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. 

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.

A busy thursday for Ashley

Look what my girl did in kindergarten she tenderly planted and carefully watered this seed and  she grew...

Remember a few weeks ago on earth day  it looked like this.

Ashley was busy today with Augmentative Speech followed by physiotherapy.  She did great at both in speech she read a Mayer Johnson interactive books with picture cards built in.  During the story her therapist asked her to find specific picture cards out of a choice of four and she was able to locate the crayons, toys and clothing on request. She didn't find the toothbrush. Maybe I should let her brush her own teeth more I'm usually in there doing it for her.  Overall she did great.

 I love when she can show us what she knows it's so fun.  I kept her busy she had to eat snack while doing this because we were off to physiotherapy  over the lunch hour and she can't go that long without eating.  She didn't get a break today and fell asleep in her lunch at 1:30.  Can you say over-scheduled for 5 years old.  That's how life with special needs goes.

I forget to bring my camera to phsysiotherapy as we were rushing so I have no photos of that it's too bad to because she was shinning.

Here's a look at her brothers baby curls. They are so cute and of  all 4 kids he is the only one with my curly hair so I just love it.  He also enjoys Augmentative Speech and want to get his hands on the fun books.

I had to share this as well,  look what  James created this week for a 4th grade Food Chain project. I think he did pretty good with it.

Single Plan of Care

I'm so excited I made a fabulous montage of Ashley doing all kinds of gross motor skills for her upcoming Single Plan of Care (SPOC) meeting. I'd love to share it right now but I think I want to  hold off so everyone can watch it at an upcoming team  meeting  May 12th.  It's really sweet.

This will be Ashley's second SPOC meeting at the school, many people attend as she has a PT, OT, CDA (Communication disorders assistant)  and speech therapist (SLP) for home and another team at school.  Her school principal, teacher, education assistant, special education teacher, case manager, early interventionist and a team co-ordinator also attend that is 15 people.  They  all help Ashley reach her full potential it's her DREAM TEAM. She even has a few other members of the team that won't be at the meeting, home nurse, school nurse and  a private PT.  She has 3 PT's on her team and they are all so skilled!  Many members of Ashley's team have come to be dear friends, who understand the ups and downs of this amazing journey we are on.  I feel so blessed to call them friends.

 My video includes a small tribute to her team it is impossible to thank them enough for loving Ashley and helping her excel but I can at least say thanks.

Ashley's success with PICs in JK

At school this morning Ashley was able to correctly identify  farm animals using her eyes to look at the correct picture card when presented with four different choice.  She did this successfully each time she was asked.  This was an exercise done to show her teacher how they can use the picture cards to teach her colours, shapes or other themes being taught in JK.

She was also able to make choices between activities with picture communication and use her "yes" or "no" cards to tell her teacher when she wanted to stop or continue.    Her preschool speech and language  CDA who has been working with Ashley for close to 2 years was visiting and was thrilled and so were her teachers.

 Ashley you continue to impress us all!

Next steps with PCS

Augmentative Communication in action at our house.

Today Laurissa came over to see Ashley she is from the Children's Treatment Network which is the rehabilitation network the government provides to help Ashley. Laurissa is a CDA(Communicative Disorders Assistant) and she is really great at what she does she set me up with all the PCS (picture communication system) we are using to allow Ashley to do choice making. She also spent time earlier this year showing me how to show Ashley how to form the P, B and M sounds and where i can put my fingers around her lips to help guide those sounds.

Today she brought a Mr Potato Head with all the parts and a duotag with pages of PECS of body parts, and another page with PECS of actions that can be completed with those body parts, like peekaboo for eyes, kiss for the mouth, jumping for the feet. We showed Ashley the PCS for the eyes then offered a choice of two body parts one in each hand and said Ashley pick up the eyes. She was successful 4 out of 5 times to select the body part requested. We placed the eyes on Mr Potato Head and showed her the PCS for Peekaboo and proceeded to have Mr Potato head play peekaboo with Ashley. Ashley enjoyed every minute of it and this activity helped Ashley to label PCS with body different body parts and learn PECS of various actions. If Ashley is going to learn to use a communication device she will need to learn lots of PCS and this was a very fun way that was enjoyable for her.


She also brought a balloon and a pump to blow up balloons and a sheet with all kinds of PCS for this activity. Ashley was all giggles when we let the balloon loose and it deflated while flying across the room. We showed her PCS for fun, more, blowing up balloon. She loved this too. Larissa talked to me about doing more role playing with Ashley such as with baby dolls feeding, sleeping, brushing her dolls teeth. Ashley needs more toys that are more typical of three year olds for pretend play. I think Santa will have a long list this year.






I only wish Laurissa could come more often she can only visit Ashley every 6 weeks are next appointment is late October.

CN Tower

Life has been too busy to even blog lately. I've been enjoying a fun weekend with cousins again. We headed down to the CN Tower friday and here's some images from below and way up high.


Ashley is checking out the view from a port hole window in the skypod.

Ashley, Cassandra and Cecila waiting in line to head up to the skypod. The lines up were a bit much since the weather this summer has been very wet so everyone at the same idea as us indoor activities.
The glass floor. I stepped out for a very quick picture..
Paul, Cecila, Cassandra were very brave and hung out for a while.

One of the best part of the weekend was when i asked Ashley "Can you say Cassandra? and she said.. ananda (twice !!) it was so close. Four year old Cassandra was impressed and that made my weekend. i love those surprises

Can it get any busier

June is coming to a close and this month must have been one of the busiest I can remember for appointments, therapy sessions, and events. I felt overwhelmed a number of times I have to admit. It went something like this. A whopping 26 appointments this month alone

• 10 for physiotherapy (CME therapy)
• 4 for Augmentative communication,
• 4 for play therapy
• 2 for occupational therapy
• 2 dietitian and feeding therapist
• 1 Early intervention & 2 with potential new nursery school
• 1 SPOC (Single plan of care meeting) basically a team meeting with all therapists, case manager and service co-ordinator.
• 2 medical appointments

Not to mention we also attended a graduation, wedding, parent conference and parent advisory council for the Children Treatment Network. We reduced Ashley's (tube feed) calories and convinced her to do some eating and drinking. Ashley also progressed with her toilet training routine and manages most #2 and a few #1 on the potty! And I never forgot about the boys.

Ashley was a real sport to get through all this. Next month I'm setting more time aside to breathe before potentially starting back to work again in August.

Super Mom

Speech

I'm more then a little frustrated with speech therapy lately.

I been basically told that I'd be wasting my time and money getting private speech therapy for Ashley. Her CDA and SLP both prefer to wait and see but I badly feel the speech areas of her brain needs to be stimulated. Sooner the better i would think. I'm not an expert at any of this but i know she can learn and I have tons of faith in her.

She stares at your month when your talking to her and while working on sounds she moves her lips to the correct positions very nicely and this week was able to make the "mmm" sound we were working on it. Her CDA therapist was pleased and noted it down but still maintained her coming once monthly would be plenty of therapy for Ashley.

If we waited for her to step before i got her the treadmill we could still be waiting. I just want to learn what speech therapist do so I can have a successful home routine and I'm not ready to give up or wait around forever either. It also sucks that you age out of the government speech program at 4 1/2 years too and many kids age out before they are ready for blocks of speech. Just letting off steam I guess.. as i've already written to my MPP and still need to get this off my chest some more. I guess if Ashley is working so hard at learning to talk and walk I can learn how to really complain and be heard. That I'll be working on. As well as hiring the best SLP i can find.