaths, hung up the phone with her, and proceeded to have a mega screaming fit.  Luckily, Cary was asleep in her room with the door closed.  After I yelled and and raged I began to think about what I could do to help Cary.  After all, yelling is NOT going to help her vision and really doesn't do much except wreck my vocal chords.  So then I thought.  I channeled my old boss and remembered our parent ed night on executive functioning.  I remembered her and my co-teacher asking what we wanted our children to be in the future.

So I made a list.  I visualized Cary through the years and my goals, hopes, and dreams for her.  My biggest hope, dream, and goals all align with her sight.  So then I went to step two.  If my vision person isn't willing to hear me out and support us what do I need to do next.  I began digging through all of notes and lists I had.  I ran across the Virginia Institute of the Deaf and Blind.  Long ago I had e-mailed them but had never heard back from them.  They have programs for families with blind children.  I picked up the phone, said a quick prayer, and called.

They answered!  I talked with a wonderful woman who actually listened to me and heard what I had to say.  I get to go to Stanton, VA next week and there they will give Cary a hearing screening.  What you say?  Hearing?  Yes.  Cary apparently flunked her newborn hearing test and there never was a follow up given.  Well there was supposed to be, but the previous foster parent never took her.  Surprise, surprise.  So anyway, to get evaluated for the program I am going in for the hearing screening.  Then I will get vision support as well.  Sometimes the big changes come about with small steps.  But they have to be on the right path.  I feel like I am starting to find that path.

I will go.  I will tour the school, the pre-school, and meet the people who are willing to help me help my child.  They did tell me to let my social worker and Infant Toddler know as a courtesy.  I told the social worker and she said go for it.  Infant Toddler never returns my messages so I left them one and frankly, don't expect to hear from them any time soon.  I will also inform Cary's therapy team that we are doing this.  I know speech and PT will be for it.  I am sure vision will not be pleased, but I really don't care right now.  My priority is my daughter.  Not vision's feelings on the matter.  My children are going to get what they need.  It is their right.  I will be my daughter's voice until she is able to be her own voice.  One of the greatest gifts I can give my children is the power to advocate for their needs. My children are survivors and strong.  I am blessed to be their mama.

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