To avoid my friends for a while. SN child and I’m jealous.

[DefConOne]

Really struggling seeing my friends DC leaving year 6. They are all doing so well with academic and sports achievements. All enjoying parties and leavers assemblies. My DC is at special school as has been unable to cope in mainstream due to her ASD. She isn’t happy about it.

I feel like a bitter, jealous cow but I can’t join in with the conversations and it is really painful. Luckily I have a few child free friends so I am trying to spend time with them.

Do I just suck it up and nod and smile while my friends chat about their DC, or just avoid them for a while?

I’m definitely not strong head but I guess it’s easier to seem that way online! I feel relatively strong right now but at the start of this month I had what I think was some form of mental breakdown. It all just piled on top of me until even tiny issues meant I couldn’t function.

FrenchBoule I really hear you. I feel so much of what you’re saying. I hate ASD. I feel like it has taken part of my children away from themselves and from me. I guess maybe this is a particular issue if your children had big regressions as mine did. I’ve been called disablist by autistic adults for expressing that I hate ASD and do not want my children to be autistic, they think I hate autistic people. Many of the people who are arguing this weren’t diagnosed until adulthood or are self-diagnosed, and for them ASD is not a disability, it has made life more difficult for them in some areas but better in others etc. So far there is nothing positive about ASD for my boys, only debilitating delays. Ironically I think there’s a reasonable chance that I am autistic too, now that I know so much more about it, but to an extent that it has impacted my relationships and my career but hasn’t prevented me accessing an education, a grammar school, a degree, getting married, having a family, etc. I would never claim the label without a diagnosis and I would certainly never claim to understand the experiences of all autistic people. I’d give my right arm for my children to be able to communicate basic needs, screw getting a degree or becoming a lawyer - I just want to know if they are hungry or thirsty, too hot or too cold, in pain or not. My wants for them have shrunk down to the most basic things and I don’t even dare be hopeful about those things happening.

Sorry, I’ve gone off on a random tangent again.

I’d love to be able to talk to my friends with NT kids about this stuff and when things are really really bad I may mention it, but they don’t understand and while they can sympathise, no one wants a friend who’s constantly struggling and having problems. I keep it mostly to myself. Those who do want to listen often don’t know what to say and can come out with really upsetting things inadvertently.

I can tell you you’re all doing an amazing job, even while believing I’m doing a terrible job. That’s parenting I guess!

OP, have they tried anything to help her with her anxiety? It seems they don’t tend to medicate kids with ASD for anxiety but I’m not sure why, surely even some help with the physical symptoms of anxiety could be beneficial? Just thinking out loud!

Yanbu
Not at all
Christ I feel like this as my DC didn’t have a great year 6 and isn’t going to the school we desired . He has been miserable and I feel like I failed him . But he is NT and I have no iota of what you are experiencing

I hope you can find an additional group who can emphasise and support you

Not an unreasonable way to feel at all OP x

I’ve been called disablist by autistic adults for expressing that I hate ASD and do not want my children to be autistic, they think I hate autistic people. Many of the people who are arguing this weren’t diagnosed until adulthood or are self-diagnosed, and for them ASD is not a disability, it has made life more difficult for them in some areas but better in others etc. So far there is nothing positive about ASD for my boys, only debilitating delays.

Hang in there @SinkGirl

I’ve had the same. I dare not speak sometimes having to hide my overwhelming exhaustion and sadness because either self diagnosed autistic adults will pile down the hate (how dare you consider ABA, how dare you say your child still being in nappies is negative it’s just different) - to parents with NT children saying that it’s okay DS doesn’t look ASD at all and then removing their kids in horror as soon as he has a meltdown, and then are confused as to why I don’t tell him in long explanations why his behaviour was inappropriate. (DS doesn’t understand most language or get concepts or regulate emotions well).

And breath...

It’s forums and threads like this that can help us all realize we are going through similar. We really aren’t alone.

how dare you say your child still being in nappies is negative it’s just different

Oh this is even worse - when they try to frame an obvious disability as a “difference”. No, the fact that my almost 3 year olds can’t understand or speak a single word is not just a “difference” - and this is always from someone who has no experience of the more debilitating aspects of ASD.

Of course ASD is just a difference if it doesn’t prevent you from functioning in the world, and there’s nothing wrong with being different - I dare say this applies to many things about me too (my very limited diet due to sensory issues with food, my inability to listen to someone talking without worrying about my facial expressions, my detrimentally obsessive perfectionism etc etc). But my children are an entirely different scenario.

Are you doing ABA? If so, how is it funded? I found out that my local council funds ABS for precisely one child in the whole borough. There are a couple of ASD schools locally which I will try to access via EHCP but not sure if they are ABA based.

@FrenchBoule
“Fuck you autism, just fuck you. Why my child?”

The way you put that really hit me. I’m sorry, this sounds so trite and I can’t find the words to properly express what I mean - I think it’s that the power behind those few words just seemed to me to encapsulate so much pain and struggle that it really brought home to me how I, with NT children, cannot even begin to imagine what you have to deal with.

That really hit me too burblish

For me, we had one twin who had a massively obvious overnight skills regression and months of waiting for assessments and help. During that time multiple people suggested it was probably ASD so I got some books - reading them, I realised with growing horror that they did describe DT2 but even more they described DT1. He was so advanced in a few areas and we were so focussed on DT2 that I hadn’t realised he had stopped making eye contact or showing interest in us. Realising that both my children were affected absolutely demolished me and I did spend a lot of time wondering why us, why both of them, just why. I still don’t know obviously and I still feel responsible, but I am getting there.

If I could wave a magic wand and take it away of course I would, but I can’t. I have tiny hopes now rather than big ones, but I still have them.

@sinkgirl I did a kind of mashed up version of ABA and floortime / really taking my child’s lead in order to gently, very tiny steps, get his attention on other things. I did this myself by studying everything and finding what works best for my DS.

DS at three also had only 5 words, non functional, and to my shock I realized he had virtually no receptive language at all.

I do think some ABA isn’t good, if it is too directive and regimented, however the breaking down into small manageable goals was so helpful. My DS got way more upset with therapists not getting him and ‘forcing demands’ who weren’t ABA. Really upset. He needed a very individual, gentle approach as is demand avoidant. I learnt to be his advocate. I saw therapist treat him as if his meltdowns were just part of his ASD, rather than caused by their lack of skills.

If I had let others dictate what I did, including autistic adults, DS would still be in nappies, feeding through a tube, with no language at all and banging his head against the wall every day.

But DS is a happy, funny, lovely 6 year old who will probably never be independent, but his language is beginning, he’s learning maths, geography and music, and finally toilet trained! Had to do it myself though.

Wow, you’re amazing. You should be really proud of that, I hope you are.

My boys have made some progress since we started portage and had some SALT but SALT especially is so minimal I’m having to figure it out alone. DT2 has started PECSing for a few toys and even sitting independently flicking through books / using posting toys. The other day he stacked blocks for the first time ever. This time last year he wouldn’t touch a toy and when we started portage in September we couldn’t get him to acknowledge anything. We are getting there.

I just want to say I think an incredible disservice was done when Asperger's was added to the Autism label. These should have remained separate. I don't need anyone with Asperger's to speak for non-verbal Autistic children they would never have the slightest clue about. It's like trying to say a full blown hemorrhage with urgent blood transfusion needed is the same as a paper cut. People can piss off with that bullshit.

Totally get this. Especially the bits about autism being a difference. My 13 year old ds1 was diagnosed with aspergers syndrome just before they stopped calling it that. He is very high functioning but also very gullible and not remotely streetwise. His autism could be described as a difference rather than a disability. He is very very different from my 5 year old ds5 who is being assessed for asd, soils himself regularly, doesn't sleep through the night and needs constant supervision.

I totally agree, although you can see some similarities in the triggers, the severity is so different. I’ve family members with kids in special schools and I have never and would never talk to them about the hfa type issues we have which mostly manifest as how to manage anxiety, social issues and minimise routine changes.

Tbh I don't really socialise with anyone outside of the S/N community now ,people just don't get it ,unless they are living it, ds2 is nine and severely autistic with learning disabilities , it's taken me years to accept it, he's beautiful and funny and makes me smile every day ,but life is very different to how I imagined it would be and can be very difficult sometimes .

Yadnbu, it is hard. I have a 6yo DD with ASD. She is non verbal and developmentally that of a toddler. She attends a complex needs school and over the last couple of years found I don't really have much in common with friends I met when pregnant/DD was a baby now.

I have a dn with ADHD and my parents are always comparing them with DD because it's 'basically the same'

@gingerbreadsprinkle - totally agree with you about the ridiculous grouping of Aspergers with more severe ASD. They're not comparable.

I know it can be an unpopular opinion but I also agree with gingerbreadsprinkle.

Have to agree gingerbread , it's just not comparable when your child is non verbal, still in nappies and will probably never be independent ,and don't get me started on all the ridiculous meme,s about it not being a disability just a different ability etc,for some it might not be but for my son it very much is .

I hope today is a better day for you, OP. If it isn’t, hoping for better for you tomorrow, or next week, or next month. Be kind to yourself.

This thread makes me feel very teary
Not in a patronising but in a ‘fuck I really hear you ‘ way

You can’t polish a turd . It’s fucking tough

for you OP

I always feel awful when I see posts about looking forward to the holidays and doing all sorts of stuff. I hate school holidays because DC1 struggles hugely with the change in routine, I can't go anywhere without an additional adult in case DC1 bolts, now DC2 is walking and climbing out of the pushchair. and I feel like I spend most of my days trying to stop DC1 from injuring herself, DC2, me or destroying the house in a meltdown. Frankly i struggle to cope without the respite of school.

And I'm lucky in that DC1 is not severe as others are affected. She's now verbal - she's at a similar level I guess to DC2 who is nearly 2 both in her understanding and behaviour/emotional control, just bigger and more violent.

DH doesn't like when I say I wish she didn't have ASC as he says it's a part of her, but I can't help it. The "it's a difference not a disability" makes me feel a hundred times worse.

I do agree that the actual autism spectrum is very wide. (Not the crap about ‘everyone is on the spectrum;’ they are really not.) My DS is HF (though not Aspergers) and there are daily challenges but nothing like the challenges of more severely affected DC with autism or other disabilities.

I think we can share some understanding and empathy of the uncertainty around the future for our DC, and their own sadness, distress and anxiety, whatever their SN.

In some ways having a DC who is more able, but still not able enough, can mean that support in school, financial help, respite etc is even harder to obtain. The pot isn’t limitless and it’s right that those more severely affected have a higher priority, but that doesn’t make anyone else’s difficulties less worthy of sympathy.

We are just ordinary people, parents of DC with SN, we’re not some sort of amazing angels who can cope with more than anyone else. (Which can be irritatingly assumed.) You just do what you have to, and sometimes we can’t cope. Sometimes we don’t need people to come up with pat ‘solutions,’ we just need a bit of acknowledgement that it is hard and it isn’t fair.

Gosh, I don’t know where all that came from. Sorry for the essay!

I also don't think all the autism awareness in the media etc helps because it tends to focus on very high functioning individuals, in a look what people with autism can achieve kind of way whilst ignoring the fact ,that it is a massive spectrum and those individuals at the other end of the spectrum may not ever even be able to speak.

I celebrate all my (ASD) DS's achievements because they're as important to me as his peers own achievements are to their parents. I was thrilled a few weeks ago when he licked some sweetcorn, and I told all my friends about it! Most of them are so kind and genuinely share my joy, and if they don't they're not people I would spend time with.

Hi SinkGirl in regards to accessing support with other parents facing similar challenges have you tried looking for Facebook support groups, we face a different situation with my DS but have found a fb support group and it's really reassuring to find people you can talk to or just read chats and feel less lonely about it all.

Yep, this is us. I hear you

I can't know what it is like to walk anyone's shoes but mine.

I'm pretty sure I have some shared experiencees with most if not all parents - whether their children are NT or not. I am also pretty sure I share more experiences with parents of children who are not NT.

But no-one else knows what it is like to walk in my shoes either.

My DD (14) could be described as "high functioning" because she has no obvious cognitive impairment or learning difficulty other than dyslexia.

She is highly verbal and can manage all her own care needs independently. She was out of nappies before she was 2. She thrived in mainstream until key stage 2.

But her autism has devastated her life (and mine). She has a PDA profile rather than asperger's but they are all types of autism.

The characrtistics of the autism spectrum are common to all profiles and all individuals, they just differ in the way they manifest themselves and affect each individual. It not a simple gradient of mild to severe.

My DD has had 4 failed education placements and is now assessed as needing education other than at school. Her anxiety is extreme and the impact of her autism on her mental health has been catastrophic.

I can't put into words what it feels like to have your 9 year old beg you to kill them because "If you loved me you would put me out of this misery!" She asked me "Is life alwasy going to be like this because if it is, I don't want to live". I have had to physically stop her from opening the car door whilst moving, and stop her from running out into the road infront of traffic.

She is desperately lonely and wants friends but finds social interaction and social environments almost unbearably stressful. When she was once asked what sort of an animal she would be, she said "Syrian hamster becasue they are solitary animals"

Her beautiful body is scarred from cutting which she first started doing when she was 11 as the final education placement broke down.

I had to give up work 5 years ago and have very little opportunity to socialise or even leave the house. I have absolutely no idea what our future holds.

I'm not trying to compete but I was hurt by gingerbreadsprinkle's comment about comparing non-verbal autism to Asperger's, a full blown hemorrhage with urgent blood transfusion needed is the same as a paper cut.

My DD may be verbal and fully toilet trained, can read and write etc. which I fully appreciate is beyond many others, but please don't tell me that the challenges in her life are like a paper cut.