When ignorance gets in the way...

[Flame]

The best cure is education!

When our son Nick was born with Down's Syndrome, it was a complete surprise to everyone.

I was 19 years old and it hadn't even crossed my mind that it could happen.

My dad, who was in his late thirties at the time, taught me a great lesson.

Nick was a day and a half old and going through all the testing a baby with Down's needs before discharge (eyes, ears, heart, digestive system etc) and my dad and I were out on the balcony chatting. Dad was trying to be 'cool' and 'okay' with it and was doing a great job...
He asked me if he could ask a question and said not to get mad -

His question was 'Is it because you smoked while you were pregnant?'

I explained to him what had happened and why Nick had Down's syndrome.

There were other incidences along the way with other family members and friends making assumptions or simply shying away and when it was dragged out of them it turned out they just didn't know anything about it and didn't know how to react.

It's easy for the parents/families of disabled/handicapped people to get angry and protective when other people seem awkward, uncaring,reserved or say things that seem insensitive.

What I've learned is that mostly, it's ignorance, fear and
well-intentioned mistakes...

It's up to us to reach out and help them.

Toni

[scarlet_35]

a knew this lady way back when whose first child had down syndrome, I forget how old she was at the time but...she had 3 more kids after that and all of them were fine? she didn't do anything differently, it was just one of those things. and she smoked during all of them.

[LuxFerum]

Well, it is not the cause of Down's Syndrome, but smoking is still bad, for the children and his mother.

[Flame]

Lux - Absolutely correct. Smoking is bad, fullstop.

Also, a bit of info on Down's Syndrom specifically...

There are three types of Down's syndrome:

None of the types of Down's syndrome is caused by alcohol, smoking or drug use during pregnancy. Down's syndrome is a genetic issue which cannot be 'caused' by the actions of the expectant mother or by outside influences.

Down's syndrome is NOT hereditary except in the case of translocation, it is important to have chromosome testing done on a newborn with Down's to determine which type it is.

It appears that a woman who has had a child with Down's (ND or Mosaicism) is at increased risk for having another Down's child, but it is not clear why, as these two forms are not hereditary.
Also, age is a determining factor in asessing the risk of having a child with Down's, you are more likely if you are older (ie above age 35)


1. Non-disjunction ... either egg or sperm (usually egg) forms with 24 chormosomes instead of the usual 23. This results in Trisomy 21 .. meaning the affected person has 3 number 21 chromosomes rather than 2.
The affected child has 47 chromosomes in each cell in their body, rather than the normal 46.
This form is not hereditary.

2. Translocation ... This is inherited and passed down. Much more rare than ND form, there's a sticky number 14 chromosome and the extra genetic material causes the problems.
This child either has three copies of number 14, or has two copies plus an extra bit.
You can carry the sticky number 14 and not have Down's... but in that case, you are at increased risk of having children with Down's.
This form is hereditary.

3. Mosaicism ... This form is where only some of the cells in the affected person's body have 47 chromosomes and some are normal. This is very rare and is not hereditary.

They are all down to genetics however.

Toni

[Chanileslie]

Originally posted by Flame
...snip...

It appears that a woman who has had a child with Down's (ND or Mosaicism) is at increased risk for having another Down's child, but it is not clear why, as these two forms are not hereditary.
Also, age is a determining factor in asessing the risk of having a child with Down's, you are more likely if you are older (ie above age 35)

...snip...

Toni

What most people don't realize is that the rate of Down's babies born is as high for women under the age of 20 as it is for women over the age of 35. I don't know why.

I was 18 when I had Morgan.

Also, what is misunderstood is that although a woman's chance of having a baby with Down Syndrome increase if over the age of 35 or under the age of 20, the majority of babies with Down's are born to women between the ages of 25 and 35.

[Chanileslie]

Originally posted by LuxFerum
Well, it is not the cause of Down's Syndrome, but smoking is still bad, for the children and his mother.

Sometimes, yes. Nicotine does pass to the child during pregnancy, and it has been shown that some babies who were exposed to cigerette smoke can be of lower birth weight, but not always.

Anyway the point is that smoking, drinking, drugs do not cause Down Syndrome - it is a genetic disorder. I didn't drink, smoke or do drugs while pregnant with my son, in fact, I ate well, exercised regularly (I rode a bike up to 20 miles a day until I was about 5 months pregnant, and I walked up to 5 miles a day every day), and yet my son was still born with Down's.

[Flame]

Originally posted by Chanileslie


What most people don't realize is that the rate of Down's babies born is as high for women under the age of 20 as it is for women over the age of 35. I don't know why.

I was 18 when I had Morgan.

Also, what is misunderstood is that although a woman's chance of having a baby with Down Syndrome increase if over the age of 35 or under the age of 20, the majority of babies with Down's are born to women between the ages of 25 and 35.

That is something I forgot to mention Chani, and very true.

A simple explanation for this fact is that more women of those ages are having babies, and also that women of this age are more likely to have a healthy and uncomplicated pregnancy ;) (therefore not miscarrying or having stillbirth)

Toni

ps, interesting to hear that you were also young... it was a shock, I don't actually remember the first week after except for a few little 'snippets' of memory.

[Cleopatra]

Originally posted by Flame
It's up to us to reach out and help them.

Toni

As a professional idiot who usually posts opinions about everything I believe that it's NOT your responsibility to inform everybody that has an opinion about your child and you.

People should get informed before opening their mouth.It's not your duty to inform them. Once they ask you questions it's ok but otherwise it's not your responsibility. You have enough on your shoulders.

[Flame]

Kind of you to say Cleo, but it's in the best interests of our children/friends etc to help people be informed and at ease about these things.

Those of us with experience are best able to do exactly that.

Toni

[Chanileslie]

Originally posted by Flame


That is something I forgot to mention Chani, and very true.

A simple explanation for this fact is that more women of those ages are having babies, and also that women of this age are more likely to have a healthy and uncomplicated pregnancy ;) (therefore not miscarrying or having stillbirth)

Ah yes, very, very true.

Originally posted by Flame
Toni

ps, interesting to hear that you were also young... it was a shock, I don't actually remember the first week after except for a few little 'snippets' of memory.

It was a huge shock, and I think I was in denial for the first month until the official tests came back even though the pediatrician told me that he was 99% certain. I remember thinking everyday, "This is a mistake, this is a mistake." But knowning that is really wasn't.

The best advice I think I ever got in relation to my son is from the Pediatrician who examined him right after birth. He said, "he is a baby, treat him as you would any other child." And then he ran away because he couldn't deal with my tears.

[Chanileslie]

Originally posted by Cleopatra


As a professional idiot who usually posts opinions about everything I believe that it's NOT your responsibility to inform everybody that has an opinion about your child and you.

People should get informed before opening their mouth.It's not your duty to inform them. Once they ask you questions it's ok but otherwise it's not your responsibility. You have enough on your shoulders.

Unfortunately, people should know, they should have this knowledge, but alas they usually don't. At least the majority don't. I have people say the silliest things to me regarding my child and Down Syndrome.

One of the things I hate most is when people claim, "Oh, people with Down Syndrome are just so loving." Or "People with Down Syndrome are....." fill in the blank. It ticks me off because it marginalizes that person and doesn't take into account the fact that they are human and like all humans have a variety of traits. My son is loving, but he is also stubborn, has an excellent and, well, rather twisted sense of humor, adores music, can't stand arts and crafts, loves cheesy horror movies, has a temper, loves babies and small children, is very shy, enjoys math and his favorite color is black among a million other traits. He is more than just the kid with Down Syndrome.

In conjunction with that, I hate when people refer to my son as "one of them". He is not an alien, but a human despite the fact that he has 47 chromosomes.

Okay, I am done with my tirade. :p

[Chaos]

Chani and Flame

In my "younger years" (1996/97), when I was doing Social Service, part of my work involved fetching several disabled children for school, and getting them home after school.

In another part of my hometown, there is a school for both "normal" and handicapped children; of the latter, all kinds of mental and physical handicaps were present. Many of the kids were wheelchair-bound, others were so severely mentally handicapped that they hardly seemed to notice what was going on around them.

We only had contact with these kids in the morning and around noon, for around an hour and a half each day. But still, my co-workers and I had plenty of opportunities to get to know them, to see what these kids are like. Much to my surprise, they were not sullen or depressed, as I had imagined I would be if I was in their situation. Instead, they were just like all others kids, in their own way. Certainly, there were less kids running around in the corridors, and a wheelchair, or us young men in our reflecting, red and white jackets (looking very much like an ambulance crew), did not draw any attention as it would have in an ordinary school.

One of my fondest memories of that time is of a girl - a young woman, actually, she was 18, only a year younger than I was at time. When she had been a pre-schooler, something had gone wrong with an anesthesia, and she ended up with severe physical and mental disability. It took her quite an effort to speak, and she had barely enough coordination to zip up her jacket (yet she always insisted in doing it herself - "I am a big girl, after all, and not a pre-schooler!") She had a sense of humor very close to my own, and we had a lot of fun together in the van while my co-worker was driving - mostly, we made fun of him. :) I often wonder how she is doing now.

Social Service was a hard time emotionally, mostly from working with old people, which was my main job then. But still, I learned a lot of things I would not have wanted to learn in any other way – mostly, that disabled people, not only the children, really are people like all others, in their own ways.

Another incident comes to my mind there, speaking of disabled people. One day, a young man cam to our station, asking the receptionist for directions in the town. This took some time, and the young man, the receptionist and I were talking for about ten minutes when, as we were almost finished, the young man told me: “Can you please look at me while you are talking? I am deaf, I have to read your lips.”
After he was gone, the receptionist and I talked about him, marvelling that we would never have guessed this man was deaf, if not for that one remark. This really showed us, as the receptionist put it, that handicapped people are not “raw eggs that have to be wrapped in cotton”.


Well…I just wanted to share that…I don´t know what you´ll think of it...

[Schizobunny]

My brother has down syndrom, but he is a great brother and I think I am lucky to have him as my brother. He can be annoying sometimes, as any sibling can be, but he is funny and nice and an all around good person.

[Flame]

You rock schizobunny, and I hope this is what Nick's three siblings have to say about him when they are old enough to put their feelings into words.

:)

[sophia8]

Originally posted by Chanileslie
One of the things I hate most is when people claim, "Oh, people with Down Syndrome are just so loving." Or "People with Down Syndrome are....." fill in the blank. It ticks me off because it marginalizes that person and doesn't take into account the fact that they are human and like all humans have a variety of traits. My son is loving, but he is also stubborn, has an excellent and, well, rather twisted sense of humor, adores music, can't stand arts and crafts, loves cheesy horror movies, has a temper, loves babies and small children, is very shy, enjoys math and his favorite color is black among a million other traits. He is more than just the kid with Down Syndrome.
Yes, I don't have anyone with DS or any serious disability in my family, but I can't stand the way some people talk about disabled folk as "special people" who were put here on earth to teach us lessons about love and caring. It's putting them on the same level as whales and bloody dolphins - just an excuse not to see them as human!
The last time the Special Olympics were on, I got that stupid emailed UL about the DS SO runners who all linked arms and crossed the finishing line together (moral: disabled people are different from us sinful humans and are pure and loving, as God intended). At the same time, there was quite a lot of coverage of the SO on the television, and I could see that disabled athletes were just as competitive, eager to win and bitchy as any other athletes.

[Zep]

Originally posted by Chanileslie
One of the things I hate most is when people claim, "Oh, people with Down Syndrome are just so loving." Or "People with Down Syndrome are....." fill in the blank. It ticks me off because it marginalizes that person and doesn't take into account the fact that they are human and like all humans have a variety of traits. My son is loving, but he is also stubborn, has an excellent and, well, rather twisted sense of humor, adores music, can't stand arts and crafts, loves cheesy horror movies, has a temper, loves babies and small children, is very shy, enjoys math and his favorite color is black among a million other traits. He is more than just the kid with Down Syndrome.For reasons that I don't care to explain here, I learned long ago that kids like this are kids first, not a set of "disabilities", and the last thing they need or want is pity. So your boy is one rockin' dude, Chani!

[Flame]

YAY Zep, that's exactly right... They are kids, they are people - not a walking disability!

Toni

[Flame]

I would also like to add that 'Jack' who is a friends son goes to regular 'high-school' and does the regular work.
He has Down's Syndrome.
He won't be top of the grade averages, but he is an example that refutes the claims that all people with Down's Syndrome are stuck with jobs folding towels and washing dishes.

For the record, our son falls in the category of 'moderately' handicapped on a general level. He is very near to the line of 'severely' handicapped.
Just because of our personal experience, we are not making the mistake of lumping everyone together, especially since we've been told by his assessing psychologist that most children these days (who have DS) fall into the 'mild' range of handicap.

Even ten years ago and before, people born with DS were held back by the attitude that they weren't going to amount to much.
They were institutionalised, or kept at home and 'coddled'. No one tried to teach them to read, to dance, to do maths or ride a bike.

This was a sad mistaken prognosis for these people who now are middle aged or elderly (for a person with DS) and now they are stuck with the lives they've had.

We no longer make that mistake, and people with DS are now given every opportunity to progress to their full potential - The further we get on in years now leads to more people with DS being active in their communities in every way, including getting married, having more meaningful jobs, having a social life etc.
This teaches people who aren't directly affected in an indirect way, and I think it's brilliant.

It's time for Down's Syndrome to be recognised for what it is, a disability, not a death sentence.

Toni

[Eos of the Eons]

Originally posted by Chaos
Chani and Flame

After he was gone, the receptionist and I talked about him, marvelling that we would never have guessed this man was deaf, if not for that one remark. This really showed us, as the receptionist put it, that handicapped people are not “raw eggs that have to be wrapped in cotton”.


Well…I just wanted to share that…I don´t know what you´ll think of it...

Great analogies. I do understand down's is caused by the extra chromosome, and there is no environmental cause. I also heard there are varying degrees of the other 'symptoms' of Down's?
Some may have siezures? I commend all the parents here for the love they have for their children.

My only comment from Chaos' post is that I keep in mind the fact that physically disabled people are not mentally disabled too, just because they have a physical disability. Mentally disabled people are not always physically disabled, but many are.

Each disabled person is different even if two people have the same disability. I never form an opinion of someone until I really know them.

With my son, people see a normal kid physically. Most people don't understand the range of other 'symptoms' that may or may not come with tourettes.

I find people are so damn judgemental of parents. I never ever will look at a child having a temper tantrum as "spoiled". If anything, I often wonder if there is anything I can do to help when a parent is struggling with a child in public. I do try to smile sympathetically. My son was have a super great temper tantrum a few years ago. A guy I worked with happened to be in the mall, and he came over. I told my son his name. It was rather unusual. The guy told him it was true when my son looked at me like I was nuts. The distraction took his attention from why he was mad at me, and completely turned the situation around.

I dunno. Well, today we were walking in the mall, and he no longer has temper tantrums like that very often. He does have tics though, and one is noise. A kind of loud 'harrumph" is all I can describe it. We were walking behind a family and he did that. They kind of turned around and looked at us. They don't know he didn't do it on purpose. They looked like East Indians, and seemed disturbed. I just didn't know what to say. My son doesn't often recognize other peoples' reactions, and just didn't notice how uncomfortable they became.

We simply moved on. Not much I could do. Thus, I never take anything personally. You just never know, unless you know the person.

[Flame]

Hi Eos

Just wanted to say that I often feel that it must be harder for people who's children do not 'appear' at first sight to be handicapped or different.

When Nick acts in an inappropriate way or does something 'odd', then people don't seem so surprised. He has Down's Syndrome and he looks 'handicapped'.
I hate the stereotyping, but at least it's his 'free card' to do things that seem odd to people.

Nick has compulsive habits like rocking back and forth, twirling & dangling items (anything that can be twirled or dangled LOL) and occasional outbursts of shouting 'out of the blue'.

You have the right idea, just move on. Your son is lucky to have a mum who is so able & loving.

Toni

[Zep]

Eos: My son was have a super great temper tantrum a few years ago. A guy I worked with happened to be in the mall, and he came over. I told my son his name. It was rather unusual. The guy told him it was true when my son looked at me like I was nuts. The distraction took his attention from why he was mad at me, and completely turned the situation around.It should come as no surprise that (a) "normal" kids will throw monster tantrums too, usually at the worst of places and times, and (b) the same "cure", diversion, will usually work just as well for them. All you need to do is discover what makes a good diversion for that child!

People is people.

[ca3799]

Hi everyone,

My son was diagnosed with Asperger Syndrome last week. It's a form of autism. He is 6.

He was born very prematurely (23.5 weeks) with many complications, but had done very well- much better than average, anyway. I had done a ton or research following his birth and tried to maximize every opportunity for his growth and development over the years, knowing the hazards of extreme prematurity. I did everything from quitting work, to ensuring he had breast milk for 1 year (he couldn't nurse) , to respiratory isolation for a year, to corresponding with experts in many areas (special thanks to Helen*), to early intervention for 3 years, oh, heck- it's a long list. You are likely familiar with the way your life changes when something unexpected like this happens!

While I'd like to take some credit for his overall good outcome, I'm also sure alot of it was due to the excellent medical care we received, his own inborn strengths and abilities, and some damn good luck.

I had expected he would likely have (but hoped he wouldn't have)some kind of learning disability appear when he stared school. I was not expecting Asperger Syndrome. I can see he does indeed have many Asperger traits- and I thought he was just quirky, like his parents!

Anyway, whatever his abilities (or disabilities), he is a pleasure. I don't regret anything, and I look forward to whatever life brings our way. In the long run, I hope to help him maximize his strenths and minimize his weaknesses, but in the meantime, I intend to love him just the way he is.

He really is a fabulous critter (please remind me I said this when he is a teenager).



*Helen Harrison, author of 'The Premature Baby Book', mother of Ed, who sent me reams of outcome studies and also showed me how to find info I need myself.

[Boo]

ca3799,

Hi! I'm Boo and welcome to the wonderful world of 'The Spectrum Disorder'. I have 4 y/o twins that meet the full criteria for Autism. I know exactly what you mean by 'quirks'. Those minor details that make life interesting.

My twins have been diagnosed for almost 3 years now. If you ever need to vent or just somebody to whine to feel free to PM me.


In thinking about it, one of the reasons I like the small town I live in is that the people here are very tolerant. While my kids 'look normal' Isaac has trouble walking due to his CP and both he and Sara can display some interesting quirks in public. For the most part people smile and move on. I can't recall one dirty look.


Boo

[ca3799]

Hi Boo,

I just returned from my son's kindergarten program where, instead of doing the things the children practised all month, my little darlin' just plopped down on the stage and sat for most of the performance. He finally began to scoot around on the stage on his back before being removed by a teacher.

Were your twins early, too?

I'm an RN in antepartum, though I don't work very much- usually 6 to 8 days a month.

[RSLancastr]

Originally posted by Flame
Nick has compulsive habits like rocking back and forth, twirling & dangling items (anything that can be twirled or dangled LOL) and occasional outbursts of shouting 'out of the blue'.What an odd thing to shout! :)

My ex has a brother who has Down's. He is now in his 40's, and still rocks back and forth, particularly when excited or nervous. I don't think I've ever seen him twirl anything, though.

When visiting him at his group home, which he shares with about a dozen other men, I see a lot of rocking back and forth, as many of his roommates get nervous or excited when company is over.

[Chanileslie]

Originally posted by RSLancastr
What an odd thing to shout! :)

My ex has a brother who has Down's. He is now in his 40's, and still rocks back and forth, particularly when excited or nervous. I don't think I've ever seen him twirl anything, though.

When visiting him at his group home, which he shares with about a dozen other men, I see a lot of rocking back and forth, as many of his roommates get nervous or excited when company is over.

Yep, my son does the whole rocking thing. It drives me mad because he has filled his bedroom walls with holes because he bashes so hard against them when rocking.

He also does the shouting thing. Sometimes he will just start yelling at his invisible friend, and we don't know what has gotten him so riled.

[Flame]

I can understand how Nick's sudden outburst can make people uneasy, every once in a while Graham and I jump out of our skins because it happens out of the blue ;)

It only appears to be random though, I'm sure Nick is making some point that the rest of us are too stupid to figure out :)

Something else Nick used to do (not so much anymore) is lay on his tummy and raise his head and hips off the ground and clap the soles of his feet together while shaking his head back and forth... He's a bleedin' contortionist!


Toni

[ca3799]

My son's area of interest is "Harry Potter". It's pretty much Harry Potter from sun up to sun down, and he dreams HP at night, too. Oddly, he is terrified of the HP movies and will run outside with his hands over his ears, occasionally peeking in the window, or hollering "Is it On?" if he even thinks someone will turn the movie on. He's six and the HP thing has been going on for two years.

[Chanileslie]

Originally posted by Flame
I can understand how Nick's sudden outburst can make people uneasy, every once in a while Graham and I jump out of our skins because it happens out of the blue ;)

It only appears to be random though, I'm sure Nick is making some point that the rest of us are too stupid to figure out :)

Something else Nick used to do (not so much anymore) is lay on his tummy and raise his head and hips off the ground and clap the soles of his feet together while shaking his head back and forth... He's a bleedin' contortionist!


Toni

That would be the poor muscle tone thing. Morgan used to sleep with his head between his ankles, and he would be flat. Not a bump. It looked incredibly uncomfortable to me, but there you have it. He also used to chew on his toes.

Now, he is quick and very strong!! I think that has been one of the hardest things to deal with, is his incredible strength because he didn't realize how strong he was and he would hurt others and not realize what he was doing was hurtful. Fortunately that has improved and his is more careful.

[Flame]

Totally down to low muscle tone ;)

Nick still pulls his ankles up to his ears when sitting on the couch - Just for fun! :D

Nick was very small for years because he couldn't chew solid food until age 3 & 1/2 and couldn't walk on his own until 4 & 1/2... This all led to his being quite small until last year. Since he's now getting tons of excercise and a great rounded diet (fork & all now, wtg Nick!) he's had tons of growth spurts.

So now we've got a six year old body (ok, maybe more like 4-5yr) and the intentions of an 18month old... We know the not knowing your own strength thing well.
Especially our daughters, between Nick and James (nearly 2) they suffer :D
Both boys are at the stage where they think it's absolutely friggin' hilarious to hear someone shout "OW!"

teehee Ours is a merry little house :D

[Chanileslie]

Morgan was very small and very thin the first year of his life - I think people were sure that I starved him - due to his heart problems. It was very difficult for him to eat (as a consequence, he would only eat Gerber's baby food bananas, nothing else), he had such large holes in his heart, but after his heart surgery at 8 months, he made up for all that lack of eating with a vengence (The hospital brought in a special stock of Gerbers bananas just for him because they normally stocked Beechnut). Now he is quite healthy, and is eating me out of house and home!! Of course, then again, so are his sisters.

Speaking of the whole eating thing: When Morgan was young, he was such a careful and neat eater. People would comment on the fact that even as a small child, he never left a mess nor did his face get messy, but now at the age of 17, it is food everywhere!! Where did my neat little toddler go??????????????

I was fortunate though because other than the heart problems that were corrected at an early age, Morgan has done quite well - he started walking at 18 months on the dot, he has always been quite tall for a Downs child (75 percentile on the Downs charts). I am very fortunate, I think. Of course eventually he may have to have another heart surgery as he has a very slushy valve, but at this point, he is asymptomatic, and that is good.

[MLynn]

Some of the sweetest, dearest people I've met have DS. I'm always very protective of them. Also, my sister-in-law is mentally disabled and has suffered from mean, hard people and is now in a private residence where she is quite happy.