Special Exposure Wednesday

Spring abounds in my yard....

My sweet little peach tree is in bloom



As is my forsythia




And a whole bunch of these little periwinkle flowers




I love Spring - until the pollen shows up, that is.

Apps for Ashley

My gotta-have-the-latest-gadget son, Chip, got the new iPad 3 last week. While I am very happy for him, I am also thrilled (!) because it means Ashley gets his old one!! Yes, it is the first generation iPad, and yes it is a little slow and crashes sometimes, but still it is very exciting for her.

Ashley has been using an iPad at school for a year now, and loves it! The school staff was amazed at how quickly she picked up the techniques (finger swipe and such) as well as at the increased pace of her learning. Of course, I have been telling them since she was in 3rd grade that she needed a computer-based curriculum...

I've asked her teacher to let me know what apps Ashley uses at school so we can get the same ones for home. But, I am also interested in apps you may have found to be especially good for a child with special needs. Keep in mind that Ashley is severely visually impaired (blind in one eye, 20/2000 in the other) and severely hearing impaired (profound loss in one ear, severe in the other). She doesn't need any communication type apps, proloquo for example, because she indicated years ago that all she wants and needs for that are her hands for signing. She loves Tigger, SpongeBob and Elmo, and loves looking at people's (mostly children's) faces. She likes numbers and letters, and she likes movement, i.e. dancing letters and numbers. She's not a huge fan of coloring apps because she would rather create three dimensional artwork.

So, given all that, what are you recommendations for some iPad apps??!!

The Mutilation Continues

Back in 2007, I wrote about Ashley a young girl from Seattle who had decisions made for her that forever altered the course of her life. The pictures to the right, courtesy of The Guardian, show Ashley in 2007 and again in 2011.

A Tale of Two Ashleys

A Tale of Two Ashleys, Continued

A Year After the Mutilation

As I wrote back then, "She had no say in whether or not she wanted her uterus removed, her breast buds and milk glands removed and massive doses of hormones injected into her. She had no say as to whether she wanted to remain a child for the rest of her life or wanted to grow and mature like every other young girl. As her siblings grow, she will forever remain a young child. She will watch her parents grow old and will perhaps wonder why everyone around her changes but she does not. All of these decisions were made for her by her parents, parents who decided these things were in her best interest."

The debates were many and heated, and they live on today. They live on because parents are quietly also doing the same thing to their children. Both boys and girls. The parents hope no one finds out, but The Guardian in the UK did, and their articles are listed below. I urge you all to read them and express your opinions on this matter.

Rise of The Ashley Treatment Continues

Ashley Treatment on the Rise Amid Concerns from Disability Rights Groups

Signmark

I love ASL videos and found these while looking around for some new music. Signmark (that's his name) is a Deaf rapper.....Enjoy!

Amazing

Life support was removed from Corey's birthmother on Tuesday of this week, but apparently she didn't need it anyway. She is still alive!

I don't know how she went from no discernable brain activity last Friday to shaking her head up and down and side to side in response to yes/no questions.

Actually, it reminds me of my ex-husband. People who one would expect to not live very long given their addictive life styles seem to live much longer than anyone would ever have thought.

Corey seems to have relaxed a bit, but there are still no good expectations for his birthmother's future. But who knows, she's already surprised everyone....

I'm sure Corey would appreciate your continued prayers.

Let Me Share With You

Just because our children have different needs and abilities does not mean we don't like to talk and brag about them. We can't usually talk about the after school activities, the football games, the parties, the sleepovers, or the dances our children attend. We don't often talk about the shopping trips with our daughters or our trips to the movies or the local theme park. And, we don't often talk about the future - what colleges are children are applying for, the type of husband or wife we hope our child will choose, or the number of grandchildren we long for.

Rather, the subjects on which we can speak involve g-tubes and traches, therapy visits and doctor appointments, impacted bowels and catheter sizes, special needs trusts, school struggles and court cases.

In other words, we speak about things most people aren't interested in hearing.

It may make them uncomfortable. I know my co-worker doesn't want to hear why I have to scrub my bathroom three times a week. They may not know what to say or how to contribute to our stories. They may even think we complain too much or make too big a deal out of things.

With a few rare exceptions, they don't 'get it.' They can't imagine living the life we special needs parents live, and they can't imagine having a child for whom end-of-life planning happens before the child is 5 years old.

But it doesn't lessen our need to talk and share. What can I do to make these non-special-needs parents and caregivers be comfortable when hearing about my life and the life of my children?

Not Enough Seating

Here is a question for those of you who have a wheelchair user in your family. When you go to performances or plays or sports games, how is the handicapped seating handled?

My general impression from the venues we have visited is that a wheelchair user is allowed one companion seat. If our party includes more than just those two people, we have to get seats in some other section. For example, the last time we went to the circus at our city's coliseum, I got two handicapped seats for Ronnie and Ashley, two companion seats for me and Chip, and Corey had to go to another section.

I just really don't think groups of people should have to be separated like that just by virtue of some of the group being wheelchair users.

It's not like the handicapped seats are prime seats. From my family's visit to several different venues, the handicapped seating areas are about in the middle of all the seats. By using those seats, we are not taking special seats away from someone else, and usually we end up paying extra for the handicapped seating.

And just last week, I heard from a mom who was told that no one could sit with her child who was assigned a handicapped seat. No arrangements had been made for companion seating. This child was so excited to see the Lion King show from Broadway, but unfortunately couldn't stay due to the seating issues.

How have you handled this on your outings? Have you found that complaining to management makes a difference? Do you try to work things out in advance of the event, and still have problems when you arrive? If you have found a way around this type of rule, I would love to hear about it!