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My wife and I are new parents. Yesterday, 7.5 weeks after his birth, our son was diagnosed as having Down's Syndrome. Needless to say, I am highly distraught. Not because I don't have a "normal" child, but because I want my son to have the best quality of life possible. We have good support from friends and family, make enough money that we aren't too worried about the financial burden, and live in an area that has good schools and assistance programs. But it's upsetting to think about my son having limits set on him that I never had. That he'll be treated differently his whole life. That there is a high likelihood that he will pass away before I do. But this isn't a thread for me to whine and worry. It's a thread for experiences involving people with DS other goons have raised, known, worked with, gone to school with, etc. Stories you can tell, resources you know of, and anything else you can think of. In a few years, my wife and I can hopefully start an ASK thread about our experiences, but this is all very new to us for now.
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| # ? Jan 17, 2013 13:55 |
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| # ? May 20, 2013 02:30 |
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I have no personal experience or advice to offer, but coincidentally I read this earlier today. In the comment section there were many links to relevant blogs and other resources, and advice and input from parents in similar situations. There's also a link to the Welcome to Holland-metaphor. You sound like you're starting from a great place of love and support. The only thing I can think to mention is remember that you're allowed to mourn the things that will now never be. It doesn't make you lovely parents and it doesn't mean that you love your son any less, but you're having to adjust to a new normal, and this is part of that.
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| # ? Jan 17, 2013 14:12 |
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I've worked with a lot kids and adults with Down's syndrome. The most striking thing to me was the wide variation - you can't be sure if your child is the "classic" type or not! One of the kids I worked closely with was 12, extremely kind and sympathetic, thin and with very good motor skills, but only in his feet! He played soccer amazingly well but couldn't draw a straight line. I think in general you might expect a sweet disposition, most of the time.  The only "useful" thing I can say is that there is a general agreement that people with Down's are very sweet people to be around. If you give your child oppurtunities, a good quality school with experience with Down's and a lot of challenges, this will greatly help cognitive development. I live in Norway, and several people with Down's syndrome work here. Holding down a job or having a good social life is not always a problem. When I worked with teenagers, most of the kids with Down's had a steady girlfriend/boyfriend (often with another condition, like some kind of slight brain damage or the like).A big part of this will be what sort of mental development your child undergoes, which is why it's important to challenge and work hard to maximise his/her cognition early on.
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| # ? Jan 17, 2013 15:01 |
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lizard_phunk posted:I've worked with a lot kids and adults with Down's syndrome. The most striking thing to me was the wide variation - you can't be sure if your child is the "classic" type or not!...The only "useful" thing I can say is that there is a general agreement that people with Down's are very sweet people to be around. If you give your child oppurtunities, a good quality school with experience with Down's and a lot of challenges, this will greatly help cognitive development. Quoting, because I used to work in an organization that served people with mental disabilities and I agree very strongly with all of this. Most especially, there was a BIG difference between the younger people who had come of age when mainstreaming was the norm and older people who hadn't gotten the same opportunities. Also, I know you are probably busy and overwhelmed with normal newborn stuff, but please reach out to other parents in your situation.
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| # ? Jan 17, 2013 15:14 |
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Sorry for what you're going through. Don't feel guilty about being upset - it's a normal feeling to have and it doesn't mean you love your son any less. It's really ok to grieve, any parent would. My cousin has Down syndrome. A big thing to remember, and I'm sure you know this, is that people with Down syndrome have a wide range of abilities - many are relatively high functioning. My cousin is profoundly retarded - but she was also neglected and abused as a young child (my aunt adopted her when she was 10 - she's 20 now), which I'm sure didn't help. You're starting from a very good place - enough money, good schools, a good attitude. That's going to make a TON of difference in his life. Over the past 30 years, people with Down syndrome have had their life expectancy more than double, and their average IQ has gone up as well. This is due to better care and support that they have been receiving. You're going to have a lot to learn about how to care for your son, but he's still young and you don't need to do everything right away. Eventually you will want to learn about you school system so you can take full advantage of what is offered to him there. You might want to talk to a lawyer and accountant, look into Social Security payments, write your will/establish a trust to ensure continuing care for your son in case something happens to you, etc. But poo poo, he's a newborn, so all of that can wait a good while. Right now you should focus on your family and yourself, and allow yourself time to come to terms with your new situation.
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| # ? Jan 17, 2013 15:16 |
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I don't know if it helps you that much, but I've heard having a Down's diagnosis revealed in your kid is kind of like getting on a flight to Paris but ending up in Bruges. At first you're all like WTF, why am I in Bruges? But after a while you appreciate that Bruges is unique and special in it's own way. Best of luck buddy!
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| # ? Jan 17, 2013 15:32 |
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It is important to find doctors and other healthcare professionals that are experienced working with DS. I would also highly recommend the Special Olympics organization. SOI provides a opportunity to meet other parents and guardians that are sharing your experience. SOI also offers educational courses for parents in a ride range of topics (health, legal, etc.)
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| # ? Jan 17, 2013 16:39 |
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We just had some close friends who unexpectedly had a child with DS, none of the tests indicated the condition. They were, of course, pretty shocked and sad when they found out, but they're both teachers and I think everything will work out fine. Something I wasn't aware of are the other physical issues that are often associated with DS like deafness and heart issues.
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| # ? Jan 17, 2013 17:00 |
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There's a goon in GWS, therattle, I believe, who has a son with Down's. You might want to PM him or pop into the GWS chat thread and ask for him.
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| # ? Jan 17, 2013 20:47 |
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Who knows the height and length of any one's arch of life, and your son'e will be limited. Just make sure that arch as high and as long as possible, just like any other father. You'll be happy to have the opportunity to know, raise and love your son. What is better than that? Make sure to show him that when times get tough. Our closest family friends have a daughter with DS. My wife has taken a sharp fancy to her. Her joy to being with my wife is obvious, overwhelming and heart-warming. She'll take my wife into a room and refuse anyone else entry. They just love to spent time with each other. I'm glad to hear you have resources for this. I really feel for those who don't.
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| # ? Jan 18, 2013 01:38 |
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About 20 years ago I was working as a music teacher and had one student who was a little girl with Down's Syndrome. I taught her for about a year and she is one of the kids who will always stay in my mind, just because of how sweet she was. I was mainly teaching beginner guitar classes to groups of around five to ten kids at a time, grouped by age but generally around 10 years old. I don't remember her exact age but she was in one of my younger groups, so maybe 8 years old when she started. I remember being a little worried when the music school head told me I'd be getting a Down's Syndrome student because at the time I'd had zero previous interaction with any variety of mentally handicapped person and didn't have any idea what to expect. I needn't have worried, because she was absolutely adorable. I started her out in a regular group with other kids her age, figuring that if it turned out to be necessary I could always move her to a smaller group or do individual lessons, which was an option I had for other "different" students (who ranged from super terrifying geniuses, down to five year olds who wet their pants like clockwork halfway through every lesson). She was a slower learner than the others, but it was really obvious that she wouldn't get nearly as much enjoyment out of learning if she was separated out from the group, so she stayed in the regular class and it was a success all round. Basically it just meant she would spend three or four weeks on a piece of homework that the others would spend one week on (these were weekly lessons and I'd give them various exercises and pieces of music to practice daily at home throughout that week). She was always perfectly happy about that, and wasn't embarrassed about showing me the same exercises for weeks while the others moved on. This was noteworthy to me because whenever the same thing happened with "normal" students, all sorts of feelings would get tied up in it, especially with the preteens and teens, and had to be carefully managed. It was just such a pleasure to have a student who gave not one single gently caress how people perceived her, because it was 100% built into her nature that she loved everybody and assumed everybody else felt the same way about her. And whenever she finally got to grips with a lesson and moved on, it was like this was the greatest moment in her entire life and the excitement and happiness were just exploding all over the place. I think the other kids in the class did better themselves from having her in the class, because you can't be around someone like that and not catch some of the enthusiasm. She was very comfortable with who she was. I remember sometimes she would apparently forget I already knew she was a slow learner and would very matter-of-factly say something like "I am still learning page 15 this week, because it takes me longer" with this incredibly serious expression. Not worried, not apologizing, just explaining a fact.  After a year, her family moved away so I don't know if she kept up her guitar lessons somewhere else, but I hope she did. My overall impression of her as an 8 year old made me think she would have grown up to be someone who could function perfectly well in adult society with a little help here and there, and would probably enjoy her life more than most people.
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| # ? Jan 18, 2013 02:05 |
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This blog post: http://www.kellehampton.com/2010/01...irth-story.html and this book by the blog author: http://www.amazon.com/Bloom-Finding...r/dp/0062045032 may be helpful for you and your wife.
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| # ? Jan 18, 2013 04:04 |
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I also work with developmentally disabled students, including people with Downs syndrome, and I feel obliged to emphasize that this:Humanoid Female posted:...she would spend three or four weeks on a piece of homework that the others would spend one week on (these were weekly lessons and I'd give them various exercises and pieces of music to practice daily at home throughout that week). She was always perfectly happy about that, and wasn't embarrassed about showing me the same exercises for weeks while the others moved on. This was noteworthy to me because whenever the same thing happened with "normal" students, all sorts of feelings would get tied up in it, especially with the preteens and teens, and had to be carefully managed. It was just such a pleasure to have a student who gave not one single gently caress how people perceived her... is 100% not something that you can assume will happen on its own. I agree, it's a fantastic attitude to have, but it totally depended on her teachers and parents empowering her in this way. I've heard this kind of thing formulated as, if you have an intellectual disability, it's not that you can't understand or learn to do any given thing; instead, it's just going to take you more time, and that's fine.
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| # ? Jan 18, 2013 06:32 |
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Hi there! My son Liam is 5 1/2 years old and he has Williams Syndrome. It is a genetic neurodevelopmental disorder, like Down Syndrome is. He was not diagnosed until 5 months of age. From a practical standpoint, I really want to encourage you to contact your local Early Intervention program ASAP (I'm assuming you are in the US). The earlier therapies and interventions begin, the better the outcome for the child. My son started occupational therapy and physical therapy at 6 months - about 2 weeks after diagnosis. I'd also look up the nearest Down Syndrome Clinic (most Children's Hospitals have one) and make an appointment. They will gather all specialists a person with DS might need to see and get a really goood overall picture of your child's medical status. This is a HUGE benefit - get all the specialties to look and say "yes, we need to be following your child" or "nope, you dodged this bullet", so you can get a handle on your son's medical needs early. You may also want to contact the Social Security Administration about SSI, but when a child is under the age of 18, the parents' income is included in the determination of need and since you mentioned that you are financially comfortable, you probably will not qualify. However, please look into the financial ramifications for his later life. When he turns 18, he will be eligible for SSI based on his own earnings and assets - if there is a chance that at some point he will need to avail himself of SSI, he's going to have to have less than a certain amount of assets, so keep that in mind when setting up financial planning for his future. My son has several friends with Down Syndrome. There's a huge range of ability level and a big range of personality as well. When they were under the age of 5, the kids who knew sign language seemed to really flourish with a much lower level of frustration than the kids whose parents did not sign with them - if only because they were able to get their needs and desires met faster. His classroom aide in his infant program was an adult woman with Down Syndrome who really loved her job. She was also a world travelling Special Olympics star - she had won a gold medal in figure skating in China. I think the hardest time for us was the first few months. My husband and I both seemed to think a lot about all the things that "can't" and "won't" happen before realizing that a lot of those things actually WOULD happen, they just might look a bit different. I think it's a normal healthy response - to grieve for the loss of one's original idea of what their child's future might hold. But that's not to say that what your child's future DOES hold isn't absolutely amazing. Also, just want to direct you to the SA Parents facebook group. We're here, we're goons, we have babies.
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| # ? Jan 19, 2013 04:56 |
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Thanks! This has all been very encouraging. We're both doing mostly fine emotionally, but we have our moments. I've got the number for our county's Early Infant Intervention service, but even without the news we got, we have had a pretty busy week. We're also looking for a support group or parent meetup group or something so that we can get together with other parents in the area. Also, we'd read something else about teaching Down's kids to sign. That was something my wife had wanted to do anyway, and my sister's been taking ASL classes, so we might try that out. We are heading back to the geneticist on Monday for some more testing. We wanted to have at least two kids, so we want to make sure we weren't at heightened risk to have children with Down's. I still have to schedule an appointment with the pediatric cardiologist, since Down's children are at higher risk of congenital heart disorders. Three days later, I'm feeling a lot more confident in my son's path in life. Thanks, goons!
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| # ? Jan 19, 2013 11:10 |
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Sulphuric Sundae posted:I've got the number for our county's Early Infant Intervention service, but even without the news we got, we have had a pretty busy week. We're also looking for a support group or parent meetup group or something so that we can get together with other parents in the area.
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| # ? Jan 19, 2013 20:49 |
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Fionnula, what is Williams Syndrome? What is its etiology and how do symptoms manifest?
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| # ? Jan 19, 2013 20:51 |
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HEGEL SMOKE A J posted:Fionnula, what is Williams Syndrome? What is its etiology and how do symptoms manifest? I don't want to take over Sulphuric Sundae's thread. I did an Ask/Tell about parenting a WS child a couple of years ago, but I don't have archives so I've long lost it. I'm thinking of doing a new one soon, now that he's in Kindergarten.
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| # ? Jan 19, 2013 21:42 |
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Fionnoula posted:I don't want to take over Sulphuric Sundae's thread. I did an Ask/Tell about parenting a WS child a couple of years ago, but I don't have archives so I've long lost it. I'm thinking of doing a new one soon, now that he's in Kindergarten. I personally don't mind, though I'd definitely read/participate in a new thread on that. My wife teaches teens at our church, and she reminded me that there used to be a girl with WS in the group. All I really remember about her is that she was as sweet as can be, but she could be really naive. She recently got diagnosed with Celiac Disease, which I think can be more common in WS people. I think she also has a slight speech impediment. She's college-age right now, but I don't know much about her school situation. Anyone who has archives can read Fionnoula's old thread here.
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| # ? Jan 20, 2013 02:37 |
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edit: ^^ I can't read goodFionnoula posted:I don't want to take over Sulphuric Sundae's thread. I did an Ask/Tell about parenting a WS child a couple of years ago, but I don't have archives so I've long lost it. I'm thinking of doing a new one soon, now that he's in Kindergarten. Just searched Das Saas and found it
Invalid Octopus fucked around with this message at Jan 20, 2013 around 04:24 |
| # ? Jan 20, 2013 04:21 |
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Here is my new thread about WS And now I am done threadjacking you, Sulphuric Sundae!
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| # ? Jan 20, 2013 11:04 |
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Sulphuric Sundae posted:We are heading back to the geneticist on Monday for some more testing. We wanted to have at least two kids, so we want to make sure we weren't at heightened risk to have children with Down's. I still have to schedule an appointment with the pediatric cardiologist, since Down's children are at higher risk of congenital heart disorders. Three days later, I'm feeling a lot more confident in my son's path in life. Thanks, goons! I don't have any advice since my son is not born yet, but we were flagged earlier in my pregnancy as having a higher risk for a child with Down Syndrome - we declined amniocentesis and CVS so we won't know until he is born, but two fetal echocardiograms show that if he does have DS then he does not have any of the associated structural cardiac anomalies, for which we are very grateful. What I wanted to mention was that we did meet with a genetic counselor who told us that DS comes from a completely random mistake in cell division - there's no way to predict who will or will not have a child with Down Syndrome, UNLESS it's translocation type (there are three types: Trisomy 21, Mosaic Down Syndrome, and Translocation Down Syndrome). Translocation is the rarest form, however. I wish you all the best, and while I know there will be challenges down the road, your little guy will be just as amazing and awesome as a "typical" child. I also second Fionnula's suggestion to join the SA Parents' Group on FB...it's a great resource for support.
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| # ? Jan 20, 2013 16:39 |
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My brother is on the 'very severe' side of DS - the last test they did on him was that he has the physical skills of a 4 year old and the mental capacity of a 1 year old. That's sort of an indication though; there's no real way to relate that to how he is. He's 34 now, and he's also manifested some very weird genetic disorder the last few years where he has these sort of acne-like spots that calcify on this forehead. We went to a geneticist and apparently there's only four cases of it worldwide. He's lived at home for the first two years of his life and he now lives full-time in a facility for kids with Downs and other related syndromes. It broke my parents' heart to do it, but he needs 24/7 care, and if he'd still lived at home my parents (and my sister and me) would not have had a life. That's not cruel or neglectful, but just the way it is. Does your son have any diagnosis on the severity of his syndrome? I can talk more if you have questions, and might be able to get my parents to answer some. I won't do it too much though, it's still somewhat painful, even after all these years.
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| # ? Jan 20, 2013 18:31 |
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Two of my husband's uncles have/had down syndrome (One passed away in his 30's due to cancer). I have met the surviving uncle (About 45 years old), and he's pretty awesome once you adjust to how drat friendly he is- I come from a non-touchy family and he does not. He lives with his brother's family, since he can't quite live on his own- but he has a job at a local grocery store, does therapy, and even has a girlfriend with Down's as well. Last time I was over there, for a 4th of July party, someone said something to him and he quite clearly and loudly said to that person "I'm retarded, but I'm not STUPID". I've always remembered that He also has a high level of involvement with the Special Olympics, I believe he is a medalist in bowling. He seems fairly happy and well-adjusted for someone outside the mainstream.
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| # ? Jan 20, 2013 20:57 |
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Schweig und tanze posted:What I wanted to mention was that we did meet with a genetic counselor who told us that DS comes from a completely random mistake in cell division - there's no way to predict who will or will not have a child with Down Syndrome, UNLESS it's translocation type (there are three types: Trisomy 21, Mosaic Down Syndrome, and Translocation Down Syndrome). Translocation is the rarest form, however. My wife's mother was in her late 40s when she gave birth to her, so we wouldn't be entirely surprised if she has the genetic oddities needed to pass on translocation DS to a child. We know it's pretty slim, but we want to rule it out. Even if that turns out to be the case, that doesn't make it a sure thing that a second kid would also have DS. They told us that there's the slightest chance his DS may manifest itself as Mosaic, but 97% of what they tested has the extra chromosome so it's not very likely. We just know that if we can handle it, we want at least one more kid. Junior G-man posted:Does your son have any diagnosis on the severity of his syndrome? I can talk more if you have questions, and might be able to get my parents to answer some. I won't do it too much though, it's still somewhat painful, even after all these years. We'll probably get more on that once we get all these appointments out of the way. The AFP test came back negative during pregnancy, so we didn't really Down's Syndrome any thought until a little over a week ago. We got sent to the geneticist by the pediatrician to take a look at low muscletone, and got surprised with a DS test being ordered while we were there. He doesn't really exhibit classic DS features very prominently, at least not at this point. He's got a subtle slant to his eyes and he sticks his tongue out a lot. So far, he doesn't seem to be falling very far behind on standard infant milestones either. But we have lots of appointments coming up, and I'm sure his condition will become more obvious as he approaches toddlerhood. Sulphuric Sundae fucked around with this message at Jan 20, 2013 around 21:02 |
| # ? Jan 20, 2013 20:58 |
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| # ? May 20, 2013 02:30 |
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My brother was born with severe Downs Syndrome 20 years ago. My parents never knew my brother had Downs until he was born. My parents have always treated him like any other child. My Mum was asked after he was born if she wanted him put up for adoption and promptly told the nurse to gently caress off. She was also told she would never get him to breastfeed and be a 'normal baby.' He breastfed as soon as he was born like any other child. When my Mum told me this story it really made me realise that what an individual with Downs can do is really limited as well by the expectations of people around them. Even regarding something as simple as breastfeeding. My Mum didn't see any reason why she shouldn't try and that's the motto we've had all of my brothers life. The level of care is changing and improving all the time. My brother started at the local special needs school, (Court Meadow,) when he was 2 in their nursery unit. He went to school five times a week and my Mum and Dad continued to work. It was hard though. My Mum would look after my brother in the early morning, do the household chores when my brother was at school, then look after him again when he got home. When my Dad would get home from work he would take over so my Mum could then start working. (She worked as a distance learning tutor from home.) My brothers Downs means that mentally he's around 3 years. However, his skill levels in say listening are far better then his speech. And his comprehension is limited beyond most basic concepts. Behaviour was a mixed bag when he was growing up. There were a lot of behavioural problems which have now settled down but there were days where both my parents and I were at our wits end. We were initially so opposed to any sort of long term care because it felt like we were failing him somehow. I always felt like he was my brother and that I should be ashamed that I needed help to look after him. But what you forget is that when you're looking after someone with a learning disability every single day is that you get tired. You get worn out and stressed and eventually no matter how much you may want to you just can't give it 100%. Now he's in full time care which means that every day there is someone fresh and rested to look after him. It means now as well that when we spend time together we actually get the most out of it and enjoy it. In terms of care now my family were very lucky as some of the teachers from my brothers old school have actually started their own company which provides assisted living for young people with learning difficulties. The idea is that individuals rent their own home and are assisted, not cared for. So my brother lives in a house with three other young people with different disabilities. Pays his own rent from his disability allowance, goes to college three days a week and an activity centre one day. The level of independence he's reached is amazing. As I said earlier it's not just about what the individual can do but what those around them think they can do. He goes off to the pub once a week with his mates, goes to nightclubs, goes and watches the football, etc. The point is, the severity of his disability doesn't stop him from doing any of this. He's also the healthiest git I know. Bugger never catches a cold and has never had any health problems. He's actually under the average BMI and very tall for an individual with Downs. Sulphuric Sundae, I can only really talk about my experiences as a sister and not a parent. I know that it has been difficult for my parents but when we see him going to college or get a take away with his house mates I can't help but think, "Well what really is he missing out on?" Yes the disability itself limits him in ways that we can't ever change but we can make sure that he can make the most of his potential despite those limits. If your looking for experiences and stories then I can ask my Mum if she can write something up about her own experiences over the years.
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| # ? Mar 1, 2013 00:41 |
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