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Post by CC on Feb 26, 2006 23:51:37 GMT -5
Kristen, with all due respect you are the one that posted "I was hoping to OVERALL convey is that this is the first generation being raised with the "new system" Hmmm many have asked if you could share what you meant by that and from your post above I see nothing that is new. Could you help us out here and explain what you meant, PLEASE CC
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Post by AnnieM on Feb 27, 2006 10:38:09 GMT -5
I agree with CC. What is so "new generation"and "new system" about a child receiving therapy and a mother who works with their child ,and trying some "new age" things? That has been done for YEARS, and YEARS. I have done and still do all that with my son, and he struggles. It's not safe to assume( not implying you are however) that a child who doesn't do well is because the parents don't work with them or they haven't received therapies. You're child is going to be who they are period.
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Post by Kristen on Feb 27, 2006 14:02:10 GMT -5
True, however, that being said, there in more research, more innovations and additional insight now versus even when Carter was a baby. That being said, 10, 15, 20 years ago...Talk about a difference? It's huge. Considering that institutionalization was the norm and early intervention was *years* from being instituted in most states, there most certainly is a difference now. There was no love and learning, no online parent forums for fast info exchanges, no baby bumblebee, few compared to the now many books on gross and fine motor skills in children with DS, no signing times, no vitamin mixes or alternative therapies that were readily accessible to parents who chose to use them...the list goes on. If this was 20 years ago, everything I used as a resource had either not been invented yet or there was no online store to go quickly research and purchase it at!
It was our choice to keep close tabs on Carter at the beginning and bring him for monthly or every other month evaluations by developmental professionals. We were in close contact with them, recieved numerous resources from him and did it alone because 1. he was not in danger of regression due to physical ailment 2. *I* wanted to do it myself at the beginning as part of my learning and understanding of my child and what he could do. It was just me and Carter, I stayed home with him and this was part of raising him so I did it, and most importantly 3. He was on track for quite some time and I *could* do it alone without harming his development. That was all our choice and I do not regret it for a minute. As I said before, I miss my time with my little man just me and him hanging out and "doing our thing." All that being said, everyone cannot do that and that is fine, too. I obviously have no magic bullet as Carter did not walk until he was almost 3 and many kids do it before! What I do have is a wealth of information and resources that I would not have had access to if this were even a decade before. I (so far) have a very supportive school system in which most of his teachers and therapists see Carter before they see a diagnosis. They believe in inclusion and in urging him to be his best.
We now have so much more than in the past...there are laws to protect our children and ensure their right to an education, adoption agencies specifically for the placement of special needs children that help keep them out of institutions and doctors who specialize in helping them. State of the art and improving everyday medicines and surgical procedured have FAR increased the life expectancy of an individual with Down syndrome. In the 80's it was a mere 25 years compared with 50+ just 20ish years later. That's huge! The host of health issues our kids are more suceptible to are more easily treated and less often lead to serious illness, long term hospitalization and death. Advances are made in staving off the dreaded dementia and Alzheimers longer and longer giving them a greater quality of life for longer periods of time. We have assisted speech devices, eye surgeries, miniscule hearing aides, music therapies and SO MUCH that were not even dreamed of when I was a child. If nothing else, we can see the long term benefits of the work put in on many fronts because they are living longer to tell us about it. To show us their learning is more life long than their typical peers and to demonstrate their capacity to have long and full lives. I don't know about you, but that is extremely significant to me!
You ask me how I can call this a "new system" and I ask you when you consider everything there is to support and assist children with all needs, how can you say it is the same? I do not have to need and use everything available to recognize it is out there helping children every day. Another newer innovation for special needs kids that is slowly but surely catching on - personal treatment of individuals! Oh I could go on forever! I do not need to change my child as Annie implied. What I need to do to be the best mother he can have is to know him better than anyone outisde of our family and recognize his strengths and weaknesses for what they are so I can help and advocate for him as effectively as possible. I work on building his self esteem just as hard as anything else. I want him to have a great life. I do not associate quality of life with level of ability, but I do associate lower quality with unrealized potential for personal greatness. Self esteem, pride and sense of accomplishment are things I want both of my children to have in tenfold. If Carter's biggest accomplishment is writing his name and adding one plus one, well darn it, that's going to be the best six letters and number "2" I ever saw and he's going to know it! A child is not necessarily "going to be who they are, period" They will be themselves, but you cannot realistically tell me that there is nothing in their environment that will make any difference. How can you consider all the resources and innovations at our fingertips and say it's all the same? Parents did it and most did a great job before, but many reinvented the wheel time and time again beacuse of a lack of widespread availablity. I do not know what I would have done if I had to essentially start from scratch with limited resources, knowledge and options available to me. I cannot for the life of me fathom how someone can say it is all the same!
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Post by AnnieM on Feb 27, 2006 21:03:47 GMT -5
First off Kristen I NEVER implied "I do not need to change my child as Annie implied" not sure where you got that from. You obviously grossly misunderstood something I wrote. If you would like me to clarify what I said that made you draw that conclusion let me know, I'd be happy to do so. I don't like words put in my mouth.
When I read your comment the 'new system" 'new generation" post I took from that, you meant children from your sons age and down ,were some "new generation" using some "new system"? However reading this new post it sounds like you are now talking ALL the way back to 40, 30 yrs ago. You can't be serious in thinking I don't view these HUGE changes in education, medical & technology advancements, resources and information and awareness over the last 40 years as massively significant? Please give me more credit than that! I figured that would be a given! And honestly I feel silly even having to explain that! I really must have misunderstood your "new system" new generation comment!
Now if you want to talk about the last 11 years, No I don't think anything so drastic has happened that would make me say"WOW I wish Mikey was a born in this new day and age instead of way back in 1995 ,the advancements from then to now are AMAZING!" Nope it's the same. And you don't have to agree which is fine, but keep in mind you didn't have a child with DS 11yrs ago so you have no idea what was going on then. But you didn't miss much since it's the same then as it is now.
I understand your passion behind what you are trying to say, but in your hurry to convince yourself that your situation is different, because things are so much better NOW. You really make it seem like what we went through for OUR children doesn't compare.
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Post by maryerickson on Feb 27, 2006 22:11:50 GMT -5
Wow-This is such a interesting subject and I just want to throw my 2 cents in. My daughter who has Down Syndrome is 15 years old and this is what I have seen.
-Her EI program was based on the works and years of research done by Val Dimetre and Pat Owen at the Child develpoement center in Washigton. We even had the good experience of attending many workshops where they taught us methods that are now published in her books todat(Teaching Math -Reading to children and aduts with DS) These awesome women started their work back in the 1970's and many centers use the model they develpoped today.
-Love and Learning- I got and used the same books and tapes and video that are available today when my daughter was 3 years old. The only difference-it was cheaper and I had to call the owner by phone to order and talk about teaching reading.
-Nutritional supplements-Yes-we had Hap Caps and other mega formulas. I saw Dixie Larence in San Diego when my daughter was 5 years old and learned about Nutiviene and paracitam. I choose not to use them.
- I took my daughter to cranial facial manipulations and to homopathic care providers. The same alternative therapies are still available to read and learn about. And some pretty scary ones too-like stem cell and plastic surgery.
-My daughter had threaputic horseback riding starting at age 4 and rode till she was 9 years old when her center lost funding and closed down. A new one never opened. - My daughter had free speech from the Lions Club. They raised funds to hire a st. They have since lost all community support.She attended a communication preschool staffed by 2 ST that has since closed.
- My daughter attended k-5 in Full inclusion from a district that had $$ and funding. California has had so many cuts that it has affected the quility of our programs today. - My daughter had life saving heart surgery at 6 months of age. We were asked if we would consent to a experimental treatment of a new type of microscopic tool that could improve the quiality of surgeries. We said yes-we wanted things to be better for future children. They use that tool today in heart surgeries.
- We did not have the internet but we had many publications that we got in the mail and we attended many workshops and conferences where we connected and made pen pals. We used snail mail.We watched LIFE GOES ON and discussed it with our friends and families. We went to media events that featured Chris Burke.
- We used hip helpers,orthodic inserts ,debated over johnny jump ups and walkers. We bought the first leap frog letter and phonic toys that came out.We bought music tapes and sesame street signing books. We endured hours of Barney! We made our own support chairs out of card board boxes-boy do I wish we would have had the new Bumbo seat!
I hope that advancements are being made and I look forward to a great future. I see more chances for my daughter to attend college, get married and have meaniful relationships. I see more advances in job training and placement. But from 10-15 years ago in the area of EI I do not see much change.
Mary
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Post by chasesmom on Feb 28, 2006 16:06:53 GMT -5
Mary and Annie, thank you for adding the exact two cents I was going to add. Chase will be 14 in July and we had everything that Kristen described in her post...everything, including person centered planning. None of this is new, there has been no great new inventions in years and years and I have the same sensory touch books for my grandson I bought for Chase as well as the same educational books. Love and learning was around, my son grew up with the gross motor and fine motor books for children with DS as well as the teaching your child with DS to read book. AND he was reading at age four as was Susan's Emily, not bad for being born in the dark ages with no new system huh? But I am tired of this thread and being insulted. My child is smart, even if he was born in the prehistoric ages as Kristen suggests. I take offense at being told our children will not be as smart as the children being born in the last few years and I feel no more need to defend my son's abilities against her incorrect asumptions. We all know what happens when you assume things. BTW.... when Chase was born in 1992, the life expectations for a person with DS was 55, guess they havent gone up too much since the dark ages huh? I didnt come back here after all this time to argue so I have had my last say on this subject and I am done reading this thread. Robin, mom from the dark ages I guess
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