Tuesday, July 30, 2013

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

Tuesday, July 23, 2013

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.

Wednesday, July 17, 2013

Juggling summer camp

We are busier that ever this summer and it's been with mostly VERY fun activities.  Our whole family really settled into a new summer routine that includes late night bedtimes and more relaxed mornings.  This week, though, camp started for Julia and Emma started back to school for her summer session - both things the girls were looking forward to and love by the way!

Lazy morning earlier in the summer.  PJs on all morning and plenty of time to do science experiments!
I didn't realize how crazy adding in camp/school would make our schedule.  Since we aren't traveling as a pack like we were earlier in the summer it seems everyone has a different place to be and a lot of it is at the exact.same.time.

Here is how we kicked off our life with camp on Monday:
  • Get girls up and fed and out the door by 8:15.  Drop Julia off at camp at 8:45 and head to another town for Emma's 10am PT appointment (more on that later).
  • Drive Emma to yet another town to drop her off for school.  Try to feed her a bit of lunch in the parking lot but she is too busy looking around for her wonderful one-on-one aide, Erica.  She really missed her!  She told me so on her talker several times over the break.  When Erica arrives Emma decides it is time to immediately head into school and lunch can wait.  
  • Leave Emma at school and head back to my town for a chiropractor appointment.
  • After my treatment head to Julia's camp (if you guessed it's in another town you would be right!) to pick her up and head home in time for Emma's bus to drop her off at school.
We left the house at 8:15am.  I returned home with Julia ~3:20pm.  I drove just under 100 miles and went pretty much nowhere- ouch!  Luckily that was the busiest day of the week for me with it getting a bit better each day.  I'm happy to say I'm not contributing to global warming nearly as much now :-)

There are 3 days/week during camp that Julia and Emma need to be somewhere at 9am and they are in completely different towns or states.  One week it will be easy since there is a before care option that opens at 8am.  The other two weeks we've figured out a way to get everyone where they need to be on time.  

Who knew summer could be so crazy??!!  It sure will be nice in September when Emma goes to a school in our local school district.  Having her closer to home will be a very welcome change from the 35 minute drive to her current pre-school.

You might ask:  Emma starts school at 11:50am so why does she have to be somewhere at 9am?  Well, we decided to have her change PT places for about 6 weeks so she can use the Biodex Unweighting System that is housed at a different location.  What we do is suspend Emma with a harness over a treadmill and work on her walking.  The tone in her legs is just so very high that it makes it very difficult for her to walk in a gait trainer and she wants to walk so badly.  We thought we could try and train her muscles if we unweight her a bit to help her learn the movement without as much effort.  It's a pretty interesting concept and we're not sure if it will work but wanted to give it a shot.  She has a lot of tone to overcome so we're going to try and go 2x/week for 6 weeks and then evaluate the effect.  What we are seeing so far is that she starts out really tight and it's hard for the PT to help her bend and move her legs but that she gets better during the session.  And it's clear to everyone that she LOVES getting in the harness and walking on the treadmill.  She is one giggly girl!  

Here is a video of her using the Biodex unweighting system for the first time:

In about 3 weeks our schedule will settle down and we'll be back to summer without camp.  We will travel as a group and enjoy lots of fun activities together again.  Until then, I'll keep up the juggling act!

Tuesday, July 16, 2013


At this moment my house is relatively quiet.  I'm listening to one of my favorite CDs while the dishwasher runs in the background.  The doors and windows are open but not much of a breeze is coming through since we are in the middle of a heat wave.  The window unit air conditioner is off and the girls are off having lots of fun at camp.  I have 3.5 hours all alone today.  It's quiet.  This is my first bit of alone time since Julia's school let out 5 1/2 weeks ago and we were busy doing so many fun things during those weeks.  Oh, the fun of summer!!!!!!

So, I have a bit of time on my hands to spend as I please.  I've used a bit of that time to send out thank you notes, a letter to a young man we don't know but who has CP and is in the hospital for a lengthy stay and wants some cards to hang up, send a couple belated Birthday cards, made a few phone calls, cooked taco meat.  It's amazing how quickly I completed it all.  I still have a long list of things I would like to do.  Clean the bathrooms, run to the grocery store for the tortillas for tonight's taco dinner, pay bills, tend the garden, write, etc.  The to do list is never ending and I find comfort in that.  No matter how much or little I accomplish there will still be more on the list so I don't need to rush to complete most of them.  I guess getting tortilla has to be done before dinner but other than that it can all wait.......because I've decided to set aside the list and head to the gym.

The gym.  It's good for my body and good for my soul.  I never used to enjoy going to the gym at all.  Lately, though, I'm finding that I look forward to my workouts.  I have aches and pains where there weren't any a few years ago.  Carrying around an almost 5 year old is very different than carrying around an infant and I need to keep up a workout routine to avoid injury and keep my muscles in shape.  My body always feels better after a workout - less aches and pains and my mind is clear.  It's been too long since I've worked out during the day since only one of the girls looks forward to going in the gym's child minding play center.  I can't enjoy working out knowing one of my children is crying and unhappy in another section of the building.  So we opt for exercising together instead and go on bike rides, walks, swimming and have lots of fun.

But since I have a bit of time to myself now I'm heading to the gym.  The to-do list can wait.  Remember that if you come over and notice the house looks very lived in :-)

Friday, July 12, 2013

My monthly Hopeful Parents post is up

My Monthly post is up at Hopeful Parents.

CLICK HERE to read my post titled:  Wheelchairs and steps are not a match made in heaven

Thursday, July 4, 2013

Happy Birthday, America!

Julia had a sleep over at a friend's house last night so this morning Emma had me and Chris all to herself and loved it!  I took a few photos of our patriotic gal and had to post this.

We met up with Julia at our traditional 4th of July bar-b-q with friends and I was able to take our traditional photos of the girls and all the children and I'll share some of them soon.

Today would have been Finnegan's 11th birthday.  I missed her more than usual today.  Hope you enjoyed the Fireworks from your new view, Finney!!!!!  We love you and miss you!

Monday, July 1, 2013


This summer we've been doing so many fun things that it leaves little time for me to document it.  This fact really just makes me smile!  After all, isn't life all about participating in it ;-)  Here are some photos from our adventures.  Enjoy!
  • Mommy/Julia date day to pick strawberries.  

 I just adore her!
  • Daddy/Daughter fishing fun

Julia LOVED fishing!
Emma was more interested in the people watching than the fishing or the fish

Chris had a bit of fun by chasing Julia with the fish he caught!  I LOVE this photo!
  • The girls had some fun on a recent rainy day
Playing some computer games

Emma figured out how to move the screen door open and closed.  It took my breath away!  Love how she is using her arms a bit more even if it is to try and bust out of the house into the rain :-)
  • Swimming.  I'd say lots of swimming while the girls would say there is never enough swimming!  My girls take to the water like fish.

Julia's underwater handstand is getting really good!

  • Sleep-overs followed by sidewalk chalk art

Note:  Emma was in the wagon while I took photos.  When not taking pictures I held her in a sitting position on the blanket so she could join in the fun.
  • Boardwalk and beach adventures, where Julia proudly helped Emma on some rides even though her arm was sometimes crushed and hurt proving yet again that she is the BEST BIG SISTER EVER!!!!!