Hi, new here and what a journey!

[Peanut08]

Hi,
I posted on antenatal choices recently and have been steered here by some of the mums I chatted to about continuing a pregnancy with a disabled child (lovely, supportive thread)

I have a DH and 3 DC 7,5 and 7 months my youngest DS has down's syndrome he was diagnosed at 16 weeks pregnant by an amnio last year and after quite a few difficult months of worry and 'fear of the unknown' he's here and we're left wondering what all the fuss was about he's fantastic and I'm so proud of him.
We've gone through the weight gain and feeding problems, heart surgery for an AVSD with complications following surgery (definatly my lowest point) but now he is healthy and growing, developing well and is a very happy and content baby who has changed our lives.
So here I am. Looking forward to getting to know you and your DC and thanking you again for the lovely welcome on the other thread. x

Hello peanut and all.
Lovely post slightlycrumpled and so true.
I've had some lovely examples of sweet behaviour from his brother (but don't expect miracles - sibling rivalry doesn;t disappear with sn!!).
Our lovely little lad's future is actually mapped out to a much greater extent than our other kids - high school (special unit as he is making slow but determined progress), then college (our local authority has places for sn young adults and have already discussed this stage with us) and then possibly a place in a Camphill community eventually.
Fizzy - PLease don't get hung up on the food - we had two years on semolina but with the dieticians input, plenty of vitamin drops etc and we are all stll here! Just keep trying but ask for specailist advice from a speech and language therapist with an interest in feeding if your health authority has one.So glad you are having a good week - I am babying number 3 too!
Good to hear from all the mums here. Deviantenigma - does your ds behaviour include kicking and throwing things when asked to do work? We had this at 8 but almost away now.
Good weekend to one and all

PS for Soph - lovely pics

Morning. Lovely to read all your messages. We didn't know Sam had DS until he was born. We were told that it is Mosaic Down Syndrome and, at the moment, he is at the same stage developmentally as a 7 to 8 month old baby.

Sam mainly had money for his birthday and is now the proud owner of a high chair, play pen and new pushchair. He is also now able to sit unaided for a few seconds before falling sideways His first tooth also came through yesterday so that was his birthday present to DH.

Sam will eat anything as long as it is pureed. If you actually give him anything to hold and try and feed himself he just scrunches it all up in his hands then throws it everywhere. That's another good thing about living in a foreign country where all the houses have tiled floors, you just sweep up & run a cloth over the floor once he's finished throwing stuff over it.

Must go and pretend to do some work

wasn't having a pop at unoriginal name, peanut. Hah - my last original thought was in 1996 . Twas in uni. I've dined out on that idea loads since - butchered it for work, party chatter etc etc

Sam looks and sounds lovely, Sop73

just wanted to add that I am certainly a better person for having my asd kids. Much more patient than I ever thought i could be and pretty open minded about most things these days too. Not something I was before they came along. My eldest is a stroppy 15 year old who is anti most things but never his brothers. People comment that he always sticks up for the underdog and I am sure that comes from having 2 siblings with disabilities.

On the feeding issue, my middle ds had to fall through 2 centiles before the feeding clinic would take a refferal and then they said that even though he lived solely off milk and 10 yogurts a day (had to be vanilla) for over 18 months, he wasn't emaciated enough to go on the programme. It seems as long as they are growing, no matter how slowly, they weren't bothered. We even got to the point of talking stomach taps to feed him at night. Fortunately we had a speech therapist and educational psychologist who spent a lot of time with us over about 3 years and despite great ormond street telling us he would never eat a solid meal, he manages to bite and chew like the rest of us now. He is in age 9 clothes and turns 13 in 3 weeks but he is happy.

Hang on in there, as they get older it does tend to get easier (mostly - although there is always something new cropping up). As we get used to the situation we tend to become more edept at dealing with things. Building up a support network is vital as there is almost always someone out there who has been there or knows someone else who has and emerged the other side a better person for it.

LOL at pixie. Can't remember actually having an original thought Sam managed to bring a smile to everyone's face when he's around them. Even when he was in hospital he smiled his way through it and nurses from other departments would come to see him

eatyourveg - I am definitely more tolerant than I was before and a lot more laid back.

No worries Pixie .

I'm with you on originality. Since having children it's slowly disappeared along with my memory and sanity .

Fizzy, great to hear about your LO, sounds like a real cutie and great to hear you had a good birth. Having a baby with a heart defect meant that the DS was in the background for the early months. Feeding was painfully slow (NG tube) and he went in to surgery at 4 months weighing just 8lbs. It was the longest 4 hours of my life and since has helped me come to terms with his DS IYSWIM. If you feel like chatting more feel free to email me though my profile.

Marmoset, Congratulations on number 3!

Hope everyone had a good weekend

Whoops marmoset I read your post as having baby no 3!!! .

Think I'll lay low for a while, I need more coffee!

Hi Peanut - she is only 6m so i'm still taking congratulations!

hello smallwhitecat - hope you get your appt soon. Got to go - my dd is getting hungry. Pesky girl keeping me off mn!

hello peanut and other new ladies too I have a 9 yr old dd with mod-sev learning disabilities

hi only just seen the thread welcome your family sound adorable

i have a ds who was 4 yesterday he has high functioning autism

hello smallwhitecat my ds was dx at 3 with ASD it was such a hard time and its roller coaster emotions for some time after

but when the help and sup[port comes in it does get so much better and i must say the change in my ds since dx has been huge

i do feel for you pleas ekeep us posted and i'll offer as much support my ds was dx A YR AGO NEARLY SO STILL QUITE FRESH BUT MUST SAY I FEEL SO MUCH BETTER oops sorry

i can still ahve days but most days life is good mn has been ongoing support for me from some very wise people and makes you feel so much less alone and gives you somewhere to say anything you want xx

Original thought? I cant even think of anything original as a retort and yet I am going back to work in 2 weeks where I will be expected to have orginal thoughts and do something about them. Will put that thought into the denial part of my brain for now...

This thread has helped me enormously in stopping the worry about feeding so thank you all who have helped and well dont the peanut for starting it off in the first place

Peanut - I can completely see that what you went through with your sons heart put everything in perspective. Am glad things are much better.

Smallwhitecat - I do think the fear of the unknown is the worst. We waited a year for a diagnosis for my oldest son for what we thought would be a horrible condition (turned out to be something else)and it was that time that was the worst of all. Your mind can play horrible tricks on you when you dont know what you are dealing with!

Am off to feed my son - am giddy by the fact that he had two spoonfuls of weetabix this morning!!!!!

well done fizzy's ds

smallwhitecat to be honest the waiting was the worst time i felt physically sick at every thought not knowing not knowing what to expect etc

i wasnt afraid of dx as deep down i knew but at same time convinced myself several times i was wrong

when he was dx i cried and did so for days then i brushed myself off anf thought great i know now , now time to get him help with the help he came along at such a pase that all i felt was relief

i still get days when i think why him but he is so adoreable its who my ds is i cant change that but i can be the best mum who can make sure he gets all the help he deserves to make his life easier

he now speaks in sentences atypical speech sounds but i never thought we'd ever have a conversation

he has off days so do nt children

he suffers socially so can nt children

my ds gets SALT he goes to a sn group and i get lots of help off here

my days can be no harder than other people with nt children

he clearly has issues that nt children dont have but once you learn what causes them and how to deal with them it is much easier

all im trying to say is there is light at the end of the tunnel and with dx comes alot of help and progress and i dont tell people who dont need to know not because im ashamed but because he doesnt always appear different there fore they dont need to know they can like him for who he is

i hope all goes well for you were all here to chat or just to listen xx

smallwhitecat Good luck for your appointment on Friday.

fizzy ahh the highs of two spoonfuls of weetabix! DS2 had terrible problems with feeding (or lack of!) but now at 5 he is like a little eating machine. He still needs sloppy, easy to chew food but he has finally been declared thriving!

also dont expect him to behave like other children he is who he is once we can accept that it becomes easier i no longer feel so sad that he doesnt act like other children i know plenty of nt children his age and i wouldnt want him to act like most of them lol

i dont expect him to play or do as other nt children do he is him unique and wonderful we have such fun together i understand him he allows me to see the world 2 ways and our bond is unbreakable

I hope friday goes ok. Try to think of it this way. If you get a diagnosis, it isn't a sentence. It is a key which gives you a way in to get your ds the help that he needs in order to get through life and enjoy a happy childhood. When my ds2 was diagnosed with severe asd at 22 months I was devasted because i had gone to them hoping they would prove me wrong. ds1 was about to start school, we were in the middle of moving house and I was pregnant with my ds3 who is also asd. The second dx was worse because I understood what we were in for. Having both dx though has meant that both get the help they need (in different ways) and as such they have both grown to be wonderful boys who although still very asd, with our NT ds1 are the best thing that has ever happened to me and my dh.

Soph - Sam looks v cute and is v photogenic! my son is like me - better in real life! Have you been signing with him? what input / support do you get over in Gran Canaria?

We have reached another milestone today of 4 full bottles drunk with minimal projectile vomiting - RESULT!

Morning all.
Hi smallwhitecat - hope everything goes well on Friday.
fizzyanddizzy - no I haven't done any signing but have a couple of websites to look into so am aiming to do that soon. At 2 months Sam started his physiotherapy, then at 6 months he started occupational therapy. Now he goes for occupational between 8.30 and 9am Mon, Wed, Fri and it's followed by his physio 9-9.30. We did start speech therapy but this has stopped at the moment. I am in the process of getting some info together so I can make an appointment to get this re-started. We have also had an appointment where Sam was assessed as to what level of financial help we are entitled to from the state. This was 4 weeks ago and (as usual) we are still waiting for the certificate so we can claim for this assistance. It is a real struggle for us at the moment financially as I've had to take a cut in wages because of the time off I have to have to take Sam to all his appointments. In July Sam will start rehabilitacion temprano, this encompasses game playing, colours, more interaction with other children. They want him to start now but I can't take a further cut in hours

Congrats on the 4 bottles