Down Syndrome

by **[email protected]** » Wed Oct 15, 2021 12:41 pm

The following comment about living with downs and introducing it to our little ones was emailed to me and i just found it so refreshing that i thought i'd share it with you.........hope you find it interesting..............

Honestly since the time we found out prenatally, we have always had
T21 as an every day part of our conversation. We don't necessarily
make a big deal out of it but tend to celebrate it. Tarenne says,
"Down syndrome rocks baby!". At 3 we were at a zoo and a lady who was
probably in her 40s that had DS walked by. Tarenne whipped her head
around to watch her from the stroller and said, "Mom, Dad" and then
signed "same" and pointed to herself. So she has been that aware
since that early age. We have just said, "Just like our eyes are all
different colors, we have different color hair, you have Down
syndrome. That's the way God made you." Once she hit Kindergarten and
needed to learn to write, she was refusing to let me help her. She is
fiercely independent. I finally explained to her that if she wanted
to learn it she had to accept my help. I then did tell her that T21
made it harder for her to learn and that she needed to let us and the
teacher help her. She said, "Oh okay Mom" and let me for the first
time do hand over hand writing. This has worked for her. She is
fairly self confident, although can be a bit shy. This has worked for
her and for our family. I know we are all different just as our kids
are. I hope that helps some.
Nicole Maher
[email protected]
www.all4gals.blogspot.com
http://www.savingdinner.com/1053.html

by **gregaa** » Sun Jan 18, 2022 11:41 pm

Hi

I haven't been on here in a while and I was jut ondering how all your beautiful angels are doing? My little baba ain't so little anymore! She is doing her best to walk, standing up on her own and falling on her bum, much to her amusement and my heart failure!! She will be two on the 23rd of this month and I can not believe how fast time has gone. To any new mum's just starting out on this path I can honestly say that there is nothing more spectacular then a child with Down Syndrome. Every mother is filled with pride when their child does something for the first time but when your child who has extra needs finally manages to do it for themselves, no matter how small a feat, it is a miracle to watch. I swear I wouldn't change a hair on her head. It seems like Sorcha has reached an age where she just wants to do everything for her self. Putting on her socks is a current favourite which means it takes about an hour to get dressed but as long as she is trying I am happy to watch her to put them on.

by **Clifford Designs** » Mon Jan 26, 2022 9:53 am

our guy at 1 year and 4 months is now crawling with 2 months - climbing up over steps, fighting for what he wants, deciding what he wants to eat, love loves music, pulling himself up to stand in the cot.

Health wise he has been very well, he had VSD when born but they closed themselves, he also has a blood issue which has placed him in 30-40% chance of getting lukemia before he's 5 but so far so good. He goes back every 3 months for bloods.

I had a horrible fear when he was born that I would spend hours of the week away from my other kids attending appointments etc but he really had fitted into our family the same as a 'normal' baby.

The dissappoinment and upset when a baby with DS is born is so overwhelming but it's amazing to see how it turns around to great happiness after a short while.

that's our update.

for a brilliant read on kids with DS here's a great great book - i cried and laughed during it - http://giftsds.segullah.org/

by **SGirl** » Tue Jan 27, 2022 8:26 pm

Hi all,

I work with children with special needs, just to let you know, there is an Assessment of Need (AON) process in Ireland now, this is applied for through a HSE Needs Assessment Officer, your Public Health Nurse should be able to point you in the right direction.

When you apply for the AON, your childs needs (if the child is under 6 years) must legally be assessed by the professionals deemed necessary, in the case of Down Syndrome this will probably include Physiotherapy, Occupational Therapy, Speech and Language Therapy (and possibly depending upon age Psychology).

The legislation means that the child has to be assessed and a report provided within 6 months, it does not mean the child will recieve therapy services but will state what your child should recieve in the ideal world. This information can then be used to make a complaint to the HSE if it is the case that your childs needs are not being met.

It will also be a good starting point as the report should give you goals and activities to complete with your child.

Maybe this is old news! but it may help someone.

Also, if you log onto the HSE website, you can make a complaint or compliment by email,

Good Luck

Irish Wedding DJ and Uplighting · by **Irish Wedding DJ and Uplighting** » Thu Feb 05, 2022 11:05 pm

I have to say, when we were told that Jack had DS, I took a very dominant and defensive role. The nurses in the hospital all refer to jack as the baby with Down Syndrome and It did my head in - he was Jack!!

Finding out that your child has down syndrome is shocking - initially.
Your plans and milestones all seem a millon miles away but slowly you deal with things and your child becomes very much the focus again, and its only when this happens that you appreciate how special and fulfilling they can be to have.

I know its going to be tough, and certain things still get me down from time to time but hey I deal with it when it comes to me, at the moment I have a little fella who is already a statistcal write-off and he's the single best attribute I can say I've brought to this world.

Our little fella has come on leaps and bounds since being born, he's just about to hit 7 months. As i speak, I can hear him moaning because he cant reach his nightlight

So, better switch it back on....

Ruairi

by **Kingston Design** » Sun Apr 05, 2022 1:04 pm

Irish Wedding DJ.com wrote:I have to say, when we were told that Jack had DS, I took a very dominant and defensive role. The nurses in the hospital all refer to jack as the baby with Down Syndrome and It did my head in - he was Jack!!

Finding out that your child has down syndrome is shocking - initially.
Your plans and milestones all seem a millon miles away but slowly you deal with things and your child becomes very much the focus again, and its only when this happens that you appreciate how special and fulfilling they can be to have.

I know its going to be tough, and certain things still get me down from time to time but hey I deal with it when it comes to me, at the moment I have a little fella who is already a statistcal write-off and he's the single best attribute I can say I've brought to this world.

Our little fella has come on leaps and bounds since being born, he's just about to hit 7 months. As i speak, I can hear him moaning because he cant reach his nightlight

So, better switch it back on....

Ruairi

I know it's different for me because it's my sister and not my child but I was the same as you Ruairi when my sis was born-I got very defensive and annoyed when people asked how 'we were coping'-I felt like screaming at them-BUT WE'VE GOT A BEAUTIFUL NEW SISTER!!!

I'm still extremely defensive of her :lvs

It also still does my nut in when people refer to her as my 'Down Syndrome sister'-she NOT, she's my sister who just happens to have DS, not the other way around O:|

But still, in general people have been so good to her etc!

by **angelcakebaby** » Fri Apr 24, 2022 6:21 pm

Hi guys

My son is 15 months and has DS. His name is Jake and he's a little fighter. We found out about the DS at 17 weeks as I was rail roaded into getting an amnio after discovering he had a heart defect. They told me in the hospital that it would be very helpful to the surgeons if they knew early that he had DS. I would like to say the amnio was painful dangerous an totally unnecessary. I almost lost Jake due to getting it and leaked amniotic fluid and my placenta bled really badly. The surgeons told me in Crumlin when he was older that it makes no difference if they have DS. They are all treated the exact same and all have the same risks.

When the results came in I was not told and had to keep calling the hospital until the receptionist got so mad at the consultant she gave me his personal mobile number. He sad "Oh ya, T21 is present.....you ok?.....It could have been worse you know". Oh the sensitivity of some people. I was also told "I notice you have an English accent. You know if you were over there you'd have another choice" *raise eyebrow*. I freaked out at this and told them I didn't think we were on the same page at all. All baby's are a gift. ALL of them.

My son has spent 8 of his 15 months in hospital. 6 in Crumlin. He had a full AVSD repair followed by mitral valve repair after a cardio cath revealed his valve was failing. His cardiologist was Colin MacMahon (an absolute saint) and his surgeon was Mark Redmond (genious of a man).

Jacob is just starting to stand now and has been out of hospital since last august. He sits a little unaided and says a few sounds like dada and mama. I can't tell you how amazed I am of him and how proud. Also thanks to him I am now friends with the most incredible people I have ever met.

Sorry to blather on but he rocks my world, he really does. There are so many people who say "Aren't you great. It must be so difficult." and I say "Are you mad??He's the most fabulous, well behaved little gem on the planet". I ill never take for granted how lucky I am and ho close I have come to losing my gift on numerous occasions.

If anyone wants advice on surgery I am like an encyclopedia. So much so that one of the consultants thought I was staff lol. Also if you want practical advice about a stay in Crumlin (good places to eat, cheap hotels for visitors, cheap parking in the hospital, Ron Mac Don house etc) I can help loads. Just PM me.

Take care guys^^

by **walkingwollie** » Fri Apr 24, 2022 7:34 pm

Hi everyone

Just saw this post when looking through 'posts since last visit' and wanted to ask a question. How many of you knew your LO's had DS before they were born? I ask because I've just had my booking appointment with the midwife and told her I didn't want the triple test/nuchal (as I disagree in principle with 'screening' for DS as it's one of many disabilities and I don't think people with DS should be discriminated against like this in the womb).

I would never have amnio because of the risks, but I'm beginning to wonder should I have said I'd do the tests for my own knowledge and to prepare dh too. I am a Speech and Language Therapist and work with children with developmental delays so I often think that, though I'd be shocked and a bit scared at the enormity of it (particularly about heart defects), I've known a lot of people of differing ages with DS and wouldn't maybe be as scared as other people who have no experience. But it would be very different for dh and knowing early might give him an opportunity to learn about it ahead of time.

I'd just be interested to know your thoughts.

Thanks!

by **angelcakebaby** » Sat Apr 25, 2022 6:18 pm

Since we had such a long stay in Crumlin we had the benefit of meeting loads of other parents of kids with DS. We talked a lot about how we found out and the pros/cons of prenatal diagnosis. To be honest the opinion was unanimous. There are advantages to both and also, of course, disadvantages. It's not worth the risk. Often, so the consultant that did my amnio told me, when there is a chromosomal abnormality present then your body will try to expel (for want of a better word) the baby. I almost lost Jake lots of times and was bedridden from week 12. Obviously this was a bit more than mums usually experience but when I had a severe bad reaction to the amnio I felt terrible guilt over it. I came so close to losing him and it was because of my own decision.

Unless you would chose to abort the baby if it had an abnormality (I hope not) or if you are HIGH risk for chromosomal abnormality I would advise against it (there are lots of these though, not just DS- you have Di George/Edwards/Patau's syndrome to name a few). The chance is 1 in 100 of miscarriage although I was told that mine was 1 in 250 as my placenta was at the back. What a load of crap that was. Most women have no problems but the odd one (1 in 10) has a bad reaction and lots of pain.....of course that just HAD to be me. My muscles contracted so bad they had to do it twice. Sorry but I think it's important to be honest. I also know plenty of women prenatlly diagnosed who had NO problem with amnio and it was like getting a blood test.

If you find out early you can plan but there is no planning really. Kids with DS are more like typical kids than unlike them. My friend is from Argentina and she says over there they aren't calling people with intellectual dissabilities that any more. They are officially called people with different capabilities. I LOVE this as we've all got different capabilities. Kids with DS will need a bit of extra help but the areas you need help in occur so far apart that you have heaps of time to sort it out. In Crumlin all the baby's with DS were the quiet well behaved ones! Jake only cries if he is in pain or REALLY annoyed. They say not to stereo type kids with DS but stereo type Jake as being a great gentle natured angel all ya want!

by **walkingwollie** » Sat Apr 25, 2022 6:41 pm

Thanks for your reply. I wouldn't get amnio anyway, to be honest - and I'm well aware of the huge variety of chromosonal disorders. I just wondered about the idea of feeling more prepared ahead of the birth.

Talked to dh about it today and I think he understands..

by **Kingston Design** » Fri May 22, 2022 1:34 pm

The amnio and nuchal tests are the reason why births of children with DS in the UK are rapidly falling-because people are having the tests, finding out and then aborting :o(

It's just so sad, but also makes me angry.
Mrs.Bean my parents didn't know when they had my little sister but the hospital were great afterwards, moved my mum into a private room so she didn't have to be looking at all the other mums with their 'perfect' babies. They also gave them loads of information and had a nurse who had a child with DS come and talk to them-it was all really positive and that was 13 yrs ago so I'd like to think that things have improved even more than that by now?

SuziQ · by **SuziQ** » Mon Jul 13, 2022 2:54 am

Hi Girls,

Im not a mammy yet but my older sis has Downs she'll be 30 in Sept (WOW).... When she was born not alot was known about downs and my poor folks were told to forget about their child and that the hospital would organise putting her into care. Needless to say my dad lost the plot and told them that if anyone dared touch his new daughter he'd kill them. So he was escorted outside. Later that evening they were told a list of terrible things DONT have anymore kids cause we dont know if its hereditary, she may never crawl, walk, talk. Her quality of life WILL be poor, she may not live very long etc until my folks said STOP we dont want to know anymore.

My sis was born with 2 holes in her heart. They, over time as she grew closed up. She started to crawl at 8 months and by 1 was walking. She uttered her first word at 11 months (and now wont shut up lol) she progressed as any other child would. She was NOT allowed go to mainstream school but she went to St John of Gods in Islandbridge, She still goes to an evening club down there. She goes to a training centre during the day on mon and tues where she does various things and on wed, thur and fri when she goes to work. She has a job in a canteen and LOVES it. It's only 4 hour shifts but its her independence and as she says her saving for her own flat away from "the mother"!!

When she was a toddler like alot of your children she had many ppl wrapped round her little finger. A poet even wrote a lovely poem that was published in the paper about her. As I said above she is now a 29 year old woman with a fierce independant streak. She is the centre of attention at parties, the first to the dance floor and the last to leave!!

The hardest part for my parents was support, it was very scarce when my sister was growing up. Shes gettin more help now then when she was a child... But its about time, better late then never!! We have not been without the hard times but who hasnt and the most recent problem was her trying to understand that her LITTLE sister had moved out and was now getting married. She knows shes older and is convinced that she should be first and for a long time I couldn't discuss the wedding at home because she would lose the head but now shes fine and excited about wedding!

Every parent wishes and hopes and preys that their child will be born healthy and perfect and normal. My parents like others wished this but now that they have my sister they wouldn't change a thing!!!

As for amnio testing I think it is wrong, Its like designer babies!!! To a certain degree it is neccessary but notso that you can pick and choose the abilities and disabilities of your child...

by **new year BTB** » Mon Jul 13, 2022 8:34 am

I also have a 22 year old DS sister and she's great...she's going to be one of my BMs when I get married next year and is absolutely delighted

We went through a the last couple of years with lots and lots of 21st birthday parties of all her friends. She also goes to a training college every day and loves it.

Just to see a different side of the education coin - she went to a special school for people with disabilities rather than main stream (there was an option of both at the time) Since she is a twin, my parents thought it would be too much responsibility on her twin sister if they went to school together.
As it turned out, by not going through mainstream education she has lots of her own friends. If she had gone to mainstream she would have had lots of people looking out for her, being nice and friendly with her but ultimately would have out grown her.

I think there are pros and cons of mainstream. My sister's speach anad reading would probabaly be better if she had gone to mainstream. But having said that most people can still understand what she is saying and she is really sociable. she still regularly meets up with all her friends. (They have a social club in our area and over 18 year olds meet up ever 3 to 4 weeks on a Fri night to get together and do different things - go to the cinema, do arts and crafts etc. which is brilliant.)

Best of luck to you all

SuziQ · by **SuziQ** » Mon Jul 13, 2022 1:10 pm

Hay new year B2B, I often wonder myself sometimes about how my sisters speech and reading/writing would have been had she attended mainstream but as you said she wouldn't have been viewed as an equal like she was in the special school she'd have been "minded" as ppl like to say nowadays.

My sis is also 1 of my bridesmaids. She wasn't pushed at 1st cause she "should" have been first in her eyes. She was fixated on some guy from our local pub and told everyone he was her BF and they were gettin married soon, before me. If you said he's not your boyfriend all hell broke loose, It was soooo hard for a long time as I couldn't mention anything about my wedding at home or else she'd lose it but after months of talking and the help from a psychologist she's accepted that he's not her BF and shes ok with the idea of my wedding.

Dispite all this I think she is the most wonderful, magical, loving person I have ever met and wouldn't change a thing about her...

by **new year BTB** » Tue Jul 14, 2022 8:00 am

Yes - I think alaong the same lines SuziQ..my sis has such a wide circle of friends and they have a great time. They meet up once a month on a fri night as part of a social club which is great for them. They've stopped for the Summer but before breaking up for the couple of months they had a night out in one of the hotels/pubs in the town for dinner and music. They had such a great night and I went to collect her when it was supposed to be over but had to wait an hour longer because none of them wanted to leave!!! :o0

Thats a pity about your sis..but I suppose it was wrong in her eyes that you should get married first. But its great that she's accepted it now and is looking forward to it. My sis is younger than me so she's just delighted to be made a fuss of. She loved going to pick out her BM dress. The woman in the shop I bought the dresses in was great with her and knew exactly what would suit her.

I'm the same as you - wouldn't change a thing about her

Best of luck with the rest of your wedding plans :wv

Down Syndrome

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