I am looking through recipe books. Finding recipes that don’t contain milk, white flour, or sugar.
Needing to buy some groceries.
Needing to pack food & clothing for our little family trip that we are going on tomorrow.
Wanting to feel positive and encouraged about the new year.
The old one ended quickly when we tried to spend some time with a large group of friends and my 6 year old bit someone.
My 6 year old who I have recently been told has FASD. Fetal Alcohol Spectrum Disorder.
As I read and educate myself, I see her fitting more and more into this box.
I find myself fighting tears as I realize this is our life. It’s not going to suddenly be something she “grows out of”.
I want to get her a t-shirt with a full explanation on the back of her hidden disability & how she really isn’t a bad kid.
As she makes the dog growl for millionth time at my feet.
I met with a new counselor this past week. One who I believe will help me & her learn & deal with this disability.
I learned of a place in Chicago where I can take her and have a full neuro-physc screening done, that is supposed to be able to tell us what parts of her brain are working properly and which ones aren't.
Those things are encouraging.
When school starts back up again next week we will set up a meeting with all the people who work with her. We will make her a new IEP based on her new diagnosis.
Will school get better?
Maybe.
Maybe not.
We just tried our 5th medication on her to try to alleviate some of the symptoms. Fail.
I am learning that FAES is brain damage.
Diet changes seem to help many people with FAES. (why I am going through the recipe books)
Neurotransmitters that send messages from the right to left & vice versa sides of the brain don’t fire like they should. Medications don’t absorb like they should.
Everyone with these disorder is different, because whatever was developing the day that the substance was abused is what was damaged.
I need help.
I know God is providing it.
Meanwhile, part of me is so hurting. Grieving. Aching. Angry.
Pam
7 comments:
This is why I learn so much from you. You know God will provide. I have "seen" you struggle and yet you still go on. I learned to trust God more because of you. So even though you struggle and Kihana struggles please know you are helping one family grow closer to God.
Praying you find some answers that will help this sweet girl deal with life.
Life is hard enough without haveing things block your way.
*SIGH*
Oh Pam, I am so sorry. I cannot imagine. Thanks for your openess and HONESTY.
You will continue to be in my prayers. Please let me know if I can do more.
I feel for you. We have a friend whose son (they adopted) has autism. He was born at 4 1/2 months and was not expected to live. His mom was a meth addict. They have been through a lot with him, but they wouldn't trade these years with him for anything, hard though they may be. I'm sure you feel the same about you little girl. I pray God will give you wisdom and insight into how to love and grow this little girl and they ability to see what He is teaching you through it.
I'm so sorry. So senseless. So much hurt and damage.
Good luck Pam.
I trust that 2011 will be filled with HOPE for you and your family. There is HOPE. He is HOPE, and we have HOPE. Even though there is potential damage in this sin-filled world and brain, there is still redeeming work to be done. A long time ago, you mentioned how you would visit K at school during lunchtime and just HUG her... That hug is the kind of redeeming work you demonstrate to us. That hug can easily fire positive neurotransmitters and bathe the brain even if it is not interconnected properly. Thank you for showing us how we can continue to do God's redeeming work in others while waiting on Hope.
Sincerely,
Liz
Do not get discouraged. The Lord is your strength. Keep loving her like you have always and the Lord will use her disability to bless you and those around her.
I had a student with the same issue. The first year I met him we all thought he was ADHD because he acted out so much. He had no social skills and did odd behaviors.
He was kicked out ever school he went to. His mom begged me to work with him so I did. I didn't know much about it but I felt her pain of having this child. He was two years behind. I just asked the Lord to tell me what to do to help this child.
The child's mom changed his diet no red dye #40 or any of those products. No sweets or dyes. She send him healthy food to eat. She got him a tutor and I worked with them both. It was just something in the brain that would not click at 6 years old. I taught him by repetition, hands on, using the computer. I mean the Lord just gave me the strategies.
I just want to tell you 7 years later he is doing well in a private school. He doesn't act out any more. His mom never put him medication but she just worked on that child.
It takes him a little longer to process information but I thank the Lord that we all relied on him. We step out of ourselves and relied on God for the answers. The mom realized the limitations of SPED and IEPs.
This child is still one of my proudest teaching experience--to see a child grow so much.
Hey friend! Long time! :) Still check up on you via your blog. I just read this and thought of you!!! :)
I hope it offers some support/help/hope.
Love!!!
http://blog.lproof.org/2011/01/possible-support-for-families-with-hidden-disabilities.html
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