Stargardts is so frustrating

I'm sure I am not the only parent who believes Stargardts Disease sucks, but it sucks double when your  child WANTS to be a perfect student.  She is so hard on herself in school.  First I am going to list a few things that are frustrating with school stuff and stargardts to begin with:

spelling words that are too small
text fonts
reading from left and right
math homework
numbers
number grids
computer size

Thats just to name a few.

Today:

Lacey usually tells me when she has a good day at school but she is very cautious about explaining the bad days.  I have never said to her, "Lacey you are a bad student." "You are a failure." "you are so slow in school."   But I feel that is what she hears in her head. Why does she feel that way?  How do I change that?

 Today was a bad day.  It started off with last nights homework making it into her brothers homework folder and not her own.  That stressed her out when she got to school.  It trickled down from there.  She said she was behind on her school work during the day because she kept thinking about her homework.     I guess they have to sign a book for forgotten homework.

I said to her, "Lacey, you did your homework last night.  Did you think about that when you were stressing out about it at school?"
"Yes." She said.  "I just knew I didn't bring it in."

When she got home, we did her math.  Thankfully today it wasn't adding or subtracting, it was more busy work writing sentences. (15mins)   Then it was spelling.  Lacey uses the computer to do her spelling trial tests.  Her font is set to  48 in WORD and its just like a test, I say the word, she keys it in.  She got 4 wrong.  19/23.  She started to get upset.  This is just a trial test.

I told her to breathe. I told her to look over her test.  Which words look different or off? Which word does she see that doesn't look like something she wrote in her homework all week long.  She found the words that were wrong right away.  I corrected the spelling next to the word and I told her we would work on it again tonight.  This test took about 25 to 30 mins.  Now, we have been doing homework for a solid 45 minutes.  Daylen has been done for 30 mins and she sees that and THAT makes her mad.  He is done before her.  This is where my dilemma gets worse- Lacey still needs to read, work on braille and do everyday math.  We have already been working for 45 mins and we still have at least another hour to go.  Now, I can tell her we still have more to work on, or I can give her a break and let her go out and play.  I choose to give her a break.  Ugh.  Just venting.

4th grade begins

A little nervous.

A new teacher
A new principal
A new braille teacher

Welcome to 4th grade.

I am going to put my trust into the staff and pray that this is the best decision for the whole team.

Bell Program in Philly

What a week for Lacey!
July 15
Every  morning for this week at 6:45am Lacey wakes up on a summer day to get ready for Braille Camp.  The first day was rough.  We decided to drive into the city and stay for the whole day just to make sure Lacey was all right at the camp. We left the house at 7:30am and didn't get there until 9:15.  I don't know how people who drive that route every single day handle it. The drive was stop and go the whole time.  Thank goodness I drank my coffee that morning.  I needed to be alert for every car and person on that road.  

Lacey and I were both  nervous about this camp. David was worried about leaving her in the city all day.   When we dropped off Lacey, I thought there would be a little more agenda newsletter or something.  Nope!  It was hello, drop off your kid and leave. Wait! Wait!  What?!  Laura, Daylen, David and I walked Philadelphia from 9am-2pm until  camp was over.  I was counting down the minutes until we picked her up.  She could either love it or hate it.  Well, she loved it!

She loved that she was with other kids who had a CCTV at school too.  I know she is writing a journal in braille and the teacher is telling us what she needs to work on.

Day 2
July 16

Today we took the train.  So much easier!  David took Lacey in the morning and I was on duty for pick up.  Today they were going to the Library and walking with their canes.  Ok, one more thing to make me nervous.  Not only was this the first day we were to leaving her in the city without us there now I have to worry about her walking the city.  I did ok.  When we picked Lacey up with her cane and all, she was happy and loving it.  Therefore, I couldn't be more happier for her.

Vegas Foundation for the Blind

We needed a braille writer for the summer.  While making some calls, my sister called a woman from her social school networking and found the Nevada Blind Foundation.  This place was awesome!  I wish I would have known about it earlier.   They had a full braille library for the kids to rent out books, a rock wall, a computer lab with all sorts of awesome technology, a playroom and so much more.  Lacey loved it there.  We got to rent a braille write for the summer and also borrow books.  I called Lacey's braille teacher right away to tell her.  Part of the journey.

Here is the link below just to look at.
 http://www.nvblindchildren.org

End of Braille 3rd Grade

Lacey's braille teacher was the reason why we survived third grade.

Here is her gift!


Lacey wrote this in braille:

We made it alive! (Aleve)
We gave it all! (All detergent)
We sucked it up (lolly pops, suckers)
It was no sweat! (deodorant) 
Thank you very much (Thank you cards)
Drinks on us! (Frog Cup)

We appreciate this woman so much!

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