Monday, January 31, 2011
Heart pounding wildly, I made this call last night. I could barely concentrate I was so worried. But today, he is perfectly fine. I forget to observe things and follow through on stuff that he is new to or hasn't done in awhile. I can't believe this happened, but it is a good reminder to be more diligent with my follow through. I take a lot for granted. Especially the following of directions.
Last night there were no laughs, but now I am able to chuckle a little and remember a friend from high school who did this intentionally. We were with the Spanish Club in Mexico City. We had been warned repeatedly not to eat food from street vendors. My hungry friend could not resist one day and was admonished by the rest of us all the way back to the hotel. Later, he reported he drank part of a bottle of mouthwash as a precaution. Why? "It says it kills germs."
Hopefully, all the cooties are out of his stomach forever and my son's as well. Whew!!
Thursday, January 27, 2011
I need to tell you about a unique opportunity in which you can participate in a study of Proverbs that is held by telephone. My sister-in-law, Pat, is part of a team who helps women in a variety of ways. Their website is called Choosetobe.com, and you can check it out. Their great idea is to allow women to participate via conference call! You don’t have to say a thing; you can listen and glean all kinds of practical wisdom from Proverbs. (You can get the book if you want at Amazon.) Then, when that study is over, they will be doing several “issue” talks, pertaining to parenting, marriage, etc.
I think this is perfect for today’s busy woman who wants to grow in her spiritual life, but does not want to or cannot leave her house. Below are the details. I am thinking I will have to check this out myself! You can listen live or find the call-in number on the website for the recording of the study and listen at a different time.
Believe me, if my sister-in-law is part of it, you will want to be involved, too. She has a ton of energy and will bless you if you are only around her for 5 minutes. When I married into this family, I did not know what a bonus I was getting when I got her! She is a really gifted counselor and a good friend to me.
Below is what she sent me. What a great way to help women right where they are – literally! Starts THIS Tuesday.
An Invitation for You
In 2012 what will you look back and say were the best choices you made in 2011? How important is it to find encouragement and direction for life… as it’s happening? What can you count on day after day no matter what life challenges you may face?
With great excitement, beginning February 11, 2011, each Tuesday night we invite you to join our “Choose to Be” team as we begin an ongoing adventure together learning how to know God in our daily lives and apply God’s Truth in a practical, personal way. We will bring tips for daily living and ways to “enjoy the process” as we go.
God’s intention is not for us to live our life confused, overwhelmed, fearful or without hope. His Truth promises to direct us one step at a time.
WHAT: Weekly Conference Calls
WHEN: Every Tuesday night, beginning, 1-11-11
TIMES: 6-7 pm Pacific time
8-9 pm Central time
9-10 pm Eastern time
STUDY: The Book of Proverbs
STUDY BOOKS: The Bible and “BE SKILLFUL” by Warren W. Wiersbe
The author, Warren Wiersbe, says “The Book of Proverbs is about Godly wisdom, how to get it and how to use it. It tells you how to be skillful in the lost art of making a life.”
CALL-IN # (712) 432-0075 access code: 935742
Wednesday, January 26, 2011
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.
Monday, January 24, 2011
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??
Sunday, January 23, 2011
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 7th 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.
Thursday, January 20, 2011
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.
Wednesday, January 19, 2011
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.
Tuesday, January 18, 2011
"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.)
If you are familiar with Self-Determination, please do tell! There is always something new to learn.
Sunday, January 16, 2011
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
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!
Thursday, January 13, 2011
Here’s how it started. His high school does a great January thing called “J Term”, in which the kids can do internships, take unique classes, go on mission trips or go on school sponsored trips for two weeks and get a grade for it. It is a fabulous concept (except when it takes your child elsewhere on his bday). As I have mentioned previously, Cool Mr. A has a thing for Chicago and independently secured an internship there. He worked out a plan to stay for the 2 weeks with his aunt and uncle and ride the train downtown to his internship site. This place was a writing institute which helps kids after school and in the summer. It worked very well and he loved it. And he was there on his 17th birthday.
The next year he saved up his money (which we matched) to go on a school trip to Ireland, England, and Wales. This was a remarkable trip which he thoroughly enjoyed and still often references. Dublin was a pretty wonderful city, said he. And he was there on his 18th birthday.
The next year he had graduated high school and started college. Several of his good friends went their separate ways, but he had plans to visit his good friend who now studies at the University of Chicago. He rode the train many hours to see the sights with a friend he has known since birth. He got to see her school and meet all her new friends and had a marvelous time. And he was there on his 19th birthday.
This year he and a roommate saved their hard-earned money and bought train tickets and scalped concert tickets to see Weezer’s Memories Tour. He stayed in a youth hostel and on a dorm floor of some internet friend (YIKES) and walked all over the place, eating Chicago-style hot dogs and deep dish pizza. He said it was great. (I wondered, though, if the internet friend was a fake person who might have really wanted his kidney . . . “the difference in our generations”, he says.) And he was there on his 20th birthday.
Now I see. Sorta hard to go back to pin-the-tail-on-the-donkey after all that. I guess when he got old enough to be in charge of his own birthday party, he grabbed it! Now he is back at school. I am sad about it, too
Happy Belated Birthday, Cutie Pie.
Wednesday, January 12, 2011
Here, Mr. N is lining up his snowballs for when dad comes out the door. You can see how it is still covering his brother's car with several inches. (Ironically, brother was in Chicago with no snow!) Two days of no school and lots of outdoor play. Who could ask for more?
Tuesday, January 11, 2011
Something about the brand-spanking newness of the year has me motivated. I am all “a-swirl” with ideas for home improvement and am excited about a clean slate, about forward progress, and about getting things done. Last year my only goal (I read we should nix the word “resolution” and substitute “goal”--forgot why, but I was compliant) was to read at least one book a month. It was a great goal for me. I tried to alternate between fiction and nonfiction. I’ll let you know the year’s favorites soon.
For something different this year I visited this website (http://www.getorganizedwizard.com/, see Life and Goal organizer) that suggested making 20 “goals”. It doesn’t just leave you hanging there, though, it helps you break them down and send them to dates on the electronic “goals and priorities” and “monthly planner”, which incorporates them into your daily to-do's. Exciting!
Typically, though, I do not get all energetic in January. I prefer summer and fall, and January seems . . . well . . . long. I remember that a friend was helping me rearrange furniture once, which I love to do. We did it early in the year, and it seemed to bring us mutual satisfaction. “There,” she said, “that will get us through January.” Hmm, I wasn’t the only one who did not feel fondly toward the first month. But this year seems different; I don’t want to endure January, I want to accomplish stuff and have fun doing it.
I got out a notebook from a class I took last year, called “Woman on a Mission”. It was a fabulous class that helped me learn so much about myself and my purpose. One exercise (and there were many) that opened my eyes was to simply write down 20 energy drainers. It need not take all day, just sit down and spill it. It could be anything from “the garage” to “not knowing what’s for dinner”. I put “not having easy access to the backyard” and a few other things that have morphed into goals for me. (Help me remember to read my “Boundaries” book again.) There is nothing better than taking an energy drainer and making it work into something positive.
One of my goals this month is to train N to be more responsible for his personal space and for his clean clothes. That will be quite a feat; even though he can do laundry, it takes quite a bit of reminding to get that room into something presentable! And, it gets destroyed in no time flat—not sure what all he does in there. So, I’ll keep you posted on that, and if you have any creative ideas to help me with that room, please share. Do you have any goals for this year?