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Post by kimnz on Mar 31, 2005 21:08:13 GMT -5
This is suppossed to be a photo. What happened Momofrussel? I have done something wrong obviously. Kim nz
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Post by kimnz on Mar 31, 2005 1:37:49 GMT -5
Oh Kelly, what a cute tummy and the Mom and Dad aren't too bad either!
Kim nz
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Post by kimnz on Mar 30, 2005 23:11:06 GMT -5
I'm the same Kelly, I can't get it to do it either.
Kim nz
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Post by kimnz on Mar 25, 2005 22:34:51 GMT -5
I still can't get my photo to post on the BB. I have tried using the photo site recommended by "mom of Russel" but it just won't work. I'll wait until David (husband) comes home and see if he can do it. I have registered but I don't get the files come up like I'm supposed to.
Kimnz
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Post by kimnz on Mar 26, 2005 0:23:05 GMT -5
CONGRATULATIONS CARTER!!
I noticed than when my son walked it opened up a whole new world of learning and I imagine it will be the same for Carter. They become REALLY interested in climbing and not so interested in sitting still!
Kim nz
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Post by kimnz on Feb 16, 2005 13:47:24 GMT -5
Hi Rich and everyone else on the site,
just wanted you to know Rich that you never gave me the impression that you were having to "make a decision" with your child. I think most of us were probably referring to what the Drs say or have said. I know for me we were told "you have decisions to make" when in fact there was no decision to make.
I also do not go to Church but I still am a Christian and have a strong faith in God and Jesus. We found out VERY early that Jordan has Down syndrome, I was still in hospital in the first trimester with illness.
My friend sent me an encouraging card. For me in psalm 139 is says that "God formed every part of me". When Jordan grows up and can read he will discover that it DOESN'T say "God formed every part of me....except if you have an extra chromosome" or "God made a mistake on this one, you were supposed to only get 46".
Our little boy is loved and cherished. During the weekend just passed my husband and two of my children were in our van enjoying a special day at the beach. Someone came over the centre line and head straight to David (my husband) for a full on head on collision. The other driver was speeding on the open road. If David at the last (and I meant last split of a second) was not able to turn the van at the fraction that he did....my family would not have been here today and I would have buried them yesterday. As it was the driver ploughed into the side of our van splitting it along the side, spinning it rolling it. Our van was a write off. The driver of the other vehicle had skid marks on our side of the road for approx. 50 metres. It was a combined speed of over 180 kms (my husband David sticking to the speed limit I might add).
Our family (I was at home) walked out of this accident with only bruising (Samantha's friend was knocked out but still unscathed). The people who came to attend could not believe that they came out of this. I know for a fact God holds us all in the palm of his hand and our times are His times. That goes for my son Jordan, he is here because God wants him to be here and was born to us because that was part of the eternal plan.
.....As a follow on from the accident. The other driver apparently was on drugs, he was driving a car called a ford thunberbird (obviously to protect himself at times like this) that was not registered or warranted, had no number plates no front or back windows and no lights. In New Zealand here this man will probably get off with a fine (which he will probably get to pay back at about $10 a week) and possibly loss of licence and may be not even that. I very much doubt that we will even get our own costs covered.
If David had not turned in that split second it would have been a full on head on collision, pushing David and Jordan back into the back seat. I know it is not worth thinking about. But having a brush with death this close....you just can't help think of what could have been.
Jordan goes to hospital for a big operation in about 2 weeks time, we now do not have a van to take him all the way to Auckland in nor a van to take him to Auckland for a special weekend that was planned for about a weeks time. We also had to go into a big credit card expense just to get our van ready for the trip...that's also how come David had taken our children to the beach, our van was fixed up well.
Despite what this accident has done and the trauma caused, God is faithful. He will see to our needs....there will be a road in this wilderness. I just KNOW that things will work out.
Kim NZ Mum to Jordan aged six and half who is going into Starship children's hospital for full removal of his rectum and part of his sigmoid colon in about 2 weeks time for Hirschsprungs disease.
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Post by kimnz on Feb 17, 2005 13:48:37 GMT -5
That is so beautiful CBean, just about makes me cry "perfect just perfect" I've got a tear in my eye just reading it. I'm going to remember those words.
I know when Jordan walks down the street, people smile at him and usand I'm not even sure why. But it sure is good that our children bring pleasure to people around them.
Kim
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Post by kimnz on Feb 16, 2005 1:29:15 GMT -5
Hi CC,
all I can say is...... how many grandparents care full time for their grandchildren and take on guardianship of their grandchildren...are they too old?
There are heaps of grandparents in the 49 to 55 age group and younger who I am sure are being parents to their adopted grandchildren.
I am sure if they can do it then so can you. But I guess it is something that you have to know is really the right thing to do for all of you concerned.
Kim
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Post by kimnz on Feb 11, 2005 1:16:08 GMT -5
Hi Rich, I am Kim from New Zealand. I too was offered options "you have descisons to make" were our words from the specialist. I can truthfully say that my fear and trepidation were unfounded, we found our early in our pregnancy (about 11 weeks or so and later confirmed at about 15 weeks with an amniocentesis) that Jordan (now 6 yrs) had Down syndrome and I was awfully afraid. I armed myself with information and good books. I would like to share with you three websites (there is lots of information out there but these three are very very good) that are comprehensive. If you have any problems following them write to them through the contact email. I love the helps and "real people" that are offered on this special site uno mas site but some websites are also helpful. The first is www.down-syndrome.info you can go to "about down syndrome". The second is a sister site and is to do with speech etc and helping new babies (yes new little ones) onwards. www.downsed.orgThe final one is www.altonweb.com and is very comprehensive but the information is incredible. I don't mean to over load you but when I found out about Jordan I wanted information because there wasn't a lot where I lived. I think the most important thing in the world is to remember that your little one is just the same baby you were going to always get....he/she just got an extra chromosome. First a formost a baby to love and cherish and who will love and cherish you. Thinking of your both. From Kim New Zealand
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Post by kimnz on Feb 10, 2005 15:45:29 GMT -5
Hi there,
well I am not sure what words you use over there for passing wind, flatulance, bad smells, pop offs etc but over here in New Zealand the slang word is "fart".
When Jordan was at kindy (preschool) he all of a sudden became very interested in sounds and was learnig to say some words. One little boy passed some wind rather loudly and Jordan yelled out (while it was nice and quiet) " DART A DART !!!". I'm not sure if everyone else new was "a dart" was but I sure knew he was meaning "a fart". I could hardly contain myself with laughter, I think I was shaking.
At the ripe old age of six, Jordan now says "pardon me" to darts and burps.
Kim nz
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Post by kimnz on Feb 6, 2005 22:49:58 GMT -5
I am sorry to hear of your brothers passing away and also the grief that your family is going through, your brother was a precious family member to you all. My prayer is with you.
Thinking of you,
Kim nz
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Post by kimnz on Feb 4, 2005 3:26:17 GMT -5
HI there,
I think you are very brave CC!! I think I would be too scared to do that.... but 12 years is such a long time to take medications for....didn't they do some tests of sorts before taking letting him off his pills or heart medication reduction? We have'nt had a heart problem so I am not up on heart medications.
Antibiotics certainly make kids irritable and I believe can also make you quite depressed feeling. Just imagine what it must feel like being on them so often.
The other medication that I have noticed makes kids hyperactive and irritable after a while is paracetamol...you you have it over there?"
Kim
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Post by kimnz on Feb 1, 2005 23:36:03 GMT -5
WHOOPS, I am still trying to get colour to work, where my above message says TEXT (in green) it is suppossed to give a web site, the site is www.greenhousepub.com and is an American site. I thought I was typing the website in green. Kim nz
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Post by kimnz on Feb 1, 2005 23:33:51 GMT -5
Thanks everyone for posting and also Barb and CC for the insights. Thanks also to everyone for encouraging me to post.
I sure feel at home here and thank you all for making me feel welcome. It is just so nice knowing that people care about what concerns each one of us moving down this road together. I keep checking out everyone's postings on the site. I am a little better about navigating it now.
The book about classroom language skills was passed on to our teacher last year....I do not know if she read it or not but it was found in the cupboar (oh dear). We do not get ST like you get it over there, Jordan does not get one on one just some suggestions and it sure isn't every week. A bit sad. However like I say it isn't like that for other parts of New Zealand.
I also agree that if the child needs augmentative communication then that is the way to go. I have two booklets that are for children with special needs they are by Joan Green TEXT(American) they are interactive reading books and use velcro stickers and words as well as sentences. There are lots of books to buy from her as well as communication cards. Have you seen them?? I particularly like the ones about "how I feel".
Kim nz
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Post by kimnz on Feb 1, 2005 18:39:41 GMT -5
Hi Jessie (mom to Jason),
I am amazed that someone would say your son will not progress any more in his speech. My understanding is, is that ST is basically life long (meaning people continue to devleop) even if we are doing it at home with our child.
I have also heard those comments about "how will their speech improve if they are signing all the time". However for a lot of children with Down syndrome signing is just a bridge until speech sets in and even then children still use it if people just can't understand them. I have heard that they drop it spontaneously once they have the words. I have also heard that for better speech it is better to continue on signing even though the child can say the word!!
We will always get behaviour problems when there is the frustration of not being understood...just imagine how we ourselves would cope. Just think what it would be like going to France and not being able to say the words...how would we communicate?? I reckon I would be saying the words I knew and signing or miming the rest.... and getting awfully frustrated if it was something very important...like going to the loo. Which is just what our children do.
For us with Jordan having been at school one year (I didn't start him at school until later than other children as I wanted him to have more free play and socialise with other children at preschool) I have found a few difficulties as the teacher and aide did not know Makaton signing.
We used visual strategies to see how it would go... but the teacher also did not want her class distrupted so that again posed another problem. In the mean time Jordan acted up when he got frustrated. Eventually they went back to a visual time table and a social book.
Jordan's speech was understood at times and other times it wasn't. One very good thing for Jordan was that he was a great communicator and so he would act and mime as well as talk. He is also very good at following instructions so this made things easier for him. One day the teacher tried to punish him by sending him to the pricipal for hurting another child, is cut my heart as I knew that if they followed stratagies they wouldn't have a lot of these problems.
It seemed that what I said as a parent was not listened to in the same way that it was if the message came from a "professional" ......so I started to work on the professionals and told them that if the info. comes from them then we have a much better chance of good outcomes in the school (generally our professional people don't appear to be quite so highly qualified as yours in the States are). If the school had listened to me they would have found that many of our little problems need not have happened. However teachers (sorry to all you teachers on the site) sometimes have a problem if parents know more about things than them so I always try to be very diplomatic!
The deputy principal came to me and said to me that it didn't work disciplining Jordan in the way they did (yeah ...you should have listened to me). I agreed with her and told her it didn't. I told her that they had to deal with the problem there and then and then just leave it. They had to anticipate a problem happening and nip it in the bud before it even eventuated, to do this they had to know him and judge his actions etc as you can see if Jordan is angry or frustrated....it is written all over his face.
Also there is always a reason for Jordan to get to the stage of lashing out eg pushing another child.....you can almost always trace it to the frustration of not be able to talk. Therefore it is important to always have in place some method of communicating, whether is be an aide who is saying "Jordan you look upset are you angry??" He loves having his feeling acknowledged and this will calm him down straight away or for children who can't say some words may be some kind of book or signing.
You know, these strategies are so simple that I find it difficult to understand why people don't follow them.
We found that we had a good final term last year and Jordan is having his second day at school today....he had a good day yesterday. I noticed over the 6 week holiday period that Jordan's speech picked up and I am presuming it is because we were able to spend normal time just repeating his words, sounding out some sounds etc. This year I am going to speak to the teacher and ask if the aide can spend more time doing this.
Jordan talks in two to four word sentences but as I said keeps persevering until people can work out what he is trying to say if they can't at first understand him.
Kids are kids and I know that some of our typically developing children (I'm not so fond of that word NORMAL) can also set something up in order to get a reaction, or a child into trouble not very nice I know. Our kids can't always say "hey he pushed in line before me"....however they can give a big shove (and get into trouble for it)!! That's why is it important that that side has her eyes wide open.
WOW that was big long winded! Sorry about that.
Kim NZ
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