Please no more strategies!

[nutleywombat]

My son has recently been diagnosed with ASD, awaiting to get him assessed for ADHD. After a year and a half waiting on the NHS list we decided to go private as he moves up to secondary school next year.
It has been a rollercoaster of emotions over the past years and his mental wellbeing and self esteem have been badly affected. He struggles to regulate his emotions, develop and keep friendships and has frequent meltdowns at bedtime where he becomes very distressed and self harms or hurts us. He hates his life during these outbursts and tells us he wants to die. I have tried to get him support, but while on the waiting list for assessment no one would offer help as potentially not just a mental health issue. Yet again I have come off a phone call today with another possible place of support, feeling so helpless and tearful. I am grateful that someone is listening to me and asking me questions, but answering them and talking about things that we deal with everyday that are so hard, is so emotional and draining, it takes it's toll! Today I felt a glimmer of hope that I was getting somewhere, that after explaining we felt he needed a professional outside of the home to support him as he doesn't respond to strategies given to us before that we have tried, she goes on to give me yet more strategies to try. Does anyone else feel like screaming when just provided with more things to try and more websites to trail through? I understand that we need to support him at home, but we don't have enough skills and expertise to deal with his issues and struggles to make a real difference. It makes me feel such a failure as I promise him I will get him help as he is so desperate to feel happy end enjoy his life. He is only 10, why should it be so hard to get him the help he needs!
Sorry for the long rant, does anyone get how it feels or should I just accept that we are his only point of help?

Hi

I just came on to say that I am sorry you are going through this! We have been through this (and to an extent - still are.)
DD (nearly 12) has ASD and severe anxiety, and for the past 5 years has been passed around from pillar to post (and back again,) where we have been given nothing but the lowest levels of common sense strategies ie sleep hygiene, 5 finger breathing etc.
In fact, when after 4 years of severe anxiety (and various pillars and posts) we were recommended to Early Help, I lost it and just broke down. Early... Early Help... are you having an laugh?!!!

Anyway, more helpful things now...
One thing that has helped my DD's night time anxiety is melatonin, prescribed by the paediatrician. Is DS under a paed?

And I'm firmer now, much firmer (but in a respectful way.) Ie DD saw CAMHS last week and they want to start a scheme of weekly work - but said weekly work sounded all to familiar. When the psychologist asked my thoughts, I didn't hesitate to say that I wasn't being rude, but it felt like de ja vu and as we had discussed anti anxiety meds nearly 2 years ago, I wasn't happy that we keep putting my DD through program after program of low level work. She assured me that meds aren't off the tabl and we can review every couple of weeks.

Long winded, but I hope the above shows that you just aren't alone in your frustrations.

Follow Missing the Mark on Facebook. It's helped me not feel alone in this.
@pandyandy1 we are in a spookily similar situation! Melatonin has recently had such a profound improved effect on my 12 Yr old. I first asked for it when she was 4!

Here is a Missing the Mark Post. The illustrations are spot on.

'You say these things but what do they actually mean?
When my child is at home and not sleeping and talking.

You can say all you like in the way of positives, but who is that helping?
Not my child who comes home and crashes and breaks.

I try to tell you over and over.
I share this stuff because you are the gatekeeper (or so I thought)

You do not hear what I am telling you.

You let me cry and share things that I don’t want to share.
And you fob me off.

You tell me I don’t need things I actually do.
You tell me I won’t get it anyway.

You are not listening.
Your words are empty.

What are you writing down?

What help is this for my child’s future?
None, but that’s not your problem.
So you pass the buck, the tissue and the head nods on to the next chump.

Anyway “they’ve had a lovely day.”

Crickey PutYourBackIntoIt! I have never come across Missing the Mark, but it is SPOT ON!!!

My favourite phrase is 'she's been fine.' I say thank you and smile, but my inner voice says 'you said that yesterday - but it didn't stop her begging not to come in today!!!'

Thank you for your replies. The Missing the Mark post really does describe it so well!
I think we will try the GP and see if we can try out Melatonin, are they usually happy to prescribe it?

Presuming you are UK based, the GP (unfortunately) cannot prescribe, but can refer to a community paediatrician, who can. The paed then authorises for the GP to put it on repeat and our paed just sees DD 6 monthly now (3 monthly at first.)

In my area, CAMHS can also prescribe (I believe.)

I know different areas have different channels, but out of curiosity, who did you come off the phone to today?

And don't you wish that different areas all had the same publicised pathways of mental health support? A simplistic and transparent pathway, so that parents/carers could tell what level of support their child was being offered, and realise and react when being side shuffled to a similar service, but with a different name?

The area we live in promotes Early Help, but promotes nothing beyond!
I would like to see colored flow diagrams in every school prospectus from LAs, naming the MH support services at each level.

And whilst on my soap box, I would like the same coloured flow diagrams in prospectuses, simplifying what parents should do/school will do, if they think a child has an SEN or D. Too many parents have no idea about the SEND register; SEND support; assess, plan, do and review; and how they can apply for an EHCP if there is little progress (even in SEMH!)

I will post a fuller response tomorrow but just to say I hope you've all had alright days. I'm so glad you both also found the Missing the Mark post powerful

Today's Missing the Mark meme. Spot on again (although my dd is no longer going to school but will hopefully start a provision next Monday)

Pandyandy1 I totally agree with you. So much time is wasted trying to figure out what step to take next to support your child. I had tried to ask support for DS's mental health from Point 1, after an awful experience with a Dr who grudgingly ageeed to refer him, to be just provided with some more strategies that are more responsive than preventative felt like a kick in the teeth!
That missing the mark meme is very much my life.

One thing I am going to personally take from Missing the Mark nutleywombat, is that whereas I have procrastinated and procrastinated over sending a detailed 'essay' of complaint to our LA (about my DD's EHCP process...) I think I shall now send them a 'visual'...
One of Missing the Marks wonderful demonstrative cartoon/diagrams!!! The thickness of the lines between 'mum' and 'SEN caseworker's voicemail' will be thick, indeed!!!

I personally want to do more and reading Missing the Mark makes me think I should've been doing more!

On a positive note (and I hope this is your case PutYourBackIntoit and nutleywombat,) as it is the holidays (with few demands,) my DD is pretty happy and pretty animated.
She had a dressing gown morning (which she loves) and baked this afternoon, which she loves more.

That is so great yo hear @pandyandy1
What did she bake??

I have found today a bit frustrating. I carefully chose an activity that I hoped my dd1 would come with us on (a milk shake vending machine at a local dairy farm - a car journey and no people involved!) and she didn't feel able to come. She may have come if I had waited longer but ds and dd2 had already been waiting for 3 hours.
It was really good but I just wished dd1 was there. She loves milkshakes. I brought her one back and she chose her favourite dinner (mussels and chips!) but she got really upset talking about the huge gap between what she wants to do for Halloween and what she feels able to do. So that was a long, teary conversation. Of course any suggestions were not well recieved.

I don't think I've said before but she hasn't been to school since March. She's meant to start at a new provision next Monday, but her school still haven't told us if they will fund it or not (they initially said they would but think they've got cold feet).

Wow your post really hit home for me. My DD has been struggling with mental health issues and is really suffering right now and I just had another call with the GP where they suggested a ‘self serve’ website where you can get info on… yes, strategies. They have done absolutely zero to help in practical terms, it’s incredibly frustrating.

Goodness PutYourBackIntoit, our girls do sound similar and I too have another daughter and son! (My son also has ASD, but is the polar opposite to my daughter. He is like titanium, pretty happy and confident, maybe because he lacks empathy and just focuses on himself.)
I often feel bad for my other children that our family outings are very limited, based on what DD can cope with, but on the whole, they are pretty understanding.

No school since March - it's tough isn't it. You want to do what is right for your DD, but constantly question if it is the right decision (and I know you shouldn't feel like this, children might be off school if they say, had broken a hip) but also worrying what others think, when your child 'looks fine.'

Please do keep us posted on what happens Monday. I'll be here, gorging all the baking this week (;

Snowsuit - back to the GP? Firmer with GP? Self referral to a different service? Will school refer to a different service? Private help? Experiment at home (ie reduce daily demands and seem if that has any positive impact?)

I know there is no direct resolution to your thread nutleywombat, but I hope it helps knowing you aren't alone.

Thank you for your replies, it does help to know I'm not the only one dealing with this. Sorry to hear you are in the same situation snow suit, it really is so frustrating.
School holidays can bit hit and miss, like you said pandyandy 1 there are less demands which generally helps my DS, but then he isn't always keen to go out. PutYourBackIntoit I'm sorry to hear your DD wasn't keen to come out with you, I also have a DD and she does miss out on doing things if my DS has a meltdown or refuses to go somewhere. Hopefully she is able to join in with something else this week with you. My DS tends to say he hates going somewhere, it's a nightmare getting him there, but once there he remembers that he does like it and we have a good time, although I feel exhausted and stressed from the first part!
Have spoken to Dr surgery today and got an appointment next wk to discuss referral for Melatonin, fingers crossed we get somewhere.

I've had such a frustrating evening. DS had a terrible meltdown for 2 hrs, started hitting himself, wanting to die, very distressed. Phoned First response crisis helpline as had been suggested by other agencies. I just feel fobbed off, suggested school counsellor or private play therapist as other agencies for adults or just mental health, and as he has Autism wouldn't offer help. When I politely said what other help is there she agreed to refer for assessment to see if mental health or him struggling with issues due to Autism. I feel like they offer smallest amount of help to see if you will take that, if you push a bit (whilst feeling bad and trying not to be rude or demanding) they then agree to more help. Why not offer this straight away! I know it's not the fault of the people on the phone, just a broken system, but I could just scream "Help my son!!!!!"

@nutleywombat, your post really resonated with me and I joined mums net just so I could respond back to you. Without going into too much detail about my journey, my DS was recently diagnosed ASD, I had to go the private route as I was not going to wait for over a year to get help via the NHS, especially as he is going to secondary school next year which I know will pose challenges. I just wanted to say to you, that you are not alone though it can often feel like that. For my DS, I got him a local counselor who he goes to outside of school to discuss his feelings, and to talk about any anxiety he maybe feeling which has really helped him. I see it as having someone else aside from me to share the load with and perhaps see things from a different angle. In areas where he struggles (Social Communication), I changed my attitude to playdates etc (didn't bother with them); I now make sure I organise things with children outside of school (especially during the holiday periods), to allow DS to maintain connections and not lose any of the social skills we having been working so hard on (nuances in communication, patience with others etc) this makes for a much happier young man! If I left it to DS he would not engage at all which then presents challenges upon return to school. It all feels endless but keep on!

Thank you for your reply JustTryingouthere. I think that a counsellor would be something that we might try as my DS hates talking to us about his feelings ect. but might be better with someone outside of the family. I also gave up on play dates as he had several disastrous ones which ended the friendships, he gets overwhelmed and then hyped up and then his behaviour deteriorates. I am looking into if there are any social skills group near us that he could join and also meet other autistic children too, so he can see that he isn't the only child like him and develop the skills he struggles with in hopefully a more understanding and forgiving environment.

@nutleywombat - yes the outside Counsellor really helps as its a safe space for children to offload without fear of judgement etc. Sometimes us parents may not always school are reaction/sometimes quick to jump in and offer an opinion (I know I am guilty of this). Re playdates, I only do groups of 1 - 3 children at best, and I manage the personalities, guiding my DS when choosing his friends. The aim is likeminded or similar interest not necessarily ND children. The aim is for them to feel like they are part of a group. Its not an easy one. I am really working on self-esteem which has taken a bashing over the years.