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. 

Hanging out - video

and check this out Ashley also loves walking around with her iPad in her princess basket preferably while  Justin is singing  Never Say Never.

Why the iPad and Proloquo2go is a definite win win

Yesterday Ashley was not her usual self at breakfast not really finishing her toast, which she asked for using prologo2go or interested in other yummy options like berries or yogurt being offered. Since she was so unhappy eating I placed her on the floor with her toys and her iPad.  She got right to work telling mommy and her  brother, what was up she quickly went to the something is wrong, then something hurts message.  Then repeated pressing it until Mommy came right back over and her older observant brother Damon was telling Mom Ashley hurts hurry up.  Both Damon and I didn’t notice right away but we looked her over and her ankle was swollen.  Also present tiny scratch marks and little bug bite.  She had been bitten by a bug and bug bites and her don’t mesh well she was upset and crying.   I don’t know how I missed it when I dressed her just before breakfast either if it was there at the time. But I was very thankful she was able to tell me so effectively this would not have been possible without the ipad and this amazing app!   I would likely have thought she didn’t sleep well she’s constipated who knows what when your child is non verbal sometimes even Moms don’t have the answers which is painful for all involved and very frustrating for my girl at times.   As I see Ashley getting better and better with this new tool. I’m very thankful she has a way to express herself it is such a gift.

She was even trying to bum scoot with her foot in the air to avoid using it. Luckily after some Benadryl and a number of hours her ankle was back to normal. But I was very pleased with my girl, her ipad and amazing app proloquo2go for letting this mom know what was going on.     

At a  quick glance it's hard to notice a bug bite if your child isn't pointing it out you.   You can't see it too much in the pictures I took but she was holding it up in the air while bum scooting yesterday.   I'm pretty proud of her for communicating this to her brother and I so effectively. 

Mission iPossible - is raising funds to put iPads in some other very deserving kids hands so they can communicate just this type of thing or just the fact that despite being non verbal they sure do know their stuff.  So hope on over and read all about their mission too. 

Still feeling bad about the whole ipad thing but I took my warning post down as felt I was very hard on him and that's really not my style honest.   If your interested in this drama  please read about this on these two blogs they have much more grace and writing talent.  

Ken - Blogzilly - mission iPossible

&

Ellen's  LoveThatMax

Spent the day watching  my boys fish this weekend.  We stopped at Canadian Tire and picked up two new rods - turns out Taylor really needs a fishing rod too so I'll have to see if I can find a toy/rod for him no hook for sure.   Ashley prefers to sit lake side  and read or play barbie with mom.

This is what Taylor and Damon did for an hour while Ashley was inside doing physiotherapy.  It was fun for all as Ashley enjoys PT and the boys had a great time on this trampoline the hour which went  by in a flash.  We survived the first week of summer break nicely.

These two are too cute for words.

Can't wait to see what fun we have this week .. Ashley is attending Special Needs Soccer Camp.

Kindness of strangers - Helping my girl

Ashley's Voice is getting a big upgrade!    

I’m not even sure where to begin with this post as my girl has been blessed by so many totally strangers this past month who have heard her story and wanted to help.   On Mothers’s Day we learned Ashley won her very own iPad2  + Apps in a merit based giveaway from MarissasBunny.com  Infantile Spasms Awareness blog.   Mike Marissa’s Dad and his employer not only gifted my special girl with a iPad2 but another 40 families with iPads and they have set up a foundation to carry on doing the same thing for  many other families to help make  kids lives with disabilities  better.

Good news keeps coming…

Late last week I found out I won a Facebook Contest I entered from FortZed Challenge for a $50 Otterbox gift certificate.  Ashley is my lucky charm I think but I was shocked that I’d win her an iPad2 then 50 towards a fantastic cover!

Otterbox iPad2 Defender case 

This story gets even better, Ariana from FortZed challenge loved Ashley’s story and shared it with Otterbox.  Kristen from Otterbox PR contacted me and said she too was amazing by Ashley and wanted to send us their super tough iPad Defender Case free of charge and suggested we use the gift certificate to order the Otterbox Utility Latch.  WOW!  I’m totally blown away at all this kindness and generosity of so many others that are totally strangers and want to see my girl have a voice.  This iPad will be be Ashley voice and travel everywhere with her she didn’t qualify for funding for dynamic speech equipment in Canada as she would first have to prove she could use it. Which she definitely can but needs lots of hands on practice to learn to move from screen to screen and locate her choices. She need to show them she can do that before the gov't would fund one.  They were not going to give her a chance not yet anyways.


Here's a peak at Otterbox's  Utility Series Latch it allows you attach iPad to many things.. I'm sure we will put this to very good use.      

We did set aside some funds to purchase an ipad just  a week before we found out we won one from Marissa bunny so Ashley been practicing and doing really well with choice making.  However with 3 brothers there is a lot of demand for the iPad and it’s getting used by her two year old brother the most.  When Marissa Bunny iPad arrives (there has  been paperwork delays due to Apple concerns with giveaways but it’s on it’s way this week)  It will be dedicated to Ashley and at her side at all times.  Her brothers will have the other one to play with.

I just had to share all this as I feel totally thrilled that my girl is benefiting from all this generosity.  Raising 4 kids and having therapy bills  is not cheap so all this is greatly appreciated.

Don’t miss Ashley's graduation video I posted this week too.   I’m so proud of this girl we purchased her walker for her just before she started JK and I remember standing outside with her at the walker  on the first day of Junior Kindergarten we needed to assist her to balance and move the walker in the door that first day. Someone had to hang on to her and the walker.    I’m sure a few would have thought she's  not ready for that.  However with daily practice she learned to use the walker totally independently last January and just the other day she  led her class in to the gym for graduation. It was so incredible.  I know with her new iPad she needs hand over hand direction right now to navigate the speech device but with time and daily practice I’m sure she will get it.  She can independently make her own choices on pages but can’t quite navigate page to page due to the fast speed.  I’m so confident in her and super excited and pleased so many strangers are so happy to help her gain her voice. My husband and I are so humbled by all this generosity.  

Be sure to check out Otterbox's amazing cases, like and share FortZed Challenge facebook page  and  read all about Marissa at MarissasBunny.com .  Just today Marissa's Bunny is launching there next iPad giveaway so if your child needs one be sure to jump over there and check it out.  If your so lucky you will be blown away by this families kindness and eagerness to help others despite all they are going through with there sweet little girl.

Ashley won an iPad and more!

A few months back I entered a giveaway for special needs kids to win an ipad based on merit.  I never thought she would win but we learned on Sunday Ashley is really blessed and is amoungst 40 kids that won a ipad and apps.  This amazing family blog at Marissa’s Bunny  about their beautiful daughter who happens to  have infantile spasms. They are raising awareness about this condition and have been raising funds.  Not only are they doing everything possible for their daughter they are reaching out to make the lives of other families with special needs kids improved. 

40 very lucky and deserving kids won ipads how cool is that.  Be sure to visit Marissa's bunny they are raffling off an ipad2. 

Mike and your bosses Ashley and I are so thankful. 

iPad and Proloquo2go!!

I'm so excited for my girl, she has this amazing alternative and augmentative communication team from CTN (York regions Children's Treatment Network).  The team consists of a Speech therapist, Occupational therapist and I believe two CDAs (Communication Disorders Assistant).  These wonderful ladies made Ashley's communication book, and set up her kindergarten classroom with picture symbols throughout so Ashley could have a voice and be as social as possible.  They guided her Teacher and her Educational Assistant  on how to best work with Ashley to get her communicating and how to teach Ashley's literacy at her level.  The also worked with the School's SERT (Special Ed Teacher)    to ensure Ashley workable literacy goals were measurable in her IEP (Individual Education Plan).   This team listens to me and Ashley, they are encouraging and they believe in my girl. They also never say we can't do that or Ashley's not ready for that either. They are always positive and excited about Ashley.   I love their attitude!!

I asked them what they thought about upgrading Ashley's Voice ( Communication Binder) to a dynamic device.   I also sent in a few  links of other very young  amazing kids using the iPad for their voice.   And here's the good news.  They agreed to convert Ashley Communication Book to the iPad and Proloquo2go!!   I'm not sure how we got so lucky but I'm thrilled.  And it's going to be the first iPad communication device this team has set up!!!

Only glitch is I have to provide the iPad and the app the government would not fund a dynamic device for Ashley unless she can jump through hoops and dance around in circles. (Okay really there is super long list of things she needs to communicate to them she understands which is challenging without a voice so they might as well ask her to jump through hoops)

I'm guessing that is because traditionally these devices  go for big bucks like 10K or so for a Dynavox.  The government and insurance companies here don't want to spend that kind of money on kids unless they can already show they are competent with these devices.  Problem for Ashley is she will learn to use a dyanmic device but only if  it's provided to her as she needs to be taught but it will take some time.   Silly government and Insurance companies don't want to give kids like Ashley a fighting chance!!!  That needs to change but thank god for Apple and Proloquo2go for making dynamic speech output devices more affordable and accessible.  At least now many more Parents can fund their own kids devices and apps.

In the meantime I found this amazing family hosting a iPad giveaway this month. MarissasBunny visit their blog and read Marissa's story.  Such an amazing family.    They have a beautiful daughter who's 3 and has many challenges so they clearly understand and want to giveback and help others.  They are giving away 5 iPads and hope to raise funds to giveaway another 15 to special needs kids that could benefit from an iPad  - kids just like Ashley.

How about the new iPad2 released today?  I watched the promo video the cover doubles as a stand for better typing or in Ashley case ease of use.   I'm sold already.