No Note, No Call, Nothing

Last week was the first week of ESY/Summer School services for Ashley. I'm used to getting a call from the teacher the week before school starts so we can chat about what I feel the teacher needs to know about Ashley. I know that the teacher is sent a copy of Ashley's IEP, but that doesn't really define who Ashley is. This year, I got no call. So, the first day of school I sent in a document that listed what I felt were important points for the teacher to know and understand.

I expected to get something back that first day - maybe a note from the teacher introducing herself, maybe a list of supplies the teacher would like help with. But I got nothing. In fact, I got nothing until the last day of school last week, and that was a quickly handwritten note from the teacher asking for spoons and wipes, and of course, the same medical form that I am asked to fill out every single school year and ESY session.

But something else of significance happened that last day of school last week. Ashley came home with three fingers on her right hand very swollen and black and blue. No mention of that was included in the note from the teacher. (The picture above was taken just as Ashley got home from school. The swelling and bruising got much, much worse as the night went on...)

I know whatever happened didn't happen on the school bus that day. The summer school bus driver and aide are wonderful beyond belief. The would have mentioned anything that might have happened to Ashley. So, it had to happen during the school day.

And just to add to my concern, Ashley has a fulltime aide with her at summer school. No note from that person either???

The injury was pretty significant. I'm sure Ashley would have cried when it happened. It looked like she had shut her hand in a door or something similar. It was so tender to the touch that it was difficult for me to get a good look at it. And no one at school felt it was important to mention this to me?

I took pictures and sent an email to the teacher asking for an explanation. I haven't heard back from her yet, but expect to today. If I don't, I will make a personal visit tomorrow.

All this - no call from the teacher, the injury, little to no communication - does not bode well for this summer's ESY services...

Foodie Friday

Want a special meal this weekend? My personal chef, who just happens to be my brilliant son Chip, recommends the following:



You can find the recipe here.

Special Exposure Wednesday - On Thursday

Yep, I've gotten my days all confused this week since I had Monday off for the Fourth of July. All day Wednesday I was thinking it was Tuesday. Hence, the reason Special Exposure is a day late.

Now, a little explanation about this picture. I tend to overthink things and make them more complicated than need be. I have wanted some sort of umbrella for Ashley's and Ronnie's wheelchairs. I've looked at golf stores and online, and everything I found was either too expensive or just wasn't quite right.

Then my brilliant son, Chip, who doesn't overthink things, suggested we get some PVC pipe, some spray paint, and a couple of clamps. Voila! an umbrella holder that didn't cost much at all but is quite effective. We used it during today's downpour and both Ashley and Ronnie stayed nice and dry!

Teacher

Chip is a business major (information systems) in college, and is doing very, very well at that. He is also a burgeoning photographer and is doing very, very well at that. He also loves to cook gourmet meals, and again, he is doing very, very well at that. But there is also something else that he is doing well with, and that is being a teacher for Ronnie this summer.

Chip has taught Ronnie to do his own laundry – from start to finish. When adaptations or modifications were needed for Ronnie to accomplish that, Chip figured it out and implemented them.

He is teaching Ronnie how to cook. So far Ronnie has made peanut butter fudge and the best baked beans ever.

He is teaching Ronnie how to clean up the kitchen. Ronnie loads dishes into the dishwasher, adds the soap, and know how to start it.

He is teaching Ronnie about money – about the exchange of money for goods and services, and how to make sure the right change is received. Chip’s next plan is to teach Ronnie how to save some of the money he earns as his allowance.

Chip has taught Ronnie how to clean his room and make his bed each morning. He has taught him how much easier it is to move around the room when the floor isn’t littered with objects, and how much easier it is to find things when they are put in their proper place.

In short, Chip is teaching Ronnie the skills he will need to live independently as an adult.

I know Chip likes information systems and photography and cooking, but I do have to wonder if he is missing his calling as a teacher and mentor for people with disabilities!

How To Make It Work?

Here I am again asking for advice. There is one extra caveat this time though. I apologize in advance if I do not use the politically correct words, and I promise not to judge you if you don’t judge me.

When Ashley was younger, she exhibited many behaviors that were similar to the behaviors of children with Autism. That’s not unusual in a child with deafblindness. I even had one doctor who wanted to give her that diagnosis, but it just never seemed appropriate to me.

As her communication skills improved, the behaviors diminished. And, I believe, with maturity even more have diminished. In addition to that, my parenting style includes a heavy emphasis on socially appropriate behavior. That may come from my Southern upbringing…

The past weekend a friend of mine and her family joined us for dinner. One of her children is diagnosed with Autism and exhibits many of the same behaviors I saw in Ashley when she was younger. The problem came when that child with many behaviors which were pretty extreme was around Ashley.

Ashley came as close to a meltdown as I have seen in many, many years. Perhaps it was too much stimulation – perhaps it was the stress endured by both the child and those around him – perhaps the noise and the crowd was just too much for Ashley – but she had a very difficult time, and was on the verge of reverting to some of the same behaviors.

So here’s where I need the advice. This friend is one of my best friends. I want to enjoy the company of her family and I hope she wants the same of my family. But how do we reconcile her child’s needs with Ashley’s needs? What can we both do to support our children during difficult times, and encourage socialization that is positive?

I want Ashley to understand that people are unique and should be valued for that uniqueness, but I also want her to be comfortable.

Suggestions???

Happy Fourth!

I hope you all have a safe and happy Fourth of July!

Rules? What Rules?

Ashley loves basketball but hates rules.

Last night, we attended the opening of a new basketball complex, one which includes a league for wheelchair basketball. Now Ronnie’s team will be able to play during the summer as well as during regular basketball season.

Both Ronnie and Ashley were in their chairs when we arrived for the opening ceremony, and most others in attendance assumed both of them would be playing the inaugural game. Unfortunately, it would not have been much of a game had Ashley played.

Ashley’s version of basketball is “gimme the ball”, “no you can’t have it back”, “it’s mine and I just want to sit here and hold it”, and “ok, now I’m ready to throw it but only up in the air so I can catch it again.”

I’m sure in her mind she would be saying, “You want me to roll up and down this court and get all hot and sweaty? No thank you.” Or, “Sorry, I can’t put on that yellow and blue jersey. It does NOT match my cute pink shorts.”

So for now, Ashley and I will be spectators, cheering on Ronnie and his team while we fan ourselves and drink iced beverages. Trust me, it really is safer that way – at least for the other wheelchair athletes!