Walker transformation

Ben's first walker that we actually purchased ourselves was the Gator (pictured below).  It is a fairly large and heavy walker.  We initially chose it because it works better outside than other walkers we had tried.  (In the end, we ended up also purchasing a Nimbo as his "indoor" walker...mainly due to the messiness of Canadian winters.)

 

Well.  Ben LOVED his Gator.  LOVED it.  But...he has now outgrown it.

 

 

 

There is not a bigger Gator.  The next one up is actually the Crocodile.  And it only comes in Yellow.  Not Red.  And Red is Ben's colour.  He wants EVERYTHING to be red.

 

Regardless, he needed a bigger "outdoor" walker.  So we went ahead and bought the yellow crocodile (used) from his CE Classmate "Sarah".  And he absolutely refused to use it.  REFUSED.  Wouldn't even try it out.  Unless I painted it red.

 

So.  Off I went to the hardware store to find some red spray paint.  Painting it is actually the easy part...it's NOT painting the other parts of it that was the hard part.  Plus I had to remove all the stickers that Sarah had put on it.  It probably took me 2 hours to remove the stickers and then tape up the sections that weren't to be painted.  And about 3 minutes to paint it.

I did 2 coats and then let it dry over night....and then spent probably another hour taking all the tape off.  But doesn't it look awesome?

 

 

And the most important part?  Ben LOVES it.  And very happily goes everywhere with it.  It's now "him".

 

 

The treadmill

After my last post, I've had numerous questions about the treadmill that Ben is using.

Because of this great blogging community that we are in, I was able to purchase the treadmill used from Amy of A Life Less Ordinary.  Her daughter had used it as part of her rehab after she had SDR and Amy was kind enough to offer it to us as Ben was having SDR last January.

I quickly took her up on her offer.  Logistics, however, proved a bit difficult as they live in Virginia and we live in Canada.  After agreeing on a price, Amy boxed it all up and and headed over to FedEx for a quote...well...they quoted $1,600 to ship it! 

So shipping was obviously out!  Luckily, I remembered that my parents would be driving their RV back from Florida to Canada in May and would hopefully/maybe be driving near where Amy lives and be able to pick it up for us.  As it turned out, they were going right through Amy's city/town and it was super easy for them to pick it up and bring it home to Canada for us.

For some reason, it took us months just to get it out of the box.  I'm not sure why...but we just couldn't seem to get around to it.  Then finally, a few weeks back, I came down after sleeping in a bit on a Saturday morning to find it set up in my family room.  And guess what?  Ben LOVES it! 

I think he's been on the treadmill every day since.  Sometimes just for a few minutes as part of something else or sometimes for up to a half hour while he watches a video on TV.

Now, to answer everyone's question.  The treadmill came from a company called Carlin's Creations.  You can go check them out if you want.

James' mom over at Jump in for James has already contacted the company for information so once she finds out some info, I'll try to post it here...or at least link up to her blog.

At home therapy

Now that Ben is almost 5 years old (just 11 more days of being 4) and so mobile, we are finding it much easier to do physio at home with him.  Actually, these days we are opting more towards doing therapy at home as well as fun physical activity vs. traditional physiotherapy.

Our main physical goals for Ben in the next year is to improve his independent standing, learn how to use forearm crutches and maybe even starting taking some real independent steps.  One of the main ways that we work on core strength and balance is to have Ben use his quad canes at home regularly.  When using his quad canes, he has to do ALL the work.  Unlike when he uses his walker and momentum does so much.

In order to encourage more quad cane walking, we started setting up "courses" for him to follow while using his quad canes.  We use painters tape (masking tape would work as well) to create arrows that show him where to go.  We also use a sharpie to number the arrows.

Here is a video of him following the arrows around the house.  For this course, the arrows were numbered all the way to 100 and when he got to the end, there were 2 Hershey kisses for a prize.  The course went all through our house, out on our deck, up the stairs and even over and under beds.



Over time, this "course" has evolved.  It went to including little notes along the way like "have a seat and rest for 2 minutes" or "it's time for a little snack, ask mommy for a banana and a glass of milk" or when walking by a mirror "make a funny face in the mirror".  Those notes started to motivate him when just following the arrows started to get boring.

We've also started to include other therapy type activities such as walking on his treadmill.  Check out his treadmill walking below:


Today, we did another course.  This time, both Ben and Daniel had to follow the course and they both had tasks they had to complete in order to earn puzzle pieces.  By the end, they had collected all the puzzle pieces and could put it together. Ben's first task was to "walk around the island using your forearm crutches...each turn around earns 1 puzzle piece for a maximum of 5 puzzle pieces".  Daniel's was similar but instead he had to hop on one foot around the island.  Ben also had to walk on his treadmill, earning 1 puzzle piece for each minute.  They both had to print their names on our easel and draw a happy face (fine motor practice).  They then had to identify Canada, the USA, and Madagascar on a map, earning 1 puzzle piece for each country.  Ben had to walk upstairs holding onto my hands while Daniel had to walk upstairs backwards.  We even incorporated chores by having them earn puzzle pieces for cleaning up their bedroom.

The whole course took me about a half hour to prep and took them over an hour to complete.  We got things done, did a lot of physio and had a lot of fun at the same time.

Now, they are asking for a treasure hunt.  I'll put my thinking cap on tonight and make something up for tomorrow.  I'm thinking that there will be clues that tell them where to go for the next clue and work them throughout the house.  But I will have them complete tasks in order to EARN the clue.  The hard part is to figure out something for the "treasure".

So...my question to you is...how do you make phsyio fun at home? 

First day of school - update

Well.  The first day of school is now complete.  Thank the lord, because I don't think I can handle any more of this first-day-of-school-with-twins-and-one-with-CP stress.  Seriously.  Enough already.

I was going about enjoying my morning on my own.  Then the phone rang.  It was 11:30 and already their teacher was calling.  She assured me that both boys were doing well, but that Ben was complaining of being tired.

Apparently, they did more walking than normal this morning.  They did a tour of the school, went to music class and of course, went outside for recess.  It was now lunchtime and she was wondering if it was OK for Ben to use his wheelchair when they went back outside to play.

(Some background:  The plan is for Ben to use his walker for the most part.  It's to be used for all outdoor time as well as for longer distances inside the school.  His quad canes are also there for use for shorter distances like to the washroom, water fountain or library, which are all about 20 feet from the classroom.  His wheelchair is also at the school.  However, it is only to be used for fire drills and field trips.)

Well.  To be honest, I didn't know what to do.  As Ben's mom, I know that he tires much more easily than other kids his age.  I also know that he often complains that he is tired, but that if motivated can walk A LOT more than he lets on. 

I was really conflicted.  But I held my ground.  I really didn't want to set a precedent on his first day at school that it was OK to use the wheelchair.  I want him to WALK at school.  I want him to push his limits just a little bit each day.  I want his endurance to improve. 

But, of course, I then went on to stress for the next 2 hours that I had made the wrong decision.  1:30 couldn't get here fast enough!

Turns out, I made the right choice.  Ben's aide admitted that he was playing them and they almost fell for it!  He did great with his walker outside after lunch and they are starting to see what he can do.

I am so glad I held my ground.  Phew.  First hurdle over with...I wonder how many more of these "decisions" I will have to make this year...

Ben and school - Part 2

Over the summer months, there was no contact with the school or district whatsoever...exactly as I had expected.

However, we did get to meet with the PT (I'll call her Lisa) that will work with Ben at school as she attended one of Ben's regular PT sessions in order to meet with him as well as discuss the level of intervention I wanted to be provided.

Before meeting with Lisa, I had always been quite anti-PT-in-school.  I know that this isn't the norm and that most parents want as much services at school for their children as possible.  I guess that I felt that I really didn't want Ben singled out and pulled out of class.  Ben is just like his peers when it comes to cognitive, speech and fine motor skills and I really felt that the best place for Ben was in the classroom with all of the other kids.

Well...that was before Ben had SDR.  And before I realized how tired Ben still gets and that PT at home after school was not likely going to work as well as I had envisioned.

However...I was still skeptical.

Until I meet Lisa.

I can't even tell you how much I liked her, how much Ben responded to her.  The first meeting went great.  She got to see Ben work on his independent standing as well as his forearm crutch walking.  He totally performed for her.

After she saw what Ben could do, we talked about how much intervention I wanted for Ben.  She suggested that she see Ben once every other week (this is the most she can offer due to her case load).  She also talked about how beneficial it would be for his Aide to see him at these sessions in order to incorporate what they are working on in his every day school routine.

We also discussed how the next 12 months is a critical year for Ben as he continues to progress as the SDR and how focussing on gross motor skills during kindergarten and grade one will not take away from the learning he'll do in the classroom...basically because she could easily tell that he is above-age-level when it comes to letters and numbers, etc.

So.  In the end we agreed that she would seem him once every two weeks at school.  And I felt more than happy with that arrangement.

To be continued in part 3...

First day of school!

I just love this picture of them so much!  They got up well this morning, had breakfast, got dressed and all ready for school.

Drop-off was painless.  I really can't believe how well it went.  They each chose a table to start at...Daniel chose an alphabet puzzle and Ben chose to the drawing table (because as he told his aide, "I'm really good at drawing"...gotta love the confidence!).  Then they both waved and said "bye Mommy, bye Daddy" and that was it.  Easy-peasy.

Now, I'm counting down the hours til I can go pick them up and hear about how their first day went. 

Ben and school - Part 1

(As I was writing this post, it got really long!  But I don't want to leave anything out...so I'm going to split it in 3 parts (I think)).  Here is part 1.)

As I said in my last post, Ben and Daniel start kindergarten tomorrow.  And as most of you already know, Ben has CP and some gross motor challenges that make going to school a little different than it is for his typically-developing brother.

It's been an interesting process working with the school in the year leading up to today.  In our school district in New Brunswick, Canada, kindergarten registration for public school occurs in October of the year preceding the start of kindergarten.  Once a child is registered, there are a few events during the year to get the family and the child ready for school.

In early November, there was a parent information night.  I mostly found this night to be waste of time...at least for us.  The focus was on what a typical 4-year-old should be able to do.  Because both of my kids have been evaulated "to death", we pretty much know what a typical child should be doing at 4-years-old.  However, I do believe that many parents have no idea so this information was likely quite helpful to them.  The point was for the parents to identify where their child might be lagging behind and then of course, work on this area in the next 10 months before school started.

After this meeting, I introduced myself (and my other half) to the school's principal and explained our situation.  She assured me that Ben would be assigned an Educational Aide at school based on what I said, but invited me to schedule a meeting with herself as well as the resource teacher, if I wanted one.  Of course, I took her up on her offer.

That meeting happened the next week.  I believe that both the principal and vice-principal attended as well as the resource teacher.  They gave me a tour of the school and we just talked about Ben and how the process would work.  It was a pretty simple meeting but I left feeling pretty good about the school and the people that work there.

In late November, Ben and Daniel both attended a 1-hour "intro to kindergarten" at the school.  This was open to all kids that had registered.  It was held later in the afternoon (after the "real" kindergarten kids had gone home) in the kindergarten classrooms.  Parents stayed in the classroom with their child(ren) and the kids got an intro to what kindergarten might be like.  The teacher read a story and then they moved through three different work stations (tables) and did a different activity at each one.

Over the winter months, all kids registered for kindergarten undergo a half-hour assessment.  This assessment looks at their cognitive, social as well as fine and gross motor skills.  After the assessment, the parent gets mailed a report card on how they did.  Basically, the child is given "red", "yellow" or "green" for each area.  Green means go - the child was assessed as age-appropriate for this area.  Yellow means "needs attention"- perhaps the parent should spend some time working on this with the child,  and Red means "needs help" - as in perhaps you should seek professional help such as an occupational therapist.

Ben got all greens except for gross motor which was basically "not assessed". And Daniel got all greens except for a yellow in fine motor (which was not unexpected).  To be honest, I was absolutely thrilled with Ben's assessment.

In June, all children registered for kindergarten attend another kindergarten try-out.  However, this time, the children stay behind in the classroom with the teacher while the parents have an information session elsewhere in the school.

In anticipation of that try-out, I called the school to schedule a meeting to talk in more detail of how school will work for Ben.  We had our meeting the week before this try-out.  This time, I attended along with the principal, the vice-principal, the resource teacher, a kindergarten teacher (it turns outs she is their real teacher for this year), and Ben's private physiotherapist.  I also brought the boys along as well as their babysitter as I wanted them to see Ben and what he could do. 

The real point of this meeting was to have them prepared to deal with Ben for the try-out session.  We talked about Ben's gross motor skills, the seating arrangements, playing on the playground as well as toileting. 

Our babysitter and the kids left after I felt that they had seen enough of what Ben could do.  Then we talked in more detail about Ben's abilities and challenges. 

Overall, it was a very informal meeting.  No forms were filled out and no papers were signed.  Again, I was reassured that Ben would have an aide for kindergarten.  It seemed very strange to me that there is no formal "IEP" process that I keep reading and hearing about from everyone else in the states and even in other parts of Canada.  However, Ben's PT has attended lots of these types of meetings in the past and she thought the meeting went great.  She thought the people were great and that they asked really good questions.

At the end of the meeting, I was told to call the school the week before school starts to have one last meeting and hopefully meet the aide that would be assigned to Ben.

The try-out occured the next week and it went really well.  Both boys enjoyed it and there were no issues whatsoever.  I should point out at this stage that we are keeping the boys in the same class at kindergarten.  I'll likely do a post on why we chose this another time.

So that was it for the preparation year.

To be continued in part 2...