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.

He sounds like exactly like my son, who
Was diagnosed at 4 with autism. For us the quicker the diagnosis the better prepared you can be to help your son x he is 12 now & puberty is a nightmare but we are getting through it.

Thanks everyone.

Where would I look for a private assessment? What type of doctors/therapists?

Mammajay he has started to deteriorate at his grandparents. Some of the behaviours are appearing, some have always been there (sensory issues to food/clothing/noise, personal boundaries etc) but always worse with me. He wasn't too bad when we lived there, but that was how I'd describe him in general. As he has aged it has all started to unravel.
At his dad's or when he overnights with DHs parents he is okay but the minute he is home it's awful.

Sounds like a tough situation - and as you say, rings various bells for me in terms of potential diagnoses (ds is on autistic spectrum). I think taking an evening off sounds like it was a really sensible and caring approach, for both of you.

You say he was coping at school and the GP wouldn't refer for that reason - but from what you've said here, it sounds like they do recognise issues at school too now. I'd have a chat to someone at school about your concerns (SENCO if poss) and get them 'on side' - be honest about your issues at home and see if they'll support your application to CAHMS. It took us years to get a dx for our son - who masked reasonably successfully at school - took three or four different 'tries' before we got through to being assessed. Once we talked to experts at CAHMs the assessment was fast and efficient, and a huge relief for both of us (we didn't manage a diagnosis until 13, although we used management techniques from probably about 7-8years, as I knew something was going on!)

Have a look at the Lorna wing centres via the national autistic society .......they can assess, advise and diagnose.

You won't get anywhere via the NHS or school until you make it very clear you're at crisis point.

Also have a big hug from me. We went through exactly the same with our DD. The only advice I can offer is to look for the triggers, these big meltdowns are often a way of processing either something that's happened or an upcoming event.

I think you need a paediatrician. He can (mostly) hold himself together at school but releases in his safe space with his safe people. Plus there is obviously a little power-play too. But he needs a diagnosis. Insist, insist and insist some more. It's hideous that you have to fight so hard.

But you also need to look after yourself and every parent needs a break to regroup and gather strength so you did the right thing tonight.

I'm sorry to say that if the problem is mostly at home then diagnosis or not, there's little help available. It might open up access to a disability social worker depending on your area.

Don't compare your work children to your relationship with your own child. Parent/child relationships are far more complex than any other so one has no bearing on the other.

I do think you have done the right thing, your DS also needs a a reset break. Unfortunately there comes a point that you have to not accept no as an answer. Even if a diagnosis is given it just starts a new fight in getting help. You sound amazing in your patience, I am 14 years down the line of disturbed sleep as DS2 doesn’t respond to melatonin, the effort it takes to remain calm is exhausting on an already exhausted person. Try to sleep and be refreshed for tomorrow.

I've been there OP and no-one will help unless you force them to. I have been the parent who knew everyone was muttering about and pointing out their child because of his bad behaviours. You are entitled to help and you need to insist you get it.

If you have a useful GP then breaking down there and insisting on a referral may be the best route. I had to go the private Ed Pych route then force the diagnosis on the LA. TBH all the interventions were pretty useless but it did get him more tolerance and concessions at school and he had support from a TA

There are some things which help, melatonin for sleep for example, but IME 99% of it is a combination of maturity and behavioural training. My DS with ASD at 21 is unrecognisable from when he was your DS age and is a really lovely easy to live with person. However, I really do recognise that everyone is different.

Do whatever you need to do to get by. If shipping him off to his grandparents works for you both then do it.

The thing which stands out for me is the sleep routine. That is impossible for you to sustain. Explain to your DS that you simply cannot carry on doing this as you need more sleep than he does - he will not think of this on his own. I always had a rule that my DS did not need to go to sleep but once good night had been said, he could not leave his room except briefly to go to the loo and stuck to this as one of my very few lines in the sand. He is still a terrible sleeper and is up most of the night, but he stays in his room and draws or goes on his computer. He has a part time job now which is evenings so that suits him well.

He's too old to be seen by a paediatrician now, in my LA the referral would be to Healthy Young Minds. From the potted history you have given us, it sounds much more like attachment disorder than ASD.
He has had a lot of disruption, lots of different adults parenting him probably using lots of different parenting styles. Grandparents tend to overcompensate or spoil grandchildren, I know I have to stop myself with my grandson. He's absolutely pushing the boundaries with you by displaying the tantrums you have described, and you're naturally so worried about him. I've seen the exact same behaviours with many young boys who have a fractured relationship with their father, mums try their best but find it increasingly difficult to keep control. I totally understand why he's been sent to his grandparents, but that will actually do two things. First, they may 'spoil' him which will subconsciously encourage him to behave that way again to get his own way, and secondly, confirm any rejection he may already feel.
I'm afraid I don't have the answers, apart from have clear expectations regarding his behaviours at bed times, don't be drawn into arguments ( either you or DH), try to keep calm at all times in front of him.

Definitely sounds like hes ASD with maybe PDA. Could you try asking dr to refer to paeds. That's what I did. You did the right thing absolutely. He had a huge meltdown and you removed him from the toxic situation to a more calm environment. Hugs sweetheart

Again, thank you everyone. Your kind words and advice have helped more than you know.

His school have been great. They are fully supportive and the nurture teacher/pastoral lead has always been on the ball.

We have tried to identify triggers and aim to keep as close to a routine as we can, especially around bed time. However there are times when it slips and this is the outcome.

A night away with a hot stone massage wouldn't go amiss right now. I'd just sit in the room afterwards in silence.

Sorry you are going through this OP. I've not got much experience, other than I also have lots of traits and no diagnosis.

I'd start by contacting one of the charities. Ask for help, he doesn't need a diagnosis to be given coping mechanisms and other help.

He's awful at home, not because you are doing anything wrong, but because he can finally let go from holding /trying to hold it all in from everyone else. You need to make yourself a pain. Start demanding more. Thats what I did after being pushed over.

I would also consider recording his tantrums and extreme behaviours to show professionals. It is often much more clear to them when it is seen and heard.

Oh my goodness. No of course you haven't let him down and as it actually calmed him down you did the best thing for everyone. Your son sounds like my daughter who is better than she was but still has meltdowns and a lot of emotional problems. She has been diagnosed with ASD but we had to fight for 12 months to get a referral, mainly got it due to seeing another doctor.
This may be of no interest to you or your son but something that has helped (but not totally stopped) my daughters meltdowns is kickboxing (but any martial arts is good). I was worried it would make her more aggressive but it doesn't because she puts her anger in to kickboxing. There is a,lot of emphasis on breathing and control which has really helped. Anyway might be something to consider.
But asking for support is a sign that you are a very good parent and having a break will do you a lot of good.

Okay. My DS was like this. Like you, I had him young (very young, in my case) and then later met someone and had more children. DS is very high-functioning (in fact he is currently studying for an MA) but I put up with years of violence, aggression, damage to my home and possessions and serious assaults (on me, it was only ever on me). He ended up with a dual diagnosis of ASD/ADHD and things started to get better almost immediately. Here's what we did:

1. You have to get really bullish with people. Our GP was dismissive until I marched in, showed him my bruises, said that DS was a danger to himself and others, and if he did not wish to refer him I would like a second opinion. The first referral (to child psychology) was rejected, but we did get fast tracked to CAMHS.

1. Go back to the school, ask for a meeting and request TAC (Team Around the Child) set up. You need a clear explanation, in writing, of any refusal to refer to Ed Psych. You also need him on report at school, so that you can spot patterns of behaviour. Set up a home-school communication route (we used an exercise book). Ask them to give him visual aids (timetable etc).

1. Just because he isn't diagnosed, doesn't mean his needs can't be met. Think about his trigger points. When do they occur? Is he resistant to change? Could you give him a pictorial timetable setting out his day? Kids with ASD don't like surprises.

1. The clothing issue can be alleviated by switching to natural fabrics, using hypoallergenic laundry liquid. It won't get rid of it, but it will ease things.

1. Sleep issues are a nightmare, and here, the GP really can help. Remove all electronic gadgets from his bedroom - computer, tablet, games console. Put them all downstairs and limit his use. Keep a dim light in the room - we used plug-in nitelights - and keep it cool. If white noise helps, get a small fan.

1. Let him choose his food - by which I mean, don't give him a free hand, but at breakfast say "Would you like x or y for dinner?" My DS was massively calmed by helping me plan the week's shopping - what meals to plan, what to buy, discussions around nutrition etc.

There is support out there, but you have to push. Sending you a hug. DM me, if you like.

It does sound like he's on the spectrum with all those listed "symptoms" - I can't understand why the GP has fobbed you off, in all honesty.

I second recording him at home - some kids are so good at masking at school, and other places where they feel less "safe", so those people don't realise.

I have a friend whose DC2 almost certainly has PDA - but she can't get a diagnosis in Australia because of the fecking DSM 5 except as a possibly subtype of ASD, and the child doesn't fit the criteria for ASD, so no diagnosis - but some of the behaviours you describe are similar. Child of my friend almost never displays those behaviours at school - saves it all for Mum. www.pdasociety.org.uk/ for more info.

But the "school angels, home devils" are the hardest to get diagnoses for, whatever the diagnosis is, because without external validation parents do tend to get brushed off, sadly. So record his behaviour, his tantrums, etc. so you have some back up.

And yes, you might have to go privately for an initial assessment - but you WILL have to drive this yourself, and drive it hard because otherwise you won't get far - the squeaky wheel technique is the best one!

Hi so:

School cannot refuse to refer you to the Community pediatrician based JUST on what is happening at school it’s not a case of out of sight not our problem. They will have some idea especially now he is in nurture provision.

You should FIGHT and I mean complain to governors etc for an EP report

Record him to show Comm Paeds

Do a Strengths and Difficulties questionnaire (SDQ) - you can find this easily online for free if not request from your school

Ask school to complete a Boxall Profile and ask to complete one also yourself.

Go to teachers not robots - do an asd checklist

TAKE ALL OF THAT to your GP and demand a ref to com paeds and give it all to school Senco

Ask Senco to go with you to com paeds meeting if poss so they take you seriously

In the meantime. He needs a tight schedule each evening if he doesn’t already have one (sounds like you know what you’re doing) one with a choice board and a now/next. He needs a visual for anything changing. He needs no talk and lots of visuals when he is in meltdown.

TRY ( I know it’s so hard) to log when/where/what when he melts down or tantrums. And keep that log to take with you - try to identify the triggers.

Also call SENDIAS and get them to advocate for you if you are feeling it’s all a bit much right now

Good luck my lovely and I’m so so sorry you’re having a tough time x

Look up the diagnostic criteria in the DSM V. It's quite clear. If you believe he's autistic, book in for a private diagnosis and join 'Ask an Autistic' on fb for advice about how best to support him.

alunwynsknee as shitty as that sounds I'm glad it's mostly at home. Hopefully school is still a place he wants to go to. He has high hopes for the future.

Kellyhall I know and I've said those words, or words similar, to many parents. It's difficult when it's your own.

Thank you boulshired. We're 9 years of crap sleep but I do get 4 nights a month to recharge. Thankfully.

Jones we've explained the sleep. We've tried to explain it's not fair on even his toddler brother. It's unfair on the people next door when he kicks off. He doesn't seem to care at those points. When I've asked him to go back and read/lie there/watch TV etc it's met with either screaming at me or complete silence and refusal to move, which then extends to screaming if ignored. It's completely unsustainable. At one point I was drinking 10+ coffees a day to keep going. I can now neck strong coffees and energy juice and either fall asleep seconds afterwards or during the drinking as it has no impact on me. The sleep issue is also hurting mine and DHs relationship as DH finds it very difficult, understandably.

Soontobe thank you for the differing views. My parents always respected me as the parent, thankfully and have always stuck to the same boundaries and rules I have (maybe not when it comes to an extra sweet). He knows he gains nothing from going there tonight as the same rules apply with adults not sitting on the floor, him not staying up etc. My poor dad is victim to much of his aggression but has offered to help.

Firstly write down all his difficulties...
Sensory clothes food sounds lights touch, light touch

Rigidity: routine, Eg: more difficulties after visiting dad. Won't eat certain foods

Social and communication

Emotional behavioural

Poor organisation

Any history, eg waving/ pointing when small or not.

Does he do eye contact?

Any quirkiness

Everything. Ask for a referral to a developmental paediatrician from the GP. Check the Nice guidelines to know your right to referral.

Mention he does this in two settings, not that it should be necessary as anyone who knows anything about autism will know about masking.

Go on a parenting course so you can say you are using the strategies but they don't work. They do like to blame the parent first. You have to counter that.

If all that fails go for private diagnosis.

Good luck.

As a troubled child/teenager myself. Now 30, I have been diagnosed with early mental health problems again presenting symptoms around the age as young as 8. I had a very similar upbringing to what you say your son has now (and certainly no abuse, happy enough childhood etc).

I’m not saying he does have what I have, however it’s a possibility. I didn’t actually get a diagnosis until I was 23 (after 8 years in the system) and trust me when I say even if you did get “help” from CAHMS or even the adult mental health services that there is still a possibility they wouldn’t actually help the situation. I have gotten to where I am right now with an extremely exhausted yet supportive mum and family.

From your current situation, I would say he is definitely trying to get your attention. You after all, are his mum. He loves you unconditionally and knows however much he acts out you will always love him and be there for him.

My mum met my now step dad when I was 14, and I acted atrociously. I like your son performed well at school and in front of others but at home I was like the exorcist. All I wanted was a reaction from her though.

I can see you also have a toddler too. There must be some jealously here that is brewing, alongside with you having a new partner too. Of course this isn’t your fault but as a 9 year old child he could have so many mixed feelings about his home life and what is going on.

Have you looked into any counselling for him, it may help being able to talk about things rather than act out. You may have to pay but it could be worth a try? Or perhaps counselling for you all as a family? So you can spend time either mum and son or mum, parter and son and just air some things in a controlled environment.

Do you guys have fun together? Obviously it may be hard especially with how you are feeling but do you get a chance to just do things you and him without your toddler or partner? Or does your partner put enough effort into building a healthy relationship with him.

It must be scary his mum having a new man (I’m not saying you can’t or shouldn’t move on) but also having a new sibling, remember he is still ONLY 9.

Again you must be drained and my heart goes out to you. But I would definitely see if you can try and focus on his emotional needs and see if you notice a change. Maybe if your husband doesn’t mind having your toddler at the weekend for a day, just you and him go to the cinema and grab a pizza. Talk to him over lunch/dinner, see if he expresses anything in a more relaxed atmosphere. He may let on to more than you know. Just keep it causal like “(insert name) so, how are you feeling at home at the moment?”. Sneak questions in about what’s been going ok in between questions about the film you’ve just seen or his friends or school etc.

However if this doesn’t work then of course seek more medical advice. It’s not going to be easy, but we expect so much from our children to be happy and not notice what is going on around them but they are much cleverer than they let on and are like peaches, bruise easier than we would like especially emotionally.

Again just to throw it in there but does he have a lot of screen time? Does he get to unwind. Children can easily get stressed without knowing why, and the frustration can sit there for days, weeks or months. We live in a society where we spend so much time on our phones or games consoles sometimes this does have a negative impact on those who are struggling mentally already. There is no time to relax or unwind.

Again I’m not saying don’t tell him off ever again in the fear you’ll upset him. You don’t want to be walking on egg shells. It’s finding a happy medium of saying what you are doing isn’t right, however I love you and I am here for you.

Good luck OP

Have you looked into possible trauma issues as well? Trauma can mirror autism, he could possibly have both. It sounds like he's had a rough time with his dad. You have done really great. Do not feel guilty at all.