Toys that have the touch

I am always on the hunt for toys that will work for Sophie.  Sophie's cerebral palsy makes it difficult for her to press little buttons but it is very hard to find toys that don't need that capability.  To find a toy with music and lights that is easily activated is a celebration in this house.

This past Christmas I came across a Leap Frog Touch Magic toy and I couldn't wait for Sophie to try it out. It just requires a very light swipe, very similar to the Ipad, to activate the music or instruments on the touch pad.  It doesn't captivate Sophie but it is definitely something she can do on her own which is fantastic.  I know that there are other versions as well, like the Learning Bus and Counting Train which I hope to find at some point for her. We have the Ocean Music School version and luckily it is a very reasonably priced toy, I paid about $15 on sale.

Sophie does very well swiping the different areas but I wish that the toy didn't turn off so fast with inactivity.  Sometimes it takes a while for Sophie to get into it and it has already turned off.  Kind of frustrating.  Other than that I love it and it is so nice to have something fun and musical that is new for her to work on her fine and gross motor skills with.

More recently I came across a toy on clearance that I had been searching for at Christmas and couldn't find anywhere.  So bonus that I found it super cheap ($7) and it has been another one that is great for her fine motor skills.

 This toy is a My First Crayola Touch Lights, it has a mess free gel pad with all different glow light colours as well as many different musical songs.  It is a really neat sensory experience for Sophie, the gel pad feels cool under her fingers and the lights and music keep her engaged.  Each time the button is pressed it changes song and colour, the button is large so I am hoping over time Sophie will learn to hit it.

I am always keeping my eyes peeled for new ideas and these ones were a hit!

New apps for fun cause and effect

Sophie has been doing a great job of using her eyes and her hands lately.  She is focusing very intently when given something new to play with and I am finding that she has been having good control with her hands when aiming for something to touch. 

 

I have recently downloaded some new apps for her because it had been ages since I had given her any new apps to play with!  She is really loving most of them.  Afew of them...

Peek A Boo Sesame Street
Finger Bells
Splish Splash Inn HD
Black & White High Contrast by Fischer Price
Sing with the Wiggles

Finding cause and effect apps that aren't too baby but keep her attention is still a struggle.  I love when she is able to work an app all on her own so that Sophie can have the satisfaction of doing it all by herself.

I am going to be on the hunt for some more apps that will work well for her, hopefully some fun Christmas apps too.  We have ordered an Ipad stand that fingers crossed will hold the Ipad up for her at the right angle too.  It will make it nicer for Sophie to use the Ipad in her wheelchair if I don't have to hold the Ipad all the time.  We have never had a stand so this will be all new territory.

Weekend fun: sensory squishy bag

A few weeks ago I made a squishy bag for Sophie to play with.  I found the original idea at Play At Home Mom here back in the summer and then adapted it slightly when I found the post by Adaptions4kidz here.  These two blogs are a couple of my favourites for finding inspiration for fun things to make for Sophie.

I loved the idea of putting the foam stickers on the outside of the bag so that Sophie would have something tactile to touch other than feeling the gel in the bag itself.  I had the ocean stickers already so it was a perfect theme.

Sorry the pics are sideways, blogger is being a pain

 I also made a Halloween version.  I had some foam pumpkins and spiders, I found a big googly eye and some pompoms, threw in some glitter and voila, a Halloween squishy bag.  We had played with both of these a number of times but it wasn't until I put them on the light table that Sophie really got interested in them.  It just made everything in the bags jump out and she was very curious about them.

Sophie was a bit of a monkey though at the end and thought it was hilarious to throw the bags off her tray and make me pick them up over and over.

Going,                                                                                              going,

wait for it......gone!                                                                               Now laugh at mommy!

I am so glad that she loved these on the light table, it was a reminder that I need to try more activities with it, I think it helps her CVI alot and helps her focus her attention so much better.

This weekend we also played with the light box with gel clings, used the ipad and did some of her switch work on the computer.

Her favourite app, Awesome Xylophone

She worked very hard with switch scanning and is getting close to mastering the proximity switch embedded in her tray.  Still some work to go with the head switch but that will come.  They aren't using the head switch at school just yet so she doesn't get as much practice with it.

Being a monkey again trying to get the wires :)

Sophie had been quite sick last week with pneumonia and a double ear infection so it is nice that she is happy again and having fun playing.  Hopefully we will be able to put the antibiotics and prednisone behind us for a good long while now that December and all that comes with it are not too far away.

Augmentative Communication - one step closer

Yesterday Lucas decided that it had been too long since his last sports injury.  We ended up spending the morning at Urgent Care getting x-rays of his finger.  He was playing football and jammed his finger off his buddies shoe while trying to take him down.  It is the same hand as last summer but the ring finger this time.  Turns out it isn't broken but he tore all the ligaments.  It is completely purple and all swollen, Lucas was pretty disappointed it isn't broken, but he seemed happy when they said the ligaments were all torn (it's all about the bragging rights).  So it is splinted and we have to do therapy on it each day starting in a few days..

Here he is pre injury for formal day at school.   :)  We had to get out his new board shoes and he wanted the bowtie.  He looked like a 90's grunge kid dressed up lol.

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We had a first meeting with Sophie and the Augmentative Communication Service OT at our house this week.  She brought out some head switches and an Ipad with a communication app on it called Sounding Board.  This app has the functionality of being switch adapted.  There are very few that are switch adaptable so it was exciting to see one in action.

We used Step Scanning which involves 2 switches, one for scanning and one for choosing.  Not easy.

 Getting the positioning right for the Ultimate Switch with gooseneck mounting.

We got it all set up and just let Sophie just jump right in. She was a star and made it look like she had been using a head switch all her life.

Focusing hard and figuring out the choices on the Ipad..

Making her choices cycle through by activating the head switch...

Woops, got herself in the eye with the switch the next time she tried. 

 Making her choice with our jellybean switch on her tray (the switch is hidden right in front of the ipad).  This is very complicated and Sophie got it very quickly.  She had to cycle through the choices with the head switch and then choose the one she wanted with the switch on her tray by using her hand.  That is ALOT of coordination for her to acheive in a short period of time.

We gave her two choices, two toys that she could play with.  She chose the same toy EVERY time, a new music box that she just received for her birthday.  It was awesome to watch her wait while they cycled through and then make her choice.  If she missed it she started the cycle through again with the head switch and prepared herself to get it in time with the switch on her tray.

Enjoying her choice, her music box :)

 Sophie worked with the switch for quite a long time and was successful in using both switches over and over again.  After trying the Ultimate Switch we tried a Papoo switch for a short time.  It made a noise and glowed red and it freaked Sophie out a bit. The noise was a bit disconcerting for her right by her ear.  But if the switch is embedded in her headrest it could be a good choice.  We think that 2 head switches will be the best way for Sophie to use any devices.  It is too much work for her to get her hands where they need to be to continually activate the switch on her tray.  She does much better with her head.  We will try lots of new switches and placements and find what works best for her.

Lots more to learn, lots to be excited about.  One step closer to knowing what my girl wants and needs at all times. Yay!!!!

My favourite things on the web-0-sphere right now for moms of kids with special needs (or any kids!)

I have been rather unfocused on my blog and website searches over the last few months and it has enabled me to happen upon some of the most excellent resources.  You know when you click on one blog link and then you see a blog that they follow that catches your eye, and so on. 
Most of these appeal to me as a mom of a child with special needs, but it need not be.  These are awesome for all kids!

These are not in any particular order........drumroll please...

1.  These two blogs are my new favourites for crafty/sensory play ideas.  They are so awesome that you just have to go to them instead of wasting time reading what I have to say about them.  Do it.  You know you wanna.

http://playathomemom3.blogspot.com/

http://www.modernparentsmessykids.com/


2.  This is an awesome resource of a plethora of kids books that deal with issues such as disability, worries, illness, all the way to losing a tooth, bedwetting or adoption.  It has it all and it is awesome.

http://www.littleparachutes.com/


3. Counting Coconuts.  I just love saying it lol.  This mom has the. best. sensory tubs. EVER.
Her whole blog is cool so you must check it out.  Here is the link specifically for all her sensory tubs.

http://countingcoconuts.blogspot.com/search/label/Sensory%20Tubs

4.  My go to blogs for special needs apps and education.  They are all fabulous.

http://teachinglearnerswithmultipleneeds.blogspot.com/

http://momswithapps.com/

http://www.snapps4kids.com/


5.  I read all three of this mom's blogs but this one has incredible ideas for adapting things for children with disabilities.
http://adaptions4kidz.blogspot.com/

Another brilliant blog that shows how to adapt items.

http://adaptingcreatively.blogspot.com/


6.  This is the best e-magazine out there that deals with issues of and about children with complex needs.  Actually, I have never found one as good in print either!  It is a must read.

http://www.complexchild.com/

7.  This is a Canada wide access guide.  It has extremely detailed information about what is accessible in destinations within the city of your choosing.

http://www.abilities.ca/agc/index.php

8.  A great blog that celebrates the ups and downs of raising a child with special needs.  Lots of great ideas and inspiration.

http://kidzorg.blogspot.com/

What is on your list??

Down, but not out.

Today I felt like I was going to implode.  It was like I was watching everything going on from some other space, it couldn't be real.

We had our appointment today and I left feeling devastated.  Driving while sobbing is not the best thing to do, take my word for it.

I feel that I have let Sophie down, that it shouldn't be this hard to let a girl speak what she is thinking.  That all the work we did over the last year has gone unrecognized.  The only saving grace is that she has an OT, SLP and vision specialist that believe in her as much as I do. They were all as shocked as I was when we left the consulation virtually empty handed.

Even though Sophie can't tell me she loves me and that she believes in me, I know she does, which is why I will keep fighting for what she deserves.  She will be ready for school in a year's time even though her next waitlist is over a year.  A year.  I will keep finding blogs and websites and new ideas that will keep allowing her to learn like she wants to.  Thank God we bought the Ipad when we did and I didn't wait for this appt.  They didn't even give us any ideas for the Ipad that we already own, let alone telling us she would be a candidate to use one of theirs if we didn't.  Ugh.

She will have a voice in this world. 
I will not fail her, I guess we are just on a continued journey of proving that she can do it.

I feel like I can't convey anything I want to just yet, I need to get my thoughts together and start tomorrow, a new day.

Growing

I figured it is about time for me to figure out how to put a video on here, so I started up a youtube account and uploaded my first video.

Sophie has been doing so well with the Ipad and she loves peek-a-boo barn so I purchased the full version yesterday for her.  She focused on it for more then 5 minutes which is amazing in itself.  But even more amazing, she turned every page on her own and was very happy the whole time.  I have included the short video of the end here.  The reason I wanted to have a video is to show her hand movement.  She kind of moves her hand at the wrist back and forth to swipe at the Ipad screen.  This is a totally new move for Sophie which she started using when we introduced the Ipad.  It didn't take her too long to figure it out either.

We still just use the Ipad with Sophie lying on her mat or sitting in my lap.  It is too difficult for her to coordinate her eyes and hands otherwise and she is unable to use it properly.  Baby steps.


Sophie has been growing in leaps and bounds, physically and mentally.  She has shown us so many new skills and is vocalizing her wants and needs much more lately.  We know that she is trying so hard to tell us what she wants but sometimes it is hard to know what she is trying to tell us.  Tomorrow I am hoping we will begin a new journey to help fix that.  We have our appointment with Augmentative Communication Services tomorrow and I am positive that she is going to be referred to the program.  She deserves it so much and I will fight for it.  We have abandoned our trial of "look at me for yes" and have been working on "smile for yes" and it is going much better.  We want to move ahead from there and have her use words.  Having a non-verbal child is very, well, it is the most difficult thing to be honest.  I can deal with not sitting up, not walking, not eating by mouth, and all the other things that are so difficult for her.  But the not talking, it is hard.  She communicates, sure.  But it is guess work alot of the time for us and I know that she is frustrated at times, although she is little miss laid back go with the flow, thank goodness.  So tomorrow is the day that we have to get out act together and prove that she is ready for a system that she can talk to us with.  If it is the Ipad, awesome.  If it is something else, bring it on.  We're ready, she's ready.

We are also about to trial a wheelchair.  Sophie currently has an "adapted stroller" which has been great, but she is growing out of it and it isn't doing the job it needs to anymore.  She needs more and more support as she gets bigger, Sophie is very hypotonic (floppy) which is great in some ways like she doesn't need meds to stay loose and we will hopefully avoid alot of the usual surgeries that go hand in hand with severe spastic CP (Sophie has mixed type CP - Dystonia and Athetoid mostly)

This chair is going to come with us for a week.  It is much too small for her as shown, so they are going to fit it for her and then we will be able to trial it with her.  As you can see, it is a real wheelchair, no hanging out in a stroller for our girl anymore (now, the stroller is a paediatric special needs adapted wheelchair that was the low price of... wait for it...$8000, yeah special needs ain't cheap)

This is a Zippie and we are also going to try an Iris which has an amazing tilt function that keeps the centre of gravity in the same place.  This one has tilt but not quite as advanced.
It is a big thing to be moving up to this, she is such a big girl now and is ready for a cool ride!  I am thinking hot pink might be in order.  :)