Down syndrome after birth diagnosis

[Whyme210]

Hi there

I am sure you all remember me from Feb/March when i started a thread that I was suicidal after down syndrome diagnosis.

Father has left me and him and his family through the mental health issue in my face even though ive been declared mentally fit and that ive had normal reactions to the diagnosis.

He has tortured me in my darkest hours instead of helping and his mother enabling him when i never done nothing to these people before. Myself and my daughter needed them more than ever but i got abused instead.

I am now left rearing my baby alone in the country side with no help from them or my own family or friends monday to friday and father takes her weekends and lives his best life all week travelling away all the time, taking drink and drugs and then at weekends his mommy tells him to go out drinking with his friends and shel mind the baby and she told me it was none of my business if she minds the baby and he drinks 7 days a week told me i wasnt getting my own baby and keyed me a way from her. With him laughing saying im just a danger to her anyway ( far from the case ) i had to phone police to get her back. They are actually demonic people in my darkest hours. He was the one who fought so hard to take her home. I knew it would be left all on me eventually which is why i was so suicidal at the thoughts of my future. I didnt think it would happen this fast. All his promises of not abonding us and giving up his life for his baby girl went out the window fairly fast.

I am still traumatized this has happened to me. Angry it wasnt picked up and that I wasnt given proper healthcare ( they were so many failings) they said looking back at the pregnancy in retrospect that it was obvious but it wasnt at the time. ( that was just their complete failings nothing else)

Currently i have a strong connection with the baby. Since its just me changing every nappy every bottle feed every appointment with her 5 6 days a week. I love her. But i am still absolutely terrified of the future when i dont know how badly effected she will be with the down syndrome. Not everyone is able for that life and i know its certaintly not me. I think its worse that i was forced to bond with her because it will be agonising down along the line if it comes to a stage ill have to hand her over to her Father ( he just wants to leave the care to his parents while hes at work and pub all the time ) but thats what they are asking for and i was told legally if thats what they want thats what will happen and thats the end of it. Even though they are old and it shouldnt be up to them.
I know they are higher instances of autism with down syndrome and if that happens i know i am fecked.

Because i definitely have undiagnosed autism and have severe sensory issues and if the child starts stimming it will freak me out beyond words that i can describe. Any repetive noise, whether it be a toy that doesnt have an off button a car alarm ( any repetive noise out of my control) sends me into a state of panic, my heart starts racing i start sweating and i could potentially start crying. I had a special needs cousin and he stimmed alot and grunted and shouted all day. I would have to leave any time he came visit because after 5 minutes i would just cry my eyes out. I am now in my late 20s and i am still the same around him and still cant deal with noises out of my control. Its clear as day neglected autism i didnt have the greatest parents growing up instead theyd just laugh at my sensory issues and just say theres something very wrong with that child and that was it.

I just always wanted a child and a family of my own to have the love i longed for my whole life.
Now i have been given my worst nightmare with the down syndrome diagnosis and noone understands what im going through only that i have no other choice but to deal with it and thats that but i know in the future if shes low functioning and a bad case that i will 1000 percent know i will not be able to handle it. Its not built for everyone. My future terrifies me. I have ptsd from a severely traumatic past. All i had to get me through in life was thinking i would have a peaceful and loving future with a family. A day where peace would come. I dont have that dream or hope to hang onto anymore.

This is killing me in every way it could. I didnt deserve it to happen and i should have been given the choice. Even if the most pro life person walked my path in life they would understand that this was a trauma i just did not need nor deserve

Just praying she will be okay. So far theres no health issues. But its the mental side that i am absolutely terrified of.

This sounds so tough op, I didn’t want to read and run. I’m sorry your family and friends are not being supportive. And even more sorry the father and his mother are putting you through this. Can you find out about some possible supportive agencies through the hospital? For example support groups for parents with children that have downs? Maybe some counselling for the trauma you have suffered? It’s awful that the future seems uncertain to you now and that would contribute a great deal to the mental load you have to carry. Have you reached out to family and friends at all for support or do you feel the relationships are not there to do this? I also think you should seek legal advice regarding your custody situation and perhaps consider formalising your arrangements to avoid them trying to not return your child to you. I don’t know much about it but I would hope there may be some form of free legal aid you might be able to avail of, I know some charities can be great for information regarding custody and legal affairs.

OP that sounds so tough.

Have you got contacted your local council to see what help they can give you?

There’s a great organisation called HomeStart that gives practical support to new mums, there might be something similar in your area.

Legally his parents can't take your baby away from you! She's your baby. Try and go to court and get formal contact put into place.

OP you sound as if you are still massively grieving the fact that she has Downs.
You are also catastophising a lot, imagining all sorts of possible negatives.

Is there anyone you can talk this through? For your own health and your connection with your daughter, you do need to move on past that and accept her and start enjoying her.

Every Downs kid is different, some do need a lot of support, but some don't.

You do need to get your custody arrangements put in a legal document, so that you can stop worrying about him taking her from you. What he does when he has her (so handing her to his mum to babysit) is up to him, as long as she is safe and looked after

Babies/people have Down’s syndrome, they are not Downs babies/kids etc.

I’m really sorry for you, I know how hard it is in the early days with a baby with Down syndrome. Have you looked at Positive about Down syndrome? Join this group (hopefully the link works!)

https://www.facebook.com/groups/padsnewparents

They support with everything, they can even offer counselling sessions to help you come to terms with the diagnosis. They will send a new parents pack which directs you to support. I know it says ‘positive’ in the title but we all know how dark the early days can seem and they want to support in tough times too. They will also speak to your hospital if your care wasn’t what should be expected and try to improve that going forward too.

In terms of your husband, get a good solicitor, get custody agreements in place. Take one day at a time and I promise it will get better. You can’t look too far ahead at the moment, I still can’t and my DD who has Down syndrome is five now. Just one step at a time.

I read your last thread and I'm so sorry its so tough for you (we also had a post-birth diagnosis).
I think you really, really need to find some external support. Do you have a good health visitor? A social worker? They should be able to refer you for support, including Portage for your baby and sign post you to local services. There may also be a local special needs nursery for the future which can give you some respite.
There are local Down syndrome groups will can offer some really good support (that's where my support came from). I couldn't cope with standard baby groups but did go to a special needs baby group which helped.
I also know a few children with autism and Down Syndrome and it's not really that common and they don't seem to present with typical autism, their challenges are more around communication. I know it's hard not to worry.
Please keep messaging on here, there are people around who can advise.

Babies/people have Down’s syndrome, they are not Downs babies/kids etc.

I apologise, I do known this and I am kicking myself that wrote it wrong. I am so sorry.

Sending hugs OP
I second PP advice about joining groups for parents in the same situation (completely unrelated severe health issue personally, I’m not comparing of course, I just found I was unable to connect with people who hadn’t been through exactly the same, so I would really encourage the support groups for families)