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Post by poojamom on Feb 24, 2006 13:34:25 GMT -5
Radonna, I would say each child is different in their abilities, irrespective of their disabilities. We cannot compare the outcome of any 2 individuals based on the envirnoment or level of disability or family. I guess that's why Individualized education plan and more recently Person centred Plan works very well.Having just said that!
Personally, i have seen what a big difference all of these put together, like EI, family love and support and even awarness of the disability makes to a child. Iam talking about the children who have disabilities from back home, 10-11 yrs ago. well! I just compared it with Pooja , Didn't I!!!
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Post by theresaolohan on Feb 24, 2006 14:17:46 GMT -5
hi early intervention in Ireland is a real hit and a miss, you will get referred to the service and then the theripies are supposed to begin you might get a block of six speech therapy sessions of 45 mins mabey once or twice a year the same applies to OT and Physio it really is the work i put in with the child that brought him on, plus we had a hometeacher programme from ds ireland for 2hours every two weeks, this i have to say was wonderfull., but if you had to rely on the state service here you would be left waiting and wondering about this great invention of Early Intervention. A lot of the work is down to the family and that is what i found helped my child. So Parent Intervention is a powerfull tool
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Post by Radonna on Feb 24, 2006 22:13:49 GMT -5
The post that I have been waiting for wound up under the marriage and family topic
____________________________________________-
I found out that Sarah would have Ds when I was pregnant. I read and read about how much more our kids are capable of achieving now due to the wonderful early intervention programs. Once Sarah started in our school districts program at five weeks, I was less than impressed. From what I have heard from other parents of children with Ds, our program has been basically the same for the past 20 years. It was really trail blazing 20 years ago.
The only difference that I can see is that we are given more hope. We are told to have higher expectations. In the area I live in, inclusive education for children with Ds is still a huge fight. Kids with autism are included more often but still not without a strong advocate.
I still believe that the parents are the most responsible for a child's success. A great parent 20 years ago probably is better than a mediocre parent whose child has a ton of cutting edge therapists.
Chris ____________________________________________
Now I want to talk about the REAL trail blazing and the expectation part of raising a child with a disability.
The fight for the disabled has never been what is available out there TO teach them but rather WHO believes that they are worth it.
My grandfather was friends with a boy for years went to his house to play after school everyday. Spend nights at his house and one day he followed his friend into a back room and there on the bed was a little girl with Down syndrome. He never knew his friend even had a sister. That was in the 30's. By the 1950's more and more families were rejecting the Doctors advice to put their babies in institutions the abuse of those places had become more and more public and most people had this new theory to take their children home and raise them as long as they could on their own. In the 1960's a wonderful woman Eunice Kennedy Shriver came on the scene and begin fighting for acceptance for people with disabilities and in 1968 started the Special Olympics. This woman was a trail blazer. I hang her picture up in my living room because this woman that never knew my son done him a great favor. She put images of beautiful disabled people in the hearts and minds of America and made them move onto the social consciousness.
As far as interventions and therapy that is out there. None of it is really new. Even ABA was developed by B.F. Skinner a LONG time ago and it is the "new hot thing" for autism.
Sometimes there can be new uses for old idea's but rewriting curriculum for the disabled is like re inventing the wheel. All that information is out there and has been out there. The challenge is how we use it for the future.
Where are we taking this train so to speak??
For me it feels like I am being kicked off. My son is proof that the most intense therapies sometimes fail. He is the reminder of everything that can go wrong and a lot of the people on this "new system" would rather not see him or be aware of him. Everyone is always sure to have me define that he does have duel diagnosis because it couldn't be just Down syndrome that causes all his delays.
There is this attitude telling you the more you put in the more you are going to get out and it puts a lot of guilt and doubt on parents like me that has children that aren't the miracles.
Because when I feel Kaden I FEEL miracles. My child is very delayed and I feel like I am the luckiest Mom in the world. Kaden is my simplifier. He is my peace and my heart and I hate that he is what so many people are terrified that their child might be without all this intense therapy.
We never want to lower our expectations for our children. You always shoot for the stars but when there is a child like Kaden he shouldn't be seen as when God and Nature and all the man made therapy available failed. He should have his OWN glory and his OWN success story because every child is precious and special and worthy of our attention and respect. So there wont be any books written about Kaden. So he wont be on the front of any NDSS newsletters but for the people that know him and love him he has forever changed the way they see disabilities. I mean if HE is about as delayed as you can get and he is as cute and as funny and as cuddly and if our family is as happy as we are then there must be SOMETHING some one is missing since we are living people's NIGHTMARE and enjoying every minute of it.
I'll be off my cough syrup in three days so I hope I don't offend too many people before then. This is just been on my mind for a few days and I wanted to get it out,
That our kids can't all be put in little boxes and there might not always be simply answers to what is best for them that is where Parents come in and a Parents love for their child can change EVERYTHING.
The attitude that I would most like to escape being the parent of a child with a disability is the ones that tell me what Kaden SHOULD be. Because I see what he IS and I love who he is from his double crowns and messy hair to his long toenails that he hates to have cut.
Kaden's story is devoid of miracles and successes and all that other stuff but to me he is no less of all those things. Him being my child is the biggest gift Life could have ever given me. I would not change a hair on his fuzzy head. Radonna
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Post by meghans_mom on Feb 24, 2006 22:52:31 GMT -5
""Kaden's story is devoid of miracles and successes and all that other stuff but to me he is no less of all those things. Him being my child is the biggest gift Life could have ever given me. I would not change a hair on his fuzzy head. "" Radonna - not to sound sappy or anything, but I don't think Kaden's story is devoid of miracles or anything else because he has you as his mom and a wonderful family who loves him! I don't know if you're interested but I already typed the post so here goes: Radonna - even though MM is 5, I will share our experiences. I do think that here on Long Island we are lucky in that we get some pretty decent therapy hours. I *DO* totally agree that the parent or caregiver needs to follow through with what is shown, that therapy alone is not enough. But I also think that all our children are different and if you took 50 or 100 of our kids here - started them at the same age with the same therapy, etc - they all wouldn't progress at the same pace - or even end up all on the same 'level of ability' (and i don't mean that in a bad way)...because each of our children has his own strengths and weaknesses.
anyways - Meghan was eval'd at 5 or 6 weeks old - started therapy by 8 weeks. At first we had OT, PT and a special ed teacher. I think 5 hours a week total. We didn't get speech (because she didn't "NEED" it...it was a shortage of SLTs i found out later) until about a year. At one point we were receiving 2 ST, 2OT, 2PT and one special ed session weekly - each session being an hour. at about 19-21 months we added mommy & me, and eventually moved one or 2 therapies into the school where she went to mommy & me. the school based therapies dropped down to 1/2 hr but home stayed an hour. she started preschool (solely a school for kids w/ DS) shortly after her 2nd b-day. She is still there - her last year in preschool - now full time in an integrated classroom. She is only allowed to receive 4 therapies a week in this setting (at school) we get 1 PT, 1 OT, 2 ST and one outside speech. I do attribute some of her strides to her excellent therapists, these people REALLY know kids w/ DS because that's all they've worked with for the 40 years they've been around - and I think that makes a difference (or atleast it seems to) because they know what generally works better, and what issues our kids face and what the general strengths and weaknesses are. ...but I also know that MM didn't have as many health issues as some kids face - heart wise, etc, and didn't have to overcome those hurdles....which I think can delay some kids, because they get tired more easily, or are recouping from surgery, etc - I'm talking about EI aged kids - sorry if I went on too long...very interesting thread! laurie
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Post by chasemansmom on Feb 25, 2006 9:09:00 GMT -5
oppps, sorry, I didnt realize this was here and I just poured my heart..I mean all of this kind of info out on the post about marriage...I would cut and paste it here but it's got a bit of emoition in it so we'll just leave it where it lays, thansk Radonna for posting this thread and if i wasnt so emotional i would of seen this before I posted at the other thread, LOLOL, I am such a dork. hugs, Robin
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Post by chasemansmom on Feb 25, 2006 9:29:15 GMT -5
Hmmmmm, I just read all the posts, interesting to see that the old prehistoric folks had the same interventions we had and have now for the kids, some just done a bit differently but basically all the same. I guess that "new system" is really like old music and clothes, just revamped every ten years hmmmmm. And as for certain kids doing well and others not so well, I truley believe it is all in the disability and no more, no less. hugs you guys, Robin (the middle aged mom)
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Post by AnnieC on Feb 25, 2006 10:42:25 GMT -5
I posted this in the marriage thread, but I think it has more relevance here!
I think the only difference between therapies today & 20 years ago is that it has increased awareness of DS, which is a great thing. But, I do have an issue with today's therapies or the "new system" .....
I truly believe all of our children are their own individuals & they develop at their own rate...irregardless of therapies. I believe therapies are wonderful, but they are the enemy as well. What I mean is, instead of enjoying your child, you are constantly trying to "measure up", do the right thing, etc etc. & its exhausting & frustrasting. I believe it is false hope as well. And maybe this is good, because when we first have our child, we are terrified & just want to control the situation, so we dive right in, as we should. But, if it so happens that our child just doesn't measure up by therapy standards, it is awful. You feel like a failure & I hated that. Because, darnit I AM a good mom.
Raven had every therapy under the sun...she started at 4 weeks old!!! We did school, school therapy, private therapy...everything! Well, Raven still progressed at her own pace. She may of sat up unsupported at 7 months, but she didn't crawl til she was 2, didn't walk til she was 6 & just started to feed herself with a spoon. I am so proud of her I could burst. But, it was very hard for a long time.....I felt I was failing her & I truly believe it was all the emphasis on the therapies that contributed. We are so vulnerable as new parents that I think we would believe just about anything & try anything to give our child what they need. Of course we would, we are wonderful parents who love our children. But, there is a price....our sanity!! No, seriously, I just wanted to say that I believe us, as parents, offer the most: the most support, acceptance, & love that our children need, & that is why our children thrive.
I hope that I don't offend anyone, I am just offering my perspective of what I experienced. I am probably in the minority, but I just felt the need to say it. Thanks for listening
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Post by AnnieC on Feb 25, 2006 10:49:02 GMT -5
Radonna....
I certainly understand what you are saying. I think we get caught up in all these therapies & they are NO guarantee that our child will excel. I use that term loosely, because I think all our children excel, but in their own potentials. I think it is so unfair to say if you do early intervention then look how high our children will go. I think the children that go high---in society's standards---would have, irregardless of therapy.
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Post by Jodi on Feb 25, 2006 14:29:04 GMT -5
Radonna ~
I absolutely LOVED the honesty and wisdom of your last post!!!
In the early days (I think I may be somewhere in the early middle of the old and new LOL - Ryan is 7) I found hope in those who implied that Ryan would be "cured" with enough therapy. Poor kid!! Oh, this went for inclusion too - if your kid was fully included, that meant he must be mildly delayed... SHOOT! I had Ryan fully included for 2 years in preschool and 2 years in kinder and that really screwed him up! And yes, -- I -- feel guilty for that. Isn't that what I was supposed to do?
Someone sent me an email that said "I have entered the snapdragon phase of my life... Half of me has snapped and the other half is draggin'" So I feel as if I have snapped (it's been a very slow snap LOL) over this whole darn therapy, inclusion, future dreams crud. Just as you find miracles in who exactly Kaden is, I am learning that I've been an idiot to focus so much on therapy... so much so that I have been missing out on the joys of my kid.
It was important to me when I learned about Ryan having DS during my pregnancy that people would accept Ryan. What I didn't realize is that I didn't even accept him for who he was. I figured I had to get him as much therapy as possible then he would be good enough for other people. YIKES - what a bad mom, huh!! But I have learned that what other people think isn't of great importance anymore. Enjoying Ryan and all he is today. Ryan is 7 - can read a little but still doesn't initiate going potty. He can play xbox better than me, but can't answer many simple yes or no question. So what - I'm slowing the pace down now... I'm going to keep getting services for him but I'm NOT going to FREAK OUT anymore over where he is at or where he should be or what he should be doing.
Thanks for posting your thoughts on this.
Jodi
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Post by Chris on Feb 25, 2006 16:01:14 GMT -5
Radonna,
I loved your post. I kept saying "AMEN"!
I watched a program on TLC a couple of weeks ago about children who had been severely abused or neglected. One child had been totally left in a room by herself. She was put in a cage at night and strapped to a toilet during the day. Child Protective Services found her when she was 13. Although this girl was born without any disabilities, she was like a newborn at 13. Her brain hadn't developed properly because she had never been spoken to, didn't watch tv, or anything. She wasn't able to learn how to speak because of inadequate brain development.
My point of that story is that years ago when people locked their children with Ds in a bedroom or put them in an intitution, they were very neglected like the 13 year old in the TLC program. They weren't given the type of stimulation that most typical children experience. When people stopped putting them in institutions, took them home, loved them and started treating them like any other child, they made unbelievable strides! This is also about the same time when early intervention was introduced. Sooooo.......how much progress has been made for people with Ds because of early intervention and therapy and how much has been made because they are now treated like any other child?
I have met several adults in their early 30's at the Arc. I think they are doing really well. All three of them are holding down jobs. I was disappointed to find that all three of them live with their parents but these are very active young men. It warms my heart every time I see them.
When my older daughter was a baby, I didn't overwhelm her with intensive educational experiences. She got to stay at home and play until she was 4. She is now 15 and recently took a national test where she scored in the 97 percentile in reading. This child wasn't able to read a word until she was SEVEN years old. I don't think she would have learned to read any earlier if we had used some intensive reading program at an early age. She learned to read when she was developmentally able to. She took longer than most kids and I was very worried. Now I just wish I could read as well as she does!
I wish I hadn't pushed Sarah so hard as a baby. I wish we had played and relaxed more. We have enjoyed our little miracle child. We have taken time to appreciate the joy and love she shares with so many. We know we are so blessed to have her in our family.
Chris
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Post by Radonna on Feb 26, 2006 16:26:39 GMT -5
Thank you for all that responded. The things you have tried for your children is so amazing!!!
If this posts does anything to help just one person feel a little less alone then it has done what I intended it to do. We all celebrate the successes!! We rejoice in the accomplishments of our beautiful babies and we look to the future with so much hope and determination the way that it should be.
When Kaden was born I threw myself into finding the newest therapies. I fought to get his insurance to purchase light boxes so that he could play with his toys on a lighted table. I spend so much money on bright beginnings toys for the visually impaired and I did everything in my power to help him achieve. accepting that there was not this magic key that would unlock my child to me was the hardest thing I ever did. As long as I believed SOMEONE SOMEWHERE had the answers then all I needed was to find them.
There is no magic key to Kaden. He is the beautiful boy he has always been and over the years the only thing that has ever changed is the way that I perceive him. I use to fight so hard because that is what I was suppose to do.
Jodi thank you so much for what you posted I know you get what I am saying
I do feel worried about being misunderstood but to me saying this is so much more important than NOT saying it.
Out of all the posts a common theme is I WISH I would have just appreciated my baby more.
Being a parent to ANY child you can get caught up in your OWN dreams for that child that you don't take into account a more holistic view of that child's development. That is why it is so important to SEE your child for their own unique talents and abilities and make their IEP's and IFSP's match those things.
A child that does not ever progress to what we would see as a success can have a SUCCESSFUL IEP as long as that child is happy and well adjusted and doing what makes him or her happy. You do not have to constantly try to fit your child into this box called normal.
My Kaden doesn't fit and I bristle okay I do more than bristle I get darned mad when I feel that someone is telling me this is what your child has to be to measure up. I sometimes feel like I should stay invisible. So that my family and my life doesn't discourage other families, but that Mommy in me the one that has fought for Kaden since the day he was born is saying To let Kaden's little light shine. That there are more children that just like Kaden that are being missed by this new system. There are everyday quite little miracles that wont knock any bodies socks off but are begging for validation.
So this is for you. The invisible people that need to know You aren't alone.
Radonna
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Post by AnnieM on Feb 26, 2006 17:38:30 GMT -5
Radonna, OMG those post have brought tears to my eyes! And the last post says it ALL! Thank you soo much for putting my thoughts into words. I could never do it as elquently as you! Hugs & Thanks !! Annie
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Post by chasesmom on Feb 26, 2006 18:10:33 GMT -5
-------->My Kaden doesn't fit and I bristle okay I do more than bristle I get darned mad when I feel that someone is telling me this is what your child has to be to measure up. I sometimes feel like I should stay invisible. So that my family and my life doesn't discourage other families, but that Mommy in me the one that has fought for Kaden since the day he was born is saying To let Kaden's little light shine. That there are more children that just like Kaden that are being missed by this new system. There are everyday quite little miracles that wont knock any bodies socks off but are begging for validation.
So this is for you. The invisible people that need to know You aren't alone. <------------
Radonna"
Hey girl, you said everything in that paragraph that I have felt and tried to say in everyone of these posts.... you rock Radonna, and you made my heart sing lady! HUGE HUGE HUGE (HUGS) to you girlfriend! Robin
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Post by Radonna on Feb 26, 2006 19:26:15 GMT -5
Awww Robin and Annie, Lets all gather round the fire and sing Kum ba ya and roast IEP's! I am having a moment; I love you guys.
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Post by Kristen on Feb 26, 2006 19:48:46 GMT -5
Well...Carter did not have "therapy" for the first year of his life. What he has was his drill sargent mother :lol Though he qualified through dx, he did not qualify through % delayed until he was 1, and that was mostly the PT, then the other things piggybacked on. I did take him 2x a month from 9 months on to have his eating looked at to make sure he was chewing effectively and using his tongue right. I had books, online info, charts of where he was supposed to be and doing what and I worked with him everyday. I had flashcards, books, textured toys, every anything that could possibly help him and boy, we WORKED...and he did wonderfully. For the life of me, I could not get him to stand and bend his knees, that is where the problem with not 4 point crawling/walking came in. When he turned 1 we started with weekly therapies, 2xPT, 1xDT, 1xST and 1xOT a week. I backed off some as his life was becoming about having DS. Instead he had 1 therapy a day and 1 outing a day. We went everywhere together and I talked to him nonstop about what was going on, what we saw, let him touch everything, look at it, take it all in. I miss those days when it was just me and my guy. Over the next 2 years we switched therapists a few times. We tried treadmills and jungle gyms and walkers and vitamins and a chirporactor and a holistic healer the redirected his energies andbraces and I made him things to help him crawl "right". He started group 2x a week when he was 18 months old to get used to other kids and a more "classroom" setting. This, I think, helped IMMENSELY with his transition to preschool and his cognition in a group vs. one on one setting. We have also had a very supportive setting at school for him, which is great. They believe in inclusion when possible, so we don't have to fight tooth and nail, which is another really great help because they believe in it. He is a remarkable little guy, what can I say. He took it all in stride and is doing great. We work with him constantly in little ways worked into our everyday life. If I could just get him to TALK we would be set!
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