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?