Sons behaviour worse with me and my husband - FASD Support

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Sons behaviour worse with me and my husband

biffyfan profile image
28 Replies

My nearly 5 year old adopted son has an FASD diagnosis. He is at reception at school and copes well. Showing progress in learning. he is falling behind his peers quite a lot but he is definitely makes progress. He struggles mainly at the moment with transitions and choices and then we get the defiant/shutting down behaviour and he gets very angry. He goes through stages of specific things he cannot cope with and gets locked into a behaviour with them until we 'crack' it. Eg at the moment he does not like to look at the school menu board for the day and if ANY other child looks at it on the way to the main door he cannot cope with it and screams and shouts at them and has a total meltdown! My question is - all his behaviours are always worse with me and my husband and he is always better for teachers/key workers/dinners time staff etc. is this 'masking' and then we get it all?! Makes me a little paranoid that he can control it for others and make me think of attachment issues due to the fact we adopted him or do any of you experience this with your child with FASD? I'd be really grateful of your responses.

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biffyfan
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28 Replies
Abney profile image
Abney

Hello,

No advice I'm afraid but just wanted to sympathise as I know exactly how you feel. It's does sound a bit like my son, he'll get fixated on how something should be or should happen, and we have to work hard to tackle it, only for a new one to appear. I find its related to his anxiety levels.

My son is very very compliant at school (he is 4 and has only done one term, and still only doing half days due to anxiety issues) and the school head said to me yesterday that he doesn't seem different to any other children. She wasn't being unsupportive but it did make me feel paranoid that only DH and I see all the behaviour. Even our parents don't see most of it. I know some people around me have just thought we were not being firm enough and if we were more "in charge" the behaviours would be different....in fact we find we have to tread very carefully with the control issues or things escalate horribly. We also find that he is amazing at appearing "normal" at school and then almost as soon as he gets through the school gate he is growling at me or hitting me or having a tantrum, rapidly shaking his head all the way home, moody etc!!

We know our son has had attachment problems and for a long time thought that was the root of it all but now it feels as though the attachment has strengthened enormously and we are seeing different quirks. We haven't yet explored FAE with any professionals but the more I read the more I wonder. The overlap of symptoms between so many conditions is so so tricky isn't it? ADHD, autism, Aspergers, FASD, attachment, sensory issues, they all present in such similar ways.

Sorry for long waffle reply, hope you get some helpful answers.

biffyfan profile image
biffyfan in reply to Abney

Oh my word! Some of the things you describe about your son is so similar to what my son does! A classroom assistant said to me last week 'we only have a little trouble with concentration at school, nothing else. After all the things you said he has trouble with before he started dont happen' .... And then she 'jokily' said .... 'You must be lying' !!!!!! The minute i pick him up he comes out with a smile asks the same question - where are we going now? And he is only happy if it is something very very exciting like a friends house to play, the wacky warehouse, swimming etc (which it never is as would be way too much for him). Then not being able to make a choice, transition issues and defiance. I dread school drop off and pick up every day.

We also have the control issues and the minute we are firm with him he gets more controlling and defiant and we get no where. he is like that with me my husband sistwrs and grandparents but noone else. I also think people judge I am too soft with him.

I possibly think my son has FASD and attachment issues but should I go down that route to diagnose again.... More battles with health professionals! My son has lots of evidence pre natal alcohol exposure so the FASD I a certainty and you're right it's like Autism, ADHD, sensory processing disorder and mood regulation issues all rolled into one!!

Our sons bond with us is huge and he loves us so much and us him, but we have talked a lot about him being adopted lately to him and tell him all the positive likes we are so glad we adopted him Etc but maybe the attachment issues and clinginess is to do with that??

Thanks so much for you response. If I were you I'd look into birth mothers alcohol consumption in pregnancy as its worth investigating. A diagnosis means you know what you are dealing with and so do others involved with your child and in the future they can actual understand it too and why the behave a certain way.

Good luck!

biffyfan profile image
biffyfan in reply to Abney

Oh my word! Some of the things you describe about your son is so similar to what my son does! A classroom assistant said to me last week 'we only have a little trouble with concentration at school, nothing else. After all the things you said he has trouble with before he started dont happen' .... And then she 'jokily' said .... 'You must be lying' !!!!!! The minute i pick him up he comes out with a smile asks the same question - where are we going now? And he is only happy if it is something very very exciting like a friends house to play, the wacky warehouse, swimming etc (which it never is as would be way too much for him). Then not being able to make a choice, transition issues and defiance. I dread school drop off and pick up every day.

We also have the control issues and the minute we are firm with him he gets more controlling and defiant and we get no where. he is like that with me my husband sistwrs and grandparents but noone else. I also think people judge I am too soft with him.

I possibly think my son has FASD and attachment issues but should I go down that route to diagnose again.... More battles with health professionals! My son has lots of evidence pre natal alcohol exposure so the FASD I a certainty and you're right it's like Autism, ADHD, sensory processing disorder and mood regulation issues all rolled into one!!

Our sons bond with us is huge and he loves us so much and us him, but we have talked a lot about him being adopted lately to him and tell him all the positive likes we are so glad we adopted him Etc but maybe the attachment issues and clinginess is to do with that??

Thanks so much for you response. If I were you I'd look into birth mothers alcohol consumption in pregnancy as its worth investigating. A diagnosis means you know what you are dealing with and so do others involved with your child and in the future they can actual understand it too and why the behave a certain way.

Good luck!

Many FASD Pupils have these problems, will want too please and impress teachers, work really hard, by home time they are in melt down, hence different behaviours at home, Important that school and home partnership's are established early, some time's too much support can be a disadvantage better too find strategy's that work, need too look at sensory problem, OT may start a sensory diet, not forgetting FASD children have short-term memory problems, and take much longer too learn so study should be bite size.

Have excellent long term memory, most have talents which one has to explore. School can use the Pupil

premium + for Adopted children, SGO's, and Kinship carer's (£1900 pa) for extra tuition, Buy in services OT, Speech therapy., SEN support and lots more. Also Adoption support fund Starts as from May 2015 will include medical/education assessment's for suspected children with FASD with on-going long term support , Not sure of the criteria for details see first4Adoption.org.uk

FamilySupport profile image
FamilySupport

It is indeed common for these kids to do well in school then total meltdown at home, Even those who enjoy school have a 30 to 60 minute initial crazy time after school. The behaviour you are describing is not due to attachment issues but FAS. One of the issues is that FASD "mimics" so many other conditions. Have you had an assessment of receptive language by speech and language therapy? Have you met with the school SENCO (special educational needs co-ordination)? what additional support is being given at school? One of the key things is to get that extra support formally set up, be it school action, school action plus or a full EHCP (replacement for statement of special educational need). If you speak to your local parent partnership they can give you advice and local information / support.

Amamitch profile image
Amamitch in reply to FamilySupport

I found by having as little noise in the morning helps by not starting the day off by not overloading their hyper sensitivities. I used to either have the telly on or the radio and never gave it a thought until one morning notice the wee one with her hands over her ears. I then gave it a try and she at least manages much better at school.

biffyfan profile image
biffyfan in reply to Amamitch

Yes I've thought that too but I have 2 birth children also. One is 15 and likes her music on whilst getting ready. The house is as quite as possible with me and 3 children getting ready but in the morning I work at a wraparound childcare place and he is with around 20-25 children just before school!

biffyfan profile image
biffyfan

Thank you all for your comments. I will look into all the extra funds for support. I know he gets the premium plus but apart from some training by the FASD Trust I don't know what else it has been spent on-not anything specifically for my son that's for sure. The school have not discussed EHCP as yet as they won't consider it until he is 'academi ally failing'. And to be fair he isn't standing out at school as needing any extra support as yet. His teacher is great with him and understanding of the difference in his behaviours at home. But I do see the need for a sensory diet or assessment of sensory overload all though he appears to be coping we are getting this issues afterwards. He has been referred to various places - CAMHS, community learning disability nursing team and never 'fits their criteria'. He's now been referred to an OT re sensory issues but as usual there's a big waiting list. We spend months and months on waiting lists just not to fit their criteria. He was assessed by a psychologist back in march who said his receptive language was considerably below the 'norm' but expressive language was as it should be for age but we were given the report and sent away-no referral but I will now persue a referral to SLT ( he had delayed speech at 2yrs - 3 yrs old and was under SLT then but then discharged. I really appreciate your replies and feel reassured and less worried why he behaves so much worse with me and our family!

biffyfan profile image
biffyfan

Thank you all for your comments. I will look into all the extra funds for support. I know he gets the premium plus but apart from some training by the FASD Trust I don't know what else it has been spent on-not anything specifically for my son that's for sure. The school have not discussed EHCP as yet as they won't consider it until he is 'academi ally failing'. And to be fair he isn't standing out at school as needing any extra support as yet. His teacher is great with him and understanding of the difference in his behaviours at home. But I do see the need for a sensory diet or assessment of sensory overload all though he appears to be coping we are getting this issues afterwards. He has been referred to various places - CAMHS, community learning disability nursing team and never 'fits their criteria'. He's now been referred to an OT re sensory issues but as usual there's a big waiting list. We spend months and months on waiting lists just not to fit their criteria. He was assessed by a psychologist back in march who said his receptive language was considerably below the 'norm' but expressive language was as it should be for age but we were given the report and sent away-no referral but I will now persue a referral to SLT ( he had delayed speech at 2yrs - 3 yrs old and was under SLT then but then discharged. I really appreciate your replies and feel reassured and less worried why he behaves so much worse with me and our family!

Would look at this WEBB by the Department of Health and Education British Columbia Canada you may have seen it. We asked school too use it with great success that was 26 years ago still is the best around

fasdoutreach.ca

Amamitch profile image
Amamitch

Hi we have the same problems with the two girls we foster not yet diagnosed with FASD. The fact your child manages to contain the impulsive behaviour is very hard. Also they tend to have hypersensitivities and the sheer volume of pupils and noise over sensitiese them. I also get the meltdowns and I have now helped them identify quiet space and the calmness it brings and how lovely that feels. Please feel free to ask any questions as I am now 5yrs into this with the girls and its getting easier.

biffyfan profile image
biffyfan in reply to Amamitch

I am over 3 years into it but still new challenges!! You're right about the business and noise levels and although I appears to cope at school then it all comes out before or after school with me. I am exhausted with it.

Lilbill profile image
Lilbill

Our 15 year old adopted daughter has always been the same as this - nice and well behaved with others (school, grandparents friends etc) but 'meltdown' as you describe with us. Nice to know it's not just us - makes us feel 'like she's just stepped into something nasty on the pavement' at times (the sneering looks really get to me). It means that no one believes us - as if anyone would make some of these things up - very frustrating. Relatives who don't undertsand just say - oh she'll change as she grows up, mine were like that.

Her school asked if she was adopted so they could claim for the extra money - we asked if this was for help for her but they said no it just went into the pot of money for the who,e school. Really useful, not !

biffyfan profile image
biffyfan in reply to Lilbill

No that's not useful at all. In the new year I plan to talk to the schools SENCO and ask where the money has been spent for my sons pupil premium and then give them a list of the things I think he should have! They are being great and he doesn't stand out at school but he is falling behind a little and with his FASD diagnosis a little extra hours for 1:1 support wouldn't go amiss! Thanks for your reply, reassuring to know I'm not the only one struggling with behaviours worse with us!

Sensory problem's may be quite hard too identify, Loud noise, light, touch and feel of things, dangly things in classroom, (like walking through a jungle too them) , short-term memory will forget in a second, shouting at a child, high tolerance too pain( if they say they are hurting they are believe me), Instruction's be short and too the point, Home should be like an extension of school (minimalist their space, clean and tidy little clutter favoured thing's easily accessible, Children often if touched will regard this as smack , can make excuses which are very convincing turning the fault on others., will always have a unsuspected witness on hand. Sensory diet's can include whole class in math's and English so every one benefits.

Do not need a statement too access support via pupil premium plus can be used for many thing's school has too account for this via OFSTED can express concerns too them, If not used can then be used for whole school. Can not be used too supplement SEN Schools initiative's, school has already approved funding for this , Can be used if project's support's your child and other's

riches26 profile image
riches26

I have an 8 year old son who has been diagnosed with FASD.

It has taken a long time for him to be diagnosed because all the professionals we saw thought we were lying as he never did any of the things he does at home. Teachers every year would say he is such a lovely boy, he is a diamond he is no trouble.

I used to think we must be bad parents what are we doing wrong! Family weren't much help they were seeing us less and less.

The slightest thing will set him off and he will get angry, start screaming and shouting then start hitting us.

We got a referral to CAMHS which wasn't much help because she said his behaviour wasn't due to FASD and that we should go on a parenting course. I was sent on this parenting course before he was diagnosed, and it was no help to me then, so I am certainly not going to sit through another 12 weeks of it.

WildPoppies profile image
WildPoppies

Hi there

I've not read all the replies so apologies if I repeat anything.

Our kiddies both hold it together at school and melt down at home.

Infuriating because it means school staff think there are no problems!

For a long time we thought they could maybe control it at school to avoid drawing attention and to desperately fit in.

But if you look at it from an attachment view then it's possible the school relationships are too superficial and the children don't feel safe enough to show their feelings in that setting.

Recently we've explored the sensory processing aspect of FASD. And in this light it's possible that children are using every ounce of energy to cope with the massive sensory overload of school life, that they're just exhausted when they get home and can't hold onto their sensory overload any more- so they meltdown.

If you think sensory processing is significant for your boy, I totally recommend Angie Voss book "Understanding your sensory seeking child" - it's amazing. And has really helped us to cope and tolerate the incessant sensory seeking behaviours. They all make so much more sense to us now- no pun intended!

For us the relentless sensory stuff can be really frustrating, but with this guidance we are making better sense of it. And the home/school behaviour you describe is in the book.

Best wishes to you

biffyfan profile image
biffyfan

Thank you I will take a look at that book sounds very interesting. I've got The Out-of-Sync Child but its a little heavy going! I am also going on a course about sensory processing issues soon. Many thanks

greenmother profile image
greenmother

Hi, we too have most if not all of the same difficulties with our 11 year old daughter - she has a diagnosis of FASD and ADHD, and behaviours like attachment difficulties. It is very challenging in the home (and we've had her since age 10 months!) - quite different to school, where they say she does not stand out any differently to the others. Mind you, that is with the help of a Statement of 25 hours a week.

It is galling to see her behave so well and good humouredly in front of relatives, friends, school etc - they have no idea of what we live with!

Wild Poppies, please can you give the exact title of the Angie Voss book you got? It looks as if there are a few titles out there, of varying prices too. Thanks.

Now we are faced with finding a secondary school that 'fits' the best - and this is very difficult. I know there are tons of sensory issues which affect her behaviour, so would like to re-visit this to see whether there is anything else to be done.

Very interesting to read everyone's comments, and not feel so isolated.

WildPoppies profile image
WildPoppies in reply to greenmother

Hi greenmother

Sorry for late reply, I've only just seen your question here.

The Angie Voss book that we have is "Understanding your child's sensory signals"

I highly recommend it. It's so user friendly and you can dip in to check one particular behaviour, etc.

Here's the link to the amazon page:

amazon.co.uk/Understanding-...

hertsred profile image
hertsred

I see you have lots of helpful replies but would just add a little from our experience. Our son is now 10 and in year 6. He too does relatively well in school, but ti seems that the struggle to hold everything together and be really good at school means that when he comes home it can all fall apart. You have to hold on to the fact that he isn't doing this to or because of you, but simply because of the FAS he can't help it.

Abney profile image
Abney

I found "The Out of Synch Child" a bit heavy on the theory and biology too.

I liked this one a lot better, and found it has lots of very practical tips.

amazon.co.uk/Raising-Sensor...

There's also a very good website that accompanies it :

sensorysmarts.com/index.html

biffyfan profile image
biffyfan in reply to Abney

Thank you so much. I will look into those books over the next few days. I've also just booked myself onto a course about sensory processing difficulties run by autism West Midlands. I know my son isn't autistic but I think it will still be beneficial. Good to know we are not the only ones struggling with these issues.

Abney profile image
Abney

I read that ARND and FASD are often mis-diagnosed as autism, so the symptoms must be very similar and I'm sure you're right that it will be helpful to investigate any strategies that take into account a chi,Ds additional challenges. You can always adapt them if they aren't 100% right for your child.

Hope it goes well.

This may be of some interest too all , The 3 year after adoption support system is about too change from MAY 2015 , New system will also include support for children with Foetal Alcohol Effected conditions.

Don't think they have crossed the T's or dotted the i's as yet. But it will be worth keeping an eye on this Webb for new forthcoming information as this develops. "Adoption Support FUND" at first4adoption.org.uk

Can read some criteria of what intention of the fund is for.

LearningWithHope profile image
LearningWithHope

This happens for us as well. Our son tries so hard, so very hard all day at school, it amazes me what he is able to do. I am so proud of him - it's not easy at all to go into an environment day after day where you are not quite like the other kids, where things can be confusing, loud, or overwhelming. When he comes home to a safe and comfortable place, he can't hold it together anymore. We don't see that as a sign of attachment disorder - in fact it's the opposite. It's because he feels safe and loved that he lets down the defences when with his family. One professional, when we were recounting some of these at home behaviours that we found so distressing, asked a key question, "What makes you assume intentionality?" And this is the core of it. The kids are not trying to be naughty, they are having a hard time. We have to find ways to help them cope, give them the tools, and understand they won't always be able to remember ahead of time what they should be doing. We had a conversation this year about Santa, our son was distressed that he would be on the naughty list. I told him that Santa knows if you have a loving heart, he knows kids try hard but sometimes forget, but that if you have a loving heart he will understand. We can't lose sight of their loving hearts, we cannot teach them they are 'naughty' - we have to hold on to the beauty inside of them and see past the absolutely irritating and frustrating behaviours. They do calm down, and that is when we can talk about how to do things differently the next time. We are far from perfect on this, but we try to compliment as much as we criticize. There is always something that can be noted "I saw you sat quietly there for 10 whole minutes at the computer - great job..." Best wishes to you, it can be very difficult during the holidays. But the joy is there. Hang onto that.

Warrens profile image
Warrens

Good morning , hope the weekend is going well

I'm also a parent of FAS, two children who are now 17, and 15.

I feel your frustration but if you look at you question you will find that your son is trying very hard at keeping his anger and his frustrations ( that come with the world of FAS) under Control but after all of that hard work at some point he has to relax and unfortunately this takes place with us parents!

I found in school holidays, he was more relaxed and i had less of the anger ( apart from the normal school holiday of children getting under your feet) and this is because he was not competing ( failing) and could just get on with being himself!

My son did go to mainstream school up until the age of 8yrs, but in my eyes that's where some of the problems lay, he was starting to notice that he was not keeping up with his peers in all aspects of daily school life and this was then expressed in to anger towards me his dad ( as in his eyes I was the one that unconditionally loved him and understood his Frustration and condition) but since he has attended a special needs school he has become a more happier person. He gets the full support and understanding of all of the staff that work in special-needs education.

Well this is my experience but as we know all children are different but unfortunately with FAS children it's a learning game!

Keep in there

Merry Christmas

Warren, Anthony & Emily x

jenniw profile image
jenniw

I am no expert, could be he feels secure enough with you to relax and be himself? You should also get as much information about his life prior to moving to you. My son came as a baby and although he is not diagnosed I am aware which aspects of him behaviour are attributed to fads and sometimes I can plan ahead to help him cope. Whatever you do, do not blame yourself I hope you were given literature about alternative parenting, it really helps.

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