Adopted child with SEN - advice for family

[KellysZeros]

Hi, I'm writing this message as a concerned Aunt. My DS and her DH have adopted a child that has SEN (nothing official yet, but they knew he was delayed by a 1.5 to 2 years. Very little speech at 5, not toilet trained. Behavioural difficulties, but a very lovely smiley boy most of the time.

I was interested in some advice from the perspective of a family, and I have to be careful how I say this, and apologies if this comes out badly. My DS and her DH have been through a lot and are doing their best. Their DS is now 5. From an outsider, we can see that the difficulties might be quite severe, and you want to do what you can to help, but without "sticking our oars in".

It's not that they're doing a bad job. I think they're doing very well, but I don't think they're necessarily being proactive in asking about the help their DS might need.

I would like advice then on the best way for the wider family to help.

Thanks

[flapjackfairy]

I think you are on dodgy ground if you try to offer advice or suggest they are not doing all they can to meet their childs needs! No parent wants to feel that others do not think they are doing a great job !
I have 2 sn children myself ( 1 foster child and 1 adopted) and the kind of support i would welcome most would be that of a practical nature ! So offer to give them a break by taking child out for a day or better still overnight to give them a proper rest. It is hard work raising sn children.
Presumeably they have the support of health services and educ to address the various difficulties so they should have a grasp of the best ways to support him so i would leave that to the professionals and concentrate on being a great aunt who is happy to get stuck in and share the burden when neccessary.
I would love to have a supportive family member like that !!

[Italiangreyhound]

Kelly it's great that you are concerned and want to help.

How long has your nephew been part of your dsis family?

How old is your son?

"My DS and her DH have been through a lot and are doing their best" Do you mean a lot to get to the point of adopting (eg fertility treatment).

How long he has been in the family is crucial.

If it is early days they will be focusing on attachment. If he has been with them much longer then maybe other things.

[Italiangreyhound]

Sorry, how old is their son? I mean.

[KellysZeros]

Thanks. I'm on a bus so a short reply. He's 5, and been with my DS for 1.5 years.

I do think and get the point about shaky ground, which is why I'm so wary

[JustHappy3]

Do you definitely know they're not doing anything or are you making assumptions?

It's very difficult for me to discuss my adopted dc's difficulties because it would mean revealing personal information about them and their background. And, don't take this the wrong way, but as an aunt you should not be privvy to that information.

If he's recently (less than a year) become their son then attachment, attachment, attachment should be their primary focus. And that would include parenting him as much, much younger than his years - possibly even doing baby type cuddling. Anything academic will be very unimportant at this stage.

His SEN issues may not be able to be "solved" - what is it you are expecting them to be doing that they're not? Eg if he has problems with behaviour like hitting or biting - they'll be trying to protect other kids whilst tackling the root cause of the agression by love bombing or reassurance or building his self esteem. It won't be traditional parenting techniques like time out or consequences.

It could well be that they are 100% doing things and taking advice and pretty much exhausted from being on it 24/7. In which case your role is to say what great parents they are.

[KellysZeros]

I'm not able to write a proper reply now as I'm on my phone, but I'll reply later. Indeed, your advice may well be right, just support as much as possible. I think we all (my ds and family) are seeing that maybe things will be tougher than expected.

The example I can give that worried me is really banal. DN is language delayed, and the telly is on from waking up to bedtime. That's a really small example I know.

[KellysZeros]

If I can summarise it in a different way, I think we are all in our different rates coming to terms with how challenging things may be after a year and a half, and as family it can be hard looking in and knowing how best to help or support my dsis

[Italiangreyhound]

Kelly your observation about the TV is spot on. Although I think television can sometimes give ideas and help to educate, there is some evidence that lots of background noise does not help so each development. You need to cut the noise and focus in to develop language.

I wonder if on a non-judgemental way you can find a good article or parenting forum on line and just send dsis a link to it. Saying I saw this and thought of you working on dear nephew's language skills etc. It's really interesting reading.

If he does learn a new word or something or speak more praise him but remember to praise his mum and dad for what they are doing.

He may be eligible for speech therapy. If I were your dsis i'd want to pursue that. But I recognize it may be hard to bring up.

[flapjackfairy]

Kelly good on you for being so thoughtful regarding your nephew. Your sister is lucky to have you for support.
It can be daunting looking ahead with children with additional needs and hard to see how things will be long term. It takes a long while i think to accept the reality of the childs difficulties.
I certainly see your concerns re tv on all the time. Not ideal ! You may well be right that they need to change the way they are parenting in light of the childs difficulties and as i said in my first post it is a fine line to tread but that is not to say that you cannot suggest better ways of doing things if they will benefit your nephew.
Can you talk to your sister about how she feels it is going? Is she struggling to come to terms with the realities do you think?
Maybe a support group would help ? It is hard to say without knowing more but obviously you cannot say too much on here. X

[Italiangreyhound]

speach development not 'so each' development!

[dimples76]

Does your nephew use any Makaton/sign language? That can really help speech development. Perhaps you could offer to go on a training course with your sister/BIL.

I wonder if they are getting any support from Contact a Family. They organise/advertise a lot of events/training which could provide opportunities to meet up with other families whose children have SEN.

[KellysZeros]

Thanks for all your replies. I've not heard of Makaton and I could look it up. It can be a difficult situation. I think there is some help through the school, but I have a fear one has to be quite proactive. I think in the meantime, I have to hang back, and just offer help when I'm asked for it, as I know my sister and our relationship, and I suspect sending links might be a bit too much.

The tricky thing is that I think it may be dawning that
DN will have SEN rather than just being a bit "delayed", and none of us in the family know how the best way to deal with it is - everyone has their theories about what worked with their child, but DN may well be different. I think we all, included my DSIS had expected DN to be "delayed", which is quite a nice word - nothing to worry about.

I think our parents have found it hard, as they had two children where, within reason, everything was easy (talking, walking, potty trained, etc), but those techniques probably won't work with DN.

The potty training is a big one. My DSIS knew that DN wasn't potty trained at 3.5 when he came to their family. However, at 5, he still isn't potty trained and doesn't seem to be interested in it, from what DSIS says. The same is true of forming sentences, rather than individual words: "carry", "cuddle", "again".

The sad thing about TV is when he came to my house once, he saw the TV wasn't on and pointed at it and said "broke?".

My DN was neglected for the first few years of his life, so he has had a really tough few years. My DSIS and her DH are showing them love, and there is a supportive network around. I think we come from the idea that "it takes a village to raise a child", but as a family, we have to step back and not impose our thoughts onto my DSIS and her DH.

[flapjackfairy]

You sound v balanced and thoughtful in your approach to me Kelly. I think you are doing all the right things by the sounds of it.
As a parent of a birth child with aspergers and 2 sn kids who both have v complex needs i would say that it takes a long time to accept the reality of the situation and these needs become more obvious as children get older. Esp hard if you have no other children to compare it to.
I think a lot of children released for adoption have been labelled as delayed which gives the impression that they will catch up but sadly often this is not the case and children can often have lifelong needs. This reality may be hitting home now and is hard to get your head round. Part of it is like grieving and then moving on to accept the likely future and then fighting to make the long term outlook as good as possible.
Could i ask if little one is at mainstream school or nursery or is he in a specialist setting?
Children in specual schools will get much more targetted support which could be v helpful .

[KellysZeros]

Thanks, at the moment he is in reception at a mainstream school, and I don't know the full picture (nor should I) of how well he is doing. I know that the potty training is a problem. A fear is that the mainstream school may not have the resources to devote to helping DN, and then at some point down the road, they will advise DN to change schools and it may come as a shock.

[flapjackfairy]

To be honest he may make more progress in a special school because he will not be the odd one out and they are geared up to give intensive support in all areas .
I think personally that the younger the better if children are obviously going to struggle in mainstream as i have seen many transfering at high school age who have then thrived in the right setting but obviously it is up to school and parents to push for that if appropriate.
Thinking about your parents . Are there any local support groups for family members of adoptors or children with special needs. I know Adoption uk now have a grandparents board . Dont know if that would be of any help?

[JustHappy3]

If he's in mainstream school then his teachers will have probably suggested he may assessed for the umbrella pathway. If your dsis has refused this then she's a muppet but i doubt she has.
Sometimes global delay is just a delay. My ds has consistently run 12-18 months behind his peers but his progression is fairly constant.
I don't concur with everyone about how awful telly is. If he's on the spectrum then watching telly will be enormously comforting. If they're discussing the telly - like when you read a book - then that can be beneficial too. Also - my mil makes snap decisions of our parenting from what she sees in short bursts a few times a year - when often her presence is what's causing us to eg have the telly on more, upset his eating etc.
Do you genuinely think they are holding him back because of lazy parenting? That they haven't put enough in to sort the problems. If you're not close she probably isn't confiding in you.
I think it's lovely that you care - but it might help if you do some reading first esp your mum. If you think they are overwhelmed then giving them a little break by babysitting might help if he will tolerate that.
But do tread carefully. My MiL and Sils ended up shouting at us the other week as they argued we were wrong about what adopted dc needed - they haven't bothered to read the book we got them, or look anything up and have been scathing about her needing a different kind of parenting. So i'm coming at this from the other angle. We feel tremendously let down by them making assumptions and trying to foist their experience of non traumatised, NT kids onto us.

[bostoncremecrazy]

I have 4 who all have SEN and would be happy if a concerned aunt asked to babysit for a few hours so we could have a meal out etc...just offer to be there more than anything.
it is really tempting to pry - it may be your DSIS is aware of his needs but doesn't want to talk about it yet....?
our DC was 3.5 coming to us and not potty trained also - we needed the continence nurse to come and help us with that as nappies were the normal way to go to the loo. It was easier with help - the GP can refer to that service - 3 days it took once we knew the right technique!
the school should be signposting your DSIS to services if she needs - you could gently ask if they are.
good luck and walk gently - she may be feeling bruised....

[maggiso]

Sorry to be late joining this thread. Its good to hear you are wanting to help your DN and his parents and asking for advise.
The thing I find helped us is non judgemental support. Development is likely to be delayed - or different, and parenting a traumatised and neglected child needs to be different, as the very basic learning (such as trust and touch and non verbal communication, and noticing sensations- a pre-requisite for toilet tyraining) are still developing. At the same time not being too positive or over reassuring if your Dsis expresses concerns- there is nothing worse than empty reassurance. Its still early days for your DN and his parents.
Our DS has SLD and ASD and has a similar early history. Frankly I worried a bit too much about things in those early years- such as developmental delays (toilet training/ language)- but he got there eventually in his own good time. It took me years to realise that if he wasn't ready to learn those skills. Also he needs more re-learning than 'NT' children as a rule. Ds has the combination of developmental difficulties - so getting the parenting right for him was and is a constant rebalancing act.
The other thing it took me a while to learn was that school staff cannot always say what they think would be best for your child- they have to tow the party line (save resources) and think of the needs of all their pupils- and sometimes that means concentrating their resources elsewhere - for instance the children who need just a little extra reading or maths support rather than the one who is much more delayed, and really could do with support all of the time! Our DS actually started to loose skills (except language - that did start to develop) and go backwards in MS school - but a transfer to special school at 7 saw a steady improvement. If only we could have got him there sooner! Starting school was a nightmare - because he frankly was not ready for it ( but we were not allowed to delay- he is old in his year). He was exhausted after school - and I think tuned out in school! No teacher actually said Ds would be better off at special school - we had to fight tooth and nail for it.
So I would say listen to your DSis and BIL concerns (being careful not to offer advice unless it is asked for- or you have particular skills or knowledge) when they voice them and follow their lead. Try to be supportive - notice the changes ( even if small). Offer babysitting/ park trips- or whatever helps.
In the early years, some members of our extended family took a while to accept that DS was different - and that our parenting had to be different-therapeutic and tailored to his needs. I think too that we were extra sensitive because criticism comes from all sides when your child learns and develops differently. Now family accept DS (who is nearly an adult now) for who he is- and can see (and say) what a good job he (and those around him) have done - and how far he has come.
I hope all goes well!