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.

Does he resent you OP? Does he hate the fact his father didn't bother with him and that you were working all the time/studying.... I am NOT blaming you in the slightest btw, I'm just wondering if you've ever had the conversation with him about his anger/anguish with his previous years and if he's ever felt pushed aside by you. Does he realise you had to do the things you did purely for him? I think you should have some counselling together, just you and him. His behaviour all points to wanting to get your attention, even if it's negative.

Sorry I thought it was a teacher. I am so sorry.

I think you just have to keep going to get him seen by professionals.

One word..autism?

We were in a similar situation with DS until we changed his diet. We changed to natural foods, cut out sugar wheat and dairy and he's a different child.

You haven’t let him down. You sound like a lovely mum that just needs some time away from it all. Having a toddler is hard enough on it’s own, no advice sorry but I do hope you get help with your son

You need to see another GP. I didn't ask my GP if he thought DS was autistic - I told him I wanted him referred for assessment. Ask to see a different GP. Tell them you want him to be assessed and say why.

If they won't help, change his GP if at all possible. If it's not possible, look into making a complaint.

I'm not sure CAHMS is what you need for diagnosis. My DS was diagnosed by specialist paediatricians in a specialist unit within the "child development clinic" at the local hospital.

You need to find out where kids are diagnosed locally and ask for a referral to there, not to CAMHS.

Try googling your hospital and "autism diagnosis" or "child development clinic". If you can't find it there, then contact the National Austistic Society and ask for help with this:

www.autism.org.uk/about/diagnosis/children.aspx

Give them a ring and have a chat, I've found them really helpful.

You shouldn't have to pay private for this. You need a NHS diagnosis. I got DS referred with a much shorter list of symptoms and he was diagnosed when he was nearly 10.

He sounds just like my 9 year old DS who has been on the waiting list for an autism assessment for 2 years and 4 months. I am convinced that my son is autistic.

Firstly, look up the "triad of impairments" for autism. Write down the headings and list all of your child's difficulties under those headings.

Go back to your GP with that list and insist that he is referred for assessment. Whoever told you that he can't be assessed because he doesn't show it at school is talking out of their bum and doesn't know the first thing about how autism presents itself. It's called Masking.

If one GP won't refer, go to another or change doctor's surgery. Do not stop until someone listens. This is not pushing for a diagnosis, it's pushing for him to be assessed by medical professionals who know what the signs are (many GPs don't!)

My children's school denies my son's autism and also denied my daughter's (diagnosed 3 years ago).

Also, apply for Disability Living Allowance. Ask your Council's Money Advice Unit for help with filling it in. Phone them first to get a date booked in for doing it over the phone. Then ring up.for the form. Based on what you've described, your son's care needs would probably get mid rate care (approx £234/month). If you earn less than £123 after pension and childcare, you can also get Carer's Allowance at £66/week if your child gets mid rate DLA or above.

My son has no diagnosis but needs lots of care similar to your son so gets DLA.

Finally, when he is calm and open to a reasonable conversation make it very clear to him that there will be serious consequences for ever raising a hand to anybody in the home, no matter how cross he feels. Set out the consequence and follow through (not when he's in meltdown but when he's calm). Provide something else for him to hit when he's cross like a Gorilla gym with punch bag that can hang Inna door frame.

Also, sometimes getting another familiar adult involved just takes the wind out if their sails. You did the right thing getting help from your parents.

I often rung my parents to help distract my son when I can see a meltdown is brewing.

He was in mid meltdown the other day and just having my Dad turn up stopped him in his tracks. Often autistic kids will only show their "safe" people their true selves (you and DH - people that they trust implicitly and that they know will love them no matter what).

I agree you shouldn't have to pay privately but it depends on the luck of the draw. GPs and even paediatricians who are there to diagnose autism often don't have decent training to identify the different ways it presents. In fact, GPs often know very little. The paediatrician in the autism clinics at our hospital now isn't an autism specialist, just a regular paediatrician. Her knowledge is poor bearing in mind she's supposed to be the expert.

Also, in our county - and I believe it's the same in many others - you need a complete set of reports to get a paediatric referral. So here, you need a Speech and Language Therapy Report, an Ed Psych report, an Occ Therapy Report and a SENCO report - all agreeing there's a problem that warrants a paediatric referral. In our county - not sure if this is the same everywhere else - you also need a report from the Advisory Teaching Service (kind of specialist team who have a very, very, very long waiting list). Any referrals presented without that complete set of reports will be refused by paediatrics - regardless of the symptoms the child is presenting. GPs are not supposed to refer without agreement of the school - and without those reports. All of them. Good luck trying to collate them all - I hope you've got lots of time. And if the school disagrees, you're completely out of luck. Oh yes, and by the way, some of the NHS professionals aren't very good either - we've had terrible speech and language reports at times which have completely missed the main difficulties my child has - and bear in mind he's in a special needs school so they're not minor. Honestly, it's really bloody frustrating and the knowledge/quality is variable.

I had this conversation with some other families recently who have just gone private. I actually said that's amazing for you that you've finally got your diagnosis and know for sure what's going on with your child - but it's utterly disgusting that you've had to to go down this route and spend your own money.

So yes, you MIGHT be lucky enough to tick all the NHS boxes, get all the reports, get decent therapists who have a good working knowledge of the different presentations of autism and you might have a fairly easy ride with just a bit of determination. On the other hand, you might be fighting for years and get nowhere. Determination doesn't guarantee you a result, unfortunately.

In our area, you fall out of the paediatric diagnosis system for autism at age 11. That's why there's a load of teens left drifting, desperately suffering with their mental health and in need of proper assessment but with no clear path. The system is terrible.

If you can go private, it will save a lot of time and heartache. Also, the report you will get will be incredibly comprehensive and far, far better than the typical NHS diagnosis letter. When I expressed my sympathies yesterday to a mum that had paid out for a diagnosis, she said she was glad she'd paid the money because the reports she got were phenomenal and have allowed her to get the right type of support for her son. Paediatric reports from the NHS are very basic indeed.

I have one child diagnosed at just before 4 yrs old, and his twin sister is now going through the process at 10 yrs old. Two very different experiences. I also ran a parenting group for those who have children with additional needs for a few years. Believe me when I say some of those parents were the grittiest and most determined people I've ever met and yet professionals just blocked them at every turn. Some eventually succeeded, some gave up, some went private.

One example I can give, the school and Advisory Teaching Service both refused to acknowledge a problem, wouldn't support a referral to paediatrics. Speech and language said there was a problem - but because the others didn't agree, paediatrics wouldn't see him. As luck happened, he had another unrelated condition which required a paediatric referral. Once she got her son in front of the paediatrician, she grabbed her chance and said "oh, while I"m here, can I just talk to you about X, Y, Z". Paediatrician agreed he needed assessment and boom! Within 6 months he had a diagnosis of autism, SPD and various other things. If he hadn't been in front of the paediatrician for the unrelated condition, he'd probably still be undiagnosed now as the school would not accept there was an issue.

If you can find a way to get through the NHS system then brilliant! If you are hitting brick walls, I would seriously suggest going private if it's affordable. Even getting a private speech and language therapy report/private Ed Psych report - you can go back to the school/GP and present your evidence and try for a referral that way. When you're at crisis point like this OP, there's simply not the time to wait through the NHS system.

Calming for sleep:

Weighted blanket before hand,
Foot massage ( deep pressure)
Hand massage
Rolling a gym ball firmly over him
Rocking in one plane
Firm hugs

Stop talking to him when he is having a meltdown. Quiet, hug tight for if he will let you.

Try tight clothing football compression t shirt or Thermal base layer.

Keep him well fed, plenty to drink, even temperature.

If sitting with him is what it takes do so.

Whereabouts are you? If you're in the south you could ask to be referred to something like the Newcomen Centre at Guy's and St Thomas's - www.evelinalondon.nhs.uk/resources/patient-information/the-Newcomen-neurodevelopmental-service.pdf

I would advise melatonin for sleep. This was life-changing for us. We get it on prescription from our paediatrician, although we’re overseas, so not sure how common it is in the UK.

He's too old to be seen by a paediatrician now

No he isn't.
ASD diagnosis is via community paeds in some areas or CAMHS in others.
Tell the GP you need a referral for ASD assessment. Don't leave till you get one! If it is via school (in our area ADHD diagnosis is through a school referral) then the school refusal would count as a school issue. Does he talk about his obsessions at school? Have a wide circle of friends with age appropriate interactions? Those are also school observations they can note.

I had similar in that CAMHs said ds wasn't having behavioural issues so wouldn't take him on. Therefore GP rejected asd. School eventually has referred on to asd pathway (not ed psychology) and we're on a long waiting list.
Have you asked for OT referral for his sensory issues (it was the only thing GP did for us). Getting to see them may open other doors.
I also got ds referred for art therapy through CAMHs which helped with his anxiety but ended too soon and we were not able to know what had been said so couldn't follow on with this at home. However if I had the money I would definitely pay for this as he did benefit.
I've found the only way to get help unfortunately is pester every professional until one gets it and refers on.
Finally does he fit criteria for disability living allowance (dla) if so apply they don't need a diagnosis just a need. It made organisations sit up and take note as if he was in need of dla he needed some help.
Not helpful in the short term I know.
What about autistic charities can they give you any practical help/advice.
Make appointment to go into school with evidence if you have any and keep going in until they sit up and listen.

You haven't let him down OP. You need a break (literally need), your emotional and physical reserves are run down and you've found a safe loving way to care for DS while you have a break.

DS has been let down but not by you. You shouldn't have to push this hard for a diagnosis.

If the grandparents are happy to have him, I can't see why it should be a problem to leave him there occasionally. Is he well behaved while with dgps?

Firstly, your guilty feelings are the mother-guilt we all feel, with a little extra because your son is struggling - not an indication that they're reasonable feelings! You haven't let your son down. You sound like a wonderful mother.

Secondly, try to see a different GP (and more different ones if need be), with an actual list in hand of all of your concerns.

Good luck

OP are you able to say what area you're in and we can help you find out what the process for diagnosis is in your area?

It's not you that's let him down op. Try for an asd referral \assessment again and don't take no for an answer, go privately if you can. Also apply for an ehcp. The school refusing suggests he isn't coping at school and if he bottles that up all day it makes home life much harder. If they say no appeal. Everything is a fight sadly.

Having an ehcp assessment will get you access to an EP too.

www.ipsea.org.uk
www.autism.org.uk
Check these sites out. I got my youngest privately diagnosed after his brothers were diagnosed

Google your county's CAMHS - the local authority should have a web page. It will tell you the referral routes. Mine said school/GP/paediatrician or parent self-referral.

Check out sensory processing disorder

Thank you everyone. Woke up today feeling slightly better.
DS is away out with grandparents and younger DS with DH to give me some head space.

Wakemewhenitsover I'm in Scotland, North Lanarkshire. I have a feeling a lot of the routes/advice given has been very English school/NHS orientated but I am thankful nonetheless and it has definitely given me a good starting point.

He’s got autism
My two sons have it ,they do what you described
Your son is masking in school,then he can’t hold it together when he gets home