Fasd: no help

[scarfonthestairs]

I think I've posted about this before but we are struggling so much.
We've had ds from 2years old. We were told there was a chance birth mom had drank during pregnancy and that the worst thing would be he might not be able to tell the time properly.
After ds was back for several years we discovered there was lots of evidence bm had drank and used drugs through the pregnancy. Shortly after this ds was diagnosed with fasd.
Ds is really polite around others , very clever, very sociable. School insist he's fine in school (although the OT who went in to see him said he's not)
We haven't got an ehcp because of schools reluctance.
Ds is a nightmare at home. He's convinced he knows best with everything. He tries to blindside us and argues with everything. He's sneaky and manipulative. He has little impulse control. Has a need to be with older children/to be treated older than he is (10)
Hes obsessive about horror/murderers (we do not allow this) but he pushes and manipulates the answers out of others.
He has huge meltdowns.
We spike to adoption support last year who arranged 6 sessions with an ot. She was amazing, she is the only person who has got him complelty. The sessions ended and the school hasn't done much with the report. Ds got very upset at leaving her.
They also arranged a psychologist. Ds refused to go to the sessions. They were a 45minute drive away during school time. He didn't want tonstay away from school anymore because he didn't want people thinking he was "different". The psychologist also wanted us to have sessions (we've been having them and courses for years bit again they were during work time. We already have time off for paediatrician appts/all the ot appts we jist couldn't do it. We asked for more ot session but a support said no. Because we couldn't get ds to go to appts we had to have our case closed. He's also refusing to do sensory circuits at home or school.
Ds desperately want to "fit in" but he has such a skewed idea of what that is. He can tell the time but had no time awareness. He can add and subtract money but has no idea of the value. He apparently behaves at school but refuses to do homework and has afterschool blow out.
I don't know why I'm writing all of this really. I just don't know what to do.

[Jellycatspyjamas]

The problem is if you can’t be available for appointments there’s little support that will work - and I say that as someone who has had to cut back on work to facilitate a number of appointments for my DD. You asked for more OT support, was that easier to attend than psychologist sessions or did it feel a more helpful use of your time?

I think his comment about not wanting to be different and missing school for appointments is fair enough - my DD has a weekly therapy appointment so always misses the same afternoon every week. It’s not so bad now she’s in a school for kids with complex needs who all tend to have various appointments but in mainstream it was tricky because she was the only one. You might be able to get an appointment later in the day - around 4 but again someone would need to be available to take him.

What do you think would need to be in an ECHP - do you have an idea of supports or therapies, or are you hoping the assessment process might flag up something worry trying? I don’t work with the ECHP process but my understanding is you don’t need the schools support to apply for one - could you look at starting the process yourself?

You’re right in thinking there’s not a huge amount of support out there, and what is available also clashes with working hours for most people. However he’s 10 now and falling behind educationally and is struggling emotionally - neither of those is going to get better without significant support and will become harder to manage as he gets older.

Things that have helped my now 12 year old are long term therapy through CAMHS (had to fight hard for that but she’s literally a different child), referral to community paediatrics who coordinate her various health needs, a specialist tutor for maths and literacy and now a specialist school placement geared to her needs. They all take time, and mean I can’t work full time but without those supports I wouldn’t be working at all because I suspect by now she wouldn’t be able to cope with life.

Your other choice would be to look for private psychology support who may offer evening and weekend appointments but that’s likely to be expensive and not as joined up as support through statutory services.

The starting point though is knowing what you’re looking for, which is hard because you don’t know what you don’t know, but a pinch of the right kind of support is much better than a pound of the wrong thing.

[Ted27]

Hi @scarfonthestairs

Are you in England? If so are you aware of the Adoption Support Fund?
You should be able to access up to £5000 a year for therapy so you could get your preferred therapists back.
Your LA is legally obliged to do an assessment of need for the ASF.
You can also apply for an EHCP yourself.
It's tough getting the support but I do agree with Jellycats that you just have to make the time for appointments. It's why many adoptive parents work part-time
As a single parent I worked 3 days a week to make sure that I could fit everything in
I hope you can find solutions

[scarfonthestairs]

There's just no way we can afford to work less hours. I work 4 days a week ina school so in there for all holidays etc. My dh works solidly to make up for my rubbish pay.
We have very little childcare so have to factor in collecting children etc. And I don't drive. I'm not making excuses I'm truly not. When I worked 3 days a week everything else was so much easier.

[ifchocolatewerecelery]

Have you applied for DLA?

[Jellycatspyjamas]

We have very little childcare so have to factor in collecting children etc. And I don't drive. I'm not making excuses I'm truly not

I don’t think you’re making excuses - it’s very, very difficult if you’re not able to drive and have no real support. I was thinking the other day how impossible it would be to manage my DDs appointments if I didn’t drive - her CAMHS appointment is 10 miles away with no available public transport and the hospital we attend regularly is 20 miles away and would involve 2 buses and a train (about a 90 minute journey each way). Every appointment would be at best a half day each, and there are many of them.

There’s a degree of privilege at play in both getting accepted by services and then being able to access those services. However your child needs pretty long term support from a variety of agencies if things aren’t going to get worse, so let’s try to work things through.

Was it ASF who our previous supports in place? Are you able to reapply maybe seeing if you can nominate a particular type of therapy?

Have you applied for DLA, once you have that in place, have a look at Universal Credit - you get an increased work allowance if your child has a disability which might make it possible to reduce your hours depending on what your partner earns. Could you explore a retrospective adoption allowance, they’re are rare as hens teeth and you’d need to make a good case but it sounds like it’s only as your son has grown his needs have become fully known - it’s worth a try on the basis that you can’t meet his level of need and maintain your current level of employment.

Freeing up some time for you to manage paperwork and appointments is key, because any support offered will be during the working week, and any discussions with school etc will also be during the working week.

Start the ECHP process yourself, I’m no expert but I think there are independent agencies that can help with it. You’ll need to fight and pressure the school to pay attention to the OTs report - are there things in the report that might help your son at school? That’s where I would start.

It is hard, and it’s only going to get harder really without proper support. Others might have advice around processes etc but I suspect that’s just going to feel like more pressure if you have literally no time.

[tonyhawks23]

This all sounds really hard and I imagine my future as my DD is only 3 and awaiting diagnosis but thought I'd stop in and ask if you have peer support as I find that really really helpful,just being able to rant with others who understand,have faced similar challenges etc.adoption UK meet ups or the fasd hub Facebook groups for example,online brings everyone together no matter where you like so I find that helpful,just in case it might help you,I always feel better chatting to others and being understood!I also thought do see it as the disability it is,that helps I think,and tail back schooling as needed such as making school understand homework isn't going to happen,it's more important your relationship is maintained than homework is done for example,if school needs to tail back some subjects accordingly to enable him time in school to keep up with the essentials like time and money speak to them about that and think around what would help. My school (mainstream) has a no homework policy anyway for example,drop that and make sure school know to focus on the key life skills he will need, within school hours,if he behaves in school.

[Ted27]

I don't drive either. I get that it's tough I really do. And it's exhausting.
You need to look at DLA and other benefits which could be available to you - they made a huge difference to me

[scarfonthestairs]

Thank you everyone for being so understanding. We do get dla. We've actually been granted it until he's 16 so they appreciate the severity.
I feel so tired and worn out by it all. So many parenting courses , then the fasd, plus spd too. It's constant.
Because school see he can tell the time they think he's fine but he literally has no idea I'd something is 5 minutes or 5 hours.
He can say the months of the year but can't tell you what next month is.
He can explain how much change needs to be given for something but can't understand how £40 is a huge amount compared to 40p. Does that make sense? It's all the abstract concepts he can't get.
He's just got really upset as he couldn't eat his dinner. He really struggles with food. Is obsessed with sugar , but struggles to sit and eat a bowl of food because of tje textures. He won't eat the peperamis ibe bought because I got the lidl ones not aldi.
We were given adoption support during lockdown so I don't know if they'll give it again but I will ask.
I also need to look at am ehcp.
I need to learn to drive.
Dh hates the idea of us claiming uc. But he's not the one dealing with ds most of the time. He's out the house by 8 and not back til 7. He does loads but it's me who does the holidays, the weekends etc.

[121Sarah121]

@scarfonthestairs That sounds so tough. Try the entitled to calculator to see if you would be entitled to universal credit. You sound utterly worn out and something needs to give. If money allows, that should be it. It’s not about being in benefits it’s about being there for your son and having the time to rest so you can be the best parent.

[Ted27]

@scarfonthestairs

You are not surprisingly utterly exhausted and if your son is to get the help he needs something is going to have to give.
You cannot continue to pour from an empty cup.
And to be blunt, you need to sit down with your husband and tell him to get over his issues with claiming benefits unless he wants a wife with a nervous breakdown to deal with as well.
I think a lot of adopters do struggle with the idea of claiming benefits - to be honest I never have. I'm saving the state hundreds of thousands of pounds, as far as I'm concerned my son was let down by the state so it cab fork out for me for a couple of years on benefits so I can give my son my time and energy.
But I do think you need an honest conversation with your DH about how you feel, what this is doing to you and what needs to happen to make life better for all of you

[tonyhawks23]

OP,I think on reading your update you should not worry too much on these bits, let your espectations go and try to downsize your worries, I know this sounds wild but put it to context from what you say here, my non fasd son (9) cant sit to eat, eats with his hands, has emotional outburts (cant ask him to do something) and thats all ok in our family as hes grown up this way and we see him. I think sometimes I overworry my fasd dd because I expect problems, yet see the same in her older (non fasd) siblings through the years/ Im totally not aiming to minimilse how hard it is as know lready how hard it is. but also to compare ages with my eldest (9) he has similar traits you mention. Could it be a chance you could take a step back from the expectations of understanding time/money/sitting to eat food/different textures and accept him where he is at? My non fasd (possible asd spectrum but funtions fine in understanding environment) ds nearly 10 cant sit to eat hardly, eats with fingers, is himself, and thats ok as I dont overworry it all, yet my dd 3 who I worry about everthing fasd with has learned her stimming from him and I overworry everthing she does is an fasd thing. I think kids are kids and they all have their stuff and if we can accept them where they are at then it helps take the worry off and that in turn helps our relationship. For example my dd 3 with fasd at the beginning of holidays I had signed up for any help asd and started dla application now without the pressure of school run and time has relaxed so much im not going to apply for dla and she doing so much better, still spitting and kicking yes but a different world to how she was. A lot is in me not needing to rush her. so I do think environmental changes have a massive place to play and anything you can do to go to his world helps. Can you game with him? Set him up with friends/cousins online? To help his need to fit in yet in the safety of your home, if you see what I mean, in the living room where you are around. I think you need to talk to school about his homelife and take out what you find are stressers, if he needs to do his maths homework while others are doing PE and then you run him in the park after school or whatever works push that, say what you need for school. Let the things that dont matter slide, like not sitting for a meal. And defo get peer support, it helps. I dont think my non fasd 9 would know value of money or time yet so dont worry, he may well be managing at a differnt age level too and needs more time/help for it to click. Ive got mine into online lessons for time this summer as schools missed that its not understood yet, you can support at home but no pressure yet, dont despair, and do see it as a disibility not behaviour, maintain relationship above all else. And most importantly is self care, do give yourself time, put it in your schedule for rest, tag team, you need you time it is essential not a luxury, its so hard you are the priority.

[Jellycatspyjamas]

It makes perfect sense, my DD sounds similar in that age can learn numbers, times etc by rote but couldn’t tell you what they mean - which means concepts like addition, multiplication etc are almost impossible for her to grasp because she can’t learn through the usual strategies.

Given the complexity of his needs Im surprised school are saying he’s ok. Does that mean his behaviour is ok, because his learning must be impacted given what you’re describing.

Parenting courses honestly aren’t going to do much here, he needs educational support and therapeutic work - the first stop is always that children just need secure, attuned parenting, which flies in the face of all the research around developmental trauma and then makes parents feel like shit when they’re doing their best and their child still struggles. And the child then hits crisis in their teen years and it’s much harder to help them at that point. It’s not fair to parents or children.

I wonder if having a plan of attack, so to speak, might help. Break things down into immediate, medium term and longer term - you sound exhausted and overwhelmed which is no surprise really.

In your shoes I’d look firstly at what financial help you can get to allow you to reduce your hours - check “entitled to” with various options in terms of income eg your job alone, your DHs income alone, variations of part time work. That might give you a sense of what you can afford to drop. I know how hard it can be to start looking at benefits but your DH needs to understand that something has to give, and it’s either going to be your health or your child’s future neither of which are expendable.

I’d also start really challenging the school about what they mean when they say he’s ok, and how they plan to teach more abstract concepts etc. Ask them specifically what they’ve done with the OT recommendations and explain you’re starting the ECHP process regardless of whether they support.

Id then contact post adoption support and ask specifically for therapeutic support and see what they come up with.

In the meantime keep things at home as low key as possible, pick your battles and get as much down time as you possibly can. You’ve a road ahead of you and you need to be well enough to cope.You’ve done amazingly well to get this far.

[Ted27]

@scarfonthestairs

Youve had some excellent advice above. To be honest, in your shoes I'd get myself signed off - take some time to recuperate and get yourself together, and formulate some plans.
When I was at rock bottom with my son that's what I did, best thing I did for both of us

[Jellycatspyjamas]

I agree with @tonyhawks23 about not worrying too much about labels just now - there’s so much overlap with developmental trauma, FASD, ASD and the rest of the alphabetti spaghetti of diagnosis and much of the time the label doesn’t do much to help the child in front of you. Use it when arguing he needs support or funding, but try not to ascribe x behaviour to y diagnosis because you’ll drive yourself crazy - and often even the professionals aren’t clear.

[Jellycatspyjamas]

To be honest, in your shoes I'd get myself signed off - take some time to recuperate and get yourself together, and formulate some plans.

Absolutely this, often work is the only thing you can put on hold even if you think it’s keeping you sane it’s the one pressure you can relieve right now. There’s no shame in just stopping to get back on your feet and clear your head.

[scarfonthestairs]

I've not long gone back to work after being off with anxiety 😑 I don't think it helps being off with both of them for the summer.
I looked at entitled too today and I can earn just about the same as i do working 3 days a week as I do working 4. (I could also earn pretty much the same not working at all!) But it's whether work would allow me too.

[121Sarah121]

Is a career break an option?

[Jellycatspyjamas]

I've not long gone back to work after being off with anxiety 😑 I don't think it helps being off with both of them for the summer.

You may have gone back too soon tbh, it’s common when folk have anxiety that they go back as soon as they feel a bit better rather that when they feel fully well, if you know what I mean.

If there’s no difference in income, would stopping work be an option - not permanently but while things are so intense with your child? Is your profession an easy one to take a break from? Even dropping a day would give you some wiggle room and you may have a good place to negotiate from given your recent absence - they may be happy to give you 3 days and for you to be productive at work than have you off sick on a 4 day week.

[DorothyWhippleFan]

@scarfonthestairs there are so many parallels with my own family story. I’m a longtime adopter but I name change every now and again (the regulars here will probably recognise me and my situation).

So, my teen DD who has been with me since babyhood (but who spent the first week or so of her life withdrawing from opiates and then had two foster placements before she was a month old, including a private placement where she left with only one babygro, just to illustrate the level of care) now has multiple diagnoses relating to her prenatal and immediately post-natal experiences. Like your child, my DD’s school/schools have always believed that she didn’t need an EHCP or any extra involvement or intervention; they are/were wrong. I now have an EHCP and extra funding to recognise my DD’s high needs. You CAN apply for an EHC needs assessment yourself using a template letter found easily online; you only need to asset that your child may have extra needs. I applied for a needs assessment myself after three years of battling my DD’s selective grammar school who would always argue that they were meeting her needs; they still don’t meet her needs but now I have a legal document that can be enforced by a court if they continue to dick about! 😅

The behaviours you describe scream to me of ADHD/ASD (I have two adopted children who are diagnosed with not). There are multiple overlaps between these neurodevelopmental conditions and attachment/trauma-related behaviours but it is my long-held belief that the world of professionals don’t really understand the former but they do know about autism and ADHD; seek the diagnosis that secures you the best professional input and support and will enable your child to have the least miserable time in formal education.

If you have to reduce your hours or give up your job - and many, many of us have also had to do so - then apply for an adoption allowance from your authority and don’t feel guilty about doing so. Similarly, you can apply for DLA without any formal diagnoses; you just have to illustrate and evidence that your child’s needs are over and above those of their ‘normal’ peers.

I would urge you to get an EHCP in place before your child starts secondary school as that is when the wheels really start to come off for many adopted children; it’s the combination of hormones, a growing sense of lack of identity, massive peer pressure and the ever-increasing gulf between them and their peers that can result in heartache for everyone (been there, worn the T-shirt, keep having to darn it).

Finally, please believe in you as a/the parent; you are the number one expert in your child.

[DorothyWhippleFan]

Forgot to add the really basic information that my teen DD has a formal NHS diagnosis of neonatal abstinence syndrome (drugs) and I suspect she has FAS too.