Mixed Nuts: Finley's IEP meeting before school starts

Quotes

"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." - Helen Keller
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
You may never know how strong you are, until being strong is your only choice.- Unknown
Keep your face to the sunshine and you cannot see a shadow' ~Helen Keller
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
Don't cry because it's over, smile because it happened."- Dr. Seuss
"Life is 10% what happens to you, and 90% how you react to it."
"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown
I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go – Abraham Lincoln
Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin
There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle - Albert Einstein
The journey of a 1000 miles starts with a single step
Sometimes in the middle of an ordinary life, love gives you a fairy tale
Where there is great love, there are always miracles - Willa Cather
The Difficult we can do immediately, the impossible takes a little longer
Doing what you like is freedom. Liking what you do is happiness
There are two lasting bequests we can give our children. One is roots. The other is wings.
Be the change you want to see in the world
Don't tell God how big the storm is, tell the storm how big Your God is..........
Everything has beauty, but not everyone sees it
Fall down seven times - get up eight - unknown
Despite our differences, we sink or swim together
Life may not be the party we expected, but while we are here, we might as well dance
"The man who moves a mountain begins by carrying away small stones." -Confucius

Thursday, September 1, 2011

Finley's IEP meeting before school starts

Today - I will share the pictures I took of Finley. I was going to do Cainan's pictures today to go along with him meeting his teacher, but I forgot to take my camera to the school. And then we had an impromtu meeting about Finley, so I went with her. Tomorrow Cainan gets his day.

Today, I met with the whole team for Finley's start of school. Besides her teacher and the principal - whom I have met before - today I met her 1:1 aide (whom I loved), her teacher for the vision impaired (who is going to be fantastic and has already started gathering products for Finley and signing us up for things), her orientation and movement specialist (who was really great and has a good handle on things at the school), the Kindergarten aide (who will sub for Finley's 1:1 aide if she is sick - she has been there a long time), and a specialist from Perkins School for the Blind.

I was blown away. They pulled all of this together for the start of school with only a few weeks to work on it. (remember we sprang our move on them at the end of June). I expected to have some things in place, but all of this? Wow. I was really excited.

We spent an hour and half talking about Finley - how her vision is now, what may work/not work. Things the vision people would like to see changed. They were going to continue to work until school starts next Wednesday and then will see her quite a bit in the beginning until they get to know her better.

Once things gets settled, she will have her braille instruction on Tuesdays, Thursdays, and Fridays for 45 minutes each day. She will see her orientation and movement specialist once a week. She will have an occupational therapy consult once a month. She will have the 1:1 aide in the class with her that will accompany her to all specials and any extra help she needs in the classroom

They are going to do a braille letter every Monday with the whole class and I am going to come in and talk about it. Then we will do a project around the letter. It is going to be a lot of fun. Can't wait. And the teacher for the vision impaired is going to work with the kids in the class as well and talk with them. They have a lot of great ideas in place and I think it is going to work out great.

I was so nervous leaving Salem and starting over with this whole process after we worked for a whole year to get things where we wanted them for Finley in her old school. But our new school has had vision impaired children before, the school has been remodeled within the last 10 years - some parts within the last 5 - and is easy for her to get around.

I breathed a sigh of relief when I left today. All is going to go well, and I know the communication will remain open. As her vision is always changing, so will her accommodations. And I have confidence that we are off to a good start.

As I drove home it hit me (like it sometimes does) that this is serious and Finley does need help. As normal as she seems to us, she actually needs all of these people to get through her school day safely and successfully. I take for granted the sight she still has sometimes, and "forget" what we are really dealing with. It is days like this that bring me back to the reality that is having a child who is vision impaired.

Kindergarten is going to be great. She is going to have a blast. There are 15 girls in her class and only 8 boys, so we hit the jackpot. I can't wait to see her wings spread as she takes her first leap into independence.

I have one more thing I want to say. I have been having a conversation with my friend Jennifer Stevens (see her blog HERE) about what we are doing for our kids. Jennifer was our families inspiration to start a foundation of our own. We saw what she was doing for her child with LCA and we knew we had to do the same.

She and I have been talking about families who have children with LCA but are waiting their turn for a cure to come along. We both find this kind of surprising. We know that fundraising is difficult and it isn't for everyone.

BUT....But. Would you lay down and do nothing for your child? This is the part that Mat and I have a hard time understanding. Don't get us wrong - not everyone wants to, or is even able to do what we have done with our funds/foundations. But to do NOTHING?

You don't lay down and do NOTHING for your child. A cure is at our fingertips. But even if it wasn't - I can't imagine not doing everything I could to keep Finley from going blind. When she is 15, and entering high school, and CURED - I hope that she is happy that we did everything we could so that she could see. So that she sees every sunset. Every friend. Every mountain.

And if the cure doesn't come? We know that we did everything we could. We NEVER stopped fighting to save her vision. NEVER. All the fundraising, the constant pushing is all worth it. Every second. I wouldn't give it up for anything.

Life is hard. Life is busy. But that old saying "don't put off tomorrow what you can do today"? Those are words to live by. If I kept saying "oh, we will start tomorrow. Start looking for that cure tomorrow". Or worse - WAIT. Wait for it to come to me.....where would we be? With only 85 people in the country with Finley's type of LCA? Where would we be.

You got it.....nowhere. And Finley would lose her vision and become completely blind before it became "our turn". Think about that. She would GO BLIND while we waited. Could you really live with yourself if that happened to your child? I know I can't. I would hate myself forever if I just did nothing. Who lays down and does NOTHING for their child? I don't care what it is - as a parent - our responsibility is do something. Always.

Life is 10% what happens to you and 90% how you respond to it. When Finley graduates from high school, and she turns to us in the audience and SEES us - I will know that I made the right choice. That doing SOMETHING was worth EVERYTHING.