To feel a bit of a fraud? Autistic DD

[MySunshineMyOnlySunshine]

I have an autistic/adhd/learning difficulties 6 year old and I can't help but feel a bit of a fraud for how much help we get when there are so many worse off families not able to get it?

I feel permanently really guilty and that it is just me being lazy and that DD is absolutely fine and if I just did more then she would be just like every other child.

She has just been agreed a move to a special school and I keep hearing of children who struggle so much worse at school not be allowed it. We have a substantial respite package and again, there are children and families who need it so much more, we only got it because school nagged for a respite package and the LA relented.

I'm just finding it all a bit hard to accept that she needs any of it. AIBU to feel a bit of a fraud?

You absolutely wouldn't be getting this support if your daughter didn't need it. LAs are not in the business of giving families provision that is not required. And they certainly don't agree to special school places without overwhelming evidence.

It is not that you shouldn't get these provisions while other (in your opinion, more needy) families don't - it is that all of you should get the provisions you are entitled to.

While it is sad that other children are not getting the support they need, that is not your fault. The fault lies with the system.

Just thank God every day that your daughter's needs are being met, and for that fantastic school that fought your corner and ensured you got your respite package.

@Lwg87

The problem isn't that you ARE getting it. The problem is that others aren't. Don't feel guilty and be glad the system is working for you

Exactly this. As a tax payer I don't resent you getting help, I wish other people got more. It shouldn't be a race to the bottom.

I kind of see where you're coming from.

My DS (3 with asd) has just been awarded an EHCP. The process thus far has been extremely easy for us as his SEN nursery took the lead with the paperwork and information gathering, all we had to do was show up to appointments via zoom with SALT and an Ed psych. The chances are he will be given a place at a specialist school next year.

Then I read about other families fighting for years to even get the L.A to agree to an assessment, rejections and tribunals.

Children struggling terribly in mainstream with zero support and exhausted parents who are battling to get their children the help they desperately need.

I don't think any SN parent would begrudge you the help you clearly deserve. Be kinder to yourself.

Are you saying that because she doesn’t have challenging behaviour?

You might be feeling this because she’s relatively ‘easy’?

I might have this wrong of course, but her needs may not be so on the surface, or ‘difficult’ for want of a better word, however she may still have high needs about learning and accessing what she wants that take specialist care? So absolutely of course she should have this. Sometimes a child with a lot of behaviours may need help with those but not as profound learning needs. Does that make any sense?

@Lwg87

The problem isn't that you ARE getting it. The problem is that others aren't. Don't feel guilty and be glad the system is working for you

This is so very well put.

@Ociana yes I expected a fight for the EHCP but in reality the only stumble we hit was agreeing a suitable specialist option as her needs are apparently classed as 'complex' and specialist schools here aren't a fan of complex, which I find baffling. It has all felt far too easy.

@Startingagainperson she can be fairly challenging behaviour wise. I know one of the key things picked up is that her behaviours that aren't 'challenging' as such are highly atypical and some place her at significant risk which require 1-1/2-1 at all times (according to school and her social worker). I get a lot of comments about how amazing her speech is but it is nearly entirely echoliac from her obsessive TV shows so even to me she has moments where she comes across so much more able than she is and it throws me that maybe they are wrong about her learning ability.

I see so many parents on their needs with children trashing their homes, hugely violent towards them and what comes across as relentless challenging behaviour, DD has her moments but for the most part it's just atypical behaviours and really intense.

I am one of those families. I don’t begrudge your dd or you. All SEN children should be able to thrive. It’s not your fault that we get nothing, it’s the conservative council.

I see so many parents on their needs with children trashing their homes, hugely violent towards them and what comes across as relentless challenging behaviour, DD has her moments but for the most part it's just atypical behaviours and really intense.

I'm autistic and have never been violent or had meltdowns (there have been moments over the years, but they are absolutely not and never have been standard for me) I am more of a 'shutdown' and tend to withdraw when I'm feeling overwhelmed and cannot cope.

I felt the same way when ds first got DLA & the higher rate tax credits. But as he has got older & some of his problems have become more pronounced I am just thankful that we get extra money. Like you ds is autistic, he also has hypotonia, dyspraxia, ME/CFS, nerve damage in his legs, anxiety & depression, IBS & eczema. He is 17 now & we get enhanced rate PIP for him, both elements, daily living & mobility. This money is needed much more now, he wears shoes out in about 6 weeks due to his poor walking, loses things regularly due to his autism & dyspraxia, needs larger sized clothing because he eats & doesn't realise he is full & carries excess weight, often is too shattered to wait for the bus to come home from school, needs a laptop to do all his work on as his handwriting is worse than a 5 year old due to his hypotonia. As your child gets older like me you may find that their problems increase, don't feel guilty for claiming money that is due to you.

I'm autistic and have never been violent or had meltdowns (there have been moments over the years, but they are absolutely not and never have been standard for me) I am more of a 'shutdown' and tend to withdraw when I'm feeling overwhelmed and cannot cope

You sound very much like my OH, also autistic. We've been together for many years and I've not witnessed a meltdown, but many shutdowns.

Sadly with our DS violence and aggressive meltdowns are a near daily occurrence. I can only hope that in time they become less frequent. It's heartbreaking to see.

I see so many parents on their needs with children trashing their homes, hugely violent towards them and what comes across as relentless challenging behaviour, DD has her moments but for the most part it's just atypical behaviours and really intense.

Yes I do see what you mean then, I feel hugely for families with extremely high need children and having to be constantly vigilante. I don’t think they get the support they need and I do actively try to get involved with people either to support a campaign or through just being a friendly ear for them to offload their troubles.

You are right in that I don’t think that there is an ‘extra tier’ for children who need very intense support. There should be and from an early age. If it helps you, you could use the time and energy you do have to assist others in any way you can, things like writing to MPs.

However that doesn’t mean your child doesn’t need help too. My child had a lot of echolalia too and sometimes people would think that meant he had language, whereas he was actually very near to other children who did not speak. A friend of mine had a child with zero speech, and yet he understood almost everything. My own child understood almost nothing speech wise. So both our children had probably as severe language difficulties, just my DSs was more hidden.

I know your child is 6 now with ASD and a few other special needs. I know you feel bad getting extra help for them but in reality is that your child needs and deserves the help they are getting.

I have a friend who's child has ASD and she has faught to get the extra support and monetary allowances they were entitled to. She has put a lot of extra time and work into various things to help her child but they are now doing very well and getting ready for secondary school.

Rather than feeling bad re getting the services ect that your entitled to I look that the extra things I get or avail of are to help my child reach their full potential. Its a well known fact the early intervention can make a big difference to the ASD child. The extra money/support you get now could make a big difference to your child as they grow up.

If you don't need the support you have in place tell the person who organises it and they can adjust the plan. It won't mean the person you think is more needy gets more services though ,all support plans are subject to assessment and review. Just remember getting services reinstated my be really hard so think carefully before making any changes.

Sorry can see you meant support at school for your child not social care. With school I would grab it with both hands and not feel guilty at all. Your priority is your child. As someone said it isn't your child getting too much it is that other children aren't getting enough. Also you may feel more able to manage complex needs at home for what ever reasons,that doesn't mean your child warrents less support in school.

@MySunshineMyOnlySunshine out of interest what does your respite package look like?

We have only recently got respite after years of waiting because ds's needs are so complex. He has been eligible but until now there has been nothing available/no one prepared to work with him. Your daughter getting respite will have no bearing on this. There are big gaps in respite provision but this isn't the fault of those that get it.

Ds has good educational provision and I now use the legal knowledge I have gained in securing this, to offer support to others.

@adhdpunchbag we get 10 hours a week for a carer during term time, 20 hours a week during school holidays and 1 overnight a week during school holidays.

@Lwg87

The problem isn't that you ARE getting it. The problem is that others aren't. Don't feel guilty and be glad the system is working for you

Yes, this is such a good response!

YABU for feeling like a fraud. The right support and early intervention is so important. Imagine how things might be if you didn't have this support in place?

@Timeisavirtue

I 100% understand because I feel the same. Ds13 has autism and is being assessed for adhd. He already gets help at school and we are in the process of an ECHp. I always think that there are worse off people than us but DP always points out it’s the system that’s flawed. We also have a blue badge for him. He has often lost focus getting out of the car and has almost hit other cars and he struggles to stand still and so is a danger to himself and other drivers.

Got to say I am a bit jealous of people with a blue badge. I can't get one AT ALL for my youngest (6) and he is extremely dangerous when out. He has autism, epilepsy (although not serious) and learning disabilities. I am trying not to be bitter about it and absolutely support anyone who thinks they might be eligible to apply. As with all of these things it's a bit of a postcode lottery.

The blue badge system is definitely not equitable. So many people not getting one who should. Likewise hrm dla which seems to depend upon whose desk it lands on . People are afraid to challenge awards for fear of lowering the care award.

We got a blue badge with ease, our LA handed them out like smarties initially when the hidden disability rules came in place but since have massively clamped down.

I haven't gambled for HRM for her because of her HRC award so have stuck with LRM

Ds had LRM from 5 to 11. He got HRM at renewal after mandatory reconsideration ( even though he is clearly Smi). He gets a blue badge automatically but we will have to apply separately when he moves to PIP.

I understand your feelings, I had similar feelings when my son's EHCp was approved straight away. He does have difficulties and certainly needed support, but the support put in place (mostly around his transition to secondary) was so right that he loves school and is thriving. I am fully aware it could have been entirely different, but I still feel a bit odd when I hear about some people's battles to be even assessed. I feel like a rare case, sadly, where the system has worked as it should.

Where do you live? My six year old is autistic (diagnosed at 2.5), he doesn’t speak any words at all, he is still in nappies and functions at the level of a 2 year old. He gets middle rate DLA and no mobility. There’s never been a mention of respite (he does attend a special school).
You’re very lucky with the help given to you, you should by no means feel guilty though