adopting a baby with downs - what is it really like?

[rbmilliner]

We have a child of our own but dh and I would like to add of our family.
We've basically left it too late for another one of our own and as DH was himself adopted we've always said we wanted to go down the adoption route.
We always said that we'd take what we were given and run with it when expecting DD so don't see why that wouldn't apply to a child we adopted only we'd know from the word go what to expect?
Having said that neither of us have any experience looking after a child with SN and are probably looking at this with rose tinted glasses.
Would be really grateful for any real life experiences people have - good or bad - are we being neive, what would be the effects on our DD, what sort of help if any is available -anything. please be candid.

Are you looking at a child with downs syndrome then ? Or is this hypothetical?

Either way you need Mynamenotaccepted. She is a world expert on adopting children with special needs and in particular Downs.
She is an amazing source of knowledge not to mention wisdom and inspiration.

I have an adopted 5 yr old with complex needs along with a long term foster child who is also has complex needs myself but neither have Downs Syndrome.

Have you been matched with a child with Down’s syndrome? If not this is very specific!

Children with Down’s may share some characteristics but like all children they are individuals. Rather than getting hung up on a diagnosis I would break it down further, think along the lines of-

• could we deal with physical aggression
• could we cope with other challenging behaviours
• would we like to adopt a non-verbal child
• could we adopt a child with mild learning difficulties, moderate learning difficulties, severe learning difficulties, profound learning difficulties?
• could we adopt a child with a sensory impairment e.g hearing aids
• could we adopt a child who spends lots of time in hospital
• could we adopt a child who will be doubly incontinent
• could we adopt a child with limited mobility
• how would we feel about our child attending a special school
• how would we support a child to understand boundaries and personal space
• how would we feel if our child had a reduced life expectancy
• could we adopt a child who will never be an independent adult

Down’s is hugely varied and I have supported children that fit into every description above but also some that attend mainstream school, no challenging behaviours etc. I would encourage you to look at the child not the diagnosis. The over arching questions are ‘are we the right family for this child?’ And ‘would this child fit into our family?’.

Sounds like there is someone with very relevant experience so hopefully they will be along soon!

Have too consider the child's needs long term do lots of home work look at secondary issues and conditions, education, SEND local community support and pathway planning. Child placed with same a few years ago, outcome has been very positive still in touch. , is beautiful and very happy, so can work out positive .

Wish you all the best xx

Hi rbmilliner
Yes as flapjack wrote we have adopted 4 with Down Syndrome (sadly one died complex heart defect)
I know you will have thought carefully and you will come to the right decision for you and your family.
Personally it is one of the best things we have done. They are now adults still living with us, every day they crack me up, they are very funny, caring and are a joy to be with.
Yes we have had health problems heart, lungs and epilepsy but you just get on with it.
Education was not a big problem Son went to special school (deaf and epilepsy) The 2 girls went through mainstream schools and both achieved a couple of GCSE'S not A* ☺ but still very proud parents.
Good luck please let us know what you decide.
Do not know if I am the right person as I am smitten.
WARNING Down Syndrome is more addictive than morphine!

Thank you all for your replies.
SFCA thank you for the list of questions, it helps to quantify what we'd be doing in real terms and to be honest some yes some no but SN are a sliding scale and as you it's about the child as an individual.
One thing that comes across is that none of you regret your decisions but can i ask - and please don't answer if you feel these questions are too personal - did any of you have experience of looking after anyone with special needs?
And do any of you have children without special needs and how did adopting a child with SN impact on them either whilst they're young and on into adulthood (if applicable)?

I've worked with people with a wide variety of different diagnoses and each one is an individual so although you can say that someone has a specific diagnosis such as Down's syndrome it doesn't tell about them as an individual. For example I can tell you that people born with Down's syndrome often have congenital heart problems, learning disabilities, have a shorter than average lifespan and their risk of getting early onset dementia is much higher. However that doesn't tell you that I learnt most of my makaton signs from supporting them and an awful lot of other things just by talking to them about their interests.

For me, because I've seen the reality of care homes as a member of staff, including high levels of staff turnover, the reliance on agency staff and poor management, I decided that I wanted to adopt a child who was likely to be able to live independently as an adult. The idea of having to fight to get my child the support they need and worrying about what will happen when I died was not for me. I know of people with learning disabilities who've ended up in old people's homes, living with people much older than them and very limited access to the community.

We have 3 birth children ( now adult ) and we are foster carers. Our eldest has Aspergers so some experience but 12 yrs ago we took on a baby with v complex needs . It was a steep learning curve because he was medically fragile. He has been with us ever since and 4 yrs ago we took on a baby with v v complex needs of a different type so it was a steep learning curve all over again. He is now adopted and we love our life. It has challenges for sure and it is hard work but just so rewarding.
As for our birth kids well they took it all in their stride and love their little brothers. The biggest issue we
had was when our younger daughter hit teenage years. She was mortified by our foster child's behaviour because he can be challenging and people stare at us when we are out ( he also looks abnormal though nowhere near as much as when he was little so that doesn't help the embarrassment factor ).
She is shy anyway so hated the attention but it is something you learn to ignore v quickly imo.
We have never been able to adopt our fc ( long complicated legal drama ) but our kids are desperate to see him an official part of the family so it can't be that bad !
Anyway I am jealous as it all sounds v exciting though lots to consider I know. I would love to know your decision if that is ok ) if not totally understand ).

This is going to sound strange but i have a (birth) child with a mild special need and the thing that has hit me is I have to parent him all through adulthood too more than a child without needs. I suppose i am saying just consider not only am i the best family for this child but also am i the best family for the adult they will become. So many hard decisions like who will advocate/protect my son when i am gone. Your possible adopted child already has a sibling. Are their cousins, younger uncles, great potential godparents.

Do remember that YOUR decision will have a life long impact on your birth child who has no say in this.The baby you adopt will grow into a teen and then an adult. As you get older you may be unable to deal with them. Your birth child (and their future partner and children) will find that that role falls to them.

I have already told our birth children that we do not want them caring for their brothers if we should die before them ( which is by no means certain).
They are happy to help in terms of decision making regarding their care but it was our choice to go down this road so we do not want them to take on the physical care side of things even if they want to ( which they don't) .
But the boys would have someone to visit , deliver Christmas presents etc and hopefully make sure they are cared for properly.
So it doesn't mean ops birth child would have to care for their sibling for life ! There are other options.

I adopted 2 children with Down’s syndrome. Both as young babies. Neither child was supposed to have significant health needs, but unfortunately my daughter did develop significant issues. She died in May as a result of complex heart, lung and blood issues. She was 9 years old. She had spent much of the last two years in hospital. This was never what I planned when I began the adoption process. So whilst I don’t regret adopting her I would always advise people to be prepared for far more issues than you are initially told about. I would also say that you need to assume that any child with DS, even if adopted as a baby, is still likely to have experienced trauma, neglect or abandonment which may add to their additional needs as they get older.
Adopting a child with DS can be very rewarding and as I say I will never regret adopting my children BUT do go into it with your eyes open and expect more difficulties than you are warned about.

We have a very similar set up to flapjackfairy minus the birth children!

When identifying guardians for our son we have been very open eyed about the fact they will likely be advocating for him in terms of the best residential setting rather than actually taking on the role of caring for him. This may sound selfish but the needs of our son are such he is likely to have spent his life in hospital, hospice, residential anyway. As Flapjackfairy says at least this way he will still belong to a family who can love and visit him.

If myself and my husband live long and healthy lives we are extremely likely to outlive our son. This is very sad and something that we dread but ultimately as PPs have said I would not ever regret him being our son.

I think as I mentioned in my previous post for me it is about being aware of what you and your family can manage as a family. We have fostered lots of children with non-verbal autism and extremely challenging behaviour, as much as we loved this it was exhausting and it was much harder to integrate the children into our wider family. Adoption is a life-long commitment and it would not be right for our family (and therefore the child) to adopt a child with these needs.

Sorry this is such an essay! The last thing to say is that when adopting babies there is so much developmental uncertainty whereas adopting a slightly older child comes with its own challenges but more information too.

@Jlyca
I’m very sorry for your loss

Yes @Jlyca v sorry for your loss x

Sorry @Jlyca I also meant to say I am sorry for the loss of your daughter 💐

Thanks all

Thank you all for answering so candidly especially @Jlyca, it must have been difficult to put the down in words and I'm so sorry for your loss- thank you

You ask did anyone have any experience of SN children, yes I did, I was a paediatric nurse/midwife working on NICU. I was actually at his delivery, he was quite poorly and was on NICU for a few weeks and when I told birth parents he would be soon ready for discharge they said they would not be taking home, the rest is history! At the time I had no intention of stopping work I was keen on climbing the professional ladder.