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. 

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. 

Daddy was Mommy for the day! - OACRS

Today I went to the OACRS annual conference  (Ontario Association of Children's Rehabilitations Services).  This meant Daddy was in charge packing lunches, getting the kids dressed and out the door.   Ashley arrived at school on time for a nice change I'm usually running late and he literally played with Taylor all day.  He even packed all four kids in the car and headed to hippo therapy after school.  I'm pretty sure he was glad to see me home when they arrived back just in time for  baths and bedtime.

I on the other hand got to drink coffee and chat with adults uninterrupted, even go the bathroom without a one year old in tow.  What a change of pace for me.

Best part of the day was listening to Spencer West from metowe  speak  he knows how to overcome obstacles having lost both his legs at the age of five, stay positive and give back to the world.   He is building schools in Kenya and India with youth and spreading a message about being the change you want to be in the world.   He inspired everyone in that room to want to reach out and help others and appreciate all that we have.  He was also very open about his difficulties in childhood spoke to the therapist and parents in the room about what it's like to grow up with these challenges and all that therapy from a child's point of view.  He was just fabulous,  so I just  had to blog about him ...



I also learned about Advocating at school and of a number of other great programs being run in other treatment centres across Ontario.  It pays to know what's  out there then you can be really demanding of the best possible programing and treatment services for my girl.   Best of all I'm going back tomorrow to Day 2 of OACRS and the Keynote Speaker is  Dr Charles Pascal.

Spencer West was encouraging and inspiring but here's my number one  inspiration my girl! I'm working on a new video of her latest tricks such as hippo therapy and swimming.  If you haven't  seen my last video of her last spring check it out but stay tuned for her latest fall tricks coming very soon.

Ribbon Cutting, Friends and a good time.

Today Ashley and I, along with some good friends were invited to cut the ribbon at the opening ceremony of a Children's Treatment Network Parent Information Fair.  It was an honor to be up on the stage with two very amazing mom's Heather and Lisa.

Lisa worked really hard to make this event happen her sweet little girl Emily  walks now because of CME physiotherapy and her Mom's determination to stop at nothing to enable her daughter.   Lisa is a true warrior mama, she fantastic and knows how to make  things happen.     Lisa made it her mission to ensure other parents in our area are aware that this amazing therapy exists.   Today's information fair happened because of  her.  Lisa you go girl!

Heather is a friend, neighbour and best of all blogging buddy.  Her son Zackie is doing amazing things he also has a  dream team that Heather put together.   Today he was walking  around the room with just a little help and eating food which is no small thing for this little boy.  Be sure to visit  Heather's blog,  she is so honest about their struggles and triumphs, you will be hooked in no time.  She's also new to blogging  so I'm sure she would love a few new followers especially other mom's that rock you know who you are.

Lisa, Me & Ashley, Heather and Zackie

Here we are just before the ribbon cutting,

Oh and if any of you Moms out there have worries about whether your child will walk or sit up.  This princess Vanessa was unable to sit up at 3 and look at her now. It's incredible the gains she has made in  the last year. She's amazing at one hand walking.  She also does CME physiotherapy.    She is  eating now too and wasn't doing that last year.  There is nothing stopping this girl either. She is also Ashley's pal and pretty darn cute. 

It was great to see everything that is available locally for Ashley, camps, riding, swimming, respite, gym programs, funding there was so many organizations present.  I have a big bag of brochures now to read through.

 The best thing I learned today was Ashley can play special needs soccer at a funded summer camp. It's a morning program from 9 until 12 there are aids for all the kids.  Mommy has to stay and watch but Taylor can come along there are balls and  other siblings that he can play with there. I'm so excited about this.

More Mom's that rock and good friends. 

Thanks to Children's Treatment Network for the great event.