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?  


BLOOM - Parenting Kids With Disabilities said...

Hi Shelley -- When you mean no toileting was taking place -- were they changing diapers? I'm not totally clear on what was happening.

We had a bad experience when Ben was in JK at age 4 in a school for kids with physical disabilities and they refused to follow a 2-hour toileting schedule for Ben because they said they didn't have the resources. They had 2 scheduled toilet breaks everyday (these were full days), and for kids like Ben who were learning to toilet, they preferred to keep them in diapers. It was incredibly frustrating.

Good for you for being so involved and figuring things out! I think it is so important to make unannounced visits when your child is non-verbal -- otherwise, you may be missing something.

Keep us posted on how things are going now!

BLOOM - Parenting Kids With Disabilities said...

Oops -- I mean Sherry! Sorry about that!

Anonymous said...


This. does also happen to kids that are verbal. In grade one my son used to wet himself because he had a hard time pulling up his pants. I had to explain this to his teachers but the understanding was not there. My son rectified this by stop drinking at school. Lots of kids with physical disabilities have a hard time toleting . This can be due water on the floor, maneuvering in the bathroom or not having access to a assesable. bath room. I think everybody takes those little degnaties for granted. I was great that you spoke up because you may have just educated some one on many issues that can be corrected real easy. This may make it easier for the next person coming along.

Sherry C said...

Thanks for your comments everyone. Louise I should have been more clear they were diapering her. This could just be a communication break down I really hope that's all it was but with current out work to rule climate I'm very concerned. It also took too long to fix once it was recognzed as a problem. As not everything is listed in her IEP althought we are adding Toileting now. I am wondering if I need to worry about other indepentant skills she is working on that are not listed in the IEP. I wanted to raise awareness and let other parents now they should never foget to ask about everything.

Anonymous said...
This comment has been removed by a blog administrator.
Monica said...

You've been hit by the dreaded orchid spammer!

Great, thoughtful post Sherry. I think the conclusion you've drawn about the importance of taking extra time at the start of every school year to walk through all aspects of the child's day, especially if there is a new EA, makes a lot of sense. Can let you show everyone where she may have made progress over the summer and what's still the same, and make your expectations about how and when things should happen more clear than trying to play catch-up later.

Also, I reallly like the photos of your cottage and how intently Ashley is watching Damon's screen in one of the sofa pics.

Oatie - IWillSkate on Ice said...

Thanks Sherry

That's so true. It's a constant battle at Oatie's school too. They don't understand why they need to remind him. In the end I told Oatie to walk out the class room. They shouldn't stop a child from going to the toilet.