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Saturday, February 27, 2010

Different NOT Less

I have been thinking about this lately. It's been less in my face because Ellie is in a GREAT school and we are surrounded by people who are in the special needs community. We are lucky for all of this. But I think sometimes about how we will immerse ourselves in life even more. We are still somewhat isolated outside of school. It's much better since school, but still. One of the keys to our freedom (freedom being defined by me as access to community and all it has to offer) is Assistive Technology. We received a grant from the Gasperini Fund for some Assistive Technology but have not spent it yet because we are not sure what to buy.

It's hard because Ellie has motor disability. Her fine motor, is ok, very ok in that she can use her hands at all. She can operate her toys and her Weemote. She is having some success using my iPhone to swipe through pictures. The "tap" the screen part is more difficult, but I have not set my own phone to the accessibility settings yet. I am overwhelmed by all of this sometimes and frustrated. There is a huge smart board at Ellie's school - but she only gets to use it an hour per week. What I love about the iPhone is that we can instantly take pictures or videos of people and things that are meaningful to Ellie and use them to communicate and play.

Yesterday, Claire, left a comment on this post telling me about this app for the iPhone/iPod.

Thanks to Yumi for inventing it. It is always disgusting to me and outright wrong how much the companies who make "assistive tech" charge. I have heard the argument that they have to charge more because there is such low demand. I think that argument is a lie. To have to pay $65 for one switch that probably costs the company $1.50 to make is price gauging at its worst. I appreciate the high tech environment and the freeware movement especially.

The problem in our life is NOT that Ellie has a disability, it's the lack of access. It truly is. A very smart Professor at the school I am working at now has termed this the "Social Model" of Disability.

Thank you Claire!! You have reminded me how much I love my blog readers and other bloggers and the access to the world of parents in my same situation struggling to figure out the same problems.

I am going to upload it and give it a try. Why, oh why does the iPod NOT have a cameral and video? I will hate it if the answer is pure marketing that has to do with ATT and not making a profit if people buy such an iPod instead of the iPhone and it's network.

Still the need to have to "tap" is a problem for Ellie. But for $29.99 I am ok with giving it a try and being Ellie's "remote" to help her do it. I am looking forward to the day when Ellie, using voice output or some other means can more easily tell me what's on her mind. She has been expressing herself so much more in the last 6 months. It's incredible and one of those corners she turns when we least expect it. Happy days.

Thanks to this blogger, Tammy, mom of Parker, for her blog as well. I will be adding it to my list.

Let me know if you try Voice4u and have any success.

Monday, February 22, 2010

Illigitemus non carborundum est

Ellie is in the midst of another migraine. The bad kind - where you puke and then are just in agony or are in agony first...etc. She woke up at 4:30am last night rigid in pain. Her feet had such violent clonis (tremors) that I couldn't get it to stop. The Tylenol did nothing but the Motrin did. For the first time I gave her Zofran after she couldn't keep her rice milk down. I was in Mama Warrior mode. Ellie has just gained back the 6 pounds she lost and I was like, "I am NOT going down like that." And whipped out the Zofran which I am now a fan of (it's an anit-nausea med). Twenty minutes after receiving it she asked for applesauce. Though she ate very little, she kept it down and was able to eat after a couple of hours and keep it down. No more abdominal migraine weight loss at least.

Her temp has been struggling not to climb so I am on Tylenol/Motrin watch all night. Her timing is perfect as Dave is away on business. Sigh.

I wish I knew what the trigger was. There are triggers for migraines right? Maybe I am just looking for some mythical point of control.

Last week was school vacation and Ellie had a blast and slept well. It was low key but great to get to have so much time with her during the day in our sunny home. Her latest obsession is the iPhone. I taught her to sign i phone and it's the first thing she wants in the morning and last thing at night. We make videos and take pictures of her toys. We take videos of people she loves doing fun things they do with her to make her laugh. So what's not to like? It's a good bargaining chip too to get her to do other things, like her math homework!

She is also into They Might Be Giants. That's right TMBG for all of you who were fans of them in the 80's they now do kids music. Ellie's favorite and only TMBG cd is "Here come the ABC's". She is also obsessed with this which is a very welcome change to Signing Time and Baby Einstein - not that those are totally out - but very much in the shade. Yay.

Warning, parental side effects include: incessant humming of Flying V's and "F is for fun!" and wanting to "Go, go, go for G!". The tunes are very catchy. If you don't believe me, check it out here.

It's really nice to see her enjoying two new things that are less baby-like. Her interests are beyond what her motor control will let her do so she still plays with toys she has had for 5 years in some cases. They comfort her and the way she plays with them changes...but still. I am hoping that the iPad will one day include a camera. It's the perfect size for Ellie. At least it looks like it is. The iPhone is great but a little on the small side for viewing. I am wondering if she has gotten eye strain from it and that is what caused this latest migraine episode.

Also, to those of you out there saying they iPad is for grandmas, I have a few comments.
1. Get your head out of your butt and realize that saying that is derogatory to women.
2. It's a truly amazing piece of equipment. For proof go here (warning - you may be convinced and you may laugh because this guy is hilarious).
3. Apple are one of the only big computer companies working actively (have a designated team) on assistive technology for the disabled. I support that and so should you! Assistive technology is the access point to the world for Ellie and other's with similar issues.