Getting Old?????

Yesterday was my birthday, and I am amazed to find myself at 58! When I was a teen, I thought that 30 was "adult", and "40" middle-aged, and "sixty" was pretty old. Well, when I hit 30-40-50.... I kept redefining my definitions.Its not that I think "old" is bad, but I don't FEEL old. In fact, as a result of my walking and weight loss, I feel younger than ever (almost... I am ignoring here my bad knees). OK. To be honest, I realize that I do not have the stamina I had at 18. But I have a lot more than I had at 45!
[Actually, a good question for discussion would be: “What is feeling ‘old’?” Our “love-youth society have perhaps led us to believe that growing old is not a positive thing, while in many ways it may be!] And in a way, I DO feel "old", in that I feel I have a vision and maturity and wisdom that most young adults have yet to gather.
But at almost-60 I am not willing to consider myself "old", rather "middle-aged" (even though some voice from within is whispering in my ear that I have undoubtedly passed the midpoint of my life span.......). I wonder what I will feel like at seventy????
And I look at the older people in my life who are WAY fitter than I am, and realize that the only real problem is not years, but how you feel!

The New Dishwasher/ The Eye Infection

No, I didn’t buy a dishwasher. And I don’t plan to. But on Friday night, Ricki INSISTED on collecting and washing the dirty dishes and she did a VERY good job at it! (I think I can “blame” this on her new school)If you think I can laize around now, Ricki told me Saturday morning that "You can do the dishes...."
* * * * *
Sunday morning I was called to pick up Ricki from school because her “terrible eye infection is dangerous to the other students.” I apologized, saying that I hadn’t noticed any infection, and would come right away. To make a long story short, she had a substiturte teacher, and Ricki told her that her eye hurt, and from a distance it “looked red”. Well, after Ricki had gathered all her stuff to come home, I asked her to let me see her eye, to determine how fast I needed to get her to a doctor.
Well, the eye wasn’t red, not outside, and not inside. I left her at school and breathed a thanks to G-d that the substitute is not her regular teacher......

Emotional Insanity

I am sure that “emotional insanity” is not in the dictionary. But it exists, and unfortunately it seems that our government (Israeli) has fallen prey to it.
I would love to see Gilad Shalit released. I can not even imagine in my darkest dreams the nightmare that his family is enduring and has endured over the last three years. I doubt that there is a Jew in the country who does not feel, emotionally, that it is time for him to return home. And that emotional wish has led us to an insanity.
It takes no big brain to see what the swapping of a thousand terrorists, many with blood on their hands, will result in:
-encouraging further kidnappings
-encouraging more murders (even if you’re caught, you get set free eventually)
- a hero’s welcome and venerating of the released murderers, furthering the cult of worship of the Jihad....
- strengthening of the extremists among the Arabs, for “winning” again

I am sorry, but the price is just too high.
It is a shame that at the time of the kidnapping, some sanctions were not placed on the area to pressure for Gilad Shalit’s return. It is a sorry world that if we would place sanctions on the Arabs now, the world would see us only as the villain. Perhaps we should, for once, ignore the “nice” Western world that doesn’t care a damn about Shalit, and pressure the Arabs through sanctions anyway. I don’t know. But I do know that 1000 for 1 is emotional insanity.

“I’ll Make Sure MY Riki is Not Like That.....”

How many times have I heard about a problem other parents have with older children (and young adults) with Down, and so self-confidently thought to myself “I won’t let Ricki fall into that rut. I’ll make sure to teach her in such a way that she won’t do this.”
I guess I thought I was so much smarter than these other parents, and that my access to good educational practices would ensure that I succeed where they didn’t.
Well, I was in for a rude surprise. Ricki sometimes dresses with her door open, and often sticks stubbornly to a wrong and stupid idea. Both of these are things that I once thought would NEVER happen in our home. I AM working on these things, but the realization that I can not wish away bad behavior, but it takes real hard work (and a good plan) is a difficult pill to swallow. Sometimes the realization that her mind just ISN’T working properly, and that her impaired ability to reason sensibly has consequences is a blow. At THAT time, one has to work on accepting and loving your child despite their limitations. (Although that does NOT mean abandoning your educational efforts of behavior plans, etc.)

Miss Little “Thinks-she’s-Independent”

With all that I love Ricki, and am so proud of her achievements, there are those moments and times that her behavior and attitude are downright frustrating. And it is this lack of predictability that is in many ways the most disabling part of her condition.
Ricki is generally “clean” (toilet-wise), and those rare occasions that she wets herself are invariably at home, not in public. (This shows that she cares, and makes a bigger effort outside.) Any clean-up she does herself, and usually I am not aware of any problem until I find the extra laundry waiting for me in the middle of the day. She has a harder time with bedwetting (we are a family of DEEP sleepers), partly due to her refusal to limit (or even cut down on) her drink intake in the evening. But she really takes care of all the cleanup and bathing on her own.
Last night I tried to reason with her not to have a full glass of fluid immediately before bedtime, but she refused. I made the mistake of trying to grab the drink from her, and we had a real fight. [Just as with ANY teen, you will find it VERY difficult to force them to do anything. You have to reason with them, give consequences, etc.]
Well, this morning Ricki was DIRTY when she awoke. Maybe she did it on purpose, because she was angry, I don’t know. But she did NOT have time to do the cleanup all by herself, or she would miss her ride to school, so I helped her. [And yes, I fell for the trap of giving her lots of negative attention, when I should have shut up. I have never claimed infallibility.....]
So what was her reaction to all this? When going down to meet the ride, I urged her to hurry, or she would miss it.
“Go upstairs, and I’ll go down.” Miss Little “Thinks-she’s-Independent” pride would not leave her alone. I guess she needed to prove to herself that she is “big” after all. Not surprising for a teen.....

The Value of Time (2)

My son’s comments really got me to thinking. I wonder if G-d is not looking down at me and saying to himself, “Oh, what a waste of time......” about so many activities(see last night’s post) in my life. Up to this year I was extremely busy preparing study materials for Ricki, and now I do that much less. So I should be wallowing in time, but I am not. I spend a lot of time online, as well as a good hour daily out walking, on the average. The walking is for my health and is not a waste of time. Much of my computer time was.
So I have been making a concerted effort to spend less time watching all those interesting (yet SO unimportant) videos on the news and posted by friends. I limit the time I spend online. I try to catch up with the news by radio as I do housework. Yes, I miss certain things. But choices on how one spends their time is imperative. Today I “wasted” an hour talking with a friend. But THAT is important. And I believe that my blog is too, since I am blogging from a much different perspective than most parents of children with Down syndrome (as there are very few blogs written by parents of older children). But somewhere one has to limit themselves when it comes to pastimes, whether it be reading, movies, computer time, or anything else. It all needs to be BALANCED. But of course, it is easier said than done.

The Real Soldier and the War Games- The Value of Time

Two of my sons are hooked on a computer/internet war game. Their brother, D., who is between them in age, is an Israeli soldier.
D. came home on leave today, and discovered his two siblings on the computer. He leaned over, and whispered in my ear “I also think it’s stupid and a waste of time......” With that he took his books and went upstairs to study for his matriculation tests, which he is slowly taking in preparation for college.
Yes, the army has taught him that life is not a game. He knows how to relax, and have fun, like everyone else. But he is able, much more than his siblings, to weigh the value of his time.

Cherishing a Life

Picture: Ricki and my faher two years ago.

My Dad died a year ago today. On one hand, I feel very keenly the length of this year. Perhaps it feels long because I had not seen my father for the year and a half preceding his death. And besides, there is that part of me that almost denies that he is gone. But all in all, I do not feel sadness over his passing, but rather a cherishing of the time and life that we shared on planet earth.
My father introduced me to the wonders of G-d’s world (though HE would never have included G-d in this). We shared walks around the local lake in the autumn, multihued leaves spread all around us, and the same walk along with my Collie in the foot-high snow. We shared the trek to the summit of Long’s Peak, from where we could see the face of the land extending all around. Our many summers in the Rockies gave me memories of stands of birch, majestic waterfalls, and boulders set along the trail. For a few years I was my Dad’s “diving partner”. We Scuba dived in the Florida Keys, experiencing the largely unviewed beauty of the coral reefs, and the delicate exquisite beauty of a sea shell.
* * * * * *
On my recent visit to Colorado, I saw an ad for hot springs in Colorado, and was a bit sorry that I would miss the opportunity to visit such a spring. I remember how the family visited such a pool more than once in my childhood, and I had thoroughly enjoyed the experience. However, today I would never visit a mixed-sex bathing pool, so visiting the hot springs was out of the question. So imagine my surprise when my city sponsored a chance to visit a hot springs in Israel (I didn’t know we had any, thinking that the mud baths of the Dead Sea were the closet thing here......). So a few days ago I relaxed in the warm waters of a thermal spring, remembering the wide range of opportunities that my father gave me, and thanking G-d for this wondrous world.

A Walking Story

Today rain was predicted for the afternoon, so I got out nice and early to beat the rain drops and get in most of my 10,000 steps before it became cold/wet/slippery. And it just so happened that I was a bit tired of all my regular routes, so I struck out towards the outskirts of our suburb, even though doing this would put me into an area that I normally avoid, due to the high traffic on that street and the resulting car fumes.
So as I was walking along at a good clip, who do I see coming in my direction but my friend who made a Bar mitzvah last week who had exclaimed “WHAT? A diet!” ?
She gave me a HUGE grin, said “Hey, you’re WALKING! Good for You!”
If she doubted me before, I am sure she doesn’t now!

The “Nosh” Escapade

“Nosh” is Hebrew-Israeli slang for “goodies”, candy, cookies, and the like. We generally don’t have any in the house. Occasionally we buy a bit for shabbas, but not as a rule. There is only one event that invariably calls for purchasing of snack foods: a school trip.
Now I don’t remember taking hordes of snack foods on school trips as a child, but Israeli kids do. And while I am loathe to support such nonsense, I allow my kids to take some unhealthy snacks on school trips, but I try and limit it to a reasonable amount.
So when Ricki came bouncing through the door yesterday afternoon with the announcement that she has a school trip today, I reluctantly gave her permission to go to the grocery store to buy some empty calories.
-“A LOT of sweets! ________ (a classmate) said so!”
-"Ricki , I allow you to purchase 2 SMALL snacks. No more.”
The only problem was that this conversation was held only minutes before I left the house for the entire evening. She would go to the mini market on her own......

I returned at 11:00 PM yesterday evening to discover a $20 purchase (76 shekels) of some six Family-size bags of Bamba (a puffed snack), and eight large bars of luxury chocolate. And Ricki was (thank G-d) already asleep. I’m afraid that one very disappointed child will be setting out on that trip today.......

The “Phone War” Escalates

Round two of the “phone war”: Tonight, at 10:45 PM, as I was trying to get Ricki into bed, I saw her grab my phone book (from which she always copies her friends phone numbers), and the portable phone.
-Ricki, you are NOT making any phone calls!
-Just a short call to Ruchi.
-Ruchi is ASLEEP! And YOU should ALSO be so!! Go brush your teeth.
[Ricki starts looking the number up.]
-Give me that phone book, and go brush your teeth!
[Ricki ignores me. As I try to get the phone from her, she dodges around to the other side of the table, and keeps staying opposite to me as I move.
Now at this point I should have calmly thought of a consequence, or gone to call help, calmly, but I didn’t.]
[I turn off the electricity. This has a dual purpose. Ricki can not use the phone, and also sees I mean business. It also brings her exasperated older brother ,(i.e., the cavalry backup troops) who now has torn himself away from the temporarily darkened computer screen. I had called him earlier, but he didn’t hear me.]
Ricki’s brother: “WHY IN THE WORLD DID YOU DO THAT?”
-“Ricki is dodging me, standing on the other side of the table. Grab the phone from her!”
[He grabs the phone and hisses at his sibling, “If you don’t listen to Mommy, you will hear about it from me!”
15 minutes later she was sound asleep. [Partly due to her brother’s intervention, and even more due to my (once I could reach Ricki) putting the phone book WELL out of her reach.]
I think I should have handled it better.... Just not sure exactly how yet......

The Phone Conversation

It was Saturday evening, and I had several things that I wanted Ricki to do. But SHE was on the phone. She had also hogged the phone for about an hour on Friday; talking on the phone has become a favored pastime of Ricki’s. But this call was different. She wasn’t talking to her friend, but rather to her friend’s MOTHER. And it was an extended conversation at that. Now Ricki knows the mothers of two of her classmates, but not this mother. But somehow either Ricki had “hit it off” with this woman, or the lady was simply curious about Ricki. It perplexed me a bit.
However, Ricki was holding her side of the conversation very well, telling this woman who was absent on Friday from school, what Ricki wanted of her daughter, etc. But I anyway drew a line after about ten minutes. After all, Ricki DID have things that needed doing. As most teen girls do......

The Wheeler-Dealer

Wednesday evening I had to take Ricki to get her H1N1 flue vaccination, and afterwards I scurried over with her to our local dental x-rays outlet. Ricki’s dentist asked for the x-rays, and the two locations are very close to each other. Not wanting to make the trip twice, I hurried over as soon as we had completed out 20-minute post-vaccine wait at the health care clinic.
When we arrived, I discovered to my great pleasure that not only had we beat the “arrive by 6:30 PM at the latest” deadline, but the place had no other customers. (I don’t begrudge them their business, but I was glad not to have to wait....)
The fact that there were no other customers meant that the staff there had more time to deal with Ricki, who was looking rather warily at this “I’ve- never-done-this-before” contraption. In the end, Ricki agreed to make the test, but only after wresting from me a promise for popcorn and a soft drink. [She could out-bid a “shuk” seller (open-air market dealer) as well as the best of them....] And she deserved the snacks, because she really kept pretty still as the camera circled around her head for a panoramic film. She only moved a bit once and the film is a BIT fuzzy- but I hope that it is clear enough for what the dentist needs to check: if (and where) there are teeth that have not yet erupted.

Update

UPDATE: It appears that the new drug (IF proven safe, and IF it works) would be more beneficial for the young, helping them cognitively, as well as helping older individuals against the cognitive decline of Alzheimer's. If it will help adults with Down syndrome IMPROVE their learning ability is questionable, and we will have to wait and see if there will be any possitive affects in this area. So I may not have a Miss van Winkle in several years. Instead perhaps the "Last of the Mohicans".....

Breaking News : Rip van Winkle in the Making?

Breaking news is that there may soon ("soon" probably means several years) be a treatment, or partial treatment for Down syndrome, as well as a vaccine for Alzheimer’s, probably sooner. The vaccine is surely good news, if it will remove or reduce the chance of Ricki and others with Down syndrome from getting the disease.
The Treatment for the intellectual disability of Down syndrome is of course much more controversial. As a mother with a teenager with Down syndrome, I always wonder at those who would not accept a cure. Parents state that they fear that treatment might change their child's personality. My reply to this is that my "normal" kids changed too as they hit the teen years; I love them no less. And if being cured would make life SO much easier for my daughter, what type of parent am I if I refuse to treat her for my selfish reasons?!??
[I suspect that many of that 60% who claim that they would not accept a cure will change their mind if a treatment ever becomes a reality.]
The medicines to treat Down syndrome are probably several years away, which for us may be a bit late. I am trying to imagine Ricki as an a adult with a suddenly functioning mind, but with a fraction of her needed education. Such a “Rip van Winkle” state would require very careful and gentle handling, and would be much easier if Ricki's self-esteem would be in a good state to begin with. The possibility simultaneously excites me and scares me to death.

UPDATE: It appears that the new drug (IF proven safe, and IF it works) would be more beneficial for the young, helping them cognitively, as well as helping older individuals against the cognitive decline of Alzheimer's. If it will help adults with Down syndrome IMPROVE their learning ability is questionable, and we will have to wait and see if there will be any possitive affects in this area. So I may not have a Miss van Winkle in several years. Instead perhaps the "Last of the Mohicans".....

I Wish I Had a Picture

“Tzippe”, the sister of the bar-mitzvah celebrant, was dressed in the same dress as all her other sisters: a layered, three tiered grey skirt, and a jet-black top. She leaned back slightly, slidding one foot ever so slightly forward, and clicked the shutter. Quickly she glimpsed at the screen to study the result.
“Oh,it’s good...”, she commented, smiling quickly. She raised the camera for another shot.
A typical 14 year old girl. A typical 14 year old who happens to have Down syndrome. She doesn’t know me, so I explained that I am Ricki’s mother, the Ricki who is the “new girl” in her “group” at an afternoon program.
“You know, Tzippe, Ricki also like photography”
At that, Tzippy smiled. (And so did I!)

(Continuation from the day before Yesterday) And Knowing when Not To (Keep Your Mouth Shut) 2

Overlooking wrongs done to you is one thing when done to promote family cohesiveness. It is another if it leads to encouraging bullying and the like. If someone is consistently wronging you, careless with your possessions, then I am not in favor of “forgive and forget”. When someone recently took possession of a piece of furniture that I had loaned them, using it NOT as I had agreed to, than I DID speak up. Also, it is important to stand up for your children’s rights.
The other day, I was speaking to a family member, and they needed a scrap of paper to write something down. They grabbed a small sheet that Ricki had in front of her, and Ricki protested: “That’s mine!”
“Return it,” I told that family member, “it IS hers. She won’t respect your rights if you don’t respect HERS.”

(Continuation from Yesterday) And Knowing when Not To (Keep Your Mouth Shut)

I was at a Bar-Mitzva. Now for those of you who don’t know, you do two things at a Bar Mitzvah (besides giving a gift): talk and eat! So the friend whose son’s celebration I was attending fully expected me to “dig in” to the plate of food that she was offering me (at 10:30 PM, even!).
-No thanks, I am on a strict diet. No, really.
-WHAT? A diet! After eating all that cake at the retreat two weeks ago?
- WHAT cake?!? I’ll have you know I lost a kilo that week......
-Oh.... I guess you ARE on a diet. (GRIN)
[ But that didn’t stop one older lady from badgering me about “What a shame if the food goes to waste”. REALLY (eye roll). NOT my problem.

[ And actually, I DID keep my mouth shut. I explained myself, but I didn’t EAT]
One of my favorite “excuses” for not eating at someone’s celebration is to claim “Dr.’s orders”. Few argue with that....

Knowing When to Keep Your Mouth SHUT

On meeting friends whose oldest child is engaged, I tell them: “You know how to be a good Mother-in-Law: Shut your mouth and open your purse.” Well, I had to practice what I preached today, through no fault of my married children, nor their spouses. One o my married children had several items on my roof, and hired some Arabs today to take the stuff down. I was out of the house when this happened, and was not able to help oversee things.
Put simply, the hired workers were very careless, breaking several objects, including knocking my (very) precious (to me) digital picture frame to the floor. When I came home, and saw the frame in pieces on the floor, I quickly decided not to tell the young couple. THEY certainly don’t have the money to pay for it, so mentioning it would only cause the spouse of my child aggravation. So I shut up.

My reward was that I took the pieces aside, and discovered that they had come apart, but had not broken. So the frame is now working, and my married couple didn’t have the aggravation that I could have so easily caused.

Sorry there was no post today.

Just to give you an idea of how buy I was,my step-count for today was 17,361 which is the highest I have ever had in the half-year since I joined walker tracker. There should bw a post tomarrow (early Monday)

The Simple “Mentch”....and Inclusion in the Community

I was with Ricki the other day at the dentist, in an out-patient clinic of one of the Tel Aviv hospitals. This hospital, which used to be very easy to reach by bus is now a real “pain in the neck” to reach, involving two bus rides minimum.
When we entered the clinic, I saw one other parent, waiting while her young child was being treated under general anesthetic. She was a fellow “frummie” (orthodox religious Jew), and she flashed us a smile, but I got the feeling that she would have flashed a radiant face to anyone entering. In fact, I suspected that she had definitely grinned when she saw Ricki.
Within minutes, I was sure of it. The friendly lady started trying to have a conversation with my daughter. Ricki responded with a growl and a mumbled “leave me alone”. It didn’t phase this lady. She continued asking Ricki about herself, talking about her child, , what was going on in the clinic, all in an informative yet casual way. She won Ricki over within minutes, and had her hanging on the woman’s every word. She spoke to her in a mature way, not condescending at all.
At one point she asked Ricki if she knew “Miss XYZ”, who is a 25-year old woman with Down syndrome in our community. Ricki doesn’t know this woman, but apparently the woman in the clinic (who was also about 25) does. I don’t know how, but the results were clear: she was not afraid of Ricki, and communicated casually yet clearly to her. This shows so strongly the case for inclusion in schools and the community. When people get to know teens and adults with Down syndrome (because these teens and adults are NOT buried away in a “special” environment 24 hours a day), they learn to react to them as PEOPLE, without fear... with plain common sense. And that carries over to their interactions with others with disabilities.
Now I suspect that this lady is a bit more of a “mentch” ((good person) than most are. I don’t know. But I do know that I would like to see more of people like that!

AAUGH!!!!

I know that it is minor, but I have lost HOURS of time today on various things in my computer that are not working properly. Half of the internet sites I want to see are not displaying (including walker tracker), the "Blogs I am following" list is suddenly empty, and more. GRUMP!