Our new Wheelchair Conversion Van

BIG things are happening in our life.  I feel so very blessed on a daily basis and know that many of the happenings are the result of letting God work His magic.

One BIG thing that happened is we purchased a wheelchair accessible van.  WOWZA!  We have been thinking and wanting one of these vans for a long time now but have not been able to find one that we can afford.  The price tag on these vans are ridiculous for a minivan - up to $65K new and the used ones are typically upwards of $30K.  At that price, we'll take two please!  Ha!

We told pretty much everyone we know that we are on the lookout for a wheelchair van and our wonderful social worker forwarded me information on one that a local family was selling.  It was a fairly new model - 2010 - and had low miles.  It also had the rear entry option that we thought would work best for our family.  There was a lot of details that we had to work out for us to buy this van since we were buying it from a private party, the owner was deceased and it was registered in a different state, but it all came together so nicely in the end.  Let me just say that I have NO doubt that this van was meant to come to Emma.  All along the way of us purchasing this van I could feel my Dad was at work...and Mom, too.  Thanks, Mom!  The owner of the van recently passed away and that is the reason the family was selling it.  I won't get into all the details, but let me say that it became clear to both us and the sellers that my Dad and the original owner met up in heaven and arranged the whole thing.

And now we have a wheelchair accessible van!!!!!!  A van that Emma loves to sit in more than she loves to sit in the driveway and watch all the happenings in the neighborhood - and that is saying a LOT.  This van opens up a lot of opportunities for us with the most exciting one being that we can now take Emma places with her power wheelchair!  As she gets better at driving her chair and is starting to enjoy the bit of independence that it gives her we want to expand her driving capabilities by teaching her to drive in areas with more people (like the mall).  The van also lets us run several errands without having all the lifting involved with getting Emma in and out of her car seat and the chair in and out of the car.

NOTE:  We were just testing how the chair fits in the car in the video above.  We do have a seatbelt for Emma that attaches to the car in addition to her chest harness that is not shown in this video.

Since there are many different styles of wheelchair vans, I'll give a few details on our conversion for families considering which van will work best for them.

• We chose a rear entry.  This seems to work best in our area since:  1.)  All the handicapped spots at the places we go are frequently taken and we need to park in a regular spot and a side entry wouldn't really work for a regular parking space  and 2.)  We go into the city a lot and nearly all the handicapped meters are at the end of a block or before a driveway so no one can legally park behind us making it easy to use a rear entry option

• The second row seating has seats that flip up.  If both seats are flipped up, then you can fit two wheelchairs in the ramp area.  We always have one chair flipped down for Julia and that works great for us.  Emma's manual chair is small so it can go right next to Julia if Emma is transported in her manual chair.  Mostly, Emma likes to travel in her power chair and that is much bigger so it fits in the back section of the van.  At first I didn't like Emma sitting so far back from me but she LOVES driving in the car in her power chair and I've gotten used to it pretty quickly and now don't mind it.  We can also flip down the other chair in the second row and take along a friend or family member for a ride or we can put Emma's car seat there for long trips when we don't want her to travel in her wheelchair.  

• The tie downs that came with the car are a belt style.  I have to say they work fine but are a bit annoying for the frequency that we go in and out of the car.  We are a VERY active family.  There are other tie down options that are quicker to use and we think we might change the tie downs in the near future.  Stay tuned.
• Overall, we are highly satisfied with this van configuration so far (click here to see the manufacturer details on the conversion in our van).  There are trade-offs with both side and rear configurations but this conversion seems to work better for us than I anticipated.  Already I've been to several parking lots with no handicapped spots left and the ability to park in a regular space with the rear entry was a big help.  

Side note:  Several weeks ago I threw my back out doing laundry - not that I needed one but it gives me yet another reason to find a reason to hate doing laundry!  It was so bad that I could hardly move for a couple of days.  NOT a good thing to have happen when your job is Mom to a non-mobile cutie pie.  I was seriously scared about what I would do should it not get better quickly.

Thankfully, several trips to the chiropractor and several weeks later my back is doing much better.  I am very aware of how important it is to keep my back in shape for the long haul - Emma is only 6 after all - and plan to add in more strength training at the gym.  This new van has already had a positive effect on my back!

Recap: Abilites Expo 2013 Part 1

This was the third year in a row we made a visit to the Abilities Expo.  It seems that each year we have a reason to attend.  Year 1 - we were looking for a new wheelchair for Emma.  Year 2 - we were looking at power wheelchairs.  This year - we looked at wheelchair accessible minivans and some new standers and walkers.  Let's hope that if we go next year our focus is on getting cool 3E Love t-shirts and gear because that would be MUCH better for our budget!  :-)

The most wonderful thing about this Expo is that any piece of equipment you could dream up is likely there for you to see, touch and ask questions from the vendors about.  It can take months to get our local clinic to bring in a piece of equipment we want to test if they don't already have one but if we go to the expo we can see them all at the same time and notice the pros/cons of each in real time rather than relying on our memory of what it was like when it was in the clinic.  That means a lot to us since Emma's needs are generally NOT cookie cutter.  Usually equipment - even (especially?) special needs equipment - needs some modification to work for our little angel.

Like last year, Emma and I hit up the Expo by ourselves and while there we saw a few people we know.  We wheeled in and out of most of the cars on display and continue to think the rear entry wheelchair van is our preferred configuration.  There is an option for a long rear entry or a short rear entry.  The long rear entry changes the configuration of the middle row of seats in the car to allow the wheelchair to roll between the two middle seats.  You can then add an optional rear bench seat that can fold down for more passenger seating.  The short rear entry only cuts out the rear of the car and leaves the middle row intact.  The wheelchair will not roll between the row but it allows use of the regular bench seats and standard leg room for the passengers.  I'm not sure what style we will end up with but it will probably be chosen based on price and availability.  We will wait until we actually take possession of a power wheelchair before we will buy a van.  We are currently in the appeals process with insurance for them to agree to buy her a power wheelchair and let me just say it is NOT fun!  Fingers crossed they reverse their decision....

Our other top to do while there was visit the vendor for her mount.  Blue Sky Designs was there with the Mount 'n Mover mount system.  I have to say that this company continues to blow me away with their customer service!  I wonder if it has anything to do with the fact they are located in Minnesota?  When I travelled the USA for my sales job MN was always my favorite state to visit because I found the people there to be the friendliest of the 38+ states I've visited.  I've always thought if it wasn't so cold it might be a great place to put down roots.  Anyway......we wanted to see the iPad mounts.  I had emailed the company this week letting them know who we were and what we wanted to see while at the Expo and Nick responded to the email letting me know he would be at the booth and would look out for us.  When we got there Nick totally took care of Emma!  He noticed right away when that her mount wasn't incredibly secure on her chair and wouldn't even put the iPad mount on it until he gave it a free "tune up."  I knew it was in need of service because I lost a lot of the screws over the last 6 months and *substituted* them with different ones (don't judge, us Moms do what we have to do)....it was on my list of things to ask Nick but he addressed the issues before I brought it up.  He noticed it was a bit wobbly and immediately set about securing it.  He fixed the attachments with screws from his demo parts, adjusted the tension on one joint (and showed me how to do it for future reference), made a couple suggestions on post height changes and added screws to another part.  Now that everything is up and running correctly (I didn't know about locktite and some other items he showed me to take care of the issues we experienced) it shouldn't need any further adjustments for a while.  I think the mount is very durable and we are all set for years of use.  We found the iPad mount with the bungee system to be exactly what we wanted so Nick took down our information and will send us one when he returns to the office.  This mount is slightly different than the one shown on their website that uses velcro.  Velcro won't work for us as Emma is not known to be gentle!  Luckily the bungee mount seems Emma-proof and we can get a quick delivery.  After all that flurry of activity I thought I had a photo of the bungee iPad mount but I don't so you'll have to wait for a photo until ours is delivered.

Before we left we met two men from the Hip Hop/Rap group 4 Wheel City.  They were really great to talk with and even though Emma was sick today (I had no idea she would spike a fever while at the Expo!), and we met them right before we were heading home, she perked up at their booth and even smiled.  The duo 4 Wheel City uses hip-hop music to spread a positive motivational message to people with and without disabilities and gives presentations at schools and other venues to reinforce the message to stay in school and never give up.  They even created a song and PSA with Snoop Dogg!  We bought one of their CDs and are excited about their mission and success and hope the positive momentum they have developed continues to bring them new opportunities to spread such a positive message!  Emma posed for a photo with the guys known as "Rickfire" and "Tapwaterz".  See that smile?  It was one of the spare few she gave out today.  If you are that the Expo be sure to stop by and talk with Rickfire and Tapwaterz and be inspired!

*Inch*stone Captured

When Emma was very young, when we first found out about her cerebral palsy, we thought that perhaps only her arms would be effected.  We saw that she wasn't using her arms or hands very good but we thought her legs seemed to be moving around pretty well.  I had researched a ton on CP and found that usually CP has the following effects:

• All limbs effected
• One side of the body limbs effected (i.e., arms and legs on right side of body)
• Legs effected

We wondered early on if it was possible that Emma would "only" have her arms effected and that the rest of her body would work fine.  Doctors didn't really have an answer for me and we started therapy to address her arms.  Chris and I expected that she would walk but maybe have trouble with writing.  Let's just say our expectations have been reset over the years because as of now she is neither writing or walking unassisted.  

Emma had THE BEST occupational therapist (OT) for early intervention and she was able to see her up to 3x/week and made a lot of progress with her hands and arms.  Since we moved Emma has only received OT at school and we've noticed that her arms were getting tighter and her resting position was often with her arms curled up, wrists bent and thumbs inside her fist.  She wasn't always in that position so I hadn't realized just how tight she had become until I noticed that in most of her recent photos her arms were in this non preferred position.  Here is a photo with her left arm in the curled up position, but lots of times she had been curling up both arms.  

I started to worry that most of the doctors Emma saw were not even looking at her arms.  They focused on her hearing, her legs, her hips, her feet, her feeding, her talking, etc.  Everyone I talked to about her arms sort of glossed over my concerns so I made an appointment for her to see a physiatrist and I'm so glad I did!  She is concerned with the whole of Emma.  Not arms, not feet, not ears, etc.  All of Emma and she listened to my concerns about her arms and made some very good suggestions and she is now on team Emma and in our every 6 months appointment rotation which makes me very happy!

Some changes we've made is focusing more on arm/hand/wrist stretches, purchased Benik splints to help her wrists and thumb stay in a more neutral position and added in an extra OT session outside of school (not sure I'm thrilled with the provider, though, so we will likely be looking around for an alternative provider that fits in our schedule).  

Emma with her splints on

The past couple weeks I've noticed some changes.  I've found her sleeping with her arms over her head on several occasions.  She has a hard time raising her arms up high and in rest she typically slept with her arms curled up or with them by her hips. And then this morning when I went in to wake her up she seemed to be starting to stir and she brought her forearms over her eyes and rubbed a few times.  She didn't rub her eyes with her fists, but did slide her forearm back and forth so there was no mistaking it was a rubbing of her eyes before she opened them like most of us do in the morning.  And then she opened her eyes and was a bit startled to see me standing over her smiling down and she giggled.  

When we were in Washington D.C. Emma was resting in the corner of a chair and she brought her hands to her mouth and put her finger in it like she has been sitting like this for years.  She hasn't and it was big news in my book that she was sitting like that while moving her arms so loosely.

Yesterday we visited the zoo and Emma was very interested in the animals - she is branching out from her love of watching people at the zoo to attending a bit more to the animals ;-)  At the giraffes she even reached out for the fence, placed a finger on it (wow, this is HARD to isolate a finger from her fist!) and then her open hand on it before swinging her arm over the whole bar.  I caught a bit of it with my camera and was so excited because this was a big *inchstone* for Emma.  

Emma's starting to use her arms more and it's worth documenting;  it's worth celebrating!  

What we've been up to

There are some major updates for Emma.  First off, we received her Eco2 with EcoPoint today!  I may or may not have looked out the window and paced the sidewalk in front of our house waiting for the FedEx guy.  We are so excited that Emma now has a voice that can't be taken away from her.  It's her very own personal talker - her voice.  I think something this important may need a name instead of her talker.  Maybe we'll call her EV (Evie) for Emma's voice.  When Emma saw what I unpacked from the box she giggled and giggled and crawled over to it.  She reached out her hand and touched it and made noises to me that I interpreted to mean she is so happy to have it back.  This is amazing for so many reasons, but the most important one is that Emma actually likes to use this talker to communicate.  We tried so many different methods and Emma remained indifferent.  Her speech therapist really got it right when she told me that it is the child that actually selects the device they want to use as their voice.  Emma sure did!

The other update is we finalized Emma's IEP!  The main change is we moved her from the morning pre-school classroom to the afternoon pre-school classroom.  This class is a bit faster pace and more academically challenging for her.  Also, this class is only held 4 days/week instead of 5 days so we will get some time back to devote to our field trip adventures.  Going from 5 days to 4 is a big deal for her therapists since her IEP has a lot of therapy time scheduled and they are worried about her missing too much of the typical classroom time.  One option we are exploring is me taking Emma to school on her day off for some therapy appointments only.  I'm confident we'll have it all worked out soon.  I'm thrilled she will be challenged a bit more academically while working with her same aide, teacher and team of therapists.  It takes Emma months to warm up to new therapists - she tries to skate through sessions until they catch on that she knows more than she is showing them.  None of that will be happening this year because they know more about her strengths and weaknesses.  Already she has been demonstrating how much she knows by answering correctly 100% of the time in her last three speech sessions.  Way to go, Emma!

Julia loves school and has settled into the new routine of 1st grade.  When Chris drops her off in the morning she wants him to move along on his way and doesn't want him to hang around for 5-10 minutes like the parents do in kindergarten.  She started taking the school bus home from school a few days a week and getting home about an hour earlier than she comes home with Chris.  The bus picks her up at school and takes her to the high school where she boards a different bus to her stop near our house.  I was a bit worried about the transfer of busses but she seems to be an old pro at it by now.  Another first grader in her school takes the same first bus and they like to sit together.  It's fantastic she has a friend to ride the bus with considering she goes to a private school quite a bit out of our school district.  The whole bus adventure is working out quite well.  Julia also stared religious education classes and she really loves it.  When I asked her what about it she loved the best she told me it's when she gets stickers.  Aha...it's so easy to please a first grader!  Our neighbor is teaching the class and I'm the aide so she also thinks that is lots of fun to have us in there with her.

We went away this past weekend to a wedding.  It was lots of fun!  The girls came to the service with us and loved looking at all the girls in their dresses.  My niece joined us on the trip and she watched the girls while we went to the reception.  They loved hanging out with their cousin and we really enjoyed the night out.  I think we'll have to do it more often!

Equipment Post - Bike Trailer and Special Tomato Sitter

The equipment posts continue with a bicycle trailer and sitter.

In Step Bicycle Trailer (note: ours is an older model so not exactly the same item as in the link here) 

• A friend passed the bicycle trailer down to us and it is a big hit with Emma.  She loves when we pull out the trailer to go on bicycle rides and whines incessantly until she gets in the trailer and hits the road.  Seriously, we have to try and hide it from her until it's all set up and ready to go!
• The trailer is designed for two children (I think that would be a tight fit but we don't use it that way anyway) and we put Emma's Special Tomato Sitter in the middle and attach it with the straps around the sling-type seat it has.  
• There is enough room behind the seat to include a soft side medium size cooler for our lunches and a picnic blanket with some room to spare.  It also has two mesh pockets on the sides that could hold a sippy cup or other items.  
• The legroom for Emma is enough but I would not consider it spacious.  Emma is very long, though, and the sitter reduces the legroom a bit.  She seems quite comfortable, though, and Julia has sat in it and told us it's comfortable and not cramped.  I guess we are just used to much more legroom but Emma keeps her legs bent in a sitting position instead of out in front of her.  You can see in the photo above how her legs are nicely bent and her feet are hitting the trailer in the front.  
• It folds up really easily for transporting in the car and it attaches to the bicycle quickly.  You basically screw the attachment thing to your bicycle and the bike trailer loops into it with a metal loop thingy.  Notice how savvy I am by pulling out my technical terms ;-)  From folded to up and running it takes about 3 minutes but apparently that is still a bit too long for Emma to wait if you heard her tell it!
• I had thought of these in the past but never thought Emma would be able to sit in the trailer for any length of time so I didn't want to invest in one.  I'm so glad it came together for us with the hand me down trailer and the sitter to make it possible for Emma to enjoy a bike ride.  We really love how the bicycle trailer gives us the chance to spend lots of time as a family being active.  We often pack it up in the car along with a blanket and picnic, hook our bicycles to the car bike rack and head out for a day in the city park.  

Special Tomato Sitter

I wanted to show a full shot of Emma.  As an added bonus you can see my messy yet functional sewing/craft table!  

• Emma received this as her birthday present last year so she could be at table level for family meals.  We bought her the size 2 which is targeted to fit children age 2 - 6 years.
• This material is easy to clean and the harness cover can be placed in the washer - nice features considering Emma is one messy eater!
• The harness is easy to adjust but it seems like we never have it at the perfect setting.  I guess that is because Emma is hard to get a great fit since she is quite squiggly at mealtimes.  I sometimes find this annoying.  
• The sitter is very light and easily portable.  It has two easily adjustable straps to attach it to chairs - one goes around the chair back and the other goes around the chair seat.  How you attach the straps allows you to position the sitter - either on an angle or straight up and down.  Emma's is on a bit of an angle since head control at mealtimes is a bit hard for her.
• The sitter can be used in the Special Tomato Jogger, but we use the liners instead.  We most often use this chair to eat and in the bike trailer which makes me very happy to have one piece of equipment that can function in multiple settings.  Emma would not be able to sit in the bike trailer without this sitter.

If you want to know more about any of the items in the Equipment series, please leave a comment and I'll respond!  Thanks!

Equipment Reviews - Wingbo and Swim Float

Emma uses a lot of equipment during the day for all different reasons - communication, positioning, transportation, and plain old fun!  This equipment ranges from relatively inexpensive to Oh My Gosh it Costs How Much???!!!!  And it takes up a LOT of space.  

Parents of children with cerebral palsy are often looking for honest opinions of equipment so they can decide if a product might/might not work for their child so I thought I would post our experience with the equipment we have on hand.  Also, we are going to the Abilities Expo later this week making this a good time to take an honest inventory of what we have now and how it is/is not working for us.  If I can find a link to the product mentioned I'll include it as a hyperlink.  I also want to state that I am not a professional and this is only my opinion of how the products work with my daughter so if you are considering purchasing any of these items feel free to check with your therapists to determine if they could be a good fit for your child.

First up is equipment we use that I associate with "summer" types of activities since our weather is getting warmer and we definitely are looking forward to summer here!

Swimming Head Float.

• There are a lot of floats out there to help children keep their neck above the water.  We were lucky that Emma tried out many different ones at our children's hospital aquatic therapy area with her physical therapist before we selected the Danmar head float as the best one for her.  This neck float was about $100 but it will fit Emma for many years so we thought it was a good investment.  She is in the size Medium - this photo was taken in 2010 and she was just barely in the size range for the Medium but her PT tested it out on her and we all agreed the Medium was a good fit (she would outgrow the small size too quickly).  I'm using this older photo because it might give you a better judge on the size.  We typically use this when swimming at in ground pools but as you can see here it also works well in a small backyard pool.  
• The rainbow strap is adjustable with a snap clip that makes it easy to put around her head even when I don't have help.  The material is very cushiony and I think it is likely pretty comfortable around her neck.  Emma has never complained about it so I think she agrees.
• Emma has never slipped out of the neck area.  We do stay close to her, though, keeping water safety as our focus when the girls are swimming.  Emma stays nicely above the water and is actually even able to swim on her own a bit with this neck float.
• For children that arch backwards a lot they also sell a float with a stability bar that will help prevent pushing her head backwards into the water.  This might be something to consider for children that have a strong arch or sudden movements.  
• We also have a Puddle Jumper float we bought at Target a few months ago.  I have to keep my hands on the strap at all times because Emma's head is a bit "top heavy" in it and if she doesn't keep her head up it will fall in the water.  I think it's handy to have both float options since they allow us to have fun while also working on some strengthening.  We work on Emma's head control while in the Puddle Jumper and work on standard swimming while in the neck float.  

Wingbo Swing.

• We bought this when Emma was a little over a year old and have been using it ever since.  At our previous house we would mount this outside in the swing set or indoors on a chin up bar and had a lot of fun with it!  In our current house we mount it indoors using the Rainy Day Indoor Playground mount  since the doorway is too large for a chin up bar and we don't want to put lots of holes in the ceiling to mount it with standard hardware.  
• Both Julia and Emma enjoy swinging in the Wingbo, but it is an especially good swing for Emma to work on strengthening her neck muscles.  I often play games with Emma in this swing like asking her to give me a High 5 each time she comes near me or passing photos back and forth with her or having her tap a ball out of my hand as she swings towards me.  
• The height of this swing can be adjusted so that she can swing freely in the air or so her legs can be on the ground to help her swing herself.  
• There is a little velcro strap that is used to keep her on the swing.  It isn't great at securing your child to the swing and Emma has jerked herself back before and would have fallen off if I wasn't right there with her.  I don't leave her unattended in the Wingbo and when this happened I was so glad that I always stay within arms reach.  For a while we used the Waist Trimmer that we bought at Five Below for $5 (now she is better able to use the swing without trying to fall and we mostly use the velcro strap that came with it).  The waist trimmer is great to use as a velcro band to secure Emma to various things so she can't fall over or out and it's very soft and forgiving fabric (its similar to this one).  

If you have questions on either of these items please post them in the comments section so I can answer them.  My next review will include her jogging stroller and what we use for her bicycle trailer.  

New Wheels!!!

Emma picked up her new wheels today.  She is one happy camper!

And, my goodness, doesn't she look like such a BIG girl???!!!!  She was ready to move on up from her adapted stroller. The Kids Up FAST served her well for the last 3 years, but she had outgrown it about six months ago.  We ordered the Zippie GS with a custom seating system about 4.5 months ago and have been *not-so-patiently* waiting for the insurance approvals then the order lead times before we were able to finally pick it up today.

Emma chose the bright yellow color.  She kept picking yellow when I showed her the many, many choices.  I wasn't sure how the yellow would look, but I think Emma was totally spot-on with her choice!  It gives her chair a nice pop of color to offset all the black components.

Side view.  Note:  Anti-tip bars are removed for right now.

This chair has some great features which we didn't know about when we ordered it.  To be honest we didn't know all the much about the chair when we ordered it because so much of it was custom that we didn't get a trial run before today.  Such is the way of custom order durable medical equipment.  

Here are a few of the things we explored today that got us excited:

• The arm rests easily raise or lower so Emma can relax her arms without accidentally hitting the larger wheels. 
• The side supports swing open so Emma can get in the chair easily and they also adjust width-wise with the touch of a button to adjust for added bulk of a coat or less bulk without a coat.   
• It is SUPER light.  I don't know for sure how much it weighs, but I'm thinking no more than 30 lbs. - obviously, without Emma in it ;-)  We ordered the folding chair, the non-folding chair is supposed to be even 1-2 lbs. lighter.  
• It came with an additional seat cover.  Perfect for our current potty training mode.  And the cover can go in the washer and then hang dry.
• The large wheels up front pop on and off with the touch of a button if you need to make it smaller to transport.  
• The total size of the chair from front wheel to back handle is much smaller than the previous chair.  I love that I can push Emma and not feel like I am so far away.  Actually, I can push her really easily by walking next to her and putting my arm on the handle behind her.  So cool!

But the single coolest feature of this chair, and the main reason why we selected this make/model is:

Emma can reach the big wheels.  She will be able to move the chair if she wants!  And she has already realized there is power in those big wheels.  She is interested in putting her hands on the wheels and is trying to figure out how to move them.  And we've only had the chair for a few hours!  Imagine what she might be able to do with those wheels when we've had it for a year...two years...three years!  

It is our understanding that this chair works best for children who will mostly be pushed by a caregiver but might like the chance to self-propel a bit, not for children who would mostly be self-propelled (for example:  children with spina bifida).  We configured the chair with larger wheels in the front and smaller wheels in the back.  This is because Emma's tone in her arms would not really allow for her to reach behind her to try and move the wheels.  With the large wheels up front it is more of a front-wheel drive chair.  The front-wheel drive coupled with a super responsive chair means that it can fishtail pretty easily - making Emma a super happy camper when we spin her around quickly and it mimics the tilt-a-whirl ride!   I think we'll adjust pretty quickly to the front-wheel drive, but imagine we will still give Emma the tilt-a-whirl ride effect once in a while.  After all, who could resist her giggle!

A super-special thanks to our wheelchair clinic!  We are so lucky to have a great team that knows Emma's strengths and weaknesses and was able to help us pick the best chair for her that gives her room to grow herself and her skills.  Plus, they always make Emma feel like a superstar!  We truly are blessed!

Little updates

The other week at school Julia's class was studying the letter L.  They had an activity where the children finished this sentence:  "Love is ...."  and then they illustrated their sentence and it was put on the bulletin board outside their classroom.  Julia wrote:  "Love is making crafts for my sister!" and her illustration is a picture of her and her sister with a heart and the word love.  My heart melts every time I think of this picture and sentence.  Julia is such a special little girl.  How lucky we are to be blessed with such amazing little girls!

In other news, Emma received her new toilet seat today!  I've posted on here before about our goal to potty train Emma this year - or at least get her into pull-ups most of the time.  She is doing really well at home and is mostly dry and using the baby potty instead of her diaper.  She started doing well at school, too, but she now has a new aide and is giving her a bit of a hard time and is refusing to sit on the potty seat at school.  I tried to get her on the seat with her aide at school and Emma refused me, too!  She can be quite stubborn when she wants and her legs are really hard to bend if she doesn't want them bent.  Once Emma gets more comfortable with her aide she should start to cooperate more with the potty training.  In the meantime we are working hard at home to move from diapers to pull-ups.  

I'm thrilled that Emma's Rifton potty seat arrived today!  It's the same one she uses at school so I'm hoping using it at home should make her more comfortable with using the same model at school with her new aide.  Here she is - fully clothed - testing out the seat settings while watching her beloved Sesame Street.  She looks like such a big girl in her potty chair, right?!!!  

The most exciting part of this chair for me is that it can be rolled over the toilet so I don't have to empty the chamber - score one for me!!!!!  Or, it can be used anywhere in the house with the chamber attached.  As of now I think we'll mostly use this in the bathroom because Emma is a big girl and needs to get used to going in the bathroom and having a bit of privacy.  

I think we'll have to take the baby potty we've been using with us when we are on the road because right now we don't know of any fully supported portable potty chair.  Anyway, we'll figure it out as time goes on like we always do.

Eye Gaze device trial: Tobii C15 with CEye

We've been working on a method of communication with Emma for a loooooong time now!  We have a variety of approaches - picture cards, hand gestures, iPad, looking at things, etc.  Most are initiated by someone other than Emma.  I've been looking for a way that Emma can initiate conversations, tell us all the good things going on in her head, and let us in on all her jokes because this girl is usually smiling and laughing!

This year at school we have a huge focus on her expressive communication.  Emma started using some scanning programs on a Dynavox and took to it pretty quickly.  I talked about it in this post.  Some drawback to this method are that it takes a long time to do the scanning and there are some challenges because of Emma's double whammy of hearing loss and poor motor control.  I have always thought that an eye gaze system would be a good option for Emma.  Last year we had a trial with the Dynavox with Eyemax eye gaze communication device and it was a disaster.  Make that a DISASTER.  I had high hopes going into the trial and came out feeling pretty defeated.  While there are many people out that that use and love the Dynavox eye system, it was not a good fit for Emma and so we kept plugging along with our various communication approaches.

I belong to a yahoo group of Moms with children with CP and a few of the children are doing quite well with the eye gaze systems so I didn't give up on the idea of eye gaze for Emma.  There were good parent reviews on the Tobii CEye and the PRC Echo2 devices so I talked with her SLP at school about wanting to try the eye gaze devices again.  Yesterday, the sales rep for the Tobii came to school for Emma to trial the Tobii CEye device.

I was reserved about the trial.  I remembered how excited I was for the Dynavox trial and I didn't want to be disappointed again like I was before.  I decided to go in with an open mind and see what Emma wanted to do.  No pressure on her or me.  Right off the bat the sales rep. impressed me.  He spoke right to Emma, gave her his business card first and then handed them out to the rest of us, asked her most of the questions.  Emma took to him immediately.  I'm sorry to say that it's all too often that people don't include her in the discussions just because she can't speak.  This man respected her as a person and knew that she was the most important person in that room for the trial.  It was very refreshing!

Emma tested the Tobii C15 and the C12 device.  The Tobii C-Series family of devices are "portable communication aids for text and symbol based communication, computer access and environmental control.  They are easy to set up and use, have batteries that can be replaced without having to shut down, feature side caps that can be changed and much more." (all items in quotes on this post are from the Tobii product literature)  The C15 device has a 15" screen, the C12 device has a 12" screen.  That is the main difference between the two.  Both were outfitted with the Tobii CEye, an "optional eye control module for the Tobii C12 and C15.  Accurate and precise tracking, works with most users, largest trackbox on the market."

What is an eye gaze device?  "Eye control is an alternative and complementary input method to using a mouse and a keyboard.  By looking at a screen you control the mouse and you click by blinking, dwelling (staring at the screen for a certain length of time) or using a switch."  The computer has a touch screen so you could also access it with your hands and we also tested where Emma would use her eyes to pick a box and then we would click the switch to select that box.

I have to say that it was super easy to calibrate the device for Emma's eyes.  It took about a minute!  I was very impressed with the Tobii for that reason alone.  After testing out several options, it seemed that Emma did the best with her eye gaze and a dwell time of 1.2 seconds.  We navigated through several screens.  There was a screen where she could pick a book she wanted to read and then it opened up and she could select the pages to have them read out loud.  She did great with that!  Here is a small video of her and the books that I took the second time she chose to look at books.  We had been working on the books for a while so she was getting a bit tired when I finally realized I should take some video.  The volume is low because she previously was playing music with the machine and her eye gaze and the volume was super high for that program so we had to turn it down.



We also had a screen where it looked like a storybook page and a child in a wheelchair was sitting at a table with his friends.  There were bubbles on the table and presents around and Emma could use her eyes to select items.  When she selected the bubbles with her eyes, a grouping of options filled the outside perimeter of the screen.  She then "played" with her eye and selected a few of the options.  One was "blow lots of bubbles", so her SLP blew bubbles for real.  Then she chose "let me blow bubbles" so we let her try and blow them.  She did a few other things, such as comment "this is fun", on this page and it really seemed to capture her interest.  It was a nice way to interact and I could see this as a great tool for actual activities in the classroom where we take photos of the kids and put them in the scene and Emma could call out her friends names, tell them to blow bubbles, etc.

Another thing she did during the trial was look at some flash cards.  We would ask her where is the *animal* and she would look at the screen and use her eyes to select it and then the device would speak the name.  We only had one card up at a time, but you could put several up there and ask her to select matching items, odd one out, etc.  I think she would have a lot of fun with this!  Here is a little video of her with the flash cards, again she was a bit tired when I pulled out the video camera but she was still participating!  The blue dot is what her eyes are looking at, in case you are wondering how to tell where she is looking.



We also tested out a fun little dice rolling page.  It is a random dice rolling generator we could use for things like playing a board game as a family.  Emma could use her eyes to roll the dice and then the dice outcome would pop up on her screen and we could then move her piece.  We could likely even put a command on that page that says "Can you move my piece?" or "Your turn" or "My turn".  I can see some really good options for this page!  The nice thing about this, too, is that we could use our fingers to select the dice roller and just use the device to play without needing actual dice.  It would let us interact with Emma a bit more and wouldn't put her as the odd one out.

Emma was really on a roll for this trial and so we put up a music page.  Emma could pick between different music and turn it on to play.  The rep then danced (see, I told you he related well to Emma!) until the music halted and she had to select more music to play for him to dance again.  He suggested this was a good page to play freeze dance with her classmates.  Emma seemed to really like this page, and it was a bit similar to Simon Says that I programmed onto her iPad that we would play sometimes.  It just seemed so much easier for Emma to access the screen with her eyes than accessing it with her hands.

The trial lasted for about 1.5 hours.  Emma was distracted for part of that time, but not as much as I would have expected.  I was happy to see that she was interested in the activities we were doing on the screen with her and she attended to them for a long period of time!  After all, 1.5 hours is a long time for a 4 year old to pay attention to something.  It's also a long time for adults, but we were all so into the trial I didn't notice the time going by.  Emma did so well that it was wonderful watching it all unfold.

So, where do we go from here?  The rep. suggested we rent the device for a month through insurance instead of asking them to pay for the device right away.  It is hard to get these devices paid for through insurance and he said there is usually better acceptance if insurance does a month's rental first.  The monthly rental is very high, and the device price is even higher.  I looked online and found our state's AT lending library has the older version of the device Emma tested available for an 8 week loan period.  I think we might want to start with that while we get the ball rolling with insurance.  I also think we might want to test the ECO2 device to make sure we are ordering the best one for Emma.  Insurance won't pay for another one for a long, long time so we need to make sure we order the best device for Emma.

Once again I'm excited about the possibilities for Emma's expressive communication.  I always thought her CIs would mean that she would talk, but maybe her way of talking will be different than I expected.  Maybe she will talk with a computer.  I am at a place right now where having her talk, in any way possible, is exciting to me.  I am excited for her, excited for her future.  I still remain positive that Emma will use her voice one day for communication, but until that happens we are pursuing other options and so far the eye gaze device we trialed yesterday seemed like the best option.  The future seems very bright, indeed!

Craigslist Find

We have a loaner power wheelchair for Emma that is not working.  It hasn't worked since we moved and I have not been able to successfully troubleshoot the issue.  I'm not sure if it stopped working right before or right after we moved, but the fact is that it isn't working.  So Emma is not getting any use out of the chair and isn't learning to drive it.  This is soooooo frustrating to me.  I spoke with the fabulous Denise at our wheelchair clinic and she told me she would take a look at it if I can drop it off.  The main hurdle in dropping it off is we don't have a wheelchair van to transport it.  And we didn't have a long ramp to use in lieu of the wheelchair van.

About a month ago I put a Wanted ad on Craigslist for a wheelchair ramp that was at least 7' long.  I sort of forgot about the ad (and kept trying to figure out a way to get the chair serviced!) until I heard from someone who was willing to sell me an almost-new-exactly-the-same-ramp-I-was-eyeing-up-on-the-internet ramp for $100.  This is a great deal since an 8" ramp with an 800lb. capacity cost around $500 new.  The ramp was in two pieces - you can take them apart if you need a narrower ramp - so I had to put it together for our use.  It cost me $0.66 for the screws at Home Depot to put them together.  The only hiccup to the ramp is that the ramp wouldn't go together without the handles in the up position.  I suppose this makes the handles a bit quirky but it doesn't pose a problem for our use.  We now have a ramp that I can use to put the power chair in the van for service and that we can use as a ramp for the back door to our house.  I'm thrilled and hope to drop the chair off at the wheelchair clinic this week.

Here is a photo of the ramp in use at our back door.

I love it when we are able to make something happen for Emma that doesn't break our bank!  I'm looking forward to putting this ramp to good use.

Ask me a question

We've been working on communication with Emma for a very long time.  And to me, it seems even longer ;-)

Emma had been doing great with a Yes/No response on the iPad, but the iPad just isn't always available for a question.  And then we moved and we have lots of kids in the neighborhood that include Emma and they ask her questions and it's awkward for her to have me get in the way with an iPad for her to respond.  It totally ruins the moment and then Emma ignores the iPad and me because there are kids around.  So I decided to try a method that works well for another family that I know.  It's low tech, super easy, and everyone including the kids can use it without any help.

Let me tell you what we are doing.  Basically, whoever wants to talk to Emma can ask her a question and then you hold out your right hand with your palm open facing her and your left hand fisted facing her and ask her yes (shaking right hand) or no (shaking left hand).  Emma thinks about her response and then reaches out for the appropriate hand.  It didn't take much time to get her to be very accurate with this method.  And since we've been using this a few weeks now she knows which is Yes and No so we don't have to shake it anymore.  I'm hoping that eventually you won't even have to say Yes and No when giving her the hand signal but that could come in time.  For now I'm super excited that we have a method that Emma seems to want to use and that anyone can use with Emma.  It's amazing how many people talk to Emma and now I don't have to answer for her all the time - good for her and for me!

The key to this method is consistency.  Keeping the Yes and No always on the proper side.  Emma's speech therapist at school talked with me about maybe replacing the Yes No with a card on her tray because apparently some people working with Emma have a hard time remembering which hand is which.  I nixed her tray idea pretty quickly because Emma is very rarely in equipment with a tray at home, we want to use the same method regardless of where she is (school vs. home), and it's not easily implemented with kids.  The reality is that Emma should be interacting with everyone and it's especially important that her peers know a way to involve her in a discussion.  I also said that her aid should know Emma's Yes and No and be able to remind anyone that needs a reminder.  Her SLP agreed with me.

But our discussion had me thinking and so I offered to create a card to hang on her wheelchair and other equipment so everyone would easily know her Yes and No.  The card I made is at the top of this blog post.  It's a 5" x 4" laminated card, so large enough to see easily but not in your face large.  It complements the other card hanging on her wheelchair that introduces Emma to people.  It's amazing how many people read her introduction card and then come up to her and talk to her.  Thanks to Tara over at Endless Jubilee for the introduction card idea!

Emma's introduction card.  Might be time to update this with a more recent photo - my girl is growing up!

Moving and a bicycle

This summer is going by in a flash!  We have been having a lot of fun, but have also been quite busy planning for our move.  It seems that we are getting closer to having everything settled - our move date into the house we are renting and a renter for our house.  I'll be happy when we are moved and settled in and life can go back to it's normal hectic way!

We've been packing up the house bit by bit and trying to get rid of items we won't use.  Surprisingly, we use most of the things we have in our house.  On the plus side that means that we have been doing a fairly good job of managing our "stuff" over the years, on the minus side it means that we are pretty much average when it comes to amount of "stuff" we have.  I always wanted to be one of those minimalist people but I guess that will have to wait - maybe I can achieve that when the girls are off to college, but I doubt I'll ever be able to live like that.  The really good thing is that we are no where close to the people I see on the tv series Hoarding:  Buried Alive!  Watching that show helps me put our possessions in perspective ;-)

I'm probably be offline until we are all settled in the new place next month.  I'm sure I'll have a great update on Emma's great bike riding skills :-)  She received her Freedom Concepts Discovery bicycle from The Variety Club last week!  We are BEYOND thrilled that Emma received this gift and hope to put a lot of mileage on it very soon.  Unfortunately, she can't ride it until we receive the spacers for the pedals (her feet are a bit too short to reach both pedals) that should come in about a week.  While we wait we are planning all the great places for a bike ride.  Can't wait to get it up and running.  Thanks so much Variety!!!!!!

4th of July

Happy 4th of July! 

Oh, how I love this holiday!  As I see it, there are two fabulous things about this holiday:  1.)  it's our faithful pup Finnegan's birthday and 2.)  it's located smack dab in the middle of the summer!

Because of these two things we are so lucky to be able to wrap up lots of fun into one day for the celebration of our nation's independence!

Today we had a lazy morning together making Finnegan all kinds of goodies for breakfast for her birthday.  Afterwards Chris and the girls took her to the park for a long walk (while I pulled together the dish we are bringing to the party later tonight).  She certainly deserves it :-)  I can't imagine finding a dog that is a better fit for our family.  And the love between Finnegan and Emma!  Well, it's really something to see.  I can't imagine our life without her and am so happy we've had an amazing 9 years together and we look forward to many more!

Finnegan caught lounging on our couch - she is NOT allowed on the couch and sneaks up there sometimes in the middle of the night

Tonight we are going to celebrate with some great friends for their annual 4th of July barbeque.  There will be a water slide, a kiddie pool, children running all about, great food and drinks, the children messy from eating popsicles and watermelon, and a rest on the lawn to watch the firework display.  We have been friends since our first children were born and it's so much fun watching them grow up together!  Each year just gets better!


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In other news, this weekend Emma's new jogging stroller was delivered.  We're so excited about how this stroller is already making things like walks in the park easier.  We do need a liner to help position her better but that is on back-order and we are putting it to good use while we wait for it to arrive.  Emma loves it.  Julia loves it.  Chris and I think we will get lots of use out of this stroller and are really excited to have it.

Victoria Flick 5K Recap

This weekend we participated in the Victoria Flick's Friends Foundation 5K Bubble Run.  It's an annual event that celebrates the life of Victoria Flick whose passed away at the age of 7 years.  The Foundation was created by Victoria's amazing parents who raise money and donate it locally to charities and families with special needs children to help pay for equipment that insurance won't cover.

We never knew Victoria, but we are sure we would have loved her!  We've seen many photos of Victoria and Emma reminds me of her a lot and Victoria's friends and family remark on the resemblance between Emma and Victoria.  I think it is the sparkle in their eyes and ready smile :-) We met the Flick's through our church and were immediately welcomed with love when we first attended the 5K in 2009.  It is an amazing feeling to be with Victoria's friends and family and have our entire family - and most especially Emma - greeted with open arms.  After the 5K there is a huge party at the Flick's house and we love to enjoy the BBQ, swings, games and pool after a morning of exercise.  I would like to invite all our family and friends to join us for this amazing celebration next year.

Here are some photos of the event.  Swoop, the Eagles mascot, was in attendance and joined Julia, Emma and Chris in their race across the Kiddie K finish line.  Chris ran the 5K and beat his goal time by more than 2 minutes while finishing 3rd in his age group.  I planned to walk the 5K course this year, but Julia was walking it with me and decided it would be more fun to walk a few minutes then head to the finish line to cheer Chris when he finished.  She was not nearly as excited about the walk as I was!  Needless to say, next year I'll have to ask Julia to ride her bike or something so I can actually finish the course while Chris races.

This year three charities received funding, with Variety getting a $10,000 check!  Wow!  Is this family amazing or what!  I am so happy to say that Emma is one lucky little girl and will receive her very own Freedom Concepts Discover 12 bicycle courtesy of Variety!  The bike should arrive sometime this week and we know the Flick's are a huge part of how Emma is getting such an amazing gift!  For those that aren't familiar with special needs bicycles, the price tag on one supportive enough for a child like Emma is in the thousands and out of reach for many families - including us.  Without the very generous gift of a bicycle from Variety we would not be able to afford one and Emma would miss our on a typical right of childhood - the joy of riding a bike.  Thanks to Variety and families like the Flick's, Emma will get the opportunity to enjoy her very own bicycle!

We feel so blessed to know this wonderful family and that we can participate in the annual 5K run/walk.  We're already looking forward to next year's event and hope we will have some family and friends join us!

Hat Free!

Before I go forward on this post, I just want to give a huge shout out to my Dad and to my husband for being such wonderful Fathers.  Happy Father's Day!  This year I didn't do a post for Father's Day so I wanted to make sure I got a shout out to them.

Now, onto the hats!

As you know, Emma has a profound hearing loss in both her ears - she is deaf.  In addition to being deaf, she also has very delayed motor control for her head and her body.  When her first cochlear implant was activated at the age of 14 months it was ridiculously hard to keep the magnet on her head.  And, if the magnet is not on her head she cannot hear at all.  I made it my mission to keep the magnet on her head for all waking hours and it was a losing battle - all the tape, headbands, etc. would not keep the magnet on her head.  We battled this for quite a while and found that the magnet would stay on her head the best when she wore a cap (pilot cap ordered from Hannah Anderson) and even better when I put toupee tape on the magnet and covered it with the cap.  When her second cochlear implant was activated at the age of 2, it was pretty much impossible to keep both CIs on her head with just the tape and so we continued to use the cap.  When we were at home we tried to keep the cap off as much as possible because: 1.)  Emma hated wearing the cap and, 2.)  I just loved to see her head and hair all done up without a hat!  But, really, to keep the magnets on her head so she could hear we had to use the cap or resign ourselves to putting the magnet back on her head the 1000x/day that it would fall off.  Remember, she doesn't have the best head control so her head was mostly always touching a seat or the floor or something else and the magnet would easily rub off from Emma turning her head back and forth.

This summer we finally have a handle on keeping the CIs on Emma's head so she can hear during all (or mostly all, they do occasionally fall off!) waking hours.  And while I would gladly keep putting a hat on Emma's head if it was the only way that she would be able to hear, I'm happy to say that we have just recently been able to go Hat Free!

A few things have happened to make it easier to keep the CIs on her head.

• Emma has better head control.  Although I know her PTs think it's not so great I'm thrilled with how far she's come with head control and know that it will only continue to get better! 
• Her head is not always rubbing against something.  She is commando crawling these days and if I lay her down on her back on the floor, she will have rolled over to her belly within seconds so she can get moving.  Emma also loves walking in her gait trainer that does not have a head rest for her and her ChildRite chair (the big Bumbo seater she uses) doesn't hit her head, either.  
• Emma is using the Nucleus 5 CIs with the compact rechargeable battery and it makes the unit much smaller and easier to keep on her tiny ears
• Our awesome audiology team found some new gear that helps keep the CIs on her head and I am so very grateful for them.

I'm completely delighted that we haven't had to use the pilot cap for the last few weeks!  Even at school we are able to tape the magnet on her head and use the ear gear to keep the CIs on her head with only a few touch-ups to the tape each day.  And I feel like things have gotten so much easier because, really, keeping CIs on a child with cerebral palsy is not for the faint of heart!

It's wonderful to see Emma - her beautiful blue eyes, her beautiful hair all done up in a matching ponytail, her huge smile - without her hat.  I can't even put into words how great it makes me feel.  It really is the little things in life that can make us appreciate everything a little bit more.

Ability Expo Recap

We went to an Ability Expo in New Jersey recently.  Holy Smokes!  When I went to the website to add the link I realized the expo was a month ago.  Time is really flying by!

Attending the expo was a great experience for us!  Equally great was that we left Julia for a day with the grandparents and so we could "play" with all the cool items without catering to her boredom schedule.  Since Emma loves people watching she was game for staying as long as we wanted and was thrilled to try out various equipment.  For the first part of the day we had Emma's iPad hooked up to her chair with the articulating mounting arm from RJ Cooper and it generated a lot of interest and we eventually moved it to the car after lunch so we could move at a quicker pace through the Expo.  We were pleasantly surprised at how easy it was to chit chat with some great parents of young children and it was fun to compare equipment, notes, experiences from the different areas on the East Coast.  Meeting so many other parents is something I don't think we really expected but we really enjoyed.

The highlight for Emma was when she tried out a tricycle at the Freedom Concepts booth.  We were so surprised to have her actually start to pedal the bike on her own!  She pedaled twice and smiled the entire time.  The bike needed a couple options that they didn't have there and the representative took down the measurements and configuration she would need to send us a price quote.  We received the quote last week (Yikes!  They are expensive!) and we are working on getting some funding to buy it for Emma.  How cool would it be for Emma to have a bike to ride?  Just SOOOO cool in this Mommy's opinion!  We'll keep you posted.

Today I talked to Emma's PT about the tricycle and found out the hospital has the exact trike configuration that Emma would need.  When I told him how serious we were about trying to get one for Emma he brought out the bike for her to try out.  I was shocked he never mentioned the tricycle to us before and he said that it never occurred to him since we are working on so many things with Emma and he only gets her one day a week.  Hmmm.  Emma surprised everyone by pedaling around the therapy area for about 25 minutes and fussed excessively when her PT tried to move her to another activity that we decided to let her ride for another 5 minutes.  We had to help steer the bike an sometimes line it up a bit so her foot was at the "top" of the cycle so she could pedal but Emma did 85% of the work in cycling around and it blew almost everyone in the therapy area (they all know Emma well!) away.  Her PT even said he got goose bumps on how good she did.  That's my girl!  And because I'm sure you want to see it for yourself, here is a short video from today.  Enjoy!



There were loads of cars and vans in all kinds of configurations to accommodate a wide range of equipment.  We looked at the converted vans and decided that we aren't really ready to take that leap right now.  Our minivan is paid off and we want to get a lot more mileage out of it before we get a new one.  Besides, the power chair that Emma has is only a loaner for now and I'm not sure when we'll have to give it up.  Emma's progress with the chair isn't going as quickly as I imagined and we are still quite a bit away from meeting the criteria of moving in a set direction and stopping when directed that is required for our insurance to consider buying a power chair.  We learned about a lift that would help us transport a power chair and still use part of our third row seating.  We are going to take a look at one in the showroom sometime soon.  If anyone has any experiences with these lifts let me know the pros and cons!

We looked at a special tomato jogging stroller that was super easy to push.  Emma will need the special tomato liners for the jogger and that takes the price up a bit.  We are considering this jogger but want to try some other joggers first.  I think we might be able to use a Bob Revolution jogger for a couple of years and there is a good resale market on them for when we need to move to the bigger jogger.

We also looked at manual chairs and power chairs.  Emma tested out two power chairs - the C300 from Permobil and a sit to stand chair from Mobility 4 Kids.  Emma seemed to perk up quite a bit when the sit to stand chair was moved to the stand position and she could motor around.  Since there were a LOT of people and booths around the Expo we did not let Emma drive without help.  Although she would like laugh and laugh if she ran someone over, I can guarantee you that she would be the only one laughing :-)  It was just a quick test in this chair, but it made me wonder why other companies aren't making sit to stand power chairs?  Here is a brief video of her testing out the chair and driving in the stand position.



If you have an Ability Expo coming to your area I highly recommend spending a bit of time checking everything out.  It's so rare to have all this equipment and experts under the same roof and to compile all the testing and information we had in one day would likely take us ages through our local hospital or durable medical equipment provider.

Adapted Computer Games

I am always looking for ways to incorporate technology options into Emma's entertainment and skill building (eye hand coordination, cause and effect, timing, etc.).  I have an older iBook that runs great with the internet and doesn't have any must-keep files on the hard drive so I've designated that as the girls' computer. 

Julia loves to play on the pbskids.org website and we have used the helpkidzlearn website with both Julia and Emma.  We also have a lot of files on powerpoint that move forward with a click of a switch but they don't seem to keep Emma's attention for too long.  Recently, Emma's teacher told me about the hiyah.net website and we are so happy that she did!  If you go to the website and select the Play Online tab at the top it brings you to a screen with a lot of different options.  We've only just started to explore all the options on this site so I can't speak for too many of the options, but I will say that we always wind up on Songs and Stories.  Clicking the Songs and Stories tab brings you to a screen of favorite songs - The Wheels on the Bus, Old McDonald and This is the Way.  Emma LOVES playing with these songs and you can open each of them in their own window so the song/game fills the screen.

We use the Don Johnson Switch Interface Pro to connect our switch to the laptop.  The school district had one available for Emma's use at home so we didn't have to buy one.  If you are interested in switch adapting your computer you might want to see if your school has one to lend out or if your state's assistive technology lending library has one available for you to "try it before you buy it."  We tried a couple fancier interfaces, but like this one the best.  

The really nice thing about the songs on this site is that there are so many photos to keep the child's attention.  For each line of the song there is a photo and to continue hearing the song the child needs to push the switch to get to the next line of the song along with a new photo.  This keeps Emma's interest up and she played the songs for about 40 minutes the other day with minimal assistance from me.  Ok, I'll come clean and admit that I hovered a bit while she was playing but she pretty much told me she wanted to do it herself.  She is really asserting her independence these days and is trying to do so many things herself.  Since there are so few things that Emma can actually do herself I was so happy to find a site that keeps her interest and has games that she can actually do all by herself!  That alone has me giving the hiyah.net site rave reviews.

For computer games I usually position Emma in her stander.  It is the perfect height for her to see the computer screen on the table and has a surface to position her switch.  It's also a way for me to sneak in some work on strengthening her neck without her realizing it.  

If you try out the website, let me know what you think.  And, if you have any other favorite websites that work with switches I'd love to hear about them - just leave me a comment or send me an email.  Thanks!