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...
Friday, September 7, 2012
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.
Thursday, September 6, 2012
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...
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...
New beginnings
Yep. It is the night before some big changes around here. You have probably already guessed it...Ben and Daniel start public school tomorrow. Everyone is excited and ready...lunches are packed, clothes are laid out, and backpacks are by the front door.
I'm hoping that this big change in our family life will also mean a few changes in my life. I'm hoping to blog more (that wouldn't take much as I haven't posted since June!), cook more, work more and basically just do more of the things that I've been wanting to do since those 2 boys arrived almost 5 years ago.
I have lots of topics and things that I want to blog about. I want to tell you about how Ben's school year will go (at least how I hope it will go), I want to tell you about all the progress he's making, and I want to show you all the cool things that he's been working on at home. But I won't do that tonight. Tonight, I will just tell you that we had an AWESOME summer.
This was our first summer with our trailer and we were out in it almost every weekend all summer long. This summer, we...
Played in the water...
Plus a million other things.
I can't wait to start blogging here more often. I hope that you all haven't given up on me...and still want to read what I have to write.
See you tomorrow...I'll be uploading "first day of school" pics as soon as I get home from dropping them off!
I'm hoping that this big change in our family life will also mean a few changes in my life. I'm hoping to blog more (that wouldn't take much as I haven't posted since June!), cook more, work more and basically just do more of the things that I've been wanting to do since those 2 boys arrived almost 5 years ago.
I have lots of topics and things that I want to blog about. I want to tell you about how Ben's school year will go (at least how I hope it will go), I want to tell you about all the progress he's making, and I want to show you all the cool things that he's been working on at home. But I won't do that tonight. Tonight, I will just tell you that we had an AWESOME summer.
This was our first summer with our trailer and we were out in it almost every weekend all summer long. This summer, we...
Played in the water...
Went swimming...
Climbed on cool rocks....
Started using forearm crutches...
Played with friends....
Had fun with our brother....
And went on LOTS of bike rides...
I can't wait to start blogging here more often. I hope that you all haven't given up on me...and still want to read what I have to write.
See you tomorrow...I'll be uploading "first day of school" pics as soon as I get home from dropping them off!
Friday, June 22, 2012
5 Months Post-Op (cross-post)
On Monday, we will be five months post-op. WOW. Amazing. I keep thinking back to a year ago when we were just starting to explore the idea of Ben having a rhizotomy and here we are now, already 5 months post-op. The surgery now is just a memory...
Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:
1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.
2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.
3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.
4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.
5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.
6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.
Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:
1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.
2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.
3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.
4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.
5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.
6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.
Sunday, May 27, 2012
Ben's New Wheels!
If you've been following this blog for long, then you know that it's been a struggle to find a bike that works for Ben. He's disabled enough that he can't ride a regular bike with training wheels. Yet, he's not disabled enough to need a full adapted bike that costs thousands of dollars.
Well. After many trials and much research, we have finally found THE bike for Ben! It's a Mini Tike from Trailmate. We weren't sure if it would work and after having made online purchases that haven't worked out, we weren't willing to buy it without trying it. Luckily, there was a dealer just 5 minutes away from where we were staying in Florida when we were on vacation a few weeks back so we could go try it out.
We only had to add a few things to the trike to make it work for Ben. We added a back rest and foot straps (as you will see in the video) and we've also purchased a handle which we haven't put on yet. We also have to get a hand brake put on it. For full disclosure purposes, the bike with all the adjustments came to around $500 (I'm not exactly sure as my husband paid for it).
I only got to see Ben try it for a few minutes when we were in Florida and have had to wait 2 more weeks to see him on it again as my parents brought it back to Canada for us in their RV. They got back home last night so we headed straight to their place this afternoon to pick it up.
Here's a video I got of Ben on it!
As you can see, he loves it! He has just one complaint though...he wants it to be red like the picture on the website...my husband and I have decided that if he keeps complaining, we'll take the bike to be painted. After all, most other kids get to choose the colour of their bike...so he should too!
Tuesday, May 1, 2012
Holiday Eve
We leave bright and early tomorrow morning for our annual family vacation to Florida. To say that I am excited is quite an understatement. After a very long winter of surgery, rehab and then of course tax season (my husband is a tax accountant and the deadline in Canada is April 30th), our family is ready for some quality time together.
Whenever I mention that we're going to Florida, everyone naturally assumes we are going to Disney World....but no, we're not going to Disney. We plan to relax! And that just doesn't happen at Disney World...it does however happen when you just spend a bunch a time at the pool and the beach.
Here are Ben and Daniel 2 years ago:
And then here's the whole family last year:
This year will be a different trip than the last two. Previously, we stayed for 8 nights at a very nice hotel/resort on Fort Myers Beach. We loved it there! It was the perfect place for young kids.
But this year, we are spending the first 4 nights in a hotel on Clearwater Beach (just the 4 of us) before meeting up with the rest of my family (my parents, my brother, his wife, and their 2 kids, and my sister and her boyfriend) at a huge house right on the beach just south of Clearwater. We rented a house (well...really, it looks like a mansion to me) for a week...it seems extravagant but will actually be cheaper than what we usually spend because we are splitting the cost of the house four ways.
I'm also excited to see how Ben gets around this year. We've decided to leave his wheelchair behind and just take his walker and a stroller. I really expect that we will only need the stroller in the airports...and I'm even hoping that he'll walk alot at the airports too. The house has 4 stories but has an elevator so I expect that he'll do great at the house and be able to get himself all the way to the pool and beach on his own. It is so exciting to see him walking so much these days...such a huge change from 6 months ago.
I will try to post an update or two while we are away...but I won't promise anything! I do promise to at least update you once I'm back home.
Whenever I mention that we're going to Florida, everyone naturally assumes we are going to Disney World....but no, we're not going to Disney. We plan to relax! And that just doesn't happen at Disney World...it does however happen when you just spend a bunch a time at the pool and the beach.
Here are Ben and Daniel 2 years ago:
And then here's the whole family last year:
This year will be a different trip than the last two. Previously, we stayed for 8 nights at a very nice hotel/resort on Fort Myers Beach. We loved it there! It was the perfect place for young kids.
But this year, we are spending the first 4 nights in a hotel on Clearwater Beach (just the 4 of us) before meeting up with the rest of my family (my parents, my brother, his wife, and their 2 kids, and my sister and her boyfriend) at a huge house right on the beach just south of Clearwater. We rented a house (well...really, it looks like a mansion to me) for a week...it seems extravagant but will actually be cheaper than what we usually spend because we are splitting the cost of the house four ways.
I'm also excited to see how Ben gets around this year. We've decided to leave his wheelchair behind and just take his walker and a stroller. I really expect that we will only need the stroller in the airports...and I'm even hoping that he'll walk alot at the airports too. The house has 4 stories but has an elevator so I expect that he'll do great at the house and be able to get himself all the way to the pool and beach on his own. It is so exciting to see him walking so much these days...such a huge change from 6 months ago.
I will try to post an update or two while we are away...but I won't promise anything! I do promise to at least update you once I'm back home.
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