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.

Tooth fairy, we have a present for you.

Sophie has had a wiggly front tooth for a few weeks now.  I was terrified that she was going to swallow this tooth like she did with the first tooth she lost.  I was so sad that I didn't get to see her first little tooth come out and have the chance to save it for the tooth fairy.

The possibility of Sophie aspirating on her tooth is high and we actually ended up having emergency x-rays with the last tooth because she was presenting like she had aspirated it.  It turned out to be a coincidence we believe and she was sick but didn't aspirate the tooth.

So as this tooth got looser and looser I was so afraid that she would swallow it too.  With the teething Sophie has been drooling like crazy as well.  But tonight I realized it was very loose so I got some gauze to wiggle it a bit and it came right out onto the gauze!  Her gums bled a tiny bit but I was so excited that it had fallen out so easily, I didn't even have the chance to try to pull it!

Her new tooth is already part way up and will fill in the space in no time.   The tooth fairy will be making a visit to Sophie's room very soon :) 

Grade one, here we come

We have had a jam packed end of summer and I hate that it is almost over!  It is always amazing how the last few weeks of summer just slip away in the blink of an eye.  We had another trip to the cottage for five days and had amazing weather and just relaxed.  No big hikes or long road trips, we just chilled.

 

For years we have driven past this old wooden floor iron bridge.  I have wanted to stop and do a photo shoot here for as long as I have known it existed.  I finally got my chance and I am so happy with the photographs that I captured.  I can't wait to stop here again when summer has turned to fall and I can take some photos with the leaves in their autumn glory. 

 

 

For a few days I was able to leave behind the chaos of planning for the start of school.  Sophie starting grade one has turned into quite the production over the last little while and even though I am excited for her to go, I am worried that she will not get the opportunity to shine, like I know she can.  I have now arranged to stay in the class with her for the first week of school.  We have learned that her EA does not have the experience we expected and there is much for her to learn if Sophie is going to have a successful beginning to her year in an inclusive classroom.

 

When we asked Lucas if he is excited that school is coming soon he told us he was excited since the first week of summer.  He shouted "I love school!"  I hope that Sophie will be having the exact same thoughts as she begins her journey at grade school.

Yesterday was a day with many tears as we said goodbye to the daycare teachers that have made Sophie's days there her fave place to be.  We have been attending the day care for 8 years now and it is sad to say goodbye and lose that comfortable place we call little school.   Lots of Sophie's friends are heading off to grade one as well and there were smiles all around and so much excitement in the air.

 

One last weekend of fun before we set off on a brand new adventure at big school with Sophie.  I know that I am nervous enough for both of us but with a village surrounding us and Lucas in the class down the hall Sophie is going to love grade one.

 

 

Easy as 1,2,3

With school just around the corner our house is becoming a flurry of activity.  There are going to be goodbyes that are sad, but lots of new faces to meet just around the corner.  We have many appointments this week and next

Our first, last appointment.  Saying goodbye to Sophie's Speech Language Pathologist of the last four years. 

 

 

We have learned so much from this friend and we are sad to say goodbye.  Giving Sophie a way to communicate has been my number one goal for many years now.  Working on yes/no and choice making has been something that we try to include throughout Sophie's day and Sophie has become very successful.  For some time Sophie has been able to give a smile for yes and look away for no.  She will now nod for yes and will vocalize sometimes with what sounds like a yaaa.  It is music to my ears.  Learning all of these methods of communication was not easy but so worth the effort.  We are so thankful that we had a therapist who believed in Sophie and knew that she was capable of learning anything that we worked on.

Her therapist Kim brought out some numbers and letters for us to work on before school.  Sophie and I got out her numbers and started using them right away.  First on a velcro board and then on the light box.  Sophie was all over it.

We are now in preparation mode before school starts.  We just learned that we have been picked up by the Speech Language portion of Augmentative Communication Services.  YAY!!!  We have waited 15 months on the waitlist.  Too long.  This means that we can hopefully get into full swing with preparing for a device for communication and we can figure out what to put on that device that will give Sophie a voice.

 

We already know that Sophie can rock the switch scanning with head switches and a latch timer. We just have to add the right info onto a device so that Sophie can tell us what she knows and what she is thinking.

For now we will keep plugging along, learning a little bit more each day and getting one step closer to having a communication plan for Sophie in place.

Summer vacation

We had a 10 day trip to the cottage for our big summer vacation again this year.  We had wonderful weather and went on a few adventures but mostly stayed close to the cottage and the beach.  Luckily over the years we have found the right balance of what Sophie can tolerate medically and physically and we can do so much with her away from home regardless of her disabilities.

In a strange turn of events Lucas had more health troubles than Sophie.  Lucas was having asthma attacks each night due to the heat and natural surroundings.  He is like me and is allergic to everything up north that is in abundance, like moulds, pollen and grass.  But he was fine and we didn't have to have any hospital visits up there like we have in the past with his asthma.

 Lucas had a blast in the water this vacation because it was non stop waves.  We had the boat out one day, the boogie board other days.  Knowing that we were missing the olympics we had some mini olympic trials of our own.

Lucas practicing his olympic speed walking lol.....

Sophie preparing for the women's marathon - freestyle, of course.....

We headed out for a day trip to Tobermory one day and ended up at the Bruce Peninsula National Park and did the hike there.  This was one of Sophie's longest hikes at the Bruce so far, she did 2K.  Lucas and I did 6K with 4K of it being more rugged, so Jason and Sophie headed to the museum.

Some more olympic trials this time on the balance beam, er, stump, whatevs....

Practicing the gold medal finish...

Lucas was really pumped to do the hike with me and he was trying to get me to do the 18K to Cyprus Lake.  This was at about 3 in the afternoon and we had one juicebox with us. :p

He was not too pleased that we were only doing the 4K Burnt Point Loop trail again.  That is until we were gone quite a while and hadn't come across a location marker for some time.  We both figured we must be close to the end as we had already looped around Georgian Bay. 

Then we got to the marker letting us know we weren't quite half way.  Blah.  But we continued on and before we knew it we were finished the side trail.  We all hit Dunks Bay for a swim after dinner and then headed home to the cottage.

We once again had two nurses with us for night shifts this vacation so that I could sleep and be fully awake in the day and enjoy my vacation as well.  Jason's mom also came up for a couple days so the kids loved visiting with her too.   Sophie was pretty worn out after this trip but we all were!