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?  

Wednesday, 10 October 2012


Our thanksgiving 2012

Ashley is really into eating lately!

My Mom and Dad made dinner it was yummy.

 We even closed the cottage up for the year this past weekend. This summer we painted almost everything all the wood panelling, windows and trim indoors and out. We even had the cottage leveled and put on a new roof.  It was a lot of work but we had fun fixing it up and are looking forward to laying down a new floor in the spring.

Tuesday, 3 April 2012

Look who is 7! - Party Video

March flew by and birthday season is in full swing at our house.  Ashley turned 7 last week and I'm amazed at all the progress she has made she's really moving about. She is crawling just a little,  she enjoys balancing on high knees and trying to stand up it's fabulous progress. She's also using her spoon to feed herself a few bites.  She really enjoys her days in grade one too.  I will follow up with a blog post on all her progress later this week.   This weekend we threw Ashley a rainbow gymnastics party at Gymalaya. What a fabulous place to have a party.  She enjoyed her birthday there last year too and perhaps we will do it again next year.  A big thank you to all of Ashley friends and family that came to make this day so special. 

Ashley's smile the entire day!

 Fun Brothers taking after Grampy.

 Rainbow treats - home made by Mom!

Now I have to plan something just as fun for Damon who will be double digits  next week closely followed by Taylor 3rd birthday in 2 weeks. 

Here's a link to last years 6th birthday video also celebrated at Gymalaya.   I did a better job with the video last year. I need to another photographer besides myself at the party.  

Friday, 17 February 2012

Ice Skating - So nice to be included!!

This morning I accompanied Ashley on a winter outing with her grade one class she went Ice Skating.  It felt wonderful to be there with her on the ice.   I  recall  when she was just two sending her older brother off to skate with his grade one class feeling sad that Ashley may have to miss out on such  fun.

Five years later and my outlook is so different.   I really see many doors opening for Ashley as long as we plan there is always a way to participate.  Ashley's wonderful grade one teacher and school therapist arranged for a sledge and  Ashley was on the ice and enjoyed herself so much.  Her friends were happy to see her there and a few asked  why she wasn't on skates.    That would be something I'd love to see one day too and I think is possible perhaps a seated walker and some skates.   I love how the other kids see her doing it all.   Go Ashley Go!!!!