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.

Hi OP

This www.goodschoolsguide.co.uk/special-educational-needs/help/educational-psychologist-assessment might help.

You need to find a local Ed Psych although Integrated Services work nationally (and used to guarantee an appointment within a week).

It costs around £500 - £800. Discuss with the school in advance. If they say they won't accept a private report, just say "that's fine, because the First Tier Tribunal will".

Good luck.

(I'm sorry if this has been suggested but it's gotten late and my eyes are squiffy but I don't want to not reply)

Have you considered private assessment - unfortunately given the ghastly times NHS trusts and LA's are having money wise, unless a child is causing major issues at school, there are as you say, hundreds of kids before them.

We used private assessment for our sons ADHD and ASD assessments

A family psychologist is the name of the company we used for autism assessment based in Kidderminster: very thorough and detailed reports - the first appointment costs £130 and is about a 3 hr long assessment as to whether a need for further assessment is present. If you go ahead it's another £2370 making it £2500 in total. With that comes a cognitive assessment (ED Psych) and a very detailed separate report regarding cognitive impact of the sensory and or ASD traits using the same process as LA ED psyche but to a higher level.

The ADHD centre based in London with an office in Manchester is who we used for the ADHD assessment; this cost £850 and again operating to the NICE guidelines to a higher standard than the NHS

We feel it was worth every penny and the diagnoses has opened access to many services that have made a huge difference to our lives

Hope this helps

Alicia x

Here's Integrated Services website: integratedtreatmentservices.co.uk/therapy-services/educational-psychology/

Don't be so hard on yourself. Everyone needs a little break from time to time, including you & DH & DSs. It isn't something you've done on a whim or as a dramatic reaction to a single event. You have assessed the situation in relation to what is in the interests of the whole family and, whilst he may have seemed shocked when he left, it will give you all a bit of breathing space.

Perhaps going forward DS could have 1 night a week with your DPs. If he is on the spectrum it may be better that he knows in advance when he will be going so it isn't associated with being the result of an argument/tantrum. Having a regular break to focus on might help you to recharge your batteries too, and might give you something to hold on to during the rougher times (Thinking "2 more days before I get a break" is a lot more manageable than "18 years!")

Could it be emotional and bevaioural due to the changes. Moves, adults in and out of his life. Sleeping different places. ect. And if he does have ASd or ADHD linked conditions hese changes may make things worse? Keep knocking on thoase doors to get help/advice/support. Have your contacted the Special educational needs informatin and adice service/. (Sendias.)

Is private an option?

Thank you everyone. Private is something DH and I will look at in the morning.

PlainJane thank you for your post. This is something I have considered. DS and I had an even today just us two, followed by a family event this evening.
Every evening he gets one on one time with myself or DH (say 70/30) me when DH does bedtime for DS2. We chat, draw, play games and watch TV. We cuddle on weekend mornings in bed. We chat and dance about when he's in the mood.
DS also gets one on one time with DHs parents, my siblings, grandparents etc. We get around an hour every Friday night just us and then maybe once a month an event plus other pockets of time (a coffee and cake at the weekend).

We tried very hard to make him feel as included as he could be in everything. From helping with house choices, to naming pets, to being a part of the wedding etc.

I don't dismiss his feelings in relation to what you say and do acknowledge it is difficult but we are all trying.

I work with a slightly older boy who demonstrates similar behaviour and he has ASD and ADHD. I would go back to your GP and request a referral to a paediatrician for further assessment and also self refer to your local behavioural and emotional health team for children.

If you feel like you need more support and would want someone to help coordinate all of this, you could refer to children's social care and request a children's assessment

Am so sorry to read your post .. he needs a proper assessment and diagnosis.💐

So shitty that most people write you off as it's 'normal' it isn't normal and they bloody well know it.
It's okay you needed a break, remember that.
He is in a safe place and a calm place where he can de stress and be in a calm environment. Not saying yours isn't calm but it's a new place for him tonight to be able to start fresh tomorrow. It's what you both need. Don't feel bad about it

Pixie this is what infuriates me the most. I have worked with children for almost as many years as I have parented. I have been a child. I have been around other children in a non-professional role.
His behaviour is not normal.
It is not normal to temper until you are physically sick and continue.
It is not normal to pee yourself to 'make a point'.
It is not normal to threaten to self harm at 9.
It is not normal for a 9 year old to try to go toe to toe with an adult and actually attempt to hurt them.
It is not normal for 9 year old to punch another child in the face because they were annoyed.
It is not normal to get so hung up on the textures and fit of clothes.
It is not normal to lie constantly about quite insignificant things.

I feel like I'm losing it when people tell me that is normal. It isn't.

Have a look at Beacon House online - I'm currently doing research into the area of early adverse experiences and wonder if the insight from those far more knowledgeable than me would help.

There are sections for all sorts of resources; maybe have a look at the trauma/ACEs stuff and "bottom up" approach (Google brings it straight up)

Last night he also started to square up to DH and actually tried to punch him twice.

^^

What did your DH do when DS did this?

Lewis ACES is something I'm well versed in but have never heard of that website/resource. I have no doubt that ACEs are something that play a vital part of my child's being but I also believe there are other factors at play. Thank you.

This sound awful. Very hard for all of you.

Can I check "- fabrications constantly" does that mean making things up?

"I now feel awful." please do not feel awful. You did the best thing for safety and sanity.

"He is safe. He is with people he loves and who love him. I think I did the best for everyone else..." You did.

IMHO you need to record him on your phone and get as much evidence of aggression, violence etc, threats, threats to hurt himself etc.

You can self refer to CAMHS. If they say they already told you that this was normal, say it has got worse and evidence how it has got worse. School and doctor can also refer.

You said before that he was not displaying this behaviour at school but now he is school refusing, has hurt someone (at school?), said he will push a teacher down stairs, etc.

"It just feels like I've shipped him off because he's too 'difficult' and he is difficult but I love him and shouldn't do that." You took action to protect him, yourself, your dh and your other child.

DD is on the spectrum and by the time we got to CAMHS she was self harming and had tried taking pills. I am NOT trying to alarm you, I am saying you need to tell CAMHS everything relevant and hopefully you will get seen.

managedmis he stood and calmly asked him to go in to his bedroom.

DH was actually the one who managed to calm DS enough for him to get back in to bed. He then sat until DS had fallen asleep and waited another hour and a half before leaving

Italian thank you.

Yea making things up. It seemed nicer than lying.
From small things like "I did x with y" through to telling people I'm pregnant but he sticks to his version no matter what. People have believed him before. He went as far as threatening to tell the police that DH hits him when in the middle of it last night.

He has started to become unkind to others, struggling socially and hit another child in the face.

Be threatened to push me down the stairs when I asked him to go to school. I was on the top step and he said as above me, poised as if to do so, on the landing.

Did CAMHS do a screening tool with you. If they think your DC has autistic traits but no MH comorbidity they can refer him to the paediatrician.

I think you are doing your best in a very difficult situation. I hope you get the help you need.

underthecedartree camhs never saw us in person. The GP made 'notes' and then used this to form a letter which was sent to camhs. Camhs said, on the basis of the letter that I never saw, his behaviour was within the realms of 'normal'.

im so sorry.you called on your 'team' the people in that team love and care for both of you.you didnt call jo blog off the street to take him.you called others who could eqaully enclose him in the suppot andlove he needs right now.
i undderstand how he felt but eqaully you.and he is old enough to hear you tell him that also.
i know you need better help.your not alone in that.please no they are regenting you or your son.there is NOT ENOUGH help for these things.there isnt enough help for the most vulnerble people in society and it fucking sucks.and disgusting really.
going forward.could it acutally be something that could work?could the grandparent having him every so often to sleep help some?
is he like it at theirs?is he like it if they come to stay?
is he able to talk to you about why he feels ad acts as he does?
sorry your going though this.your being bloody amazing from what i can see.

That's awful. I think definitely back to GP and push for a referal to the paediatrician. Ask the SENCO for support too. Good luck

OP - I would strong second what @ahenderson270 recommended if you have the available funds. The NHS is an utter lottery when it comes to children with additional needs. Even IF you get a referral, there's a long wait and the experience/knowledge of the professional you'll see varies significantly. Some have very little knowledge of autism/ADHD/spectrum conditions unless there's a very classical presentation.

I'm a school governor and I have a 10yr old son who's autistic and also has dyspraxia, diagnosed at age 4. He's outside mainstream. His twin sister has always been different but not as obviously challenged as her brother. It's now becoming very apparent that she is also autistic - but we face hurdles in getting her difficulties officially recognised because she masks so well at school. Luckily we have an incredible SENCO and Ed Psych who are able to spot the tell-tale signs - but I know many families in our community at different schools who have had dreadful experiences. I'm very nervous about what paediatrician we get to see - the wonderful one at our local hospital has moved and the one that's replaced her seems to need the child to walk in wearing a label saying "autistic" before she diagnoses anyone. Her knowledge is very poor.

Anyway. If you can afford private, I'd urge you to do so. Not only will you speed up the process but the quality of the reports you'll get will be much, much better than NHS. Bearing in mind the difficulties you're having, in-depth reports will really help you.

If you don't want to dive in for a full assessment right away with a paediatrician, you could get a private Ed Psych report. That will only cost a couple/few hundred roughly (depending where you are) and will be a great indicator of what's going on.

Also, you need to gather evidence. It's an utter ball ache and I HATE doing this but keep a daily diary. DAILY. Keep a note of everything that he says and does, including triggers (when you can identify them). Seeing it written down can be far more compelling to present to a professional - you'll be surprised at how much there is when it's compiled. If at all possible - and this is a tricky one - get video/audio evidence. Professionals need to see you're not provoking him. I know this is absolute shit, but as parents of autistic kids, it's the first thing that's suspected. I don't know anyone who hasn't gone on the parenting courses and jumped through the hoops first to prove that we're not crap parents.

Finally, and please don't take this the wrong way - how are you responding to him? Is your frustration showing? Are you just focused on him being a nuisance/embarrassment? Have you talking to him calmly and privately about how hard he seems to be finding things? What you're describing sounds like a child in real distress who's trying to communicate and cope in the only way he's able to. Are you pushing him to cope with situations which are just too difficult right now? Can you do anything to lower his stress levels? Is he getting enough breaks? Enough quiet space? Is there too much communication for him to process? If you work with autistic kids, then just think about the things they'd have on an EHCP - does he have those types of support around him in the home? The fact he's acting out at home is because he feels safe there, it's a pressure valve where he's releasing the tension that he's held in all day at school.

I know it's hard, and him going to his grandparents tonight won't do any harm. Gentle, consistent and understanding parenting is what's needed, along with a determination to get him seen despite a system that's utterly inadequate. You're doing brilliantly by the sounds of things, just keep going.

Sorry, just remembered you asked whether paediatrics are different to CAMHS - yes. CAMHS don't do much for autistic kids - a paediatrician is what you need to get the process moving for a diagnosis. CAMHS rarely flag up kids that might be autistic (at least not in our area) - you usually need an entirely separate referral.

Don't give up. I know how it feels to be up against it - our first paediatric referral, we were turfed out by some nob of a registrar who ignored all the evidence I had to show her. It's horrible, soul-destroying and exhausting but you have to fight to be believed. Message me anytime if you want a chat x

im not sure how it workds. in your area,but would calling out your local crisis team in this middle of a meltdown help?if it could mean they go back and write this up,see him in his turmoil state.surely they woul have to act? they can again be hit and miss but im just clutching at any straws here to get him into the help system

jsut this week in the papers was the story how the government are telling parents to pay for their own mental healthtreatment.! i wanted to strangle someone.

I know how you feel op as our 9 year old is exactly the same. He's not too bad with sensory issues, although his clothes have to just right and he gets frustrated if we say we are going to do something and then don't, he also can't seem to see other people's points of view easily and takes things extremely personally (eg when telling off all the kids for running around or not going to bed, he will be the one who will kick off because you are telling him off the most and it's not fair)
We have considered whether there is something more going on but he is great at school etc so we are not so sure. We have had a tough couple of unsettled years so I'm thinking it's anxiety as he often complains his chest and tummy hurt.
Things are a little more settled now so I'm hoping that will help.
Could there be some anxiety going on or something going on at dads or elsewhere that you're not aware of that could be causing it?