Would you adopt a child with possible PWS if...

[pinkdolly]

Ok it's not really adopting, but long term fostering of my two cousins. The youngest 1 aged 22 months has developemental delay. She is 6-8 months delayed. Prader-willi sydrome is being queried, but it could take another 12 months to get a diagnosis.

I already have 4 children aged 8,7,4 and 19 months. There is no one else in the family who will have these girls. So if we dont go through with it they will face a lifetime care (the SW are not looking to place them for adoption).

Her condition could be down to PWS but the SW also said it could be down to the neglect and lack of stimulation she suffered from her parents.

Would should we do. I onviously have to think of my own families needs as well as if I can meet the needs of the girls. But we are their last hope of keeping them in the family.

Thanks

I would do it because if I didn't I would feel my grandmother would be spinning in her grave (long story, but not allowing children from the family to go into care was one of her 'things') and I couldn't live with myself.

Not sure what you're asking here though, - everyone will make their own choice for this sort of decision.

Even if she has PWS then a loving home would make an enormous difference.

I think what you'd be better asking is what is involved in caring for a child with PWS? If you can get a good picture of what you'd be committing yourself to you will be better equipped to make this decision.

Don't take these children on because you ought to do it. Take them on if you feel like you want to do it. A lifetime in care isn't necessarily worse than a lifetime with family who felt obliged to take you on. Foster parents can be wonderful although I know there are no guarantees that they'd be happy either way.

I hope someone with an older child with PWS comes along soon to give you an idea of what the future could hold for you if you took them on.

Can i ask a question - would you be asking this if there was no diagnosis or possible diagnosis?
I think you first have to ask yourself if you can cope with 2 more children - emotionally, financially, logistically. Do you have a good support network? That's the first issue really.
If you were going to have more children yourself, would you say to yourself i'll only have more if they are going to be fit and healthy and no 'trouble' at all. As you will already know, you love your children as they are and they are probably all very different with different needs.

From my undrstanding Pw is often dx when there younger dye to floppy poor feeders etc maybe try finding out more about PW then decide but decide honestley how you will cope with extra hospital visits ,physio ot etc .Don't think that any of us will deny that our children are harder work even just juggling appointments

But then he is my son and Iove him ,if was me I would say yes but then know what I'm getting into where your going to have to hit the ground running.

As aunt evil said would you be questioning if the young child was nt whether you could cope but then it is better to ask yourself

Why wont sw look into adoption?

The girls mum is still on the scene, they said they wanted to closely monitor the fostering placement. I'm not sure if they think there might be a chance of them returning to their mother at some point. But from what I gather if you adopt then the children have to cut all ties with their birth family.

Saintly I do feel very much as you have described, I may not have met them but they are my family.

Auntevil- yes we have a good support network and coiuld cope emotionall y and physically and finiancially (with the foster allowance) and no if I had had more children I would love them whatever regardless of their abilities/disabilities.

al1son- I am doing a lot of research into PWS to get a clearer picture, but of course it still might not be that, it's just a stab in the dark at the moment.

Agree with maryz perception. You are obviously keen but worried. The early years are so important for development whatever additional needs a child has. If you felt that you could do just that, you will have made a huge difference to the children and their longer term prognosis. It doesn't have to be a lifetime committment at this stage.

I have a son aged 6 with a PWS "like" syndrome so if you want an insight into living with a child with the condition I am happy to offer you any info I can.

My son has lots of other complications but has every PW symptom clinically and attends a PW clinic at Yorkhill hospital so I do know the syndrome inside out. I can give you an honest view of what affects it has.

I admire you so much for even considering this - even if they had no special needs, you must be a really caring person.

My DD2 has PWS.

Long term fostering of any 2 siblings will have a huge impact on your family, and if the child does have PWS then it will add extra dimensions to the family. If you have the financial, emotional and practical ability to help then they would be lucky to be placed with a loving caring family.

If they are querying PWS I don't understand why a diagnosis would take 12 months. It is diagnosed by genetic testing using the child's blood and results come back within a couple of weeks. Parents blood is useful as it can show which type of PWS the child has (assuming a positive test) as there are 3 ways of PWS being genetically expressed.

Just a quick ps, adoption these days is likely (unless there are issues of risk) to want to maintain family contact, especially if there are supportive family who want to be involved.

Cutting all ties unless there is clear ongoing risk is very very unusual

If you are able to use some of the fostering allowance for a mother's help type person (who can drive) then maybe you will be able to manage. Do you have physical room in your house for six children? What does your DH think about it all?

Another thought, would you be registered foster carer, or kin-ship care? if you go through assessment process to become foster carer (its very intrusive) but support financial and otherwise is more available, kinship care, can be a cheap option for the local authority...

you are still caring for them either way, but rules /guidance are tighter but more support is available for F/Cs, local family placement social workers will be able to explain. (they are different from the social workers for the kids).

My DS 2 has PWS. He was diagnosed at 5 weeks old. There are some classic symptoms at birth and I would be surprised if a diagnosis had been missed still at 22 months of age.
As Sidge says the blood test doesn't take long.
Also it is important to get a diagnosis and if it is PWS the child will need growth hormone treatment.
Have a look at the PWSA Uk website. They do a lovely booklet called 'Our Babies and Children' which really helped me feel more positive about my son's syndrome.

Chorlton - hope you are all well

Sidge - how old is your DD with PWS? I don't know many other families out there

Hi Hellenbach - DD2 is 6.5 - pic on my profile

Feel free to message me if you want to chat more! I occasionally post on the PWSA-UK forums but not often, and don't really know many other families living with PWS.

Chorlton - I think we may have 'met' before on the old PWS forum before it moved to it's new home. How is your DS doing?

Hi Sidge, my DS is doing well thanks, he's thriving at school. Got a few ongoing medical issues but he's an extremely happy boy and I am so proud of how well he's coming on.

I wondered when you posted if I might have 'met' you, as you know its so unusual to meet PWS families, and I notice they are the same age.

Got to go for some more genetic testing, got a meeting next week to discuss this, so maybe we'll get some more definative answers. Not sure what they are thinking, just got a letter from genetics out of the blue.

How is your DD doing?

Sorry for taking so long to get back to this thread.
It was a lot to take in in court last work, but the judge said something like we needed a full f1 assessment as kinship carers for the children. I'm not sure how this will affect us financially as I thought family members would legally be entitled to the same financial help as non family foster carers.

We do feel as a family that we have a lot to offer these children. regardless of their difficulties/potential difficulties. I have been reading up on PWS and one of my concerns is that it says that some children can become violent at times. And of course my natural and right reaction is to think how this would impact my own children.

I recieved a little bit more information regarding the little one.

She was assessed in december 09 and was said to be 5 months delayed, at that time she could not sit up. She can now sit up is crawling well and beginning to cruise. She struggles with eating, her tongue protrudes constantly and there is an extra pad of tissue in her gums. There has been some reports of trance like activity. She was not very active to sound during the assessment.

They believe she has moderate global developemental delay and non specific distinctive facial features. Some base line investigations have been carried out including genetyics and refferals are being made for audiological and ophthalmic reviews. She will be seen in 6 months for a full Ruth Griffiths assessment, and then they will consider a referral for a genetic opinion.

Does this sound like a familier story/sequence of events to anyone?

Could she have fetal alcohol syndrome?

It's hard to predict challenging behaviours - all children with learning disabilities are at and increased risk of developing challenging behaviours but some never will. Environment can help a lot (but in some cases is not the whole answer).

My son can be loud and shouty and hits himself a lot (usually in the head) along with doors, windows etc- he certainly has challenging behaviours - but he has never gone for his brothers, not once and I don't think he would.

You are right to think about it, but I'm not sure you'll be able to be given much of an idea in your individual case.