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Advice please! AC learning difficulties/disabilities

33 replies

insmithereens · 25/01/2018 18:19

Hi all,

Looking for advice from anyone with any useful/relevant experience please.

We're matched with a sibling pair. Met the kids & medical advisor & certain things came to light we hadn't been told previously:

-Doctor says v. Likely FAS & Kids both have number of facial features

  • BM extremely low (lower than borderline) IQ
  • some serious mental health issues which could have genetic ramifications suddenly get thrown in the mix too.

The kids are lovely & we are trying to weigh up whether this new scenario is still possible for us - bearing in mind we have no experience of supporting children or adults with learning difficulties or disabilities & last week we naively thought we were matched with two healthy NT kids. But I feel this happens a lot with adoption!

I'm hoping to hear advice from adopters of children with this potential level of need. How have they progressed through school & into their teens? Without any diagnosis is support still available? Have they been able to live independently? Would you do it again? Any other advice would be hugely appreciated as we have to make the right decision for the kids & us.

OP posts:
bostonkremekrazy · 25/01/2018 19:45

hi - we have 4 adopted children with disabilities.
2 are diagnosed with FAS. 1 is likely FAS. BM like yours had very low IQ and we have MH issues on both sides.
We've parented the older ones for 10 years now, our little ones are preschoolers.

Our experience across the 4children under the umbrella term FAS includes -
visual impairment
hearing impairment
hole in the heart
heart murmour
fused fingers/toes
severe swallowing problems
severe reflux problems
speech & language problems
learning difficulties
severe behavioural needs.

Do you know if they have any medical needs - or is it just the facial features and a suspicion of FAS. It could be that they have FAE - fetal alcohol effects.

FAS is a huge spectrum, and I've met others who have almost no traits apart from facial features....or no facial features but severe behavioural needs, or learning needs etc.
Behavioural needs in FAS are much more common in girls than boys, and rear their head around age 5-6 when school becomes more like work than play so the info out there says.

What kind of support are you looking for? do you mean practical or financial?
The FASD trust is out there - but has just frozen all local support groups at present.

Our children will realistically never live truly independently I don't think. They will always need support to manage money, to plan ahead, they are unable to process 'what do i need to do today?' at present - and are developmentally 4-5 years behind their peers.
Not sure if our pre-schoolers will fare any better than our older ones.

If I could do it again.....honestly? No i wouldn't.....but we had no idea of FAS when we met our kids all those years ago, and no idea that 8 years later we would be asked to adopt their baby siblings. It has been harder than I ever thought it could be, lovely yes, they are wonderful children, but it is hard hard work.

insmithereens · 25/01/2018 21:39

Hi Boston,

Thanks for your honest response. You sound amazing, really you do.

As far as we know there's no known health needs yet.

I guess the support I meant was in school & as adults. Based on our current situation (which will obviously change) we don't qualify for any support from SS & we'd be relying on whatever help they'd be entitled to by state schools & then later in life, IF they couldn't work or live on their own - what happens when we're not around anymore to support them

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dimples76 · 25/01/2018 22:55

I think that It's terribly bad practice that their difficulties and BM's background was not mentioned at the start of the linking process. During the first phone call I had about my son I was told that both BP had learning disabilities.

It's too early to say in my boy's case what the future holds ( he's 4.5). But I went into the process expecting to adopt a child with SEN and although his health problems have been worse than I had anticipated developmentally/educationally he is faring a bit better than I had hoped.

It definitely is parenting plus. My son has about a dozen hospital appointments a year. I have just had to appeal against the LA's refusal to assess him for an ECHP (fortunately they have now conceded)

I receive adoption allowance (as considered hard to place) and middle rate DLA for him. My son does not have a diagnosis other than global developmental delay - you can still access support/funding as they are based on need but I think it can be simpler with a diagnosis in place.

Are they having any therapy/interventions now or are there no concerns about development? When I first met my son he was 18 months and had and portage sessions.

insmithereens · 25/01/2018 23:08

Hi Dimples thanks for your response. Sounds like you are doing a tremendous job of parenting your little boy!

At the moment they are meeting their developmental milestones but the doctor told us to be wary of thinking this means everything is ok. He said issues will likely arise as they get to school age & they will steadily struggle more as they get older & the gap between them & their peers widens.

We didn't go into this with the intention of adopting SEN children but knew there were big risks. We've really fallen for these kids tho & have gotten everything "ready" for them. Does feel hard finding out this additional info at this late stage but, if it had come out only a few months later they'd be ours & we'd accept whatever happened. I think we just fooled ourselves into thinking they'd be ok so now it's really hard to accept the reality. Part of me wants to go for it still but the other part is so scared that we're not prepared & unequipped to support their needs.

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comehomemax · 26/01/2018 09:39

OP, I think you should hear warning bells about why the LA haven't raised any of these issues before now. They are absolutely fundamental and should have been in the children's paperwork from the go. The children's LA need to be discussing and agreeing now what support you will receive - the fact they've not actually raised the issues with you till the paediatrician did suggests you may end up facing issues alone in the future

insmithereens · 26/01/2018 09:55

Hi Comehomemax, thanks for your response. The LA still don't seem to acknowledge any issues here & keep maintaining birth mum said she was sober so no FAS. I think you're totally right & we know that if all of these details had been put out there in the first place we would not have gone further but now we feel really invested - it's almost as if the LA knew that would happen. Feels very underhand & as you say speaks volumes about how unhelpful they'll likely be long term.

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Twogirlsandme · 26/01/2018 10:18

This is so difficult and I think some LAs do this deliberately so you are already invested in the children.
This is a massive decision and will have ramifications for the rest of all of your lives. It's a decision only you can make and it's hard not to be swayed by emotions.
Good luck with your decision.

bostonkremekrazy · 26/01/2018 10:25

Our situation is slightly different as we knew of the older ones visual & hearing impairment, & behavioural issues before we adopted them. We went ahead and had good support from the LA inc a guaranteed AA till they are 18.
The other diagnosis came over the next few years and it all started to make sense when FAS was looked at.
Again the LA have been great in their support.
The babies arrived and were diagnosed FAS, but SW and us knew this would be the case. We have AA and support if we need, but we actually prefer that the SW leave us to get on with it now....we call if we need and they help if they can. We are happy with that.
Many Bmums say they are sober...of course it doesnt mean they are.
Trust your gut.
If you dont wish to parent children with disabililties long term you do not have to.
You will be heartbroken backing out now, of course you will, but those children need parents who can meet their needs for life.
I would have a frank discussion with SW about what their plan of support is....and go from there.
Good luck.

insmithereens · 26/01/2018 10:28

Hi twogirls, you're completely right & it really is an awful position to be in. We'd been encouraged to get ourselves ready, decorate bedrooms, buy everything, tell all our friends & family. It feels very much like they're already our children & if they were BC (or already AC) & we found out that had severe learning disabilities we'd get on with it & make the best. It's a heartbreaking decision to have to make (either choice) & we're questioning how the LA could match kids without looking at their genuine future needs.

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insmithereens · 26/01/2018 10:30

Thanks Boston, we've asked about support & they've basically said 'no known significant health needs means no support'... I'm sure we can mentally & physically step up to the challenge. We just have no idea what the financial implications will be long term both in education & adulthood.

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fasparent · 26/01/2018 12:31

All children with FAS FASD are effected in different ways no two are the same, Think one has too make an informed decision looking at both the Positive and negative's.
Here are a few links.
Department of special needs education Mother and daughter speeking about FAS FASD mother has 3 Adopted children with conditions and is a
Consultant Social Worker. See Modular 4.3. resource 33.
A must have too understand children effected with FAS FASD
Google "Building educational success for pupils with Foetal Alcohol Spectrum Disorders . By Mary K Cunningham. the best of all sites by far.
Most you read in UK and afar are a replication of information from these resources which have been around for many years 25 years in our case.
Hope all links work not very good at this.
Wish you all the best.

ALLIS0N · 26/01/2018 16:14

I suspect, as you do, that you have been manipulated by your agency. Which means you should assume that there will be little support from them now and in the future. If you do go ahead with these children, I advise you to permanently Foster them and don’t adopt. That way your children will get much more help.

Don’t discuss this with SS, just wait until the children are placed and see when you feel that the situation is stable enough for you to make a decision about legal aspects.

In general, it’s easier to get help with a diagnosis than without one. And easier to get help for physical and learning difficulties than emotional or behavioural problems. Adopters tend to get blamed for the latter, especially when the children didn’t have problems ( supposedly ) before then came to you ( like these siblings ).

Can I stress I mean “ easier “? It’s all relative. It’s never easy to get help for SN Kids, you have to fight all the way for every bloody thing.

On a practical note, can you afford for one of you to give up work for the next 10 years or so ? Because that might well be what’s needed.

insmithereens · 27/01/2018 00:08

fasparent thank you so much for sending all the links it's really useful.

And yes Allison I think you're right & thanks for your suggestions, again really helpful.

Still a bit lost but feel better equipped to think through the reality of our situation now so thanks everyone

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fasparent · 27/01/2018 01:33

Insmithereens Regards support Gov After adoption funding is supposed too be available for children suspected of FAS issues this is over and above ring fenced amounts LA's should be aware of this would ask them for full details . support should be long term.
See // look under support (after adoption ) have too read it carefully as only a one liner. Perhaps it is portrayed this way
for reasons stated.

fasparent · 27/01/2018 09:44

Sorry meant too say LA's Are allowed too match funding from Adoption fund of up too £30,000 for children with long term pacific SEN needs , so actual financial support would be far greater than this, this is used too buy in services and support, seam's a lot but is far more economic
for LA's long term.

insmithereens · 27/01/2018 10:19

Hi fasparent, so this is support that doesn't need to be agreed prior to the placement with us? At the moment the LA seem to be going against docs saying 'no evidence to suggest any alcohol involved' doc saying opposite. Feel just their inherited IQ alone would mean they had mild/moderate learning disability - would they get support for this alone? If FAS symptoms on top can see how much they'd struggle without help. Thanks so much again

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bostonkremekrazy · 27/01/2018 11:16

Please do not rely on this after adoption fund.
It does not apply to wales or if the children come from wales.
The government are now trying to reduce the amount per child.
You have to fight tooth and nail to get it.

You would not get support for children with 'parents with low IQ'. This would apply to lots of LAC as it would be a factor for them coming into care sadly.

insmithereens · 27/01/2018 11:24

Thanks Boston. I'm aware generally re low IQ being a factor but if it is below borderline where they are declared as having a learning disability then surely this is different?

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bostonkremekrazy · 27/01/2018 17:32

Our birth mum had IQ below 70. Went to a school for SEN. Barely factored on SS rador i'm afraid. It doesnt determine the outcome for a BC, it just can be a contributing factor when coming together with other contributing factors.
It sucks I agree.

flapjackfairy · 27/01/2018 17:56

I would be v wary of taking these children and expecting to negotiate support post placement if they are unwilling to commit to an adoption allowance up front . We adopted our foster child who has extremely complex needs and we insisted on an adop allowance non means tested and guaranteed until he is 18. It is written into the adoption order.
Are they struggling to place these children ? Lots of people will be wary with this background so you may be in a strong position to call their bluff. I would hold your nerve if you really want to take these little ones and insist on appropriate support.

insmithereens · 27/01/2018 18:55

It definitely sucks & we are def wary. SS just seem to gloss over soO many details that indicate what their future needs might likely be.

Flapjack how long ago did you manage to negotiate non-means tested AA? I wonder if this is a thing of the past or still possible?

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flapjackfairy · 27/01/2018 19:19

A year ago. They will tell you it must always be means tested but that is not true in all cases. If they cannot find adoptors they will pay a small fortune to support them in foster care so it is a good option to pay a much lower adop allowance . Do they have any others interested do you know ?

bostonkremekrazy · 27/01/2018 19:46

Our little 2 are diagnosed FAS and we did not manage to get a non-means tested AA. It is very very rare 😕.
We have to re-apply for AA yearly and its means-tested.....though in our case now i'll never be able to work so that does become a moot point if the other one of you is 'an average' earner.
Purse strings are so tight, I think without a definate diagnosis you may be fighting a loosing battle for financial support in this climate.
Are there other potential adopters?
How old are the LO' there an under 1 involved?

insmithereens · 27/01/2018 20:11

There were others interested but we were progressing to panel so not now. TBH the others will have had the 'perfect picture' too as only when we digged a LOT deeper did these facts come out. Their paper work isn't remotely up to date because of changes in SWs, that's the excuse they're giving anyway. They are 2.5 & just turned 1.

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bostonkremekrazy · 27/01/2018 20:50

My honest opinion from my 10 years in this game is this:

you can ask for a support package - argue your corner and see what happens using the paed view that these LO's will need support

they may say yes - happy days....

they may say no - can you walk away and look for another match. The LAs will advertise the children again, I expect with no further information re the needs, and another family will either naively adopt them, or be as savvy as you and the LA will have to change the paperwork and do some proper assessments at some point. A baby and toddler will be wanted, and SW's know this....they will have interest - until the paperwork reflect their true needs!

they may say no - you can continue with these LO's knowing that the LA are unlikely to offer support either practical or financial in the future. You can apply to the ASF for help (up to £5k per child) for therapy etc - this will be but a minor dent in what they will actually need.

Bear in mind 'meeting milestones' at 2.5 and just 1 is not difficult. The heath visitor who carries out the SOGS assessment actually asked me which way she wanted the assessment scewed in order for my littlies to get help - did I want them 'meeting milestones' or 'way behind'....At 1 the assessment is also very heavily parent led - so all is takes is FC to say - yes she crawls up the stairs no probs, yes she self feeds, yes she can say 6 words, etc etc, even in the HV has not witnessed it the boxes are checked and as far the SW knows, the child is officially 'meeting her milestones'.

You could at least ask for up to date paperwork, another appointment with the pediatrician, an appointment with the SW manager, and go from there. If the paperwork is not up to date I'd be sitting on it and not doing anything until it is......
(but I can see they have you over a barrel emotionally - I'm sorry!)

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