Endless summer fun

It's unheard of that we would get a 3 week stretch of temperatures in the the 80s in August but it is happening!  So, while we have it we're taking full advantage by hitting a lot of fun outdoor events.  It feels strange to be able to do so many outdoor activities in August.  Emma doesn't tolerate the heat too well so we usually wind up finding indoor fun options in July and August.

We continued our field trip fun week with a tour of the Herr's potato chip factory.  This place is actually farther away from my house than I expected.  And we hit more construction delays and traffic than I expected.  So I wasn't surprised when we showed up at 10:10 for our 9:50 appointment and didn't see any of our friends there.

When we went to the registration desk after much discussion and flipping through papers I found out that my girlfriend had, indeed, changed the tour from Tues. to Wed. due to the crazy rain we had but I somehow missed the message that our tour time was changed as well.  I thought we were too late to enjoy the tour when, in fact, we were about 1.5 hours too early!  What to do, what to do?  I haven't really ever had this problem before as we tend to run on the late side of things.  The factory is in the middle of what appears to me to be nowhere although I'm sure the people that live there would be able to set me straight.  I was banking on that when I asked the girl behind the counter if there is anything to do while we wait.  The one girl was clearly too young so she just laughed at me - I immediately disliked her.  The other girl - God bless her - suggested we check out a park down the road and off we went with a stash of potato chips bought at the factory store.  We found the park easily and were really excited to see that it was actually a HUGE, fantastic park and a great place to visit in and of itself let alone as a time-killer before an appointment.  The girls played and snacked and I snapped a few photos before we headed back for the tour that included a short video, a walk through the pretzel and potato chip operation, and snacks.  We even were able to try hot potato chips right off the production line, which was big hit with all the children.

The park would have been better with our jogging stroller instead of the wheelchair.

I sure would have loved exploring the trails a bit more, but the wheels weren't suitable for it.  Emma didn't mind!

A few of the crew that toured.  The rest headed to the great park before heading home so I missed snapping a complete group photo.

We ended our field trip fun week with a trip to a local garden estate for some Friday fun.  We became members in June and are hoping that the wide paths will be a great place for Emma to practice driving her power wheelchair.  We are ever hopeful even though we are still in appeals on the denial.  Still, it's a great place to explore and since lots of our friends have memberships it's a good meet-up destination.

We have 2 more full weeks of summer vacation.  I wonder what we'll do next???  We have a few more fun adventures planned so stay tuned...

Local summer adventures

This summer we had a list of things we wanted to do.  There is still about 3 weeks left to our summer and we are working on completing most of them.  I posted closer to the beginning of summer that showed we started it off with a bang and have done some dribs and drabs posts since then.

Now that our summer camps are over, we reclaimed the month of August for family fun!  Horray - that's my favorite kind of fun!  I seriously can't get enough of hanging out with my little ones and I feel like they are growing so quickly.

Last week we went to the science museum.  I am a scientist by training and I really miss playing with things in the lab.  Hanging out there made me realize just how much I miss it and I wonder if there is a chance I might be able to find some part-time work that is only during the school year (lots of us stay at home Mom's dream about this perfect schedule) that includes getting my hands dirty in a science lab.  Doubtful, but I'll look into it.  I might just have to rely on our yearly membership to the museum to fulfill my science side :-)

GLOW was the special exhibit geared to hands on exploration.  There was a section with costumes and you could dress up as fireflies and jellyfish.  We decided to forgo the costumes and stand in the firefly capture jar to check out the view - this made the girls all giggly!

Butterfly room is always a favorite stop for me.  Julia finds it a bit warm but was up for it and Emma is happy to check it out as long as there are other people in the room she can watch.

Digging for dinosaur bones

Fossil Prep lab had a learning session.  They told us about a dinosaur they are currently working on that was found in MT.  How did we never see the fossil prep lab before on all our visits?

Panning for shark teeth.  Cut out for a wheelchair is quite nice, but it falls short in being truly accessible unless you have super long arms.  

Starring in their own dinosaur movie.  

This week we took advantage of the *slightly* cooler weather to visit a park we'd never been to before.  I had won tickets to the carousel and mini-golf at the silent auction fundraiser at Julia's school so Chris met us there the other day after work for some Monday evening fun.  It was a fun place to visit.

The park had the oldest remaining original fountain in the city was up and running, a small-ish playground with an accessible swing and monkey bars, a snack shack, a carousel and mini-golf.  The park is in the historic district so everything was USA themed.  The carousel even had a bald eagle instead of a horse in one slot and that is what Emma rode.  Julia rode a dolphin, although I'm not exactly sure how that made it's way onto the national themed carousel?  The mini-golf had obstacles made out of local historic landmarks and I just loved it!  I have a feeling we'll be back.

When did you get SOOOO BIG???!!!!  Emma is staring right though me to the campers running all over the place!

Sisters swinging next to each other.  Melts my heart they can swing next to each other and it's not something we take for granted!  Emma is also much stronger this summer because she was never able to sit in these swings before without added attachments.  Both girls are nosy as ever and watching the campers again!

Such a cutie pie!  This girl melts my heart.   

Is that a hole in one?????

Emma was interested in mini-golf for about 3 holes.  She reached out for the club and even helped swing and hit the ball.  Surprisingly, she did quite well!  Then she decided she had enough and wanted to people watch everyone on the course that did NOT include anyone in her family.  Her stroller was thus positioned for optimal non-family people watching and she was smiles the rest of the night.  Silly girl!

Girls Rule!

Boys....need we say more??!!!

Wildlife in the city.

We have about 3 weeks before the start of school.  The fun will continue.  How blessed and lucky our family is!!!!

Preschool Graduate

Emma's preschool follows a 12 month schedule.  They have the same number of school days as other schools but they spread it out over an entire year.  I didn't think we would like this schedule at first but we LOVE it!  I sure wish other schools would adopt it.  There is still a long summer break and several week long breaks through the year.  I think it really keeps the children (and parents, teachers, therapists, etc.!) from burning out and doesn't require all the review in the beginning of the year.

Her school year is now coming to a close and today her class had an end of year ice cream party.  There were several students graduating to kindergarten and they wore caps and gowns and there was a little ceremony.  It was beyond cute!!!!  I teared up seeing Emma in her outfit walking up to get her "diploma."  She stood so tall, so proud.  She looks so ready to take on the challenge of kindergarten.

She has grown in so many ways during her two years at the preschool and has had an incredible team encouraging her in her daily endeavors.  She is loved by her classmates and her team of teachers and therapists.  It was at this school that Emma found her voice (ECO2 device) and met so many of her academic and developmental goals.  It prepared her to take on the world of kindergarten in a way that I couldn't have imagined when she started school.

Emma's friend at school wanted to dance with her to the music so he took her hands and helped her move to the music.  It was completely unscripted and heartwarming. 

Emma loves an audience and attention.  When her teacher put on the graduation music and it was her time to stroll down the aisle she strolled just long enough to get to see the crowd of people and then she stopped.  Typical Emma!  After a bit of encouragement she continued on to her teacher to get her diploma.  I caught it on video and can't stop watching it.  My girl walked down the "aisle" and received her preschool diploma.  What a milestone for her!



Her class performed a song for everyone.  It was about stars shining and growing.  Emma doesn't really sing so her speech therapist set up a touch lamp for her to turn on and off at certain times during the song.  It was a wonderful way for her to participate!

There was a video slideshow of their year and it was so wonderful to watch.  I never tire of the slideshows - it's such a nice glimpse into the magic that occurs during the school year that we as parents don't typically get to see.

So many people came up to us and told us how much they loved seeing Emma each day.  She always greeted everyone with a huge smile and brightened their day.  She will most definitely be missed, but it's time for her to share her zeal for life with a whole new group of people.  Although Emma has a lot to learn in her school adventures that have only just begun, it is evident to so many of us that Emma is so much more a teacher than a student.  She teaches people to laugh with great abandon on a very frequent basis, to smile in the face of adversity and to inspire greatness in others.

The world needs the brightness Emma gives it and we are all the better for having spent time in her own brand of sunshine.  Congratulations our sweet Emma Bean!!!!

Kindness and fun

Last night we were reminded that the world is full of kind people and that we all need a bit more fun in our lives.

Dinner was not the highest point of my day.  Emma refused to sit in her chair as she has for weeks now.  I guess she is telling us she hates the chair.  I do, too.  I hate that she needs a special chair to sit in.  I hate that the multitude of seating options - since when did it become natural for me to sink into some therapy speak???!!! -  err, chairs we've tried for the last almost 6 years haven't worked.  I'm working on getting her another one (Rifton Hi/Low chair that gets rave reviews from parents in similar situations) but we don't have it yet.  So we try and make due with what we have and promise her something better soon.

Julia sat in her chair but said dinner was boring.  She is getting bored of the food and really didn't want to eat it.  Huh?  I told her she can go be bored in her bedroom.  Emma had a similar reaction to the dinner and she got to be bored in the living room.  Chris realized I had enough of the dinner and ate without a peep other than to say how good it was...truthfully, though, it wasn't really the dinner "conversation" that put me in a sour mood.  It was all the whining and crying for the hour before dinner followed closely by louder whining at the dinner table.

I had enough.  It happens to even the most patient of us.  The one time of day we are all together and I want it to be fun.  And so we were going to have FUN if it killed us.... but thankfully for all of us it didn't. :-)

Dinner was dismissed and I directed Chris at loading up the car with our bikes, Emma's bike trailer, her special tomato seat and Julia's helmet.  Emma giggled and squealed the entire time watching him load up.  She is always up for an adventure and it put me in a better mood immediately!  Julia was not happy about our planned adventure and told us so.  She isn't really outdoorsy.  Chris looked exhausted from work and didn't look much happier than Julia but kept it to himself.  I love that man!!!!!  We piled into the car and Chris backed the car up the driveway with the bikes on the rack without hitting the house or the window unit air conditioner and I was so grateful.  I'm a terrible backer upper under the best of circumstances (which is really quite unfortunate since I have to back up the driveway several times a day!) and know that in no way would I have made it out of the driveway with everything intact.

We went to the park and tested out a new path.  It is 1 mile in and 1 mile out.  Two miles.

I didn't exactly realize it would take longer to load and unload the car than to ride the path.

Two miles we rode our bikes and everyone's mood was completely changed.  We all were in better spirits and were definitely having fun.  I was thinking of doing the trail a few more times but Chris and Julia were thinking of ice cream.  As their luck would have it Mr. Softee pulled into the park just as we were finishing up our trail ride.

Should we get ice cream after the dinner fiasco?  Chris finally decided to toss aside his original decision of no for a yes.  I think the fact that he wanted ice cream may have had something to do with that.  He ordered 2 ice creams - one for Julia and one for him to split with Emma.  And when he went to pay for them Mr. Softee told him the guy before us paid for the ice cream.

Kindness.  It made me smile and my spirit felt lighter.

We stayed at the park for about another hour playing on the swings, biking down the hills while screaming with joy, checking out the fully ramped tree house type structure which delighted the heck out of Emma.  It was fun.  We all decided we need to do this again soon.

Tree house ramp

AAC Update: Emma's progress with the Eco2

This summer we are focusing on Emma's communication.  This is important to me since she will be starting Kindergarten in the Fall at a new school with all new teachers and therapists.  The one thing that is making me rest easier about this transition is that her fantastic one-on-one aide will stay with her! I can't imagine how anxious both me and Emma would be if the school decided to use a different aide...

Anyway, in keeping with a communication focus we added in some Speech therapy sessions with the AAC specialist at Emma's hospital.  We've had 4 sessions so far and I've had quite a few A-Ha moments.  These sessions are as important to train me on the device as they are for getting Emma to become a more proficient user of her "voice".  The SLP picked up on Emma's social focus right away and decided that we should encourage her to use the device for social situations.  We decided to show (instead of hide) the "talk" core word.  And in the activity row I programed in things that Emma might want to talk with others about.  To start we are programming in 2 different topics with 3 buttons each.  The idea is to eventually program in some "Pages" so she has a lot of choices about conversations with others.  This, however, is the first step towards that goal.

For example:  Emma lost 3 different teeth recently.  That is something most children want to talk about so I programmed in the following activity row buttons.

• I lost my tooth.
• I put it under my pillow.
• The tooth fairy took my tooth and gave me some money.

The idea is to change these frequently so she can start conversations with people.  Another example was something I programmed in after our vacation.  She was able to tell her friends and team at school what she did on vacation without me writing it in her communication notebook.  The following was programmed in three different buttons in the activity row of "talk".  They were programmed after skipping a space between her tooth fairy talk and the vacation talk.

• I went to the beach for vacation.
• I swam in the ocean and the water was warm.
• I went on the boardwalk and rode in a lot of rides.  I like the rides the best.

I love how adding in the "talk" section has opened her world to initiating and participating in conversation rather than focusing on her wants/needs with her core vocabulary.  It took a while for her to get this change in the way she can use her talker but I think it's starting to click.  She selects that talk button frequently and has used all 3 phrases for her topics often.  At first she only used one but now she is up to selecting all three.

I want to incorporate other fun ways for Emma to use her talker so I brought her favorite book of the moment - We're going on a bear hunt - to a Speech session for ideas on how to incorporate it into her talker so she can read along with me.  Since there are so many repeated sentences in this book we decided to program in along the top row with a space in between each phrase the phrases as follows:

• We're going on a bear hunt.  We're going to catch a big one.
• What a beautiful day.  We're not scared.
• We can't go over it.
• We can't go under it.

We added in the core area the fun words:  Swishy Swashy, Stumble Trip, etc.  and we used Julia's voice recorded saying those fun words.  Emma really likes reading the book with us and amazed me with how she intuitively knew how to use this Bear Hunt page.  I teared up because she was so into reading the book and knew exactly what to say and when to say it.  We did turn taking and where I would say the lines that weren't programmed into the device such as Oh no a River, We've got to go through it, etc.  I wish I had a video of her doing that but she gets so distracted when I take a video she won't do anything on camera.

Another recent change is Emma prefers to use her hands to access the talker rather than her eye gaze.  This is both harder and easier for her.  Easier in that it is quicker to make word selections, harder in that her hands don't work so well and she needs some help.  She has demonstrated that she is very accurate with her hand use to both me and her SLP at the hospital.  He determined this by having Emma use his hand to stabilize her arm rather than my hand.  When he gave her a bit too much "assistance" with her arm she yelled at him in her manner and then took over.  It's funny - she doesn't want anyone putting words in her mouth!  He is very seasoned in AAC (actually, he has worked exclusively on AAC for many years) so his progress notes will be particularly helpful in her upcoming IEP meeting when we set new goals for her.  When setting the goals higher than expected based on her recent performance it generally goes over better coming from a professional than me saying it as her Mom.

School is also reporting that Emma is looking to use her hands over her eyes for the talker.  They are reporting that she is selecting appropriate words when using her hands for the activity they are doing.

I took a couple of videos this morning before school.  Here is Emma using her talker inside when she tells me how she feels, talks about what we did last night and then tells me she wants to go outside.



I'm excited that she told me so many things using her hands (which is quite new for her) while clearly not in a great sitting position  - it was a spurt of the moment conversation that she started that prompted me to get my camera out to take a video and continue our conversation.  I had planned on putting her in her wheelchair with the talker on her mount to chat but she had other ideas so I went with it.