Showing posts with label occupational therapy. Show all posts
Showing posts with label occupational therapy. Show all posts

Sunday, 2 December 2012

Cautionary Tale with regards to Your Child’s Personal Care


 



I learned the hard way that even though you’re at a great school with highly caring and supportive staff.  Important things in your child’s educational program can get overlooked and even forgotten.   At my daughter’s initial commencement at school, she had a successful toileting program which was started upon her first the day of Junior Kindergarten.  She was taken to the toilet twice a day and managed to stay dry most days.  The same procedure was followed in senior kindergarten and again in grade one.  Actually in grade one she would be taken on schedule but also whenever she requested using a tech talk (speech output device).  Her Educational Assistant (EA) was very keen on teaching her the speech device and took her whenever she asked.  I loved how keen they were to help her with speech and toileting.

When Grade 2 started this past fall, I was pleased to hear that she had the same teacher, but once again she had a new EA.  At my daughter’s school board there is no consistency year after year as EAs are relocated to other schools.  I was very focused on my daughter’s education plan for the year and spent much time talking to the teachers about how we would help Ashley to learn to read.  They refined and came up with a great educational program in many areas.

 When your child needs multiple accommodations, it is inevitable that there are many things to communicate each day and in school meetings with the teachers. Unfortunately I recently made the big mistake of not enquiring about toileting at all before two months had passed.  I received feedback that Ashley was not that happy at school and didn’t want to walk. I didn’t understand why that would be so. Then three weeks ago, I learned at our Single Plan of Care Meeting that toileting wasn’t happening.   No one talked about toileting and unfortunately no toileting was taking place.  I found this to be grossly upsetting and I thought it must be addressed immediately. Unfortunately not everyone was comfortable with the process and it took close to two weeks to address this very basic human need.  This need was included on her IPRC statement and was discussed briefly with the staff in the days before school started.

I learned from all this, that it  is very important for parents of non-verbal kids to speak up and ask many questions, even inquiries that may seem somewhat naive.  It is important to continuously be hands-on, show the staff that they must work with your children to assist them in learning how to communicate, how to feed their self, toilet and walk in the most independent manner. No one cares about this more than Mom or Dad.

 I learned that this also happened to a close friend’s daughter recently to her child is also non-verbal.   Just today someone told me this kind of communication breakdown, oversight, misunderstanding or just plain lack of training happens to vulnerable kids all the time.  

I feel I played as much a part of this, as the school did, for not focusing on those skills for which she was reasonably competent and was just part of her basic care.  I feel bad this happened to my daughter and I hope the school will allow me to take a more active role in her care at school.  As Ashley has a 3 year old brother, it’s hard to find the time to be at school. However, it is something I will be making time for in the next few weeks.  I also plan to spend much more time at school with Ashley in the first few weeks of a school year to ensure everyone is comfortable with assisting her with walking, toileting, communicating and feeding my child.  I know that no one intended for this to happen, however it’s sad to me that I learned this kind of oversight happens to children like my daughter all the time.    For other special needs parents I’d love to know if this sort of thing ever happened to your child?  How did you find out?   What kind of questions do you ask in your child’s communication book to make sure that everything necessary is happening each and every day?  

Tuesday, 18 October 2011

My plea to the premier




Few people have that special touch,  a miraculous skill, that relentless dedication to their profession that make an incredible difference in peoples' lives.  This special lady Bernie who is a paediatric  physiotherapist has all those qualities.   My daughter had the good fortune to start seeing Bernie when she was just a few months old.  She was very fragile and her future was very uncertain.  Ashley needed Bernie's help to gain head control, roll over, use her arms to reach, and bear weight through her legs. I began to learn that she is one of the very best in her field and Ashley was so very lucky to have her on her team.  


Because of this lady, Ashley is now a walker, and even a soccer player.  Ashley has a new level of independence with her walker and every new accomplishment is like a gift. This did not come easy for Ashley but with Bernie's skills and advocating that Ashley received the adequate number if visits to make it happen, Ashley has now received a new level of freedom. You can't image how shocked and saddened I was to learn that Bernie's contract was recently cancelled by 1 to 1 Rehab. We need more physiotherapist like Bernie in the public sector.  

At present CCAC's and Children's Treatment Centre’s in Ontario  look more  at the number of visits and block the child for treatment, rather then focusing on the child's ability to progress and to attain outcomes goals.  There is just not enough funding for physiotherapy to provide the level of therapy to make a difference for the growing number of special needs kids in Ontario. We are lucky in that we can afford to supplement the government therapy with private therapy.  That was also needed to get Ashley where she is today.  Not all families are able to supplement the government therapy with private physiotherapy. 


I wish I knew how to let the provincial government know many more kids need more therapy and that it really pays off in the long run.   Many more skilled physiotherapist need to be hired to meet their  needs.  Kids who can walk and who are not confined to wheelchairs will function better and be happier adults.   They will require less expensive health care and equipment if they can move about independently.

Dalton McGuinty, I know you want to build a brighter future for Ontario.  Please don't forget about my girl.  If it were not for Bernie, Ashley would not be where she is today.  Bernie is someone that you want on your therapy team.   There are many more kids in York region that would have benefitted from her service.  Not all  parents can afford private therapy.   Physiotherapy should not be a luxury for kids who cannot walk, hold up your head, feed yourself or speak. 

Kids here need more therapy and this isn't just a physiotherapy problem, it can be said for occupational and speech unfortunately.   Ashley is enjoying and benefiting greatly from her current block of PT at CTN and but it is only an 8 week block.   Ashley will have to sit out at least 8 weeks before starting again.  Ashley will spend more time out of therapy then in therapy in the next year.   Image if she regresses and doesn't have that opportunity to learn how to walk independently.   Ontario has amazing therapists who are forced  to work privately and many families can't afford this cost.  Please don't let these children down. It's an uphill battle just to be a kid.




You can see what Ashley can learn to do when receiving on-going therapy in her progress videos herehere and here.

Saturday, 24 October 2009

Saturday morning therapy






Ashley's  brothers thought it would be fun to play Kerpluck with her this morning.
Brother therapy the best kind.  Look at the skills she worked on..

  1. Sitting cross legged
  2. Hand over hand help from mom to insert the sticks for game set up. 
  3. pulling out the sticks by herself
  4. turn taking which James patiently and loving explained to Ashley a few times.
  5. Ashley was declared the winner by the boys.
Fun had by all !!!  Mommy loved it too.