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.  

Irish Dance Competition

Julia has been in Irish dance classes since the fall and just had her first Irish dance competition - known as a feis - this past weekend.  She is a young beginner so she was in the first group to compete at 8:30am.  Lucky for us the feis was held about 1.5 miles from our house so our morning routine was similar to a school morning.

Julia loves a stage!  She loves to perform and since we arrived early she decided to practice on the "stage" - a roped off portion of the stadium hall - where she was dancing first.  The more she practiced the more she seemed to only want to dance her jig.  We kept trying to have her leave the stage and relax a bit before the competition started but she didn't want to leave the stage area.  It was actually quite funny to see her so into it all.

The reel was her first competition.  I reminded her a few times that she was doing a reel and only focus on the reel before she went on stage.  When her time came to dance she made up a couple of steps.  It seemed like she was mostly doing a jig but was mostly making the steps up as she went along.  She kept perfect time to the music and her footwork was really nice but I have no idea what dance she did!  When I asked her what happened she told me she was nervous out there and forgot what she was supposed to do. Even still she placed 4th in the dance and received a medal for it.  She is thrilled with her win!

Waiting for her group to go on stage.  She seems a bit bored but she told me afterwards that she was nervous.

Waiting for her turn to dance and smiling nicely.  Some children were crying and didn't want to dance but most of the little ones didn't mind it at all.

Emma LOVED watching all the dancers and cheering for Julia!

Once she finished her reel she had about 20 minutes before her jig, plenty of time for her nervous jitters to work their way out of her system.  Her jig went perfectly and she seemed much more at ease!

Overall, Julia's first feis was a huge success, she is very proud of her 4th place medal, and we were so happy to be there to cheer her on!

Driving Lessons - 4 year old style!

Navigating the world of power mobility for Emma is a bit of a puzzle to me.  I'm not sure why it feels so complicated for us since it seems like it comes together for other people much easier, but we are plowing forward with our complicated journey of power mobility.

Our main challenges:

• Emma's school PT is not skilled in power mobility so we are working on it during sessions at a satellite campus for the local children's hospital.
• Emma is lucky to have a powerchair to use thanks to a generous friend who passed it on to us.  It fits her great but we are looking to explore alternative driving options outside of the joystick.  Since Emma didn't purchase the chair there isn't any medical company really supporting this effort.
• Her private PT asked the main campus hospital and the durable medical equipment (DME) company to ask about switches for the powerchair.  The local hospital can help us purchase some but don't have any to loan out.  We would like to test out options to see what we should purchase.  The DME company is not getting back to her on it.  I asked the DME and it seems they likely don't have loaner items for us to test out before we order.  So Emma is still using the joystick while we figure out a better way for her to learn to drive.
• We don't have an easy way to transport the powerchair, so for now we are leaving it at the satellite campus in a special closet and Emma uses it during her 2 sessions/week.  That is working ok for now but we eventually plan to move it home once we get some switches to help her drive.

When Emma first stared learning to drive the powerchair she didn't hold onto the joystick for long periods and when she did hold on she went around in circles because her arm tone kicked in and pulled her arm toward her body (see this post for an early video of Emma in her powerchair).  Emma loved going around in circles!  But that will not give her independent mobility so we removed the joystick from the chair arm, adjusted one driving program to exclude reverse, and mounted it with velcro to a tray and placed it in the center of Emma's lap.  

This has worked out well.  She is now able to hold onto the joystick for extended periods while going relatively straight.  At first she would only go for about 10 feet but now she can drive it for about 200 feet.  Quite an accomplishment!  Here are some videos of her driving her chair down a very long hallway last week.  

Things we'd like to try to help Emma drive and steer the chair better:

1. A head switch behind her head that will allow her to move forward when pushed and will stop when she brings her head forward.  Her head control has really improved with her new manual wheelchair and we both think that she has enough control to use her head in this fashion.  AWESOME!
2. A switch for left and a switch for right that she can activate with her hand.  That way we will start with forward, left, and right to teach her how to drive.  As she gets better we could explore more freedom of motion - perhaps with a joystick that includes a guide or a different handle for Emma to get a better fit for her motor skills.

So how are we going to make this happen?  One thing I'm going to explore is making an appointment at the wheelchair clinic Emma uses to try out the different options.  The wheelchair person there knows Emma, has some switches on powerchairs available, and I totally trust her recommendations.  Ideally, we'll get Emma in the clinic for a few hours to test out the options and then move forward on either borrowing or buying the best fit! 

The other thing that is happening is I plan to take Emma to the Abilities Expo next week and talk with various switch/power mobility vendors to see what we can do.  Having so many vendors under one roof will be the ideal opportunity to help us move forward on getting Emma what she needs to continue on her journey to power mobility.  

If anyone has any suggestions that might help us, please comment below!  Thanks!

Detailed Communication Update

Emma has had more than her fair share of evaluations over the last four years.  She has had overall evaluations and individual evaluations for speech, PT, OT, hearing, and feeding.  These lead to areas for improvement, goals, progress to goals, etc.  It's quite tiring as a parent and my strategy for dealing with these is to not really focus on them and instead keep my focus on Emma our precious beautiful child.

We have a very typical family life but lately I've realized that each year I tended to focus on a key area of development for Emma.  Last year it was on her movement because Emma so desperately wanted to move.    She was quite successful and learned to use her crawler to crawl, her gait trainer to walk, and started working on driving a power wheelchair.  This year we continue to build on those skills while we focus on her communication.  Because I so desperately want to hear her "voice" - whether it's communication cards, iPad apps, an eye gaze communication device or her sounds - and Emma is showing more of an interest in getting her voice.

Her team at school is amazing to work with and I am so excited to have them help us navigate the world of communication!  Earlier this school year they used a card communication system, a Dynavox with a head switch, a Dynavox with two switches, and a test of the Tobii Eye Gaze system.  They also started testing the ECO2 from PRC company but it was a short trial because it fell to the ground and broke on the second day.  Let me say that the mount used for the trial will not be the one we will purchase should we choose that device!  It was sent out for repair and our hope is that it will be at the school next week for the test period.  Once we have given Emma a chance to learn and use the ECO2 we will then choose which device to order and then go through the appropriate (and likely long) process of getting insurance to purchase the device.  

We are not only focusing on high-tech options, though.  The main reason is that it is much easier to have a blend of high tech/low tech options while Emma is trialing out devices since she isn't overly familiar with the screens and how to navigate them, custom screens are not all programmed for her activities, and we don't want her to get fatigued too quickly and make communicating harder for her.  So we have implemented a lot of low tech communications that are used throughout her day in addition to the high tech that is used.

We still have the hand signal Yes/No that we use all the time and her team is asking her many times throughout the day to indicate a Yes/No response.  For example, if Emma is on the swings they will push her a bit and then stop and ask her if she wants them to push her some more and Emma will need to indicate Yes/No.  There is also a communication book that Emma has at school with laminated pictures (PECS).  This is used everyday - for example, there is a page with arts and crafts items and during arts and crafts activitites Emma will need to select the tool she wants to use to make the craft such as crayon, scissors, glue, etc.  This helps Emma make a choice, indicate her preference in participation, and helps us reinforce vocabulary.  To facilitate communication with all the children at snack time her SLP added photos of her classmates and is using them to discuss what her classmates are eating and it seems Emma is happy to "chat" at snack.  Colors are also a big focus of her class right now and she has color PECS cards that are used very frequently in circle time, craft time, and individual therapy sessions.  

The huge take-away from all of this is that Emma is taking a more active role in participating in classroom activities.  While many communication opportunities have been available to her all year, in the beginning of the year I would see reports that Emma chose in 1 out of 10 opportunities in the classroom activities.  It would be slightly better in one-on-one sessions in a pull out room.  However, recent conversations have been so exciting because Emma is choosing more than 80% of the time and most times she makes a choice 100% of the time!  This is BIG!  This is REALLY BIG!  

Emma's entire team believes that she is one smart cookie and now we are on a path to really get to know more about her.  Her making choices will allow us to get a better picture of what words she knows, and where she needs a bit more help.  It gives her more control over her activities, her environment, her life.  It is so wonderful to see this change in Emma.  I hope her desire to gain expressive language communication continues to blossom and grow.  

I firmly believe that communication opens a lot of doors for people regardless of their physical abilities and so want this for my little girl.  Thank you to everyone for all the prayers - they are working.  I also want to ask if you would be so kind as to continue to pray for Emma's communication.  We are truly blessed!

Wordless Wednesday