I am in Michelle's boat *waving* Hi Michelle! They picked up nothing with Carter and I got talked into the AFP, which was totally negative and after the level 2 and non-stress test after my own condition led to no amniotic fluid and the big freak out still revealed nothing except a baby that needed to come out NOW, not later. I had nothing with Syd, but around 30 weeks I started freaking out beacuse no one ever explained the no fluid to my satisfaction and she was not a very active baby all along, so I would start worrying and poking her and not sleeping at night...I finally asked for another u/s to tell me there was fluid in there and ease my mind. The doc, of course, wrote it up and looking for DS markers, so it took forever and I had to tell the tech what two things were they had to go look back for (clearer head and neck shots). I said ah, he just wants a shot to see if there is a redundant nauchal fold and bracheocephaly. She goes what? I said extra skin on the neck and flat back of the head. Tell him don't bother, our son has DS and he never had either of those things and no one could tell till he was born - I just wanted to make sure she was still floating in there!
Hey, Jeff, you go get his by the truck that is hearing "you baby had Down syndrome" then you can tell me how you view the world.
As for Jodi's experience, I try to give people a few chances before I say hey, you know, that's not very nice, could you not say that, etc. After more than one incident with the same person, she is not jumping to conclusions, but putting together a pattern of behavior. I am sure she feels just as I do (and I am sorry if I am speaking out of turn Jodi) that if someone doesn't get it, they don't get it, but that doesn't mean it isn't hurtful, especially coming from someone you are somewhat close to as it sounds like this neighbor is to Jodi. I agree, Jodi, that both of those comments were uncalled for. I say go for it with the mildly disturbing comments, but I just am that way as the world well knows by now.
I can see that point of view, but I don't know...did he feel not able to play with the pressure up until now, did the parents think it was not a god idea, did he just express interest recently...the list of questions goes on. I got that he was the team manager and this just sorta came up. I wish I coudl find a whole article on it!
I saw this on ESPN when I was at the gym last night. I grabbed the guy on the eliptical next to me and said "Look at that! He has autism, are you seeing that?" I get too excited sometimes. The guys at the news desk were talking about it too, saying that this should be an example to everyone how a kid with special needs should be treated. The one admitted to crying when he first saw it and both noted how enthusiastic and supportive the crowd was and how wonderful that is. Truly heartwarming.
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!
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!
I actually went to a one day seminar called the death of the dream or something equally morbid, but the seminar was FANTASTIC! It centered on dreams redefined and the man giving it was wonderful! He said something that has kept with me all this time: 'I have yet to meet a parent who truly accepts their child's disability and why should they? Rather, they acknowledge it exists, recognize it for what it is and continue on their way' Paraphrased, but pretty darn close. That is what I strive for. I know it's there, know what might happen as a result and continue on with life as planned.
Maybe she strained and didn't realize she was holding her breath? I can't remember what the Vagal nerve does, but it's down there and it can do things to the heart. I will have to look that up. Poor kid! Glad she is okay now, though!
All I keep thinking is sometimes the "right placement" has less to do with the child than it does with the people at the school. You can't make them truly treat him right - to do that would be changing their views and it doesn't sound like that is happening here. This is tough all around.
Rbin - I understand what you are saying, just like I do Jackie. She has been on this road longer than I have, but what I was hoping to OVERALL convey is that this is the first generation being raised with the "new system". I think that learning from those who have gone before is DEFINATELY valuable, but I don't think we are on the same road. It has been changed by those who have gone before and for that I am eternallly grateful, but let's all just wait and see what may come now that it is different and becoming moreso every day.
"Dream redefinaiton" is something I am already familiar with. Do you think when I wanted a family I said and hey, I sure hope it's a child with DS! Heck no! My dream was a boy a year or so older than a girl, I would stay home with them and we would bake cookies and life would be fabulous. That dream has happened. The specifics are not what I assumed they would be, but isn't that a life lesson in taking things for granted? My own dreams have been redefined again and again as I grow and change. I find myself doing things I never imagined - getting a second degree, catching throwup in my hand without so much as wincing (from the dog no less), not caring if I get new stuff as long as the kids have five times more than they want/need...That is life. My "dream" for Carter is a life well lived. I am not insistant that he have a job and move out and get married. I am not in this to put unrealistic expectations on him to bolster my own ego. I am in this to say that the opportunoities afforded to disabled people are far greater than they were in the past and we can only imagine what the future holds. This is the first generation being raised with regular therapies, early intervention and the idea that yes they CAN - let's wait and see how it turns out before dusting off the same old stereotypes and slapping on the labels. My life will not cease if Carter's potential turns out to be more limited than is currently indicated, but it will definately take a big pause and I will have to reassess myself if I don't continue to live now like everything is a possibility. If I don't believe that it is, I am drawing a line for him and putting arbitraty limitations on him. If a school tried to do that we would all be squaking about it, so why would I do that to him as his own mother?
Trisha - Carter is 3. He will be 4 in June and he is knocking their socks off in preschool!
Jackie - I am trying not to take it as such, but I find you to be somewhat condescending with this whole "life will continue to go on" bit. You have no idea what any one of us here have experienced, related to our kids with DS or not. Just becaseu you have us in age doesn't necessarily mean you have us in wisdom.
Am I the only one out here who has no problem with it is Carter wants to get married? He is most likely sterile, so that is not really an issue, but if he wants to get married and such, I am no one to deny him that. I understand it is a FAMILY marraige moreso than any other because of the support involved, but I'll be d**ned if I bust my hump teaching him and helping him and saying he is more aloike than not only to turn around and say no, Carter, you can't get married because you have Down Syndrome. It would be many interesting discussions with he, the girl and her family, ensuring intentions are on track and lots of teaching about responsibilities and a lot of involvement I am sure, but to flat out say no? Wouldn't that make me a hypocrite.
I am not trying to make jest, but seriously, I know many people who have no business being married and the ink was barely dry on the marraige license when the divorce papers were filed. They are into their parents for money and support, they have children that they take care of poorly, there is abuse (substance, physical, verbal), neglect and the whole nine going on. Does anyone tell them no, you can't do this again, you are not capable of having a marraige when they very clearly are not? No and they have proven they are miserable at it.
Bottom line: If Carter is dating a girl, it gets serious and he approaches me saying he wants to get married, I am hearing him out. Then the talks about finances, jobs, responsibility, communication and a whole slew of other topics begin - marriage might not be the right answer, but all options and consequences will be discussed. I am teaching him the best I can, helping him in any reasonable way possible and having my first dance with him if it comes to fruition. I better be willing to step up and practice what I preach - that his life is as worthy and full of possibilites as anyone's.