Down Syndrome

by **[email protected]** » Thu Sep 04, 2022 2:43 pm

Our second child a fabulous little boy called Declan was born almost 9 months ago with Downs (DS).

He is superb, funny, chilled, brave and soooo loving.

I'd love if i could chat with other parents and hopefully provide support .............
Anyone else out there...........
Ceegee

by **cheer bear bride** » Fri Sep 05, 2022 2:44 pm

Big congrats on birth of baby Declan :o)ll

Have sent you a pm :lvs

by **Miranda H** » Fri Sep 12, 2022 10:19 pm

Hello there and congrats on your lovely babs. There's a fab Mam who posts on Rollercoaster called Cathal's Mammy who has a son with DS. She has a great blog too, you can check it out at http://cathals-adventure.blogspot.com/

Hope you find it interesting! x

by **[email protected]** » Mon Sep 15, 2022 9:23 am

Thanks Miranda,
I've spoken to her on another forum but didn't realise she
had a blog. Its excellent, i've really enjoyed it.
Thanks again for your congrats
Cx

by **gregaa** » Fri Sep 19, 2022 10:19 am

Hi

I have two stunning little women, Sorcha who is 20 months and Alannah who is 7 months. Irish twins!! My first, Sorcha, has DS and she is the most spectacular little person.

She has everyone she meets wrapped around her finger within minutes. It seems since I had her there has been surge in children born with DS. Strangly enough my best friend had a little boy about 5 months ago and he has DS too. Each and every one I have met are different, they all have their little quirks. We are lucky that Sorcha has no heart conditions but it feels like she has had a chest infection since she was born and as for trying to get her to eat anything !!

I don't know if anyone else has had the same problems with getting services and so call entitlements for their children but we are still fighting to get a medical card for her and as for ST/OT&PT it is a daily battle.

I'd love to hear from any other mums, I've even been considering offering myself as a volenteer to the maternity ward where Sorcha was born. I know I would of loved if someone, in those first few scarey days had told me all the good things and all the positives a child with DS brings, rather then a few print outs and what felt like never ending pity !!

by **[email protected]** » Tue Sep 23, 2022 8:37 am

Hi Gregaa!
Lovely to get your post. Congrats on your babies and upcoming wedding.
There is 16months between my little ones so i have a little idea how busy you are!

Declan needed heart surgery at 4 months, and traumatic as it was at the time, his heart is perfect now and he won't need any further surgery. Its such a relief really.

Availability of services like ot, physio and speeche therapy seem to vary so much depending on which service you fall into . We're attached to Stewarts in Palmerstown and have been blessed really, just recently have seen speech therapy but they started us on a course called the Hanen program for children with speech delay and we start the lamh course in oct/nov. We've had Physio & Ot maybe monthly. I got a call last week from the home support teacher and she ll come fortnightly. We have great support from the service and feel lucky.

We havn't applied for the medical card yet but even with his heart condition hes healthy and only been to the doc so far for his jabs!
We applied for his DCA in April and were told there was a 12-18mth wait before assessment >:o)

Really need the cash cos i want to reduce my hours more and can't affort to until we get the cash.

How is Sorcha doing? Has she started to move around yet? How did she take to her little sister?

by **gregaa** » Tue Sep 23, 2022 8:50 am

Hi,

She started crawling at about 15 months and she has only just started to pull herself up on things at 20 months, hopefully it won't be too much longer before she is walking. Can not wait till she can run around, I spend my days running around after her. Of course her favorite game is climbing up the stairs - little madam can even move the stair guard!! She adores her little sister, and vise versa, they spend their days laughing at each other, although she has started to pull her little sisters hair but she will be getting her own back soon enough.

By DCA do you mean Domicilary Care Allowance? We received ours within weeks of her birth, it was one of those many forms to fill in - you should definatly appeal it. I have just applied for the carers allowance and that is a 10-12 week wait. Did you know there is a half carers allowance that you could apply for. Not sure of how many hours you can work but I got it while I was on Maternity leave with Alannah.

by **[email protected]** » Wed Sep 24, 2022 10:03 am

Its super when theyre friends and able to fight and play!!
Sorcha is doing great and hopefully will start cruising soon. Declan hates being on his tummy and now defiantly puts his head down and sucks his thumb! Yet when we go to physio he plays a stormer and shows off but won't do it at home!!!

We havn't even been seen by the doctor yet for the domicilary carers allowance >:o)

- weve been waiting since april.
When i rang them they said it could be 12-18 months. I know we'll get the back money but it would be great to get it sooner.

I must look into the carers allowance more didn't realise there was a half one available, thanks for the tip.

by **Kingston Design** » Fri Sep 26, 2022 9:49 am

Congrats on the little babies!!

My little sister has DS-I used to be the youngest and then Sinead came along 15 years later :eek

To say she was a surprise/shock would be understatement of the year, but that said we wouldn't be without her for a second! She was 5 weeks early and turned blue a couple of times just after being born so the doctors thought it was touch and go with her, we even had to have her baptised in her little incubator the day after she was born because they thought we might lose her-turns out she had a hole in her heart but it has thankfully closed up by itself.

She's just started secondary school now and is going to a special school, but one that runs the Junior Cert Schools Programme and Leaving Cert Applied so we would hope that she will go on to do these exams. She went to a mainstream secondary school where she was absolutely spoiled rotten by kids and teachers alike!

I think the thing my parents found the hardest was the struggle to get her what she deserved/was entitled to in terms of schooling. Sinead was the first child with DS to go to her local school and we had to fight to get her in, we then spent the first year there fighting with her teacher to accept her. Then that teacher left the school and everything went brilliantly from there on out, but there always seemed to be a constant struggle to get her entitlements like her SNA, her full resource hours, her assessments etc. Then this last year my mum had herself tortured trying to decide where to send her to secondary school. We had wanted to send her to the school that the rest of her class were going to but the school just didn't havethe resources :o(

My mum really wanted her to go on to mainstream secondary but even though the Dept. of Education is supposed to be pro-inclusive education, they just don't bother putting the money into resources for kids with special needs O:|

Mum also found it really hard that there was no one out there to give her advice or help her with her decision. But now that she's in her special school, she's loving it so it was definitely the right descision-plus she knows a good few kids in her class from doing Special Olympics!

Em, OK, gonna stop waffling about her now :-8

(I could go on for hours-I just love her to bits :lvs

)

Just a bit of an aside-did any of you notice a difference inpeople's attitudes since the Special Olympics? We've found people make much more of a fuss over Sinead and are really great to her-it's brilliant!!!

by **[email protected]** » Mon Sep 29, 2022 7:41 am

Thanks for that!
I could listen to your story forever - anything else you want to add at any time please please do - its great hearing about other peoples experience and does give you hope.

You re right about peoples attitudes - i think there was a dramatic difference since 2004. We have really such a long way to go though when you think about the struggle your mum had and we still have just to access what already is in place.

Every best to Sinead in her new school
xxx
thanks again

by **Kingston Design** » Mon Sep 29, 2022 4:16 pm

[email protected] wrote:Thanks for that!
I could listen to your story forever - anything else you want to add at any time please please do - its great hearing about other peoples experience and does give you hope.

You re right about peoples attitudes - i think there was a dramatic difference since 2004. We have really such a long way to go though when you think about the struggle your mum had and we still have just to access what already is in place.

Every best to Sinead in her new school
xxx
thanks again

I know-see this is what drives me mad O:|

Way back in 1994, a specially set up investigative comittee recommended that all mild to moderate special needs kids be integrated into mainstream and that the funds, resources and personnel be put in place for that, but we're still in the postition that the Government officially 'supports' integration, but in reality is doing very little to facilitate it O:|

I guess we all just have to keeping fighting for our kids' rights and keep trying to change attitudes!

by **Clifford Designs** » Fri Oct 03, 2022 5:05 pm

We have a little guy who has just turned one - his name is Mike and he's just a dote

I just did the mini marathon in Cork for Down syndrom and it was a great day -

not sure what lies ahead for us we have no idea but so far so good.

by **bride.** » Tue Oct 07, 2021 3:39 pm

So lovely to hear the stories and disappointing to hear how hard parents still have to work for what they are entitled to.

Could I ask how you all found out your LOs or siblings had DS? Were they diagnosed before birth, at birth or soonafter or was it a case of requesting a blood test once baby was born?

I hope you don't mind the question, I would be very interested to know.

:thnk

by **[email protected]** » Wed Oct 08, 2021 7:16 am

Hi Clifford Designs and Bride,
Clifford designs - lovely to meet another mammy and well done on the marathon.

Bride, we found out when Declan was born, the consultant examined him and told us he felt that Declan had characteristics of a baby with Down Syndrome - I asked for Declan back and knew immediately that he was right - i looked at my DH and his word were "he chose us", those word have framed our mindset to this day.
Although i wish Declan didn't have to deal with this challange i wouldn't change anything about him because that is who i am in love with.

I feel that the sonographer at our 20 wk scan may have know as she spent ages talking to us about us and our other child, what we did for a living, and spent ages scanning his heart. It was a very very through scan.
His heart complaints were only detected 3 weeks post delivery.
I am glad we didn't know - but i could imagine alot of people would prefer to be told.
We also had a 4d scan with Paula Tunney and she asked who our consultant was, had we had our diagnostic scan, did we know that her scan wasn't diagnostic and she told us that his heart looked fine, I'm sure she had picked up on it too - but at the time i would never have guessed - even though i would fall into the risk group.

by **Long Legs Lizzy** » Thu Oct 09, 2021 5:03 pm

Hi everyone,
I'm not a mother (yet) but have a sister with Down's syndrome and just wanted to share i suppose what my mam did when she had my sister. Luckily our local doctor was very supportive and put her in touch with other mother's in our area with Down's or special needs. so mam had someone to talk to and ask for advice. in the end she with a few other parents set up a local group that worked on a vountary basis for all special needs in the area e.g: set up a summer camp, campaigned for school buses to get their kids to school etc. it's a been life line for my mam. this all happened in the early '80s but i'm sure it could still happen today.
just something maybe to think about
hope it helps
lizzy

Down Syndrome

Down Syndrome

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