Down Syndrome Diagnosis

[Naomi40]

Hi there,

I need some help. Two weeks ago I found out our baby has two heart conditions avsd and tetralogy of fallot. Then a week after found out he has downs syndrome. I'm devastated, worried about the future, anxious and grieving for the child I thought I was having.

I have read a lot about peoples experiences. Many of them positive. But am I just getting snapshot of what life could be like for some people. I want some reality. I need someone who has experienced this and can tell me honestly what it's really like on the other side.

If feel like I've been reading examples of people who were better placed to cope with DS. ie good income, living in a country with great resources, secure housing. I live in the UK and the prospects are not looking good for the future in terms of resources.

Please. If you have had this experience. Please write me. I'd love to hear from you.

Bumping for you, I hope you get some replies. FWIW some friends have a child with DS, living in the UK, and they’ve had lots of help and support from the council.

Thank you @onemoremummy

Hi there
I have an 8 year old son with DS and I’m U.K. based. We didn’t know about the DS when we had him and I was devastated when we found out. Looking back now, I feel a bit silly, because it’s nothing like I expected.
I will say he only had a mild heart defect which resolved itself and no TOF but I know kids who have had surgery for both and they are just fine.
What’s life like? I’ll start with the negatives. Yes you may have to fight for support with services and schooling etc. My son is in a mainstream primary with full time 1:1 and he has both speech therapy and OT provided. It’s possible to secure good support but you may need to push for it. This is the main negative. There is help out there to overcome this.
The positives: The LOVE and the pride. It sounds like I’m making it up but you can’t imagine the love you have for this kid. My son makes me so proud every day. He also makes me laugh because he has a wicked sense of humour. He talks, he reads, he writes, he swims like a fish. What’s life like? I think it’s all about your attitude. We don’t let it define him and it doesn’t stop us. We still holiday abroad (something I bizarrely thought we would never do again). We are a happy family and my kids are incredibly close.
Sometimes things are hard. Like when he doesn’t get a birthday invite but I have a daughter with no sn and sometimes things are hard with her too.
We as parents are sometimes accused of painting a rosy picture of DS. I don’t think we are, it has just had such bad press for years, it’s important to redress the balance. I would class my son as average in terms of cognitive ability for DS so there are higher achievers (and lower) out there. One thing I would say 99% of parents have in common is that they love their kids fiercely.
I hope that helps. x

My little boy is almost 4 and has ds. We were told at 12 week scan we were ‘high risk’ but never had the amino so didn’t find out until birth that he did infact have downs! I cried from my 12 week scan right until the birth as I was so worried about the what ifs but I can hand on heart day as soon as he was born and I saw his face all those worries disappeared! He was the easiest baby, we’ll in comparison to his brother, he self settled, he slept all night, he was/is fab!!! He has a small ASD but as it stands he hasn’t needed any ops or medication, he will need an op at some point in the future but no one is overly concerned. He has no other health issues! I had met all his mile stones with a slight delay although communication is an issue at the moment and although he isn’t talking yet he is finding ways to let us know what he wants and needs! We have a lot more appointments than other kids and that has really been our main issue as it’s a lot of travelling back and forth to hospital and I have to get my parents to watch my other son to make it easier! If I was given a choice to take the Down’s syndrome away would I??? I really don’t know! I’d love to be able to hear him chatter and tell me about his day but he is the cheekiest most affectionate boy I know and I don’t know if he would be quite as charming with out the Down’s syndrome! Sorry if it has been a rambling post but I just want you to know that yes you will have your struggles but it really isn’t as bad as you are imagining right now and I know because I imagined the same things!

Oh and congratulations 😁😁

@ KB8219 and @ Kapoww Thank you soo much for your response. I really do appreciate it! I wanted an honest account and you both gave it to me. You both adore your children. It's so lovely to hear. Thanks for the reality check.

I forgot to mention we are not high earners and I have not gone back to work since his birth so I do rely on Carers allowance and tax credits! We are fortunate enough to live in a lovely area and live in a property owned by a housing association which is of a very high standard! We probably could benefit from private SALT etc but it’s really not an option unfortunately but I don’t feel he is massively missing out without the extra help! The main thing is you and your partner accepting your babies diagnosis and loving him as much as you can! your journey will be different from mine I’ve no doubt but you will feel love and pride like you never imagined!

@Kb8219 Thank you for sharing this. Finances was one of the things that worries me. So much to think about, but this really helps. Thanks again!!!!

My son was awarded DLA thankfully which means I can claim Carers allowance and it puts us on a higher threshold for tax credits so we are not living on a shoe string! DLA is a minefield and it is something you may have to fight for! There is a Facebook page called ‘the future of downs’ it’s all parents/Carers/family members of people with downs, people are always happy to answer questions or point you in the right direction and you may be able to find people from your area for support! There are always lots of really lovey posts and pictures!