My LO has down's syndrome - advice needed

[gde78]

Hi Ladies

I've been on BnB for a couple of years now, since I was pregnant with my DD Ellie-Mae. I'm now having a second daughter, Evie, and she has been diagnosed with Down's Syndrome.

All I'm trying to do at the moment is as much research as I can into the condition so I can prepare our family as much as I can. Although I don't know how badly she'll be affected, she doesn't appear to have any major heart defects (currently the consultant can only find a small hole in her heart) and her bowel all looks normal. This is obviously all being monitored. She's showing signs of bilateral clinodactyly and has a hypoplastic nose and is measuring extremely small for her gestation (her mummy isn't tho )

I just wondered if anyone could help me. I don't know the right questions to ask about this, I don't know what I need to know, I don't know what to expect. I realise I'm really lucky as I have got these next few weeks to prepare, but I just don't really know what to prepare for. Is there anyone who can help? Even if it's something you found out after your LO had been around a while, that you wish you'd known before? Sorry to ramble!

Look forward to hearing back from you x x x

 

[netty]

hiya

I'm sorry I cant help you much but I do know that the downs syndrome supprt website is very good

https://www.downs-syndrome.org.uk/

hope that helps

 

[Midnight_Fairy]

I hope you manage to find some help and get your questions answered x

 

[lottie7]

One of my friends has a daughter (who is now 5) with Downs Syndrome. She is an amazing woman who has set up a support group for parents and children affected by Down Syndrome. Nothing stops her daughter enjoying a normal life, activities, school etc.
If you want me to put you in touch with her by Facebook or email she will have all the answers!

xx

 

[gde78]

Thanks ladies. I went to a respite centre this morning for a look around, and it was AMAZING. They've really helped and given me some people to contact. I think the support is there for our special children, it's just finding it!

Lottie - it'd be great to contact your friend. I'll PM you my email. Thanks!

 

[midori1999]

Hi! Congrats on your pregnancy!

My youngest son was diagnosed with Downs Syndrome a day after he was born. He was 6 in March. He had two small holes in his heart, closed by surgery at 6 months old, and also has bilateral nystagmus (an eye condition, but so far his sight seems unaffected) but otherwise is very well. He is very developmentally delayed and we did decide a special needs school was best for him, but any problems with that belong to other people, not him, he is perfectly happy and isn't at all adversely affected by having Downs.

I found my son much easier than my first two, who were indeed very easy babies. He literally slept constantly and I swear if I hadn't woken him for feeds he would have starved to death! I woke him the first two nights, then wondered why I bothered and let him (and us!) sleep. Other than that, as a baby he was just like caring for any baby, and now he is just my son, I don't overly notice his differences to other children his age, and I am not at all hung up on anything.

I think I am probably more positive than most people can be, but I am generally a positive person. I have always maintained my son is different to what most people perceive as 'normal' and I do not want to make him 'normal', he is just my son and if he isn't worried about meeting developmental milestones, I am certainly not going to worry. I genuinely only care that he is happy, I don't give a jot about anything else.

Life since I had my youngest has been wonderful. I was never really that maternal before, but am now. I wouldn't be at all sad if I had another child with Downs, I don't see it as a negative thing at all. I am very lucky though that my son doesn't have a lot of the physical problems associated with Downs and has never had a chest infection or anything, even after his heart surgery. (I attribute his health partly to him being parked outside my stables in his pushchair whilst I looked after my horses from three days after he was born, nothing like fresh air.... )

If you want to pm me, do so. I am more than happy to pass on my phone number privately if you'd like to chat too.

 

[polo_princess]

Im glad theyve put you in touch with some people who can help

 

[Mindy_mini]

Midori - your son sounds like an amazing little boy and im sure gde will find your support helpful

All the best to both of you

 

[lottie7]

It's threads like this that make me smile. I find it amazing that us girls can all get together virtually and help each other out!
xx

 

[gde78]

Thanks midori. That's a great help. I'll be in touch privately.

All you ladies have been wonderfully helpful. Thank you so much x x x

 

[scottishgal89]

i dont have a baby with downs syndrome but my little cousin was born with downs.
i just thought i'd share that shes 5 now, in main stream school and a right little character.
she learned walk and developed a little slower than normal. she is just learning to talk now and is doing fab.
she was born with a little hole in her heart so had a little op for that and also needed vents put in her ears.
i think her having a brother two years older has helped her loads as she runs around after him and copies whatever he does- sometimes not a good thing!
not sure what else to say just didnt want to read and run.

 

[gde78]

Thanks for your reply. We're hoping Ellie will encourage Evie as they'll be 22 months between them. Glutton for punishment that I am!

 

[angel1990]

all i will say is good luck n be proud and feel lucky to have her in your life! people qwith downs arde the most loving people ever! my 12 year old sister has downs! we never knew till she was born! she does everything normal kids do. enjoy your daughter so much.

pm me if u ever want to chat hun xx

 

[Fabmumof3]

HI there, just wanted to give you my experience. My big sister had Downs Syndrome and my mum says she was a brill baby - easy going and no problem at all (unlike me!). My mum says she wasnt very wuick to speak but communicated in other ways (baby sign language of her own making) and was fully toilet trained by 18 months. My mum taught her to put her hand up when she needed the toilet. Me and her were close in age like your 2 will be and you may find she learns a lot from her sister as my sister followed me everywhere and wanted to do everything i did. My sister had a hole in her heart that got fixed apart from that she is fully healthy. She went to a school for children with additional support needs (this was 30 years ago) but now a lot of children with downs manage great in mainstream school if thats your preference. My sister won Dux medal at her school, went to college for 4 years and has had a part time job for many years too. She has lots of friends and a better social life than me!! lol She has her own bank account and does shopping and cooking by herself. She also travels independantly. My mum says she decided when she was born that she was determined she would do everything to ensure she could do everything to the best of her ability and not 'baby' her or do things for her she was able to do herself. She is also the most loving and affectionate person you could meet (which is quite a common trait in people with Downs). Because of my sister i never had any tests done whilst pregnant with the 3 of my kids because i see it that i would have been blessed to have a child as wonderful as my sister. xx

 

[LoveNTy]

hiya

I'm sorry I cant help you much but I do know that the downs syndrome supprt website is very good
((site URL HERE))

hope that helps

/just butting in here...

I find it odd that the site's URL has "downs" and not Down Syndrome.
It's not spelled downs. :/
I have a LO with DS..and I find it ignorant that a site who is supposed to give proper info/support on DS can't even get the term correct. Anyone else or am I just weird?

And gde78 I'm so glad you found your experience at the respite place so helpful, I hope it continues to help you!!
If you have any questions just inbox me

 

[Fabmumof3]

hiya

I'm sorry I cant help you much but I do know that the downs syndrome supprt website is very good
((site URL HERE))

hope that helps

/just butting in here...

I find it odd that the site's URL has "downs" and not Down Syndrome.
It's not spelled downs. :/
I have a LO with DS..and I find it ignorant that a site who is supposed to give proper info/support on DS can't even get the term correct. Anyone else or am I just weird?

QUOTE]

Soem sites say down sydrome and some say downs syndrome - i think its just pluralised coz its named after John Langon Down the first british doctor to clinically identify the condition. Just like when you say something belongs to someone eg. its laura's book you wouldnt say its laura book. One of the main sites is called the downs syndrome association. My sis has DS and it doesnt bother me which way its said tbh

 

[LoveNTy]

Well the sites that pluralize Down are wrong. LOL
It's called Down Syndrome.

 

[Nic1107]

Well the sites that pluralize Down are wrong. LOL
It's called Down Syndrome.

They're not wrong, they just say it differently. It's referred to as "Down's Syndrome" primarily in the UK. Stoller/pram, diaper/nappy, Down's/Down. I don't really think special needs support websites are just getting the name wrong!

Anyway, my little niece had Down('s) Syndrome and was an awesome kid! Her development was a bit slower than average, but she was at about the size and development level of about a 1 1/2-year-old so she didn't actually seem slow unless you knew how old she actually was (nearly 3), ikywim? She was really funny, loved to dance, played and interacted the same as any other kid and was almost potty-trained although time spent in hospital kind of derailed that. Congratulations on your LO!

 

[soup]

hi sorry i ahve no real advice but just wanted to point you in the direction af a fantastic blog (which i am totally hooked on!) its www.enjoyingthesmallthings.com its written by a mum of 2 whose 2nd little girl was unexpectedly born with DS andit is truely inspirational!