in still feeling emotional re:18mo DS's genetic abnormality?

[mancvegas]

honestly, sometimes i forget completely, sometimes i feel deeply ashamed of myself for feeling anything other than the pride i actually feel the rest of the time, and sometimes i feel like ripping peoples' heads off when i really can't blame them for slightly insensitive comments...

somebody tell me there's a thread here for those with children with similar? looked in special needs topics but to no avail...any ideas greatfully received.

p.s.have namechanged which possibly gives an idea of shame, i don't know...

YANBU. The fact that it's genetic - maybe the emotional feeling has some guilt in too, because it's genetic and therefore something that was passed on?

If that's what you're feeling, don't make yourself feel worse by beating yourself up over your feelings. You can't help it, you're not unreasonable.

Maybe the feelings are a kind of grief? And you're working through the stages? It will pass.

Is it quite a rare abnormality? why not start a thread and see if anyone else posts? Or is there a charity/support group for the condition? They might be able to help too.

YANBU-sensitive issue and dealing with other peoples stupidity must be hurtful and tiresome. I can't imagine anyone would think you unreasonable. Be kind to yourself

I'm sure if you post on SN you will get replies and empathy. My DS probably has a genetic disorder, but he still hasn't got a diagnosis, aged 13. Have you tried 'Unique', a group for rare chromosome disorders? They are very good

Hey hey,come on your ds is still your ds and you are still you - you will get through this its a period of readjustment and soon you will be over it-insensitive people are ignorant fucks - treat em with contempt.....

Your gonna get through this - everyone else does and get on with living -ok? promise.

Dont know if you are a regular or what but someone for you to look out for,someone I really admire is riven she will teach you to suck eggs at disability x.

Chin up Girl.

thanks people.

decided to go to bed last night and not start obsessing, but you all type lots of sense. it changes day to day how i feel.

Sea - someone else who has a son with dwarfism told me she had had to "grieve" for her "perfect" baby when her DS was born - i'd never considered that before i heard it.

also, there is a lot said about newborns being "perfect" ("he/she's just sooo perfect!") of course they are, it just sometimes felt like a slight - now that is unresonable of me i know but hey ho!

great thoughts from you all - i really appreciate you taking the time.

mancvegas, I have a DD who has a genetic condition as yet unidentified. Physically she looks kind of normal, until she walks/talks. Behaviourally she is different enough for people to think I am a bad parent with lax discipline, but not so different that people excuse my parenting, IYSWIM.

I do feel as you posted above. Many parents on SN do for many years. Come and join us. Start a thread.

Is the condition dwarfism? If so, there is a poster called "emkana" whose son is due to start school in September who has CD. Put a shout out for her.

Is it achondraplasia?? oh my dear girl at my middle sons school the most popular lovely child had that - children dont see that as different.

I don;t know if this is relevant but it helped me when dd was born with a genetic disability.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I hope you like it

My lovely ds has m.e im sad that he doesnt enjoy his life as much as his peers but looking at the half full glass hes an amazing person because of his m.e.

I have thought about this subject a lot.

My son has LD and other conditions. My son is also adopted.

Am I able to accept this more easily because I cant be to 'blame'? I really do not know. I do feel guilty for not doing enough to help him but then I feel guilty for not saving my DD from cancer.

I am now an 'older' mum so had lots of warnings about my DC4 and 5 being more at risk of chromasonal/genetic disorders. Decided not to be tested for anything. DC4 fine, due DC5 in April. Who knows how I would feel if a birth child of mine had a genetic problem?

Dont be hard on yourself. Dont we all want our children's lives to be as easy as possible? Even those of us who are super positive about disability and difference know that its a hard world out there.

Dont be ashamed. You dont deserve to feel that way.

what lovely, supportive thoughts. i really get that Holland thing - thank you for taking the time to post that.

i do think most of my 'emotional' reaction is down to a sense of guilt - i went over with a fine tooth comb the events of the week i know the area of my DS's development occured in utero - i managed to find out when this area would've been developing in terms of when i was pregnant. it makes not a damn bit of difference and i was told i couldn't have affected it but it would've almost helped me if i could.

it's such a weird thing: i am intensely protective of him yet he is as happy as a clam! yes, i dread any future bullying but i know the most "perfect" can be bullied for no reason what so ever, so go figure, i suppose.

i particularly hate when, as happened the other week, a friend/mother of another child same age as DS was talking about being "freaked out" by the presenter on Cbeebies - my DS's condition is physically obvious/some would class disfiguring (he will be offered plastic surgery when he's older) - do they think i should hide him?! she's a nice woman - genuinely she is - and i didn't want to embarrass her but then felt really shitty after for not asking what she thought i should do. i explained what i knew about the presenter, gently, thinking "please 'get' this", but then the following week she said a similar thing!! i also don't want people to have to edit their random thoughts when i'm around (or maybe i do!!!)

and this bit sucks: i know how i felt when i was a kid/teenager - i was probably really freaked out by those who were 'different' and my heart breaks a little bit for DS's future - i know all parents are insanely protective but it isn't fair, is it? i just hope by having people like Kerry ( i think the Cbbebies lady is called that) in the public domain it will be a little bit easier in the future.

off to bed- thank you again for some really lovely thoughts. lucky children having such great parents.

I've only just seen this thread - Please try the sn board, there are plenty who feel just as you do.

If you are in for the long haul, it helps to find advice and a listening ear - there are plenty here.

Other people can be very insensitive, and you will work out who is a true friend and who to avoid.

Have you thought of contacting contact a family who may be able to put you in touch with other families with children with the same consition.

Post on special needs and i'll join you! I lurk over there but haven't posted as seemed no one similar to my DD.

My DD 4 has the exact same birth defect as the cbeebies tv presenter.

How old is your child? I have found it easier with time but that said already getting apprehensive re her starting school this sept.

You are not being unreasonable at all...
Having a child with special needs/a disability is a huge thing to come to terms with, no matter how positive you are
I've been Mum to a disabled child for nearly 13 years.. I love him with every fibre of my being, but at times I still grieve for 'what should have been'.. I grieve for the opportunities he won't have in life, I worry about what will happen when he's grown up and not independent..I worry about how other people perceive him (tho he is oblivious thankfully)

I was wary of people with disabilities, thro lack of knowledge, and very nervous of those with learning disabilities... and my son has all those and more... but over the years I have not only learned to respect and love difference but also to brush off those who don't get it!

It does get easier in time... and there are so many wonderful people out there who often unexpectedly restore your faith in human nature when you are feeling down....

Dixiechick - until you post you don't know if there is anyone with a similar case ! And even if there is no-one with exactly the same thing on that day, there will probably be similar issues to face with different diagnoses iyswim?

Macforme - lovely post too.

Hello all

I have a similar problem. My 8mo DS - much tried for, and probably my only baby - is blind in one eye, which is much smaller than the good one. Being blind in one eye will hardly affect his life - other than not being able to join the air force or drive trucks for a living - but it's the fact that it looks so different from the other eye that I find really hard. His eye colour is also the only thing he's inherited from me!

For days I forget about it, then when I see him in the mirror, or when someone else says what beautiful eyes their baby has, it makes me so sad for what will never be.

He's so beautiful and wonderful, I feel bad for resenting the fact he's not 'perfect', as well as fearing for him as he grows up and could be the target for bullying.

When he's old enough, about 5, he can have a cosmetic shell made for his bad eye to make it look just like his good one. In some ways I can't wait for him to look as gorgeous as he can do, but in others I hope he's so confident in himself that he doesn't feel the need to wear it.