To have sent DS to grandparents tonight? I need help.

[Feellikeafailureatparenting]

I've changed my username for this, as it could be identifying, but I have been around for a long time and have posted about similar issues before.

This will be long, hopefully not too long, but please help.

I have a DS who is 9, 10 this year. He has had a mixed settled and unsettled start to life - a very constant settled experience with me, an unsettled one with his dad who wasn't around when he was younger but is more so now (has a very involved and devoted grandmother and DS stayed there to see 'dad' but dad fucked off and he spent his time with grandmother). He was the youngest child on both sides, and only grandchild, so became used to being number 1, so to speak. My parents helped (still help) a lot with DS (I was a young parent) and we stayed with them. This allowed me to study at university and work multiple jobs to provide for him.
Met now DH and we moved in together, with DS, and have gone on to marry and have a child who is now a toddler.

Since he was very young DS9 has always had 'issues', for lack of a better word. I'm exhausted at this point.

• Severe temper tantrums to the point that he was sick and carried on.
• sensory food issues.
• sensory clothing/footwear issues
• personal boundary issues
• very blunt and black and white
• horrific sleeping pattern/getting to sleep is a nightmare.
• fabrications constantly.
• fixates on bizzare subjects (rollercoasters was one thing, currencies another)

I know this all rings bells for certain disorders and I approached the GP. They told me that there was nothing to investigate due to him coping in school. He likes(ed) school, is performing well.

As he has grown is has become worse. The tempers are worse. The clothing issues are worse. The sleeping issues and fabrications. All have become almost unbearable.
He has school refused a few times now and, with my support, attends a nurture class as he is now struggling socially. He has hurt another child in temper. During one episode of school refusal he threatened to hurt himself, to push adults down the stairs, made himself sick and much more.
Again we went to the GP and they wrote to camhs and they replied saying his behaviour was "within the realms of normal". It isn't. It really isn't.

Sleep is one area where we have big issues. We attended a sleep clinic and they diagnosed it as control issues as it only happens with me. No one else took it seriously.
For years DS would only sleep if you sat beside the bed until he slept and every time he woke I had to return to that spot. Then it progressed to sitting in the hall. Then to sitting in our bedroom (which is where we are at now).
If he doesn't get his own way he ends up in an uncontrollable rage. Throwing things across the room, violently panting and breathing, screaming at the top of his lungs, lashing out, saying hurtful things, making threats to hurt himself and others, crying hysterically, being sick. He cannot calm down, every time he does it kicks off again.
Although he is only 9 DS is over 4ft8 and built like a rugby player. You cannot lift him and put him in his room.

Last night was one of those nights. It went on for almost 4 hours. 4 hours of relentless screaming, crying, threats. 4 hours of being told he hated us and wished we were dead. He woke up and terrified his brother.
We also live in a semi. He woke the neighbours and their toddler. I spoke to them today and apologised profusely. They've heard him before and, like the saints they are, haven't said a negative word but have been really understanding. Last night he also started to square up to DH and actually tried to punch him twice.

We are all mentally and physically exhausted today.
Tonight he started again. I can't take anymore. DH can't take anymore. It isn't fair on toddler DS to be terrified again. It isn't fair on my neighbours.
I asked my dad to come and take him to sleep at theirs. DS went quietly but didn't speak to me on the way out. He didn't think I would do it and it seemed to shock him in to regulating his emotions.

I now feel awful. He is safe. He is with people he loves and who love him. I think I did the best for everyone else but have I let him down?
Wibu for asking for this respite for him and for us? Should I have stuck it out?

Also where else do I go from here? His behaviour isn't "within the realms of normal" but no one will listen.

Find a local autism support group
Look for your nearest one on Facebook
Go back to your gp and senco at school ,insist on being referred back to camhs for an autism diagnosis,keep going back to your gp untill he helps you .

I agree with @soontobe60 and @plainjane28. As a professional who works in this field based on what you have written I would first be exploring the environmental factors before looking at any 'within child' difficulties like ASC. Even if he does have ASC there's still things here that are not necessarily related to that diagnosis that can be viewed within a attachment/ trauma/ relational lens. It's important to get the right diagnosis as the strategies to support both in home and school can be very different.

From a child's perspective there appears to be lots to unpick. Things that as adults we think wouldn't have a major impact, but every child is different and often things can have traumatic and/ or long lasting effects. He sounds like he's very unhappy. Some things that jumped out, and there is no judgement here, just thoughts based on what you've said:

• a child living with mum and grandparents. Probably the centre of attention. Getting all the undivided love, care and affection. Then they move out. This can be experienced as a major loss of carers for a child and can change how they view and experience the world.
• were you given the chance to be a mum and do all the care and build those bonds? You have worked very hard to study and should be congratulated. Just wondering what the pay off was as this must've been difficult as a single parent?
• mum and dad not together and dad not that bothered for a while. How is that relationship? Does he crave dads love, attention and acceptance?
• mum gets together with another man. This bursts his bubble of being him and mum. For quite a while he's an only child then he has a sibling who takes mums time and step dad dotes on new child.
• child sees that everything they once knew has changed. He's not the 'golden child' anymore even though everyone tries to make it so that nothing has changed.
• he tries everything to get attention, including confabulation and this results in the behaviours you are seeing. The fact that he's very different with you is a symptom that he is seeking something from you that is different compared to the other adults in his life and school. You probably are his safe place so he does feel more at ease at release his emotions, but perhaps they're also directed at you because he blames you in some way for something??
• he tries so hard to make his dad and paternal grandparents accept and love him but it's getting too hard to manage now and they're starting to see how unregulated he can become.
• he probably now sees himself as a 'naughty boy' which can become a vicious circle and a self fulfilling prophecy
• he's using controlling behaviour to control his environment as he feels uncontrollable and uncontained by the adults (e.g sending him to stay with grandparents as parents can't manage the behaviours)
• has anyone asked him how he's feeling?

Whilst I understand why you asked your parents to have him and I might have done the same in your situation, in hindsight I would've sent the toddler child instead if possible and kept ds at home to ensure he doesn't feel rejected and to try and explore what's going on once calm. He might perceive that sending him away for the night affirms that he cannot be controlled and this can be very frightening. Staying with grandparents shouldn't be perceived as a 'punishment' at the time which is then highly rewarded by grandparents over compensating and doing nice things with him.

I understand your frustration at not having access to services as it's shocking and I work in this area, but I would see if you can access counselling for your son (through school, GP or there may be local charities that take direct referrals) or family support, like a family support worker who can help you to develop positive behavioural strategies to manage his behaviours at home. In my experience, paediatrician, Camhs will want to see how you have implemented strategies at home and whether they've been successful before taking on referrals. The threshold is certainly very high where I am in England.

Good luck

Thank you mummyshark that was very insightful.

He wasn't made centre of attention or put on a pedestal when we lived with my parents but the very nature of our living situation meant there was always someone there. He never had to entertain himself by himself.

I have up sleep and a social life to raise him. I did night feeds, day feeds, drop offs and pick ups. He came to university with me and my grandparents watched him for an hour or two. I then worked nights so I had most of the day with him, working additional weekend hours when he was at his dad's.

He is asked every day about his feelings, encouraged to share but is always "fine" or there is "nothing wrong".
We don't use the "being naughty" either. I've always said that at that moment he might not be behaving well but that does not mean he is a badly behaved child. I always tell him that I know how well behaved he is. I try not to enter in to the self fulfilling prophecy of the 'bad boy'.

Grandparents always tell him how well he is doing, how much they love him and how he is always welcome. He likes his dad, loves him, but he absolutely adores his uncle and gran on that side.

I appreciate he does have issues that we cannot get to the bottom of. He will not discuss them with us. He has been through a lot and for a child who already had difficulty regulating their emotions and dealing with sensory overloads this makes things much worse. Again, GP didn't refer us on to anyone.

It's a horribly vicious cycle.

Hi op,
It sounds like you're all doing your very best and providing lots of love. Given what you've said about him not being able to communicate his feelings or recognise his emotions, despite having the opportunity to do this within a loving and safe environment then I do think that some form of therapy/ counselling might be helpful to increase his emotional literacy. If he doesn't have the recognition and words to explain how he is feeling then it's not surprising that he shows how he is feeling in maladaptive ways (by being aggressive etc). It might take some research but hopefully there are local services who could provide this.

Would bibic be able to offer you any advice here? I’m just trying to remember back to when my son was assessed and diagnosed.

Also, I have another son who presents similar to yours, who has an asd diagnosis but we have been told numerous times that he won’t get an EHCP as the school do not see the episodes as much as we do.

You have done the kindest thing for both of you in that moment.
You didn't ship him off because you didn't care, you put him in safe caring hands because you do care and sometimes we need space to settle and regroup.

He definately needs assessment for ASD, if school won't help can you self refer? Probably expensive but long term it would be worth it.

Gentle hugs

Also, I have another son who presents similar to yours, who has an asd diagnosis but we have been told numerous times that he won’t get an EHCP as the school do not see the episodes as much as we do

Many parents get told this, its not true. It may take a tribunal appeal but kids who mask and/or have high attainment levels (another reason many parents are told their child won't get an ehcp) absolutely can and do get ehcps. Tribunals are far less dismissive about masking, school refusal, behaviours at home being reflective of school difficulties and the coke bottle effect etc.

They're also not interested in the blame game

@SweetpeaMidnight

That’s really interesting to know, thank you!

I did an FOI on our local authority @28IckyIsAFuckingStupidWord, 406 families were refused an ehcp assessment. Only 9 appealed to the Tribunal but 8 of those 9 won. The win rates for parents over refusal to assess are near 90% across England.

Take videos of his tantrums and all the times he is difficult and then take it to your gp and insist he gets the right treatment . No one believed my friend as her son was awful to her, she secretly set video cameras around the house in problem areas and then recorded them. He was then sent to a psychologist and given the correct medication and is now a lovely boy at uni .

If he is now starting to school refuse, I'd go back to the SENco and ask them to refer. You could try a Speech and Language Therapy referal if there are concerns around his social commutation skills and this could get him onto the pathway to an ADOS assessment for ASD. Sadly OP, you need to make a fuss to get what you need. It's not right, it's not fair but it is true.

Have a look at the therapeutic parenting page on Facebook. There are lots of parents dealing with this type of thing on there!

Hi, you sound like such a loving mother.
. I don’t know whether your boy has ASD, as I understand, diagnosis is a careful, comprehensive process. I would pursue an assessment, privately if necessary.
There are some wonderful suggestions for helping him feel safe with weighted blankets, etc.
Meanwhile it seems to me that he has almost total control over you and his environment at home, and that this is not helping him. He’s probably scaring himself. It may be that he is relieved to be in school or with his grandparents, where the boundaries are held. Nonetheless, he will punish you when he comes home.
I bet you are a fantastic teacher, a good student, loving mother, but somehow in your relationship with this boy, you are still the frightened young woman, anxious to get it right. In the kindest way, I think you need to establish some boundaries here. My guess is that your parents, your husband and your GP have been trying to tell you this too.
Stay calm, stay loving, but say no, and mean it.

Others have given lots of great advice. I would video his behaviour (even if you only capture audio) if possible and seek a second opinion from another GP and support from school again (I know it is frustrating and feels like hitting your head against a brick wall).

I have a 6 year old with ASD and my 10 year old is awaiting diagnosis. She is very anxious and we have had problems with anxiety and sleep that led to daytime hallucinations (daydreaming) in school. Her behaviour deteriorated at home due to her being sleep deprived. We have used valerian tea successfully with her to help calm her before bed given half an hour before she goes up. You can also buy drops such as these.

DH also has ASD and suffers with insomnia and anxiety. He uses the tea but also indica based CBD oil with less than 0.2% THC in it, like this one. He finds it really helps him. Here is what GOSH say about CBD and children www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/cannabinoid-cannabis-oil-information-families, just so you are aware of potential issues with use in kids.