I have just recently finished Lilah's enrollment for Babies Can't Wait. This program is an early intervention program where the therapists come to your home to work in the child's most natural environment. My coordinator has set Lilah up with PT once a month, unless more is needed, and a vision therapist is suppose to come once a week.
Lilah's initial evaluation with BCW was hard for me. VERY HARD. It was done on my birthday and the PT had the nerve to ask, "Are her toes like this because of her syndrome?" I went off..."Lilah doesn't have a syndrome. I had a blood test done to prove that she is of normal chromosomal make-up. Her eyes, her condition, it is an unexplained thing." Again....the questions. (I don't care who you are. If your question about my daughter offends me...watch out! So...just don't ask. I do not care how curious you are. Curiosity killed the cat! Lilah is my child. I am sensitive about her. I have a right to be. If you don't like my sensitivity about her...get over it!!)
So Lilah's PT is the same person who made the comment. She comes tomorrow morning. I pray she is more thoughtful. If not....I will request another PT. I pray to hear from the vision therapist SOON!
My coordinator for BCW is GREAT! She gave me tons of material on vision impairments,etc. I told her exactly what I needed, how I needed it, and what was best for Lilah. I was SHOCKED to receive a pamphlet about the Savannah Association for the Blind that works with visually impaired preschool children. This got me thinking...frustrated and not understanding how something SO close by was NEVER offered to me by the MD who diagnosed her. (I know this guy has a great brain, but COME ON...DR. D....grow a heart!! This prompted me to write the post below.)
2 comments:
I've asked the wrong question to a few parents in my time. More when I was younger. If I could speak to your PT I would emphasize the rawness of your emotions regarding Lilah.
I bet you could get that message across to her, too. I bet she would learn something valuable from you being honest with her about her question.
Sometimes you can affect someone's whole career with a conversation - changing the experience of many other parents in this PT's future.
You might just be the person to help this PT, Katie. After that, I bet she has a lot to offer Lilah, and you.
Barbara
Your lack of information given to you makes me wonder where was the social worker at the hospital. It's truly their job to direct and comfort families that are dealing with special needs. I'm so sorry you did not have that help. That's frustrating.
Many of times I too have found myself feeling hypersensitive to the questions people ask and the way they word them. I had a thought that helped me awhile back; being more patient and loving with people about their questions makes them comfortable around Cayman, and I want her to learn to be strong and self-assured in life, not defenseful. I am the one that will influence that in her life the most, we spend the most time together. It took me awhile to get peaceful and patient with people, so don't feel bad if you're not there yet. It helped me to view questions as an opportunity to "educate" people.
Post a Comment