need to rant RE down syndrome

[devientenigma]

Sorry for this post if it offends anyone, though I am feeling down at the mo.
There's just too many positive stories at the minute RE down syndrome.
How good it is, how life can be so normal.
Why is it not like that for us!!!

Sorry you are feeling down.

I do think positive stories are a good thing most of the time though, having worked with the DSA. A life-long friend of mine also has Down syndrome, her life is not "normal," far from it, but she has a good life and people who love her.

But I can definitely understand where you are coming from.

Is there anything that maybe posters here could support you with?

thanks for that BigWee, my son has people who love him, I just don't think he has a good life. Though to a point he does.
His life seems so chaotic, full of anxiety and has numerous difficulties. Life is far from normal for the rest of us also because of his probs.
Not that I want to be looking like I am blaming him.
He is very hard to motivate, he can't be coaxed, bribed or bargained with. He is very much in control of his life and surroundings. He just has so many issues, I wouldn't know where to start.
I think if I could work out how to motivate him and him having less control I may start to get somewhere.
Thanks again and take care.

Going to pinch quote from someone and alter slightly

If you met/know a child with DS that's it you met/know just one child with Ds

Think Ds is one of those Sn where people can be guilty of stereotypeing yet each child is individual.I'm as guilty as the next I admit till I joined here and realised just how far rangeing dx can be .I had a sterotype idea of cp that's been blown out the water

any chance of grabbing glass of wine and maybe a pillow to have a good cry

I can relate to what you are saying.I wish I could change things too.I think you are being realistic and it is better to be like that than looking at everything through rose coloured glasses.My son is big and powerful and has violent outbursts and I have felt very alone over the years.He is impossible to motivate.There was a book called Dont just learn to live with it,which was intended to inspire parents to do hours of patterning,with their brain damaged children.However I do think that a coping strategy IS learning to live with it,and what ever works do,even if that means feeling angry and bitter sometimes.You are entitled to have those feelings.Having said that I do feel my son has enriched my Life,although had I been given a choice,I certainly would not have chosen it.

It's not always positive, DE today I heard about a mum who went to pick up her older child from school and had her younger son with DS in a pushchair. as she waited for the bell to go she noticed all the other mums slowly edging away form her as if her DS has some contagious disease or something, its truely awful.
I'm sorry I'm not familliar with your DS's DX but I think we all find different areas difficult to handle.
for me, I hate looking at NT and seeing all the milestones they have achieved, while DS is still rolling around, not sitting, crawling etc. (he's 20MO with CP) But I try to focus on his positive points, he's really cheeky (and knows he can get away with it) he's started exploring his environment independantly, and most of all he's my little soldier who faught against all the odds just to be here.
I know it's so much easier to say focus on the positives when all you can see is negitives, but having a good support network around you also helps enormously. It's why I like this thread, as people know what your going through, and can offer small pearls of wisdom.
take care X

thanks roundthebend, jardy and sneezecake.
Sorry just a bit low at the mo. Have had a rough few weeks with ds and dd (whos ADHD and ODD), among issues with profs involved. To top it ds is in respite overnight tommorrow, he and I don't like it!! So it's just been a build up of stuff.
However ds has lots of areas that need help, self care, play skills, speech, language, understanding etc etc. He's been underthe behaviour team for 7 year now and no further forward. OT's have said they don't know what to do to get him motivated.
I feel we have started to make a small breakthrough on the getting dressed which isn't 10 rounds now and down to 8 lol. Though he's still not brushing his teeth!! Forthose who don't know him he's ds, heart condition, lung problems, absence seizures, sight and hearing problems (won't wear glasses) spd, mobility issues, challenging behaviour and dxd traits of asd, adhd, odd, ocd, I hope I haven't missed anything. I also hope this gives a better picture of him.
Jardy, just wondering if your ds is also DS??
Thanks anyway all and take care.

Hello devientenigma

i put a positive response to the post from the lady who was having a bad day with her newly diagnosed baby because she sounded like she needed a bit of a boost. i have a son with ds and i certainly don't feel great all the time, he is very challenging and strong but maybe that is why all the responses were a bit biased that way. my son does not use the toilet or brush his teeth, we fight over a lot of things and bit by bit it can wear you down. so, sorry you felt that way about the posts but i feel like you too sometimes. i get no sleep at the moment and am walking round in a cloud of confusion lol! hope you are ok.

Hello Devientenigma, I'm possibly guilty of positive posts (although my son has different SN) because of the sometimes hateful termination threads which, of course, often centre around DS. I think DS gets more than its fair share of 'its actually fine' posts from people like me because I can't bear the 'oh I couldn't possibly have a baby with SN' kind of post.

Obviously thats a totally different thing from the daily grind you have to go through. I hope you are alright and have all the right people to talk to. Don't feel bad about having an offload. Thats why forums are so great.

Some times are harder than others, I find - when we're going through lots of stresses with school/hosp/whatever, it can seem never-ending and totally overwhelming. And a RL acquaintance (sp?) keeps telling me about her dd's ezcema as if it's some completely debilitating condition - the kid walks, talks, is completely normal! (V sore tongue from being bitten on those days)

But it's also quite natural for us to feel we should boost someone else up when they are feeling down, hence the positive stories we put out.

A bit of space on your own outdoors can help.

And a cup of tea

Hey devientenigma. Sorry to hear that you're having a rough time. I can't possibly imagine what it's like to have a child with DS and so many other problems as my LO "only" has to deal with DS. I try to be as positive as I can on a day to day basis but, like someone else said, you get days where you see NT children reaching all their milestones, etc and you just want to sob/scream/shout "it's not bloody fair", etc. Yes my DS2 is cheeky and starting to reach some milestones but if I had the choice I obviously wouldn't want him to have DS.

Hope you feel better soon

There are times when positive stories help and other times when they do not help.

Sometimes they just add extra pressure. And make us feel bad as parents if we try to inject a hint of realism, like, 'I do know my child and I can see it's not a bed of roses for him'. Makes you almost look a bad parent, as if you wanted it not to be a bed of roses.

But usually this happy rosy approach is either in response to the termination threads or by well meaning people who are clutching at straws trying to cheer us up. (Still remember dd's face when rheumatologist told her she was lucky to have Ehlers Danlos syndrome as it meant her skin wouldn't wrinkle so easily when she got old. Dd was 11 and in constant pain).

Thanks everyone for the tea, flowers and hugs lol x I will be feeling much better teatime the moz when he's back from his overnight respite stay.
I feel guilty now about making peoplefeel they shouldn't be positive and support new parents. Of course you should. I just try to remain positive but not in depth.
I heard all the same when he was younger....it's just like any other child, a bit delayed etc etc When in reality it's a totally different way of life. He didn't stand until he was nearly 5 and still won't walk, thoughhe can manage a few feet, severly delayed in all areas, is unsociable, hates noise, crowds etc
Sorry i'm ranting again!! Like I said roll on teatime the moz.
Take care.

Hi,rant all you like!
Agree totally with shells about the upsetting termination threads.You can still be realistic and wish it hadn`t happened,at the same time we are very vunerable and need to stick together.
My ds was born totally normal but suffered a brain haemorrhage later,leaving him with profound disabilities.A point here that your child can have sn later.
This thread is very helpful and might develop legs.As the mum of a much older (20s) disabled son,it might be worth pointing some positives out.Far from feeling worse as he got older I got better ie dealt with my bitter feeling more easily.As a couple we do a lot / or nothing when he is in respite.Whatever we do or do not do,it feels special.My dh,his stoic atttitude towards our son,and love towards him makes me feel mushy.Our dd,who is normal,and 20 now,says that because of our ds,she copes better with some situations.I know my Life is very different cos of his aquired disabilities,but he does enjoy his Life,and many people love him,for his differences,because of his differences.Take care,it is helpful to be honest,we can still love our sn dc and I think important we are honest with ourselves,and do not coat everything in fairy dust.

meltedmarsbars,I can really relate to what you said about the other parent moaning about her child.I got stuck for a long time (not so much now as I can see how thoughtless they are)because while my poor son was left with profound disabilities,I had to put up with women going on about their kids fixable ailments,eg a baby had to wear a spint on his leg for a little while to correct an entirely correctable abnormality.It soon got fixed,unlike my poor baby.However I had to put up with this womans tears and worse all the sympathy and hugging from the other mums at coffee mornings,to this mum,as she kept crying about it.One day I confronted a mum and told her how hurt and angry it left me,how inappropriate all their support,the clucking of sympathy etc etc.The mum said nobody knew where to start with me,so they never even approached it but treated me as tho nothing had happened.Also the nurses did not have a clue with their stupid thoughtless remarks,still feel so angry now,but back then the anger and bitterness was relentless.So you can see I have improved- a bit!

Jardy, that mum who said nobody knew where to start with you, probably speaks for many - I know I would struggle with finding what is appropriate to say when faced with a family struggling with far more than I have to deal with. I suppose the default is to say nothing? The elephant in the room?

Its never easy.

When DS was tiny, I was sitting with a woman who had grown up with a disabled sister. I was really trying to feel positive, (but was actually feeling utterly destroyed), and I told her that I hoped everything would be ok in the end. She turned round and basically told me my life would be shit. It was like a punch in the face. Even though my life can be pretty shit, it was not what I needed at the time and it did not help one little bit. I thought it was unforgivable.

I think over-positive platitudes are no help, but neither is negativity. ds is such a variable diagnosis, who can say how their lives will pan out?

The consensus that seems to be coming out of this thread is that it is wrong and foolish to tell other people how they ought to be feeling about their situation.

I'm not sure if my reply will be appreciated here or if I am just horribly naive, but I really don't feel any negativity towards my DS3 having DS.

ALL children, disabilties or not can have their problems. I am probably very lucky in that my DS doesn't seem negatively affected by his disability, but I do tend to look for the positives anyway.

I have lost twins in the last two weeks, born at 23+5, one died shortly after birth, one died at almost 9 days old. I would have done absolutely anything for them to have lived but for someone to have told me they 'just' had DS. My two older DS's are sufferring terribly with the news their baby sisters have died, yet DS3 is blissfully unaware of what has gone on. I count that as a blessing. Whatever problems my son has, he is unlikely to have to face the everyday stresses and strains of life that us 'normal' people face.

However, I do respect everyone's experience is different, and DS does have a very broad spectrum. I wouldn't for one second tell anyoner else how to feel. I am so sorry you are feeling so dreadful at the moment.

midori - I am so sorry for the loss of your twins. How incredibly hard.

Hi Midori,
I am really sorry to hear about your loss.
I lost a baby 14 year ago on May 4th. I know it's easy to say but it does get easier over time.
Though you did have me smile re DS3. I think the message you are trying to put over is and shoot me down if I'm wrong...at least with all his issues he is here!!
When he has his overnight respite I find this so hard and that is how I feel....lost. He is so demanding and a full time job.
Hope you are strong, take care x