To hate being a parent

[Margot78]

Dd is ten and we are currently in the process of applying for an asd/adhd assessment through our doctor but we have been told there will be at least a two year wait. School think she is fine a academically and socially, she’s just quiet but we have so many problems at home. She has such issues with clothes- wears the same scruffy clothes every day which she insists on and gets completely anxious at the mere thought of trying anything else on. She also makes me iron her clothes over and over, screaming at me that it is not good enough. Consequently we are late for everything.

She has meltdowns all the time over the slightest thing, it’s like constantly treading on eggshells. She often uses violent language and lashes out too. Daily life is horrible. She also has a million and one bedtime rituals that she involves me in and screams abuse at me if I don’t do things just right. She doesn’t get into bed till gone midnight. It’s like she rules the house. The only time I feel remotely happy is when I’m away from her at work. I know I’m not supposed to feel this way and maybe I truly am a horrible person but I hate my life. I feel tired, depressed and physically drained. It’s like being in a trap I can’t get out of. We always used to gave fun and be happy, I don’t know what’s happened to us but life has become so hard.

That sounds very difficult OP. I have two neurodiverse children (ASD/ADHD/OCD/DCD and ASD(PDA)/DCD). As another poster has pointed out your daughter is exhibiting strong OCD symptoms (ironing, bedtime rituals) which need a different referral to CAMHS - you need to do this in parallel with the ASD referral. My children have various conditions but personally I found the OCD nearly drove me to breaking point (and my son too) - it is very difficult. Medication has made a huge difference to him though and it has gone from being pretty much the centre of our lives to practically non-existent.

If you are on Facebook can I recommend joining the Autism Discussion Page, which is a series of posts by an expert and which I found very useful in terms of both understanding the condition and actual practical help in managing aspects of it. He has a series of books also which are worth getting but check the page first to see if you find it helpful.

On the behaviour/consequences debate mentioned above - you need to watch your daughter carefully and separate her behaviour into ‘can’t’ and ‘won’t’. It is completely inappropriate and damaging to punish a child for a behaviour that is not within their control, but don’t assume that because you may be able to control something that she can also.

Good luck OP - I hope you get done help so that both you and your daughter can be happier.

You sure it's not OCD rather than ASD/ADHD?

It is very, very common for ND children to present differently in different settings.

I don’t have any advice OP but just wanted to say I hope you get the support you need soon. Sounds incredibly difficult for you all.

The two aren't mutually exclusive. It can be difficult to distinguish between OCD and heavy reliance on rituals and rigid routines associsted with Autism, but there is a higher incidence of OCD in ND children and young people.

You need RL support. Posting here is risky as lots won't understand about ASD behaviours. E.g, they won't just get tired after a 20minute "tantrum", they can meltdown for hours. They can manage to be perfect at school and come home and be a completely different person.

Look at the NAS website. I started there when DD was first referred. The good news is that as everyone knows it takes ages to get a diagnosis, there's support available where you are awaiting assessment. Mostly this is support groups. Our local support group had another mum call us. We'd been having a truly horrific time and it helped so much just to talk to someone and get some advice.
I've ended up meeting up with a group of mums of ND girls once a month. One mum arranged it and the group gets larger each month. It's so helpful just to chat to other mums who understand. If I have confided some of what we've been through with friends they have been shocked and quite judgemental. At this group someone will likely smile in recognition and say, "oh yes, we had that, this is what helped..."

My goodness this post could have been written by me word for word! My dd10 is identical but she was diagnosed two years ago. Senco don't see a problem as she's fine in school because she masks but we have terrible issues at home especially school mornings where she completely melts down when it's time to get her uniform on. I've been at breaking point many times and feel like I don't love her but of course I do. It's the autism I loathe no matter how many experts try to put a positive spin on it. I wrote a post on here recently about it.

My most heartbreaking thing is the lack of friends. She just struggles so much with making them and keeping them.

I also hate my life on a daily basis and long for her not to have this for her sake and mine.

To you

I think you need to go back to the GP about the night time rituals. You can't and she can't go to bed past midnight every night both of you will be exhausted. That just makes everything harder. If she is struggling to sleep it might be she needs melatonin to help her. I would really push this because it is not healthy or sustainable for either of you.

I wouldn't worry about the clothes. My DS still strips the minute he's home and puts on a dressing gown. Can you buy the same stuff? So if she likes a t shirt could you buy more than one and in larger sizes for when she grows? I appreciate if she's clinging on to clothes that are far too small that is really hard.

Oh OP I sympathise. We too are trying to get a diagnosis (same age) but school aren't supporting because he's (mostly) ok at school, he's doing fine academically so is just hidden really. I'm so nervous we are hurtling towards high school, I just don't think he will cope there but by then it would be very late to get all the support in place. I don't know where to turn but we need help at home. And for those giving parenting advice, I have another child who is doing just fine, so I don't see it as a reflection of my parenting.

Sorry no help, just empathy.

I went private for diagnosis for my dd13 3 years ago. It was about 700 quid plus a follow up every 6 months. So it wasn't thousands.

She has ASD and ADHD.

She gets exhausted from masking at school and can be explosive at home which is apparently normal.

I try different things but I'm about to read the book The Explosive Child. It's been recommended a lot on here.

You are not alone OP, it's tough, but what I would say is if you can afford to go private do it. The medication for the ADHD has helped my daughter enormously at school.

The next bit might be a bit depressing but....she is doing a lot better in secondary because she is in a small private school in class sizes of 12. She would never have coped in large classes at our local comp. She was exhausted every day coming home from primary. It's the noise etc.

Sounds exhausting. You have my sympathy.

Hahahaha

@littlehouselights she's got a 7 month old baby so is an expert.....

She sounds as though she may have ocd type behaviour as well. Can u get a referral to camhs from gp? You need support now. Has your area got any phone lines you can use to get advice? Could you ask for meeting with teacher or senco to explore if she is totally fine in pe? How might she be masking her difficulties at school?

I. Mentioned pe as presumably involves getting changed into creased up clothes!

Well blow me down.

What a simple solution. Why hadn't I thought of this. Parenting my ND child would be so easy. And teaching my high needs SEND children would be so simple.

Oh wait....it's not that fucking simple.

I would suggest heading over to sn chat for support.
I have been in this position and feel for you. I almost had a breakdown in fact I think I did, I lost all of my friends who didn’t understand too but I am out the other side now.
I think educate yourself as much reading as you can. In my experience the doctors, school and camhs were useless. I read and read and then eventually went private which confirmed my intuitions.
people do not understand, you will feel very lonely but if you can get a hold of what the situation is and adjust your parenting the results you will reap!
my dad at 14 is amazing and I love being a parent. I know and understand her needs now and have followed my gut.
hang in there x

www.caudwellchildren.com/services/autism/ hi OP, it might be worth contacting these people. They have funding towards the ASD assessment. I think the ADHD one by itself is cheaper.

Have you told the NHS service you will accept a short notice cancellation if that's possible for you? I managed to get this added to our file by using Care Opinion to politely put pressure on. We had to pay for private though - now trying to get to see NHS paediatrician re medication.

Our DD (diagnosed with both) gets obsessions when feeling sad and disregulated.

It is very hard work. I don't think 'civilians' realise how little support is out there. We've spent about £5k and not had any NHS support at all except 2 GP appointments and the GP did take on the melatonin the private paediatrician prescribed.

@Pinkflipflop85 - so far my DS appears to be NT and I think that’s shite parenting advice for NT kids too.

OP join some parenting groups for nd kids. A diagnosis for asd can be a relief but we found doesn't offer much in practical suggestions. Read a much as you can on female asd. Talk to dd about her feelings and emotions. There's some great child friendly books out there. Make her realise it's OK to be different and have different thoughts. Work out of there is pressures at school that make her feel like exploding when she gets home. The more she can understand herself and tools to cope with big mentions the enter her coping mechanism can become.

I would be more concerned about ocd which is commonly linked into asd and anxiety.

This is called bullying, at best, when a child is this complex / ND. And futile!

That's a response to @BabyOnBoard90 comment. As others have said, if only it were that simple! We'd all be doing it. Clearly no understanding of the subject. Good luck to all those facing the challenges of parenting kids with extra needs, such as myself.

Do you have ND children @BabyOnBoard90?

Hi OP. That sounds intense. PACE Parenting could be the way forward ? The National Association of Therapeutic Parenting offer lots of courses, support groups, advice lines, handouts. My own experience with my son who has a raft of sensory issues, has had TICS OCDs, anger on a hair trigger and some ASD traits mean im jumping through hoops (so much nicer than the eggshells of previous years!) You can wait for half thier childhood for services to come and assess, offer solutions. Parenting practices that support ND and Trauma are great. Our home life has completely changed.

PACE is brilliant. the NATP are brilliant. The people in those networks really understand too. Good luck. It does get better.