6yo's struggles in school. Feeling despondent and lost

[teekay88]

Hi everyone, it's been a while since I posted but looking for some advice from the community about how (if at all) I can make life easier for us as a family through a very stressful time we've been having at my son's school. Apologies for the very long post but context def needed.

My son is 6 and for as long as we can remember has struggled with emotional regulation, very intense meltdowns, and has challenging behaviour that has been labelled as disruptive since he was in nursery age 2.5.

We had a particularly difficult time at age 3.5 where he began to show intense aggression and meltdowns towards me mostly (although a little to my partner) and so began our very long journey of almost constant stream of negative feedback from nursery and now school. For context his BM was drinking and using heavily throughout pregnancy with sustained domestic abuse throughout. He was fostered with a loving family from birth until his adoption at age 13 months. In terms of academic/physical development he has always met his milestones and no particular issues were picked up within adoption medicals aside from potential affect of substance misuse becoming more apparent as he aged.

He has always been a very hyperactive boy, very short tempered, impulsive and oppositional, which has increased more and more over time, worsening particularly since about age 4, but probably the worst it's been now. We have benefitted from a LOT of support over the last few years. We went on a specialist Adoption UK parenting course which massively helped us understand impact of developmental trauma on his behaviour and regulation, and to proactively manage his triggers. We have also had support of post adoption services, and we now have them very actively involved to advocate and support our son particularly with school issues. He was diagnosed with combined type ADHD last year (ticks absolutely every box although always mindful of the overlap between trauma and apparent ADHD type symptoms). It has also come to light he has sensory regulation issues (possibly something like sensory processing disorder) and all the experts we have been involved with suggest he has some social/emotional delay (possibly 2-3 years less than chrono age). He has been going to therapy, which has helped somewhat in terms of talking about life story and processing emotions safely but this has now come to an end. He has just started some Sensory Attachment Integration work with an OT from a trauma service which so far has been helpful and their plan is to liaise with school.

School has been an absolute nightmare. From reception age he has been somewhat labelled as a difficult to manage child and this has followed him through. His SENCO has been very supportive and proactive and a no of strategies have been tried in school but there is such a marked difference between how he is at home (hyper, argumentative, some meltdowns and aggression but mostly managed), and how he has been at school (almost constant issues with aggression towards friends, general friendship issues, refusal to listen to instruction, hyperactivity/impulsive behaviour, rudeness to staff etc, and inability to concentrate and regulate in almost any classroom activity and unstructured play). This has been complicated by a no of other children in his class who have similar dysregulated behaviour which I think is exacerbating the issue although school are quite dismissive of this and nearly always frame him as the aggressor and behaviour as 'unprovoked for no reason'.

We have had constant TAF meetings, a constant stream of negative feedback on everything from minor 'incidents' to major. A very depressing communication book which has just felt like a way to catalogue his every flaw. Constantly being sent to the headteacher's office (which I have tried to explain is a v shame based approach for his background and likely not helping) and it has all culminated in him being at high risk of exclusion. He is currently on a very limited reduced timetable 121 with a TA with no clear end in sight (I'm aware this is supposed to be a temp measure and post adoption are supporting us getting extra help in place but there is a clear sense he will not be realistically back in classroom for ages yet). He is currently being assessed for an EHCP and both school and we feel it is now time to consider moving to a specialist provision. I am torn because he is academically bright and the only options that would work well for him are private provisions (which we can't afford to pay) which may (but are unlikely to be) funded by the LA if we nominate them. Anything else is v targeted towards autism and LD. School are v keen on pushing this along fast but in meantime we've been led to believe he will realistically go to some kind of temporary provision (something like a PRU) and some mish mash of home school/community provision. Needless to say this is all having a huge impact on our stress levels and juggling work

At home he is showing signs of such poor self esteem as so many of his interactions with adults are negative. He has clearly internalised the latest update at school as due to being a 'bad boy' and although I will say school say the right things about appreciating where the behaviour is coming from, they still v much frame in language of 'choices' he is making and behaviour being unprovoked despite so many explanations from professionals and us about triggers trauma etc. I do believe they are trying but clearly at end of their rope and they are just not able to manage his needs.

Xmas has been awful in limbo, and he is now becoming so dysregulated at home. Home used to feel at least our sanctuary but now he has started to use bad language against us constantly (stupid, idiot, I hate you, etc at any mere issue), the meltdows are increasing and he (and we) are not coping. Just before xmas he had such a bad meltdown that he broke his bed and door and we were unable to calm him ater a 1.5 hour meltdown until he fell asleep exhausted.

I am at my absolute capacity for stress and feel I have tried everything. We can't possibly fit in any more support services, appts, meetings etc and nothing seems to be helping enough. My sleep and appetite are affected, family life feels strained and I have no idea how I am going to manage work come the next few days.

I really don't know what I'm asking for here other than maybe a handhold and someone to tell me how on earth we can manage our self care as a family in the meantime. Thank god for our excellent social workers who have been tireless in advocating for him. The one positive is that his EP report for EHCP was very good and reflects his needs v well. I am hoping this places some pressure on school to adapt their traditional approach and look at how they can adapt their behaviour (rather than placing such pressure on him and us)

If you've read this long I do apologise, I am just needing to vent and let it all out!

Handhold here, my 4 year old DD sounds very similar. Has bitten and tried to strangle class mates (but school doesnt see the obvious trigger for this....) Its really tough. Have you applied for DLA? That helped me we we got it. Have you considered homeschooling? My DD does so much better with a low demand environment Im not keen for it myself but know if may be my future! How are they with demands? massive difference in mine with demand via low demand lifestyle. Have you looked at FASD as thats what we have and sounds so similar? I think I have nothing really to help, but a handhold however. Maybe this too will pass?
Also - do vent, I think it helps to talk about it!

I almost could have written your post - there is so much parallel to our story. Things appear to be getting better here (from what I can tell) and school have applied for an ehcp. I believe that they are being supportive (but am mindful it might turn out there is a hidden agenda).

I know that it's part of 'what we sign up for' when we enter into adoption but it can be so much more challenging than we ever envisaged and it is so lonely too as people don't know about your story or they don't understand.

I have no words of advice for you as you appear to have exhausted everything (more than we have currently). A handhold and a hope that things improve for you and your family ❤️

We've been through similar. It's exhausting.

Has he had an FASD assessment? As if there is pre natal alcohol exposure, fasd is likely. Fasd needs a different approach to "just" trauma, and likely has caused issues with learning that will become more apparent.

If he gets an echp, and you want him in a private school, you may need to go to tribunal to secure that. Be aware that SEMH provision can be challenging and worse behaviour, there's a poster here who struggles with this.

I am a bit concerned you haven't mentioned FASD at all, perhaps contact your local FASD group?

@teekay88

This sounds incredibly tough.
The first thing I'd say is one of you needs to get signed off, something has to give, you need breathing space.
Secondly - are you in receipt of DLA, if not get applying
You don't mention medication for the ADHD - don't be afraid of it, it can be huge help
Lastly school - find the right school, don't worry about whether its called special or mainstream. However bright he is, your son will not be able to learn in the environment he is in now. Don't make the mistake of thinking that special schools aren't for bright kids.
My son came to me age 8, he was in special school. He went into mainstream school for year 6 and mainstream secondary. Neither of these schools would be considered highly academic, they had high proportions of kids from disadvanted backgrounds and conditions such as ASD. What they did have was teachers dedicated to the success of their children, wanting then to achieve and strong pastoral support.
He's now in his second year at university.
Find the right school and fight for it
It's tough, best of luck

Hi. Sorry it's so tough.

My 2 are adults now but primary was awful. Here are some thoughts:

Focus on getting the ehc. I would suggest you get some specialist support from the likes of Sos!SEN (others are available). It is crucial that the EHC is correctly worded and mostly you need advice to get the best out of it. Often the LA will have provision in mind eg a behaviour unit and write the EHC to support this rather than do a proper needs assessment and then find the right placement eg an autism unit.

I used to work as a supporter for parents getting ehc plans and I can't stress enough that local authorities are sneaky and don't follow the rules. Please get support. Where are you in the process btw?

Secondly do not go private - unless it's the LA paying for it via the ehc. It is really hard to get an ehc if you are in private provision and he will need one going forward. Don't move him anywhere new while the process is going through. Just tough it out with the current school. He could for example get a 1 to 1 TA to stay there.

Thirdly, do nothing formal outside of school other than maybe additional needs sports clubs. Your LA will have a local offer on their website which lists what is available. Otherwise create a low demand environment and let him relax.

You are on the right tracks with the sensory stuff. Has he had speech and language input? This could be a huge help.

Solidarity from me. School is not made for our kids and I am at point where I don’t think DS (9) probably shouldn’t be in one at all. The ‘mish mash of home school/community provision’ you mentioned is actually what I think would work best for my son at least, so I wouldn’t be too quick to dismiss it.

Our local authority, like most, won’t put together a EOTAS package until all school options have been properly explored, though. So we’ve been through a round of consultations with special schools and all schools have said no. Apart from them all being full, he is too capable for some and not academic enough for others, and unsurprisingly most are also citing 'dangerous behaviours' on his EHCP as reasons they cannot take him. I agree with the schools. None of them are the right fit for him.

We've managed to get ten hours a week of funded tuition at home which has been amazing for him, and then he does four afternoons a week in a small group setting within a mainstream school, where he likes the adults but shuns any attempts that they make to teach him anything and just gets on with crafting activities on his own, while trying not to get wound up by the other children.

When things were awful at school, I did what others have suggested and cut back on after school activities, keeping things low-demand and comfortable. Now he is on reduced hours I’ve been able to reintroduce some carefully selected evening activities that I can attend with him, and he is getting a lot out of them. As it stands, this is a pretty good set-up for him, although it’s logistically challenging for me. As an ‘interim’ measure I’d be happy to keep this set-up, while the LA chases themselves round in circles insisting that he must go to a school that they can’t find because it doesn’t exist.

In terms of what you have said about this: I am hoping this places some pressure on school to adapt their traditional approach and look at how they can adapt their behaviour (rather than placing such pressure on him and us). This has been an uphill battle. It took until year 3 until I really felt like school were listening to me, and while they have taken a different approach to try to accommodate him, it's still so far from what he actually needs to be able to learn.

I would echo what others have said about sensory OT and ADHD medication. I am sure you realise this already, but you need to take every opportunity you can to build his self-worth, and keep telling the school that they need to do that too. This needs to be highest priority.

I found a lot of peace in letting go of ‘in school = good; out of school = bad’. This simply isn’t true for all children. The difference in my child between in school and out of school is monumental. Although he is a ball of energy, he is an absolute joy at home.

We are in a relatively good place at the moment, but I will deregister him if I have to, especially now he’s that bit older and doesn’t constantly need someone on him. Because taking on his education, even on top of keeping up with my own job, actually feels like less work and stress than having him in a school.

teekay that sounds so rough going.

I wanted to add on the topic of special schools. My youngest DD just started reception in a special school, she has severe/profound learning disabilities and can't walk or talk so it was always on the cards for her. I had a choice of two special schools in our borough, one that was probably the best educational fit for her and another one for children with very, very complex needs which on paper wasn't the best fit and nursery didn't think was right educationally, it's only got 50 pupils with complex medical needs, many on ventilators etc. However the smaller one 'got' what I was saying about her needs and adoption/trauma and were happy to take her. Most people didn't think she would learn much there but I went with my gut.

She started at the small school n September and settled in way more smoothly than expected which was a huge win, then becuase she felt safe and secure she is coming on loads. Has started to use symbols to communicate, is willingly doing physio and is now able to stand with support. When she is dysregulated they are so used to it and experienced, she is persistantly agreesive in terms of scratching, biting, hitting etc. and they have never mentioned it negatively, will just let me now if she's been upset. I know that this would have been less likely to happen in the best acedemic school for her. If the approach is right the education stuff will fall in to place much better than vice versa.

In the mean time is there any other things you can put in? A fit note so you can have a breather next week when he goes back to school? DLA or ask about an adoption allowance, I appreicate these aren't quick or easy wins especially adoption allowance.

Thanks so much @tonyhawks23, I'm so sorry to hear you've been going through similar. I started a DLA app a few months back as a few ppl suggested it but in honesty had such exhaustion from all the other stuff i never completed it. It on my to do list for January though as I'm realising more and more I'm as much a carer as a parent at the mo! I notice a few ppl have mentioned low demand environment and I definitely think its something we need to work on. We have a large family and v busy lives, always something going on, and I def think we need to simplify any other social pressures as much as poss. We had considered FASD a while ago but the profile of symptoms never seems to quite match. I have also heard its v difficult to get diagnosis (apparently only 2 clinics in the country?) but i would not be surprised at all given birth mums use. Thank you so much for the handhold xxx

@Timetosortmyshitout thank you so much for your reply and i'm sorry to hear you've had similar but pleased to know that things appear to be improving. I am always struggling within myself too at what may be a hidden agenda and what may be my defensiveness over their responses so i never know whether i am reading too much into things but definitely feel a sense of them wishing to wash their hands of him. we went into adoption with our eyes wide open and close understanding of drug and alcohol effects and impact of trauma as i used to work in these fields but as you say nothing prepares you for the lived reality of it. i never have regretted adopting even now but its such a lonely road sometimes and so little ppl around me who truly get it. thank you for the handhold xxx

@rabblenotrebel thanks for the reply. I had considered FASD a while ago but he never seems to quite fit the profile when i read up on symptoms although it would make perfect sense as he was prenatally exposed to a no of substances including heavy alcohol use. he has no facial features of FASD but i now understand with research that this is only present in a v small % of cases. i have heard its v hard to get diagnosis with only 2 clinics in country but maybe something i should pursue. the main issue was amphetamine exposure which undoubtedly would have had an affect but strangely there doesnt appear to be any named syndrome for this although research seems to suggest neurodevelopmental and behavioural impact. thank you for the heads up about the tribunal thing, i will keep this in mind. i think we are steeled for likely having to appeal against an initial rejection anyhow given what we know of how difficult our local LA is. thats a good point about SEMH provision impact on behaviour and this is something we've been struggling thinking about as of course he'll likely be exposed to a lot of other dysregulation with siimilar children. i am just hoping that a school better set up for it may mitigate this :( x

@Ted27 thank you so much for your reply. Its definitely been a consideration whether i should just sign myself off as the stress has been unreal but i think knowing myself this may add to my anxiety and i think a part of me is still trying to hold on to my work as my one outlet and lifeline. i feel like losing this would just be yet another thing its impacted but it does make complete sense as i could easily be signed off with how i'm honestly feeling and it could take some pressure off. my partner and i have decided i may do this as a last resort if needed. i'm about to go head first into being at risk of redundancy in january so i'm also a bit conscious of how this might complicate this although i work in HR so aware of my rights etc and do have a v supportive employer in general

Re DLA i started an app a few months ago but in honesty was so burnt out with all the life admin around it i was managing that it fell to the bottom of the to do list but i've decided to get going with this in jan. We are actually pursuing ADHD meds as we think this could support some of his regulation and impulse control so an appt for that next week. i have heard there is a meds shortage at the mo so i'm not sure how long it will take but i have friends who have said its been a game changer

you are completely right about the school setting, my main concern is the envirionment as i agree if thats right, then the rest should follow. considering how much time he has had out of the classroom he is still managing to absorb the learning so i am thankfully not so concerned about his academic potential but was just a little worried we'd get into a situation when he is older where he wouldnt be able to do GCSEs etc. i have also been told that the transition back to mainstream secondary can be hindered by it but that may just be scare mongering and i'm glad to hear this hasnt been your experience xxx

We have experienced very similar - but are now thankfully out the other side of it.

A couple of points that may help...

• Citizens Advice Bureau will sit with you and complete the DLA form for you (a friend has just done this with them for her child and said it was so much less stressful and time consuming than when she'd done it by herself in the past).

• would it be worth considering flexi-schooling as a permanent option rather than having it thrown on you by a school in an emergency (We found the balance changing to mean more time at home than school made a significant difference. You can have an EHCP which states a certain number of days/parts of days as EOTAS - education other than at school.)

• if at all possible, seriously consider getting a specialist educational lawyer to read through the proposed draft EHCP and writing the 'parent response letter' for you. Previous posters are not kidding about LAs being sneaky - they are very good at writing things so that provision appears to be stated, without it actually being enforceable!

Lastly, stay strong. It can get better.

Special needs schools can be a great environment for kids who need help to regulate. Both of mine went to sen schools. There were some extremely able kids at these schools who went on to uni even - the great thing about an ehc plan is it goes up to 25 (though doesn't cover uni). They can take their time and do college courses then go to uni for example.

The sen schools are not picky about discipline and put up with a lot that would not be tolerated in mainstream.

I had friends who tried everything to keep their kids in mainstream even though a sen school would have worked for them. And it was always a problem. Most dropped out or worse.

Imo any kind of specialist provision is better.

Hi, just wanted to post my solidarity as I'm going through the same thing atm. My son is also 6, in yr 1 but I honestly don't think he's been in his classroom for longer than half an hour at a time every day. He spends the majority of the time in the nurture room and has barely any social times with his peers. We're in Wales so no ehcp but the alnco is trying to sort out a LA maintained IDP, which is the equivalent I think and will be with him throughout his education. We have a meeting on Thursday with the ed psych and our social worker and the adoption services' psychologist is coming with me as he's recently been assessed by them as having a cognitive age of 3.4 He loves his school (as do I, as I know they're doing their best for him) but a move could be on the cards for him due to language.

I would disagree- the wrong specialist can be much worse than mainstream, "specialist" by definition can't cater for all needs, they specialise.

Getting FASD without facial features diagnosed can be tricky, but it's so important. Those with FASD have a reduced life expectancy, and need other organ screening. I would start with asking your GP for a referral to a paediatrician, and go from there. NICE guidelines are that fasd and PAE should be considered at all neurodevelopmental assessments. It isn't though! It's also important because medications are different for those with FASD. It's a spectrum disorder, and so not all boxes need to be ticked for it to be diagnosed, you would need confirmed PAE, though.

For us, getting the right diagnoses, and the right schools has been a battle, but worth it.

@teekay88
I understand the feeling about work being a lifeline but something has to give.
When I reached my low point I was signed off for 4 weeks. Any longer and I think I would have struggled to go back and I did want to go back. The potential redundancy I understand is an added complication.
4 weeks was enough to regroup and get some things moving - in my case it was the Adoption Support Fund, you could get that DLA form done.
I also really wouldn't worry about GCSEs right now. The qualification system could be very different in 10 years time. There were always be alternative routes. Children also don't have to do GCSEs at 16 because everyone does. Another year or so won't matter.
I've tried to bring my son up to do what's right for him and not to worry what everyone else is doing.
He didn't get a great set of GCSEs but he did well enough to get him on to the next thing, which was a college course. He didn't do A levels, he did a Btec. He did very well but was a few ucas points short and had a contextual offer. There's more than one way to skin a cat.
The priority at this stage is to get your child into an environment where they can learn, the rest will follow

I didn't suggest the wrong kind of specialist provision. And in a previous post I mentioned a 1 to 1 TA in mainstream. So I'm not anti mainstream.

I'm just making the point that sen schools can be great for children who need help to regulate, and that you can still do well academically.

My younger daughter went to a specialist speech and language school- it had all sorts of sensory support, and a lot of kids who went to uni.

This sounds very similar to our situation.

After all this from age 3 - 8 LO was taken out of school and we've now been Home Educating for well over a year.

The violence at home as well as the self harm has MASSIVELY decreased. LO has also gone from rock bottom toxic shame to actually smiling.

I was never able to return to work after Adoption leave and spent years spending the entire school days dealing with Adoption admin. I.e numerous emails, meetings, phonecalls.

Now the Adoption admin consists of an email every few months.

Oh and all the years of assessments and therapy made little difference. We haven't had any involvement with PAS since we left school behind.

We have risen from absolute crisis to life being manageable. It's very challenging but now manageable.

My son was similar. School imploded in reception. He had the whole large London primary on its knees (aggression, defiance). After a hellish year I removed him to home educate him. Was supposed to be for 6 months but I did it for three years. It was just what he needed. Great for his attachment and also for his self confidence. Lots of home education groups where I lived and I look back with fond memories of that time. Had to give up work though.

Used the time to get him an EHCP and eventually funding for an amazing special school which has been my rock. A low demand very positive environment. He's now 13 and doing so well.

it was a huge fight getting him the EHCp and funding for the right school but what a difference it has made to our lives. Good luck, I feel your pain.