Tag Archives: Down syndrome

Water, Water, Everywhere and Not a Drop to Drink

That’s a misquote of Samuel Coleridge from The Ancient Mariner, but it’s the way I’ve always heard it, so I hope you will read on, and not slam your computer closed in disgust because I misquoted one of the greats.

I carry a Nalgene bottle with me pretty much everywhere. The two cars we have are not equipped with drink holders which will accommodate a Nalgene. I have tried stashing the bottle on the driver’s side floor to the left of my left leg, tucking it beside me between me and the door, putting it in the catch-all compartment between the seats (the top won’t close, though), putting it on the passenger side floor (of course it falls over and rolls out of reach), and just standing it up on the top of the drink holders. Nothing works. So, my beloved Nalgene bottles have started to seem like a burden, although I am very used to and quite prefer to be drinking water all day long.

This morning I took Kepler to the first of four swim lessons this week. I made a nice little video to show my many readers, but WordPress will not allow me to upload an mp4 file. Apparently, YouTube videos are no problem, but homemade videos don’t work without some serious tweaking. Please hold while I upload it to YouTube and then embed it here.

I’ve decided today that I’d like a handsfree drinking system to carry around all the time. The Nalgene bottles just get the heck in the way of everything! Any recommendations? The sad thing today is that my favorite red Nalgene slipped out of my hand at the swim school, and completely broke into two parts. Did I drop it on purpose? I don’t think so, but I do know that my immediate reaction was a feeling of relief. Always carrying around that bottle when I am also keeping track of Kepler, carrying bags of library books or groceries, carrying my phone, dealing with all the little foibles of Kepler — doesn’t want to put on his crocs if they are wet, so I carry them around and watch that he doesn’t slip, etc. Always carrying it around makes each task I do just that much harder.

I think sometimes I just move so fast that I don’t really stop to think about how I might solve the problem. But I really don’t want to carry these quart size Nalgenes around anymore. Ideally, I would have about four of them filled at home and place them at strategic points around the house so that I have one to drink without having to keep track of one. Ideally, I would have two that fit in my cup holders in the car and take those two in the car, but not into the establishments I frequent like the library. I think it’s a habit that needs adjusting.

Actually Reading the IEP

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An IEP is an Individualized Education Plan, created by a child’s school to determine which specific objectives will be worked on, and how they will be measured.

I have been to 8 IEP meetings now, where the objectives have been gone over with me and I have signed off on them.

This year, because I was looking high and low for a receipt for something completely unrelated, I had the opportunity to review and organize my IEP file. Each IEP is about 20 pages long, and I have never actually sat down with one of Kepler’s and read all the way through it. In my file, I found an “IEP at a Glance” document from a couple of years ago which boiled down the pertinent details onto a couple of pages.

With my newfound energy and enthusiasm for all things Kepler, I decided to create my own IEP at a Glance doc for this year’s IEP. Turns out when I read it, not only do I actually understand the objectives, but I also am able to ask intelligent questions.

One of his objectives has to do with reading comprehension. How does one increase reading comprehension, I ask? Mr. Google had some very interesting answers, which I will be applying to our work together this summer.

As much as I accept my inability up to this point to do the kind of work that Kepler could have benefited from, I still find it hard to completely allow that to be the case. Of course, there is not one single thing I can do about the past, now is there. But it feels indulgent to allow those past transgressions to go unpunished. And yet, I realize that punishing myself doesn’t change anything about how it was. Putting my focus on now and on the future seems more productive, not to mention compassionate. If I could have done it differently in the past, I would have.

I found a  (not free) resource tonight called “Reading and Writing for Children with Down Syndrome, Ages 5-11” and purchased it. I’ve only read eight pages and have already learned a tremendous amount about how to work with Kepler. Although the book says children with Down syndrome learn to read the same way other children do, they also point out that children with Ds tend to have “uneven ability profiles” which means that the steps may need to be broken down into much smaller parts, and the process completed at a much slower pace.

My biggest takeaway so far is that teaching the words as sight words first is of benefit because children with Ds are such visual learners. I’ve always loved phonics — it’s one of the most logical teaching methods I have ever used. But that’s not the best way to teach Kepler!

I’m so excited about the things I have already learned this summer with him. I hear the siren song of homeschooling calling my name, but I am just going to focus on right now, and see what we can do in these two months. Like I’ve said before — he deserves this. And, really, I think I do, too.

Knee-deep in Curriculum Research; Diving Right In

Today’s research yielded several possibilities for math and reading curricula to use with Kepler. It hadn’t occurred to me until today to use more than one curriculum at a time. I came across the blog of a homeschooling mom who has children with special needs. http://peacecreekontheprairie.com/special-needs-homeschooling/teaching-special-needs-children-to-read-in-the-homeschool This most excellent post had links to several materials she is using simultaneously. It made so much sense to do this.

After investigating several possibilities, I have resurrected a program (Read, Write and Type) I previously bought, as well as got registered for free trials for a couple others.

So far, we have checked out the http://www.tiggly.com/apps (Tiggly apps) on the iPad. These apps can be used with a set of capacitive pieces which have to be bought separately, or can be used by touch, which is what we started with today. He loves it.

Another program that I really like and Kepler does too is Reading Eggs. We went through two entire lessons of this today. This program works on the iPad, but not as well as on the computer.

Most of the curricula which are designed specifically for children with Down syndrome seem a little pricey, but I think we can add them as we are able.

Others that I am looking into include the following:

All About Reading

Explode the Code, which I did in workbook format with my big kids, but will do the online version with Kepler

A counting toy called Inchimals.

Possibly the math curriculum Numicon

And an online curriculum called Time4Learning

Will supplement with things I already have on hand and we’ll give it the old college try. At least that is the plan today. I’m sure things will develop as we go along, but we’ve got a decent start. Over an hour together working today, and that’s after an entire day of school.