Both children hysterical

[Disabrie22]

To not drip feed, my side of the family has several family members with diagnosed anxiety, depression and OCD and two have had nervous breakdowns. Everyone deals with this via medication, family support, counselling but sadly for us it is a proven genetic problem. Their father is also anxious and has been very Covid anxious.

Both my children seem to have had emotional regulation issues. The slightest thing will drive them to hysteria very quickly. For example half term has been beyond exhausting with the constant upsets. Neither are easy when it comes to leaving the house - the 11 year old never wants to go anywhere so will kick off crying and wailing and the 9 year old has issues with clothes so will become hysterical at the prospect of getting dressed - it’s very much about social anxiety.
The 11 year old will cry, wail and shout at every change no matter how preparation we give him. If we don’t prep him at all he will go into horrendous meltdown.
Covid has made the problem harder as it just creates more hurdles, disappointments.
I can honestly say we’ve tried so many different techniques - I’m in special education so well aware of managing transitions, emotions and my husband is also firm but patient and understanding. Can I also just rule out autism as this has been ruled out by their school journeys.
I can honestly say my son has always struggled with his emotions to the point where a meltdown is expected by family members and a good day without a meltdown is such a relief. School is regularly calling us as the slightest injury brings on a huge meltdown and they are concerned.

Easter has been hard going with both kids alternatively kicking off. I have organised light time out - park, walks into town with friends but even that has been challenge for my son.

What would you do to move this forward? I feel like myself and my husband are exhausted from the constant wailing and shouting.

An NT 11 & 9 year old wouldn't act the way you're describing. Having regular meltdowns at that age isn't standard behaviour. I would be seeing a paediatrician for both as there has to be an underlying MH or other issue. This isn't the behaviour of most of their peers at the same age.

Clothes organised the day before for both children. Everything laid out ready for the morning from pants to school bags.

Routine. Alarm goes off at same time each morning, routine to get out of the house is the same each morning. Sit your kids down and ask them to organise the order they want to do things including leaving.

Start the day earlier so there’s more time and less pressure.

Teach them daily medication yoga or gratitude. Do it with them.

Walk daily together

Be positive yourself and calm to help set the tone. Ask your DH to do the same

my feeling is this some form of anxiety/mental illness as opposed to additional needs.

But those are additional needs in themselves. I'm a bit concerned that you don't class them as such despite working in SEN. And your 9 year old clearly has tactile sensory issues as a minimum, given the problem with clothes.

I think the reason why parents often can't see it in their own children is that they themselves often have those traits too so they almost see them as normal. I know that I did with my own DS. On top of that most schools are beyond useless at picking up on SEN unless there are serious behavioural problems or delayed learning and very often SEN pupils will have neither of these. The systems in school for reporting suspected SEN are wholly inadequate. I would have at least 3 pupils in every class (high school) who very obviously had SEN but had managed to get to the age of 15 without a diagnosis and without anyone in school flagging it up. Parents wrongly assume that school are on the ball but they just aren't at all. Ive had teachers telling me that ADHD doesn't exist; I've had teaching assistants who were responsible for one to one with SEN pupils who had no understanding of dyslexia and said about one dyslexic pupil - "no, he's not dyslexic, he's just lazy" - despite him having a dyslexia diagnosis. I've had SENCOs ignore my concerns about a pupil who was selectively mute. I could go on. But then teachers are given half a day training on SEND when they do their PGCE and that's it so it's not their fault. The problem is that parents place too much faith in schools to spot any problems and they just don't unless the child is causing them problems in some way. It's shocking.

It depends doesn’t it? My dc have always had major problems in school more than home. School were alerting us to problems from age 3. At home we might have gone on for several years without realising how extreme the issues were. The diagnoses did take years however with one dc being diagnosed with adhd which was not obvious but made sense when we knew.

One of my children struggles with anxiety and saw an occupational therapist for some months to learn how to "be the boss of anxiety rather than letting anxiety boss you". He was taught strategies which he had to practise - and gradually he became a lot more resilient. He can now work out what he's anxious about and how to tackle it, brilliant life skill. Might be a route for you and your children?

The thing that jumped out at me was your child with the anxiety about getting dressed, are they sensitive to textures/sensory stuff in general? It can be so hard to figure out and work through but I just wondered whether they might have favourite clothes that they can feel more confident about wearing?

Thanks so much for the advice - people asking why we haven’t assessed them before because things have come to a dramatic head since Covid. Prior to that the kids were much, much happier and outbursts much less frequent. I have had my little one assessed for dyslexia. School supports with emotional well being via Elsa for both since infant school.

We’ve tried our best to manage their anxiety by reading around it, reading around it with them and by prepping the kids for changes etc etc. It’s also a positive, loving home with two sets of warm and giving grandparents. We’ve tried to get them to develop physical/mental strategies but with limited results - maybe we need to work harder?

It’s very difficult to get a CAHMS referral and the waiting lists and endless. We have leaned on the school rather than the NHS as to be honest I don’t know anyone who’s really got anywhere with them.
GP appt booked but I think it will be a private journey for us.
Will keep you posted - thanks for the support.

Forward ranger - I feel my little one may have sensory issues regarding clothes

How were they assessed for dyslexia OP?

*On-line “assessments” are not diagnostic tests.

• Specialist teacher assessors can only do some or part of some diagnostic tests. Not a full battery of testing and cannot take into account or test for any co-morbidity. So for instance, your DC may have dyslexia and ASD but not meet the current JCQ dyslexia scoring for exam accomodations. The teacher assessor can not take into account the ASD affecting the test results.
  (Nor would you apply for exam accoms via dyslexia but a different section for the ASD).

• Ed Psychs can do all tests for dyslexia but not for ASD.

• Clinical psychs (SpLD, ASD etc... specialism) can do all tests for dyslexia and ASD.

This is why the NICE gold standard is for a multi disciplinary team. But it’s expensive, which is why parents get fobbed off with the other, cheaper options.

Does DC have an IEP?
If a child is suspected of a difficulty, the school is required (by law) to produce one. They might assume as DC does not have dyslexia then then they don’t need to produce one.

As primary recognised and supported their anxiety, that this is enough to ask the SENCO to write an IEP and ask LEA for a full assessment. They might not have ASD or related condition but the anxiety is becoming enough of a problem to affect day to day life - and learning.

@Disabrie22

Forward ranger - I feel my little one may have sensory issues regarding clothes

OP it just sounds too hard. Parenting should not be that difficult. I feel there is something out there for your family that can make your lives a great deal easier.

It may be a combination of things. But if you imagine being 20 yrs on from this time and looking back wondering what you might have done differently, would you have invested in private professional help? I know not everyone can, but some of us do prioritise things like holidays and renovations above professional help which may be able to make our lives a lot more bearable.

You say the school is excellent with SEN which is great, but don't rule out additional needs that may have been overlooked. We are continually learning about diverse needs and it may be that there is something or someone out there who can help make your lives a lot more enjoyable.

An OT would be helpful in working through the emotional regulation piece - managing big emotions. You might be able someone who specialises in sensory disorders too.

Agree with all the posters suggesting you seek formal assessments. With your SEN experience, you may be incidentally providing all the support and scaffolding they need (which is great) without realising it.

My son (11) with anxiety has greatly benefited from fluoxetine and weekly CBT with a psychologist. We've now been able to wean him off the fluoxetine as a result of the intensive CBT.

Regular exercise and a good diet will massively help (both you and the children!). We've also found that putting aside a set 10 minutes a day for a chat with our children has helped massively. Gives them attention, a chance to vent and just ask questions. It's made a dramatic difference to the behaviour of our middle child (9). Best of luck

Thank you - Forward Ranger we are going private - cogs start turning tomorrow hopefully as we have an appointment.

Oh good luck!!!

I clicked because my gorgeous,clever (grammar school) empathic daughter was hysterical tonight for the first time in ages. She is also autistic....

I am a teacher and didn't spot it. I run mental health awareness stuff and really really didn't see it. School didnt initially as she is very biddable, high achieving, doesn't "kick off" but rather retreats into herself.

I realised I had some hang ups about what I thought a child wih special needs/a family with "difficulties" looks like.

Also - we normalise our own families behaviour. We've grown up with oud kids so we see them as "normal."

It also sounds like you, as did I, have naturally put things in place to help them cope and scaffold transitions etc so some of the problems aren't as obvious.

Of course we cant diagnose - but everything you said sounds like my autistic girl! She's at secondary now and functioning well and the hysterical moments are less since diagnosis and being able to put things in place.

When i first went down that route I had friends and family query it as she's not "that bad" or doesn't have behavioural issues etc. But the more I realised she is autistic I've wondered how I misssed it. You probably see at work more of those that are diagnosed young or need behaviour plans etc. But it really is common for NT kids to hold it all in at school and explode at home (have you read the coke can analogy?)

One book I often recomend is "can you see me?" By a very articulate autistic teen who explains some of the sensory issues/issues with transition/changes in plan etc.

Good luck x

"Ignoring the wailing as it goes on for hours," is the sign of a very distressed child, not "normal" for their age and shows they need some support or different support from you.

I had to realise that alhough my child was academically very bright and can discuss articulately - they need far more support with day to day life, paring back activities, routine with a meal plan (mac and cheese monday..) than I realised.Life needed to ve predictable to a certain extent for thembto feel safe and not overwhelmed. The support for transitions has to be there so much, not just when we feel they ought to need it etc. We minimise transitions (reduced clubs, spent ages looking at triggers etc.)

Just thinking they shouldn't be wailing or ignoring it wont help. Accepting this is be person your child is and working with them to make life more predictable/safe may well do. Its a whole investigationand change of mindset that is really hard ime. But what other choice is there?!

@AuntyFungal

How were they assessed for dyslexia OP?

*On-line “assessments” are not diagnostic tests.

• Specialist teacher assessors can only do some or part of some diagnostic tests. Not a full battery of testing and cannot take into account or test for any co-morbidity. So for instance, your DC may have dyslexia and ASD but not meet the current JCQ dyslexia scoring for exam accomodations. The teacher assessor can not take into account the ASD affecting the test results.
  (Nor would you apply for exam accoms via dyslexia but a different section for the ASD).

• Ed Psychs can do all tests for dyslexia but not for ASD.

• Clinical psychs (SpLD, ASD etc... specialism) can do all tests for dyslexia and ASD.

This is why the NICE gold standard is for a multi disciplinary team. But it’s expensive, which is why parents get fobbed off with the other, cheaper options.

Does DC have an IEP?
If a child is suspected of a difficulty, the school is required (by law) to produce one. They might assume as DC does not have dyslexia then then they don’t need to produce one.

As primary recognised and supported their anxiety, that this is enough to ask the SENCO to write an IEP and ask LEA for a full assessment. They might not have ASD or related condition but the anxiety is becoming enough of a problem to affect day to day life - and learning.

As an ed psych that is rather a minimisation of our role!

It's true that as we are not "medical" we cannot give an autism diagnosis on our own. We certainly often recognise signs of autism and request the formal nhs assessment and in some parts of the UK we actively contribute to assessment. I myself am a specialist in autism, ADOS trained and am far far more comfortable assessing autism as part of a MD team than doing "dyslexia testing" (there is no gold standard dylexia test).

Hi, thanks again for all the good advice - I’m trying to mentally store it and think of how to go forward. GP was really interesting today - he said that boys express anxiety a lot through anger. He said no one is born to cope with mental Heath issues and we all have to learn strategies to cope - he said many adults can’t cope with anxiety.
He said to think carefully about going to a psychiatrist at this point as he said over anxious children tend to become more anxious at the prospect. He texted us with further reading, books for our child and further bodies that could help us.

I mentioned ASD and he talked through this and he said it didn’t sound like it. He said they are seeing a high volume of children with the same issues because of the pandemic exasperating children’s mental health.
So where does this leave us? I’m not ruling anything out (including ASD) at the moment. My gut feeling is we will look at what’s been given to us by the GP and talk to our child about it. He came home happy today as had time with the Elsa which he really enjoyed, I tried to draw him out more but he didn’t really want to share anything that was said. My husband thinks a family support session might be a good idea to start, so we are all in it together and the onus isn’t on him in isolation. I don’t know - it’s so hard to know what’s best.

I know people express a lot of doubts with teaching staff and there ability to see SEN but I actually work within my children’s schools so I’m aware of the calibre and experience of the staff.
The school is extremely proactive with mental health and special needs.

My little one was assessed by a specialist dyslexia tutor who was highly recommended by two parents at school.

"For example half term has been beyond exhausting with the constant upsets. Neither are easy when it comes to leaving the house - the 11 year old never wants to go anywhere SOCIAL ISSUE so will kick off crying and wailing and the 9 year old has issues with clothes SENSORY ISSUE so will become hysterical at the prospect of getting dressed - it’s very much about social anxiety. SOCIAL ISSUE
The 11 year old will cry, wail and shout at every change no matter how preparation we give him. FLEXIBLE THINKING ISSUE If we don’t prep him at all he will go into horrendous meltdown.

Just added a few shouts into your own words.
Autistic people all have differences in their sensory systems, their social communication and interaction, and their flexible thinking. These have to be sufficient to interfere with functioning in daily life.

I hate to over rule your GP who made some decent general points about the pandemic and children, but unless this is completely new and none of it was in evidence before covid, it's just exacerbated what was already there.

The only thing I don't recall you mentioning was hyperfocus areas. Does either if your DC have favourite subjects? Do they enjoy categorizing and facts? Do they have favoured topics on conversation that they are more easily drawn on and that when they talk about they are happier and more animated or more relaxed? Computer games are common now. I wonder if your older isn't wanting to go anywhere because he's busy on his special interest?

Sensory issues can be asd

Hi Psychobobble, they have a range of interests really - nothing that dominates. A bit sporty, a bit musical and a bit arty?
Yes - definitely laptop contributes to lack of interest - one of the things that has been most stressful as a parent throughout Covid has been trying to find a balance with the tech.

Thanks Psychobobble for the shouty words - useful

I really don't think GPs are qualified to make a call on this; they have no expertise in this area. I had a friend who initially took her DS to the GP and he said "Look at him, he seems fine to me". He was eventually diagnosed with ADHD years later. Your GPs point about Covid is valid but as PP said, this only stands if these problems began after Covid. I'm sorry but I feel that drs will fob you off as much as possible because they know just how stretched CAMHS are and your children probably don't class as high priority right now.

School don’t get to rule out autism
Only CAMHs or private get to rule out Autism
Sounds like my kids ,Autistic,ADHD ,