A busy fall weekend

This weekend ended up being non-stop busy and now I need a vacation to re-energize.  But alas, tomorrow it is Monday and back to the regular schedule.

We ended up having tickets for Marineland that we hadn't used all summer and figured that we would make a last ditch effort to go.  So first thing Saturday morning we loaded up the car and headed out.  It was a beautiful day to go and we had a lot of fun.

We had hoped that Sophie would enjoy it because she LOVES the marineland ads on tv.  We didn't know if it was just the jingle or if she like seeing the animals in the ad.  I think it was just the jingle lol. 

Sophie didn't really show much interest while we were there, I think that the whales were too difficult for her to see in the water.  Even when they were poking their heads out of the water it wasn't long enough for her to figure out they were there.  She did have a happy day though and Lucas loved the rides, we did most of them.  Sophie did have a seizure later that night though and I am sure it was just from exhaustion.

 

Today we headed out to a local fall fair with some friends and had another day of rides and being out in the sunshine.  We saw a dog agility demo and Lucas got to race one of the border collie dogs.  It was pretty cute. 

There was a carousel at the fair so Sophie was able to go on a ride which was nice.  The young man running the ride wouldn't let us give him any tickets, it was really kind and unexpected.

Now that this weekend is over we can gear up for Thanksgiving, hard to believe it is next weekend!

What's one more

Today Sophie, my mom and I made the annual trek to the Special Needs Vision Clinic that is about an hour and a half away.  In my typical style for this appointment I got completely lost and swore a blue streak may have uttered some words under my breath as we were a half hour late at that time.  But we finally made it and they were completely understanding and we started the appointment.

Sophie was understandably pretty tired by the time we got there but she was able to do the functional tests and we talked with the Dr. a while.  At the end of the two hour appointment we went over the report they would write for us.  The Dr. said that Sophie now has a diagnosis of legally blind.  She has had the diagnosis of severe cortical vision impairment for years now, but this was the first time that the words legally blind were used as a diagnosis as well.

I processed that for a moment and then we talked about some other issues regarding her vision and the start of school, seizures and the like and then said our goodbyes and we headed home.

While we were driving through the rolling hills of farm land on this beautiful fall night with all the trees part way through there colour changes I started to think about what I had heard.  What was surprising was that it didn't matter.  When I had heard the diagnosis of severe CVI for the first time I teared up, I could feel the lump in my throat and it seemed like it was one more thing that she had to deal with.  Not that I was surprised by it, but it was now out there, on paper and official.  This time was different.  Hearing that Sophie was legally blind didn't phase me at all.  I said that to my mom and realized that I was in a different place now.  Sophie is no different this afternoon than she was this morning.  Even though it wasn't a diagnosis that I had expected or ever even considered, it was ok.

I know that we do the best we can to make her environment just right for play and learning and we will continue along that path.  It was just another diagnosis to add to the already very long list, so really, what's one more.  If anything, it makes me that much more proud of her for everything that she accomplishes in spite of all her diagnoses.

The Communication Book

Sophie's first few weeks of school have provided us with many new opportunities for learning new communication skills to teach Sophie.  The Augmentative Communication Services OT and PT are nothing less than stellar and we are so excited to get things in place.

Our major hurdle right now is not Sophie, but the assistant that she has.  I won't get into it here, which is why the blog has cobwebs lately, but lets just say I am exhausted and still fighting for what I know is lacking.

The ACS OT and PT provided us with a Communication Book for Sophie to tell us with symbols what she did each day at school.  It is very cool.

Sophie gets to choose what her favourite things from each day were.  She shooses a Boardmaker symbol for each page.  We vocalize each symbol and show it to her as well.  Right now she is just learning what each symbol represents.  Some of them are very abstract.

 

 

 

 

Then she gets to ask us what we did and we can talk about it.  :)

We are working with more and more symbols with Sophie.  We will be getting Boardmaker at home soon and I can't wait to start making symbols for her for all our activities that we do each day.

 

Sophie's teacher is very supportive of using the symbols in the class.  She asked to have some at Sophie's desk so that the children in the class can talk to Sophie with her symbols.  YAY!!  The core words symbols are also going to be joining the words on the word wall.  So much inclusion happening, we are so excited.

 

Going to big school

The day we had prepared for for almost 3 years was upon us.  Sophie was on her way to big school, she was off to grade one.

She was so ready and she seemed very excited when we arrived at school.  For the first time we weren't just dropping Lucas off, she got to go in the school and settle into a class as well.

She has loved it.

However it has been two of the most trying weeks of our lives with Sophie for something that is not medical.  We have some major, major, major issues with the support staff provided to Sophie.  Did I mention major issues? 

We are working on it.  I am losing sleep.  I was shedding tears.  I am now in full on mamabear mode. 

The important thing is that to this point, Sophie is still loving the new experiences and making friendships!  The children in her class are nothing short of everything we expected.  Curious at first, but now accepting, friendly, helpful and sweet towards Sophie.  Our whole reason for sending Sophie to an inclusive classroom.  Her teacher is wonderful and has lots of ideas for the year.  Her therapy team and school nurses are all totally on board. 

Lucas' friends are coming to say hello to Sophie on the playground at recess and lunch.  They are so special to us.  She eats it up.  Especially when Lucas comes to say hi as well.

Lucas is loving grade four.

 

Grade four.  It seems impossible while rolling off my tongue.  But there he is, in the big kid hall that seemed so far away even last year.  He is learning french and loving it.  I am so proud of him!

 

We will get through this mini crisis with Sophie, we always do.  Her neurologist told me one day, a few years ago, that this will be my job.  To be her advocate, that I will always have to be there for her, that she will need me when she is in school.  He was right and I am taking those words to heart.  He was also the first of many Dr.'s to tell me that Sophie should be in an inclusive class.  That he believed in her abilities. 

 

 

I do too.