Special Exposure Wednesday -- Smackdown

THUD! Groan! Ughhhh! Arghhhhhh! Thud-thud! These were all noises coming from our family room last night. I need not worry or hurry, for they are the familiar sounds of my husband and son wrestling. (However, it does freak my mother out every time she hears it!) It meets some big need in N for proprioception.

I always fear the big "OWWWWWW, that HURT!", which is just as likely to come from my husband. Their tangled mass of body parts keeps me from being an on-looker most of the time (how do they do that??), but I had to snap some photos last night. This only made it go on longer than usual.

New Night Gear

Awhile back, I referenced a variety of appointments that we were going to, and they all were close to one another. It seemed like that was all we did – go to appointments. N has been remarkably healthy, considering he has Down syndrome. His main area of concern has been his stomach, which I have mentioned. (He has a long history of reflux and was on 4 different meds as a one year old to avoid surgery for it. He only takes one thing as needed now.) I know that many of you go to appointments far more than we do, so I was thinking of you lately!

We did the endocrinologist (remember that annual thyroid tests at the pediatrician may not be giving the true picture!), 3 orthodontists and 2 oral surgeons, plus the sleep study neurologist (and first sleep study) all in about two and a half weeks. Strangely, the permanent ankylosed molar (unrelated to Down syndrome), is what is causing the most confusion. The one orthodontist at Children’s Hospital hemmed and hawed for about 45 minutes about what to do. He even left the room twice. (Was he going to look stuff up on the internet??) When I threw a suggestion into the ring for consideration, he immediately said, “Yes, that is what we’ll do,” and began writing a treatment plan. Now that's a scary thought! He’s not the one we are going with, but braces should be on in about two more weeks!

Because he does have significant sleep apnea, the poor guy went for his second sleep study to measure what his air pressure needs to be with the CPAP machine. Thankfully, his sweet dad was up for this again. More electrodes, more attachments, then the Darth Vader mask. The first line of the report reads: “We realize you had great difficulty getting to sleep in a new place with the mask on.” Understatement, I am sure! We went a few days ago for training in operating his very own CPAP, and he is learning to wear it. (I can NOT imagine!!)

He is dutiful and compliant, but I feel sorry for him. Someone said it is like getting used to new glasses—once you see the difference it makes, you will want to wear it. I don’t know . . . Could you sleep in this??

If You Could . . .

Is it possible that writing techniques taught to my son two years ago are positively affecting language and communication today? I have reason to believe so. I am going to attempt to recall several of the questions he has asked me recently that I believe are connected to his 7^th grade English class. His middle school years were complicated and are fraught with wishes for a do-over on my part, but it encourages me to see that something good yet remains from that class I pushed for him to be in!

Every single day there was a writing prompt on the board, and the students were required to answer it as fully as possible in a short amount of time. This was sometimes frustrating for N, due to his fine motor skills not allowing him to write as fast as others, not to mention his language delay. (We looked into a device –like a mini laptop—but it did not work out.) The questions usually started out, “If you could _________, what would you_________ and why?” He never turned these questions outward. Until recently. Now they are non-stop.

“If you could have any superpower, which one would it be and why?” (Hmmm, still thinking. . . .)

“If you could drive any car you wanted, what kind would it be and why?” (Mine is fine. If it stopped working, I would think about it then. I just don’t let myself go there if there isn’t a reason! But I said an old Camaro anyway.)

“If you could work at any restaurant at all, which one would it be and why?” (I said a bakery. I’ve always wanted to operate an industrial-sized mixer and use those huge ovens and pans. ??)

“If you could work at any store, which one would it be and why?” (I said “Glo”, this cute little makeup store. I have a thing for tons of colors-- I only need to look.)

“If you worked at Sonic and it was your lunch break, what would you fix and why?” (I said tater tots that are fried twice as long to get them really crispy.)

What I recently learned about him is that he would work at Bed, Bath and Beyond if he could work at any store, and that if he worked at Sonic, he would make himself a triple burger with fries and a Coke.

I read just recently that adults and children with Down syndrome typically ask much fewer questions than others. This inhibits conversation greatly if you do not ask questions. What cracks me up is that he never forgets the “why”, leftover from the class! I would love to know why two years later this is re-surfacing and what jogged his memory.

Now I ask you. Do you have a definite opinion on any of these questions? Please tell. And why.

Don't Hang Up!

Because I have told you of my love for books and what my favorites were last year, I must tell you about this great book I am reading daily this year. Thanks to my good friend, Miss V, a pretty new leather book has made its way to my bedside table. I have found it to be honest, thought provoking, and challenging. Its daily entries are brief, and they direct my thoughts toward God. It is entitled Jesus Calling. (When I see the title, I immediately want to say, “Hello!! I am here! Don’t hang up!”)

I can see already that its themes are “trust” and “peace”. It is so beautiful. I would say this is one not to pass up for 2011. You can find it here at Amazon.com.

P.S. Husband got the app for his iPhone and loves it. I personally prefer a hard copy.

Special Exposure Wednesday

I wish I could take credit for these photographs! We were offered a free photo op at our local genetics clinic if we could come in on a certain day. I jumped. I love a photo op, plus these turned out to be ready just in time for Christmas gifting. Sometimes N is hard to loosen up, but he was hamming it up on this day with our cool, Harley riding, leather-wearing photographer dude. Many thanks to John Paul Jones for his kindness and his wonderful eye!


See more photos at 5 Minutes for Special Needs.

Self Determination

This topic is brand new to me, but it has been a popular one for the last few years, I am told. It is very important to middle and high school students with disabilities, and it is one my son will soon become familiar with -- as soon as I can fully explain it! Here it is explained somewhat by a person with a disability:

"What people need to realize is that self-determination can be different things to different people. All people should have the opportunity to be self-determining, based on what that means for them. They might need some guidance, they might need some help, but that doesn't mean they ought to be shut out of opportunities to have their life. Everybody needs some support at one time or another, I don't care who you are. What's important is to focus on what you can do, what you are good at and like to do. When you are getting supported, you have to take the initiative to tell other people what you want, what you need, and the supports you will need to live the way you want."
(I found this quote here.)

A more in-depth description is this:

"The concept of self-determination has become important in the field of special education and disability services over recent years. This emphasis has come about as a result of several factors, including a changing view of disability, legislation, research findings and advances in teaching technology. Self-determination is highly important to the career development and transition process and it needs to be encouraged throughout the lifespan. It is important for all students, with and without disabilities, including those students with the most severe disabilities. Self-determination instruction can be provided within an inclusive framework and is important for educators as well as students. Family participation is important to the development of self-determination. The Division on Career Development and Transition of the Council for Exceptional Children supports and affirms approaches rooted in self-determination for development and delivery of effective educational programs."

(I found that one here.)

It looks like we need to help our older kids with special needs figure out a plan for what they want in life and how to get there. There are some assessments that they can be given at home or school that will definitely be eye-openers for them and for us. Check our this website for all kinds of opportunities for assessment regarding goals and plans.

If you are familiar with Self-Determination, please do tell! There is always something new to learn.

My Best Reads of 2010

As I said, my goal was to read one book per month last year, and I actually read 24 in total and portions of 5. See? A goal is good for me. I did not over-shoot it on purpose, I just got on a roll and was enjoying myself. In November I only read a short story, and I noticed something missing from my life during that month! A few of these books came recommended from Lesley’s Book Nook, but many of the 5 I quit did, too. (That chick likes sad books. I do not.) Ok, without further ado, here are my favorites, in no particular order, with many thanks and my undying love to the library.

Nonfiction:

Three Cups of Tea by Greg Mortenson

How to Really Love Your Teen by Ross Campbell

The Reason for God by Timothy Keller

Self Talk, Soul Talk by Jennifer Rothschild

The Little Black Book of Style by Nina Garcia

Fiction:

The Guernsey Literary and Potato Peel Pie Society

The Help by Kathryn Stockett

Fifty Acres and a Poodle by Jeanne Marie Laskas

Looking back, I see that I am really picky about my fiction. Half of the books read were fiction, but I actually think I prefer nonfiction. I want something pretty lighthearted and uplifting, and I don’t like a lot of violence or any trashy stuff . . . I do like a mystery, though. I like to read books that are clever. One I enjoyed that did not make it to my top 8 here was Sense and Sensibility.

I would love a good recommendation for 2011!

P.S. If you are a mom of a young child (especially one with special needs) and you think that you will never read a full book again (at least not one for adults), here is hope! I am proof that you will once again re-gain that time that you now feel is gone forever. It's not!