Down Syndrome

jayo26

Hi fellow parents hope im in the right place.

As a proud dad to a little girl that was born with Down Syndrome just over 3 and half year ago I was wondering would we or could we have a thread on Boards that maybe deals with anyone's questions be it from a fellow parent or parent to-be or just a member of public that is around and meeting a kid with down syndrome and would like to ask something.

I had a search on here a few times and never found any threads just a mention here and there but i for one would like to share experience on here and even seek advice in future from similar parents.

When my little one was Born we knew so little about it and didn't really have anywhere apart from the health services ect to ask but it all seemed very daunting back then.

My girl now is turning four in July she is doing well starting to string some words together and sing a few songs maybe not all that clearly but we do understand her she is just about ready to take a few steps on her own she likes to walk while holding hands or pushing something in front of her so she is very close to taking off on her own.

Anyway if anyone would like to get in touch feel free.

Also if im in the wrong place mods feel free to move thank you.

harr

Great idea ...our man is now nearly nine and like yourself we had little or no information about Down syndrome when he was born...a nurse at the hospital handed us a very bleak information leaflet and that was that 😁

jayo26

harr wrote: »

Great idea ...our man is now nearly nine and like yourself we had little or no information about Down syndrome when he was born...a nurse at the hospital handed us a very bleak information leaflet and that was that ðŸ˜

Nice to meet you we were pretty similar but one of the nurses in the hospital actually had a child with DS and she came to chat to my wife when I was away with my little one that was sent to Crumlin but as good as she was to my wife I think it's different having a nurse or someone talking to you it just feels a bit daunting or something because you feel they are trained to say what they are saying... Does that make sense??

All we wanted was to speak to someone that was on our level and would say exactly what they felt.

jezzer

Hi folks, a relative of mine has an 18 month baby with downs syndrome, I am a bit concerned about its development, as i say its 18 months now and basically just sits there smiling, the baby has not yet made any attempt to crawl, stand, walk, talk, nothing, it just sits there, arms pointing outwards, doesn't really cry or anything....i know kids with DS take much longer to develop compared to normal kids but I am concerned at 18 months that there is literally no development at all, any advice? thanks guys.

January

jezzer wrote: »

Hi folks, a relative of mine has an 18 month baby with downs syndrome, I am a bit concerned about its development, as i say its 18 months now and basically just sits there smiling, the baby has not yet made any attempt to crawl, stand, walk, talk, nothing, it just sits there, arms pointing outwards, doesn't really cry or anything....i know kids with DS take much longer to develop compared to normal kids but I am concerned at 18 months that there is literally no development at all, any advice? thanks guys.

My advice for you is to stay out of it unless the baby's parents voice their concerns to you. Babies with DS do develop at different rates to children who do not have DS. My best friend's little boy has Down's Syndrome and is 6 weeks older than my own little boy, they are different developmentally but he has constant therapies, including speech & language, occupational and physical therapy along with very regular paediatrician appointments in the hospital to keep on top of everything. At 18 months, making no attempts to crawl, stand, walk or talk is very 'normal' for some babies with Down's Syndrome.

jayo26

jezzer wrote: »

Hi folks, a relative of mine has an 18 month baby with downs syndrome, I am a bit concerned about its development, as i say its 18 months now and basically just sits there smiling, the baby has not yet made any attempt to crawl, stand, walk, talk, nothing, it just sits there, arms pointing outwards, doesn't really cry or anything....i know kids with DS take much longer to develop compared to normal kids but I am concerned at 18 months that there is literally no development at all, any advice? thanks guys.

His there jezzer similar as to what January posted all kids with down syndrome born in Ireland are automatically put on an early intervention programe and they will be getting speech and language theropy and physiotherapy from very early and will be assessed also.

My little girl is four now and some of her milestones were very late compared to other kids and even compared to other kids with down syndrome she was late but she got there.

My girl had a couple of heart conditions when she was born and that can have a big impact on development also.

Looking back to when she was 18 months I'd say she would of only been sitting also and she would of been throwing toys around but no structured play with toys I don't think she actually started rolling until she was two and was 3 again she put any weight on her legs. She is now standing solid and walks around at home on her own and will walk anywhere by one hand outside.

January

jayo26 wrote: »

His there jezzer similar as to what January posted all kids with down syndrome born in Ireland are automatically put on an early intervention programe and they will be getting speech and language theropy and physiotherapy from very early and will be assessed also.

My little girl is four now and some of her milestones were very late compared to other kids and even compared to other kids with down syndrome she was late but she got there.

My girl had a couple of heart conditions when she was born and that can have a big impact on development also.

Looking back to when she was 18 months I'd say she would of only been sitting also and she would of been throwing toys around but no structured play with toys I don't think she actually started rolling until she was two and was 3 again she put any weight on her legs. She is now standing solid and walks around at home on her own and will walk anywhere by one hand outside.

My friends little boy had an asd at birth which was repaired when he was 4 months old. That's actually how we met, through a support group for congenital heart defects, my little girl who was 5 and her little boy were in hospital at the same time.

jayo26

January wrote: »

My friends little boy had an asd at birth which was repaired when he was 4 months old. That's actually how we met, through a support group for congenital heart defects, my little girl who was 5 and her little boy were in hospital at the same time.

I hate hospitals but it is amazing how you bond with people in similar situation as yourself. Me and my wife became close to parents of a little boy who was 2 months older then our girl they were in Crumlin at same time we have stayed in touch.

My little one had 2 asd that closed by themselves but she had surgery at 4 weeks to close the pda duct. Compared to other kids she has been very lucky,

laineyw

Hi all

We also welcomed our daughter into the world in June and like some of you we found out that she had Down Syndrome when she was born.
We're currently going through life with her, experiencing all the extra hospital appointments etc! Next year we'll need to consider day care. I've heard that it's difficult to find a creche in Dublin in general and I imagine it's more difficult when you are trying to find something with extra needs such as Lámh. I've heard of people having issues such as children being left in the baby room because they can't walk yet, which naturally we don't want for our little one.
Do you have any advice?
Thanks a mill!

harr

laineyw wrote: »

Hi all

We also welcomed our daughter into the world in June and like some of you we found out that she had Down Syndrome when she was born.
We're currently going through life with her, experiencing all the extra hospital appointments etc! Next year we'll need to consider day care. I've heard that it's difficult to find a creche in Dublin in general and I imagine it's more difficult when you are trying to find something with extra needs such as L. I've heard of people having issues such as children being left in the baby room because they can't walk yet, which naturally we don't want for our little one.
Do you have any advice?
Thanks a mill!

Hi
First off Congratulations on the birth of your daughter and I hope she is doing good,
as you are finding out it’s not all plain sailing..contact your daughters health care team and request an SNA for her to attend day care, our little man was allocated an SNA for 4 hours a day when he attended creche this in turn might make finding a place a bit easier.
Our lad atended two different cres and both were brilliant with the staff actively involved with him and the owners actually sent staff to learn the basics of L , your health care can help the cre organise a staff training day for L as well...
Good luck

frash

laineyw wrote: »

Hi all

We also welcomed our daughter into the world in June and like some of you we found out that she had Down Syndrome when she was born.
We're currently going through life with her, experiencing all the extra hospital appointments etc! Next year we'll need to consider day care. I've heard that it's difficult to find a creche in Dublin in general and I imagine it's more difficult when you are trying to find something with extra needs such as Lámh. I've heard of people having issues such as children being left in the baby room because they can't walk yet, which naturally we don't want for our little one.
Do you have any advice?
Thanks a mill!

I've followed this thread but never posted in it. My son with DS is 11.

You haven't said whereabouts in Dublin you are but if you're anywhere near Stillorgan then I can recommend Lakelands Childcare. It's owned & run by two women who would know Lámh very well.

This thread isn't that active but if you're on Facebook then there's a group called "Raising a Child/ Teen/ Adult with Down Syndrome in Ireland" that has over 1600 members so you might get more of a response there.

January

It would be worth your while also looking for a childminder in their own home who would only have a few children rather than a big creche to contend with. Some would definitely know Lamh.

bp

A family member has a child with DS and the creche could not be better. All staff have learned lamh and the kids are picking it up too. It is so beautiful to see how much they love this child and the other children and parents are so protective

jayo26

Congratulations on the arrival

I agree my girl was in creche from a year old and it did her no world of good. Visit a few in your area and talk to them and you will get a pretty good vibe of how they are.

You would be surprised by the amount that know lamh or that are eager to learn it so that wouldnt be muxh issue and as was said above its easy to arrange classes or training nights for them.

laineyw

frash wrote: »

I've followed this thread but never posted in it. My son with DS is 11.

You haven't said whereabouts in Dublin you are but if you're anywhere near Stillorgan then I can recommend Lakelands Childcare. It's owned & run by two women who would know Lámh very well.

This thread isn't that active but if you're on Facebook then there's a group called "Raising a Child/ Teen/ Adult with Down Syndrome in Ireland" that has over 1600 members so you might get more of a response there.

Thanks for all the advice. We are based in the middle of three areas - Terenure/ Kimmage / Harolds Cross. I contract so it's easier to have the creche / child minder near home as my work place changes whereas my husband is based in town. I've joined that group thank you. And brilliant advice on the SNA - didn't even know we could ask for that.