Planning for grade 3 - IPRC

Yesterday I attended an IPRC meeting for my daughter it was an opportunity for me to discuss my daughters needs & strengths. It is also an opportunity for me to make sure everything is in place for the following school year.  I felt like a broken record reviewing my daughters needs again and again as we had many school meetings over the last few months  due to a few challanges we faced this year.  

Next year I've reluctantly agreed to my daughter attending a special education classroom at her home school for children with developmental delay.  I truly hope this is going to be an ideal situtaion for her.  She will have a teacher that is dedicated to working with kids with signifigant chanellges.  I  hope this teacher and support staff will see my daughter like any other child as a communicator and a learner and set high expectations for her.  I know she needs the extra support this classroom can offer her but  I don't want her to be treated like a baby. She's 8 and needs to be enouraged to be as indepentant as possible.

I found it troubling reading through some of the Ministry of Education Categories and Definitions.  My daughters IPRC states that my daughter has a developmental disability  which is defined as "a severe learning disorder".   Yes I see that and I get that but it is hard to swallow and accept. I see how far she has come and I have so much hope that she will learn to read and communicate effectively in the future.  

The definition goes on to state:
a) an inability to profit from a special education program for students with mild intellectual disbabilites because of slow intellectual development.
b)an ability to profit from a special education program that is designed to accomadate slow intellectual develeopment;
This is the part that really bothers me is this really NESSCESSAY?
c) a limited potential for academic learning, independent social adjustment and economic self-support. 

OUCH I find that last part very hard to read, accept and feel that last statement is just so negative it hurts this Mom to the core.   I worry it sends such a negative message to parents, teachers and support staff about my daughter and all  kids in this category that they can't learn, socialize or be indepentant.  I feel these statements leaves little room for optimism about my daughter's future. I am always overly optimistic, my glass is always half full, the sun will always come out tomorrow. For my daughter I always knew she would be a walker, and I love that she is a gymnast and a soccer player. I just knew she won't need to carry that oxygen tank into the classroom with her.  I was ever hopeful she would learn to eat one day.  All these things she accomplished they were big deals.  She can crawl, sit on a typical chair to enjoy a meal or a show. Feed herself a meal using her utensils.  I continue to hope that one day she will be a better communicator and a reader.  I'm certain her future will be meanful and serve a purpose yes she will likely need support in whatever she does but it still be purposeful and meaningful. Not only to Ashley but too many people that she will meet.

I was told that kids with severe learning disabilities can learn to read they just have to work at it a lot more then typical learners.  Which means picking up and reading a lot more books.  Ashley and I read many leveled readers each day she enjoys this time with me and loves books. I can not tell you if one day she will be a reader. But I can tell you that I will only fail her if I don't try to teach her.  

 

Just believe in my girl and all that she can do.

 

So I'm  just going to continue to think positively about the upcomming school year.  I would love the ministry to consider the messages they are sending parents, teachers and our kids.

Ashley enjoying winter the Koolway!

It has been a long and snowy Canadian winter.   Ashley is always itching to get outside despite the weather.   She is glued to the backdoor if Daddy is outback cooking on the barbeque.  I hate to tell her it's too cold get out there.  Now Ashley is sporting this  Koolway Sports custom made snowsuit. 

Ashley's Koolsuit is purple and hot pink. Koolways snowuits are custom made in Canada and come in many colours.  The best thing is the warmth Ashley legs are now nice and warm while on the ice or being pulled in a sled.  For someone on a slegde or in a chair it is very easy to get cold since your not moving around. We used to put on snow pants and  blankets on her legs but the blanket would  fall off.    Her Koolway leg blanket zips to the Koolway Jacket, plus both the jacket and leg blanket was made  for extra warmth and stays put.    

Koolway generously custom made Ashley  this suit  in-cordination with  ThreeToBe.org  PAL site.   Ashley is one very lucky girl! 

I can now quickly get her dressed and we are off and enjoying this never ending winter.  She has been skating three times since getting her Koolwaysuit  just over two weeks ago.   She is living life the Koolway!  Ashley and I both say Thank you Koolway Sports!!


Also exciting news...

Ashley  is starring in a video called "The Climb" and two photos "Walking on Sunshine" and Let's Play at this years Filmpossible 2013 compeition. 
If you have time it just takes a second to vote.  Jump over to Filmpossible to view and vote on all the amzing entires that are bringing visibility to disability.   All entries are submitted by people who believe in a world of possibility.

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?  

Thanksgiving

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.

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.  

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!!!!

I wish...

Ashley's wish for Christmas.

Ashley gets to speak at last nights holiday concert priceless and an early Christmas present for me.




This Christmas I'm so thankful for Ashley's amazing grade one teachers.  They go above and beyond each day to ensure Ashley is thriving at school and always included.

Santa Clause Parade

We headed downtown to see the Toronto Santa Clause parade last weekend.  It was so much fun!!!  

Yummy Turtles! Can't wait to enjoy some of these over the holidays.

 Hasbro's Mr Monopoly and My Little Pony

Someone named Ashley was so excited when she saw this float coming!!

You can tell she's a Princess! 

She doesn't need a crown. 

She'll turn the world around. 

You can see it in her smile! 

 and the way she wears her hair.     

 The look on Ashley face when she saw the Barbie float above was priceless and worth the trek downtown and the long drive home.   She's hoping for a copy of Princess Charm school and Barbie Blair from Santa Clause!  Santa can you add that to your list please?  She's been a really good girl this year. 

 Kung Fu Panda was a hit! 

Super Mario came over and gave Taylor a high five!!  He enjoyed that as he is a lover of Wii

 Look how much he enjoyed Super Mario.

Everybody enjoyed the Lego float!

Kermit and the muppets too!

When you see Mrs Clause you now Santa is just around the corner!!!! 

 The man of the hour Santa himself!!! 

I feel like it's time to start decorating and shopping. Tell me have you started? 

Ashley 6 years old, a public speaker and self advocate!

The Quest 2011

It was such a privilege this week for Ashley and I to share her road to inclusion story,  at an international conference for educators called "The Quest" hosted by York Region Public School Board.

I was emotional delivering this speech as this was truly a tribute to Ashley's entire team of teachers, aids, and therapists and only with them working together and believing  in my little girl is this such a success story.  There was a 1000+ educators in the room they gave us quite the audience. Public speaking was new to both Ashley and I but we were both very passionate about our message. 

Ashley's road to inclusion.  A road I hope many other kids will travel.

Myself and Ashley getting ready to speak!!  We were all so excited!

My words;
My daughter you're so amazing.
You were born into a storm. Coming into this world, so tiny, and yet instantly fighting for your life.

I hope this world can see how wonderful you are.

Your life started in the Neonatal Intensive Care Unit for months followed by daily therapy to learn to do what comes so easy to most, walking, communicating, eating and even holding a toy. 

Instead of playmates you had dedicated nurses and therapists.  Instead of walks in the park and rides in a stroller you went to therapy, doctor visits and experienced long hospital stays

Ashley speaks - 

 I just want to run and play. 

 I have something to say. 

Then I continue to share...

When Ashley entered Mrs. Gambino’s kindergarten class, she had her challenges but was welcomed by her teacher just the same as her classmates.

September Junior Kindergarten

Ashley’s speech therapist Mrs. Visconti brought her augmentative communication devices. She gave Ashley a voice for the first time!

And if that wasn't great enough that she now has a voice! 

Mrs. Visconti also worked with 

Ashley's teachers on appropriate IEP goals that were measurable and attainable.   She helped Ashley's teachers find the appropriate curriculum even beyond communication but for language and math. 

So Ashley has a fabulous IEP!   Ashley's teachers and Aids were excited with this guidance and modified teaching methods they followed thru and worked hard with Ashley each day. Ashley was able to make progress with all this support and has had her IEP expanded. This team work is the KEY to successful inclusion. 

Dream team meeting!!!

Her   classmates connected when Ashley was able to comment and ask them questions.

Ashley was embraced by neighbourhood friends and blossomed through the encouragement of her teachers and classmates. 

Seeing Ashley doing so well in kindergarten, her father and I decided NO special classes, NO limits, No labels!   She like her brothers has so much potential and the sky is the limit.

We feel it’s important that she learn how to interact with the real world and not be sheltered.   Most importantly we want her to believe in herself, and all of her abilities!

Ashley needs to be surrounded by able-bodied peers and this is hard to provide in a separated special education classroom. We feel she will do best if she exposed to typical classroom environment where her peers can be her friends and role models.

Ashley - At school they gave me a voice. My name 

is Ashley.  Will you be my friend?

 Inclusion in education for Ashley is the beginning of inclusion for the rest of her life. Just as we all want to belong, Ashley wants to belong and Ashley wants to be included. 

I don’t want the school to focus on guarding and protecting her. I want the school to focus on giving her lots of chances and choices.

They have assisted her to walk daily and in response, she led her entire class into kindergarten graduation with her walker.

She was given a simple step-by-step communication device and is now learning to use an iPad with even more options to communicate.

Ashley has been given the opportunity to stay for grade one, and we are so appreciative of the incredible support she has received in Ms. Bloom’s class.

We hope to see Ashley’s at this year’s primary skate days and were excited when Janice Lee the school’s physiotherapist suggested of course Ashley could skate with a sledge.

Who would have thought when Ashley was born that she would be up here giving a speech to all of you.  Ashley loves music and I’m sure would be thrilled to have the opportunity to participate in primary choir. I don’t see anything as impossible for my little girl as long teachers and support staff, are open minded and welcoming Ashley can do anything!

I’m confident Ashley will be successful at her home school for all of her elementary years.

I look forward to seeing how OUR family, OUR resource teams and OUR school will continue to collaborate.

With careful planning and resource management Ashley will benefit with greater access to the full curriculum throughout elementary school and even high school.

How will YOU help me to make this happen?

Ashley's closing words; 

I love being in Ms. Bloom’s class.

I love books. I really want to learn to read. 

I enjoy going to birthday parties and playing with my friends in the yard at recess.    I just want to be a kid.

And will you be my friend?   Please

We received a standing ovation from all the educators in the room. !!!

My public speaker  just 6 years and advocating for herself and others in her position look what she can do!

I'm so thankful for this opportunity.  I hope we inspired at least one parent or teacher in the room to see a child with a number of needs as an active learner and raise their expectations for all children to the sky!  

Special thank you to Erin S. one of Ashley's friends and a neighbour who recorded Ashley's thoughts for this presentation on Ashley's step by step.  It was very sweetly done.    By the way Ashley's story was just one of 5 stories shared in this dramatic presentation.  I will do my best to find out when this will air on ROGERS TV channel 63 if anyone is interested in watching this. 

With walking comes other privileges

Like Trick or Treating!!

Ashley loved walking down the street bumping into friends from class,  she was very happy to be out and about collecting candy too. 

Here's Ashley with her brothers all very excited to get going this evening.  

By the way we have way too much candy here right now. 

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 here, here and here.

A treadmill work out

September passed by in a total blur for me even though three kids where in school full time there was no time to blog.  My  days are filled with phone calls and meetings.   There seems to be something on my calendar each evening too. Ashley's doing fabulously with the new schedule and managed very nicely to give up her naps she is actually sleeping 12 hours each night which leaves her very happy and  giggling each day.  Dropping the nap seems to work really nicely.

Last week  Ashley had back to back OT and PT at CTN.  It was honestly much more then I expected and Ashley loved it.  She was on the treadmill for 15 minutes straight and they kept speeding it up from 0.4 miles an hour to 0.8 miles an hour at the end her feet were moving at a nice pace and she was smiling the entire time.   I take her on a treadmill at home but I never challenged her to move her feet that fast and she would have short breaks at home as my arms would get tired just supporting her.   Mommy needs to get in shape.    I was surprised to see how easily she handled the faster speeds and her heart rate was good the entire time.  

She also crawled up a hill, worked on balance on the trampoline, crawled across a very big bean bag walked along the parallel bars and laterally along the edge of a table. Perhaps a few other things I'm forgetting too.   It was  a great workout  and all this following a session of OT, plus a morning at school too. 

OT was very busy too with targeted drawing, throwing, stacking and locating beads in putty.    I have a feeling  her new OT had more tricks up her sleeve if there was more time as there was a few washroom breaks but it was really great. Ashley has not had  OT since preschool.  I feel this session was long overdue and with guidance and practise I'm sure Ashley's  fine motor skills will improve.  

Ashley is already looking forward to returning CTN this week. 

School here we come!

My first grader

Grade 6 and Grade 4 for these two.

We live close and thought we would walk - Ashley giggled. 

Both Ashley and I enjoyed having Grammy and Grampy here for the first day. 

She continued with that giggle in class too.

I hope the rest of the year will go as smoothly as the first day.