Siblings of a child with mental health issues

[Frazzled193736]

Hi not sure where to post this. Plz advise.

I have name changed. A bit of info, I have 2 kids, my eldest has mental health issues. He is under 12 years old. Throughout his life he has always been "different". He has never been naughty. We weren't sure at first whether there was a possibility of autism or adhd, opinion also expressed from school. He was seen by cahms etc and they decided it was anxiety. He saw a counsellor for 6 weeks.
Anyway, he has always ruled our family. His mood swings, his meltdowns, his phobias, his fears. Suicide threats etc all take centre stage. Main issue at the moment is refusal to do school work and crying about it every day shouting, storming off etc. We can spend hours talking to him, reassuring him, love bombing him.

Nothing we do seems to help. He has a perfect life, everything he could want. A loving family, lots of friends, he's clever. Good health. Lovely home. Lovely holidays. Basically not a single thing to complain about.
But for some reason nothing gives him pleasure and never had. Not even taking him to disneyworld florida

Anyway, that's a bit about him and our life. Currently under cahms again.

My issue is his younger sister who is 3 years younger than him. She is perfectly behaved. Never have any problems with her at all. She is always pushed out due to my sons meltdowns. Whilst we are dealing with him she has to just entertain herself and this happens alot.
She has come to me recently and asked to speak to me about why is he like that? Why does she have to put up with it. She's sick of it etc. Obviously lockdown hasnt helped him or us.
Im feeling tremendous guilt towards her being affected by all of this. I didn't sign up for this when I decided to be a parent. I know that sounds terrible and I love him with my heart and soul but Ive hit rock bottom today and feeling angry about it all.

If we treat our daughter for her good behaviour, or we praise her, it has a massive negative effect on him.

Cahms are there to support my son, but there is noone to support us as parents or his sister. We just live on eggshells around him and he's not even a teenager yet.

Any advice on how to help my daughter being stuck in this situation? Thanks

I don't think I made myself clear in my posts. I didn't mean that we choose not to praise her because of him.
We are aware of the situation and we make sure that we always praise her, cuddle her, spend time playing with her, take her out. I have just last week taken her to the seaside for 3 days just me and her. My son stayed home with his dad and they went on bike rides together etc.
Also my son is a large presence in the house, he actually spends alot of time in his room so my daughter is with us way more than him.

Her problems she's spoken to me about are that she's generally annoyed by him kicking off etc and also that I mentioned she has to entertain herself whilst we are dealing/negotiating with him. After reading your comments I can see this is something we need to address. One of us needs to take her away from the room whilst the other deals with him

Could be PDA, if he resists doing things a lot? Which requires different strategies to more classical autism.

Regarding jealousy over praise/rewards, there is no issue if you decouple doing nice things from behaviour for both of them.

Read Alfie Kohn's work on how praise/rewards are just as detrimental (two sides of the same coin) as criticism/punishment.

How to Talk so Kids will Listen and Listen so Kids will Talk is similar too, but more practical than theoretical.

PPs have mentioned that the OP's son being able to cope at school and having meltdowns is manipulative. This, actually, is very common in children on the Autistic Spectrum. Holding it all together at great cost, then having meltdowns where is is safe and the effort of school has just been overwhelming.

My son had a diagnosis of Asperger's Syndrome. Now called High Functioning Autism, which is an unfair name change. Implying that a person has less difficulty. In many ways, they have more difficulties because they are expected to look and act NT and have less/no allowances made for them.

My son had an older sister. His difficulties did not become sufficient to go for help until he was about eight and they had established a very solid relationship. Later on though, when life became very difficult for us as a family when his MH deteriorated badly, I'm aware that she did not get the support a teen girl needed from her mother.

OP, I'm really sorry your family is not getting the support you need. We were with CAHMS years ago and saw the service contract by 40% due to reduced funding. It got worse.

If you can get a private diagnosis, it could serve you well in knowing how to help your son, and looking for appropriate support. You've had good advice here about separating as parents so as to give one to one time with both youngsters.

Best wishes,

SFC

OP, I think you should also be aware, especially as your daughter hits her teen years, of your dd's need to sometimes behave badly too - as in she feels there is enough space in the family for her to behave like a pre-teen/teen/be unreasonable/act out and isn't shoved into the "good child" role.

Have you got Young carers in to support your DD? They can support with the emotional aspect of having a non typical sibling.

He sounds very similar to my DS13, who has Aspergers (high functioning autism), ADHD and Anxiety.

My DD11 has had support from Surrey Young Carers (because of being his sibling). They have been really good - and particularly helpful with lockdown - it meant she could also access a "Key Worker and Vulnerable" school place.

It is extremely tough being the sibling.

Have CAMHS considered medication? I'm not sure what your views would be, but DS was put on a low dose of Prozac a couple of years ago, and it made a massive difference. You could finally see his character, not just the overwhelming anxiety. It was really important alongside the other counselling etc.

Two things jumped out from your post:

1. Disneyworld Florida would have been DS's worse nightmare - the crowds, the 'chaos', the queuing, the sensory overload.
2. You say "we can spend hours talking to him", but if he is like my DS, that may be too much. I find I need to say less, but keep calm firm boundaries in place. It is very difficult though.

Have you every read the "Love Languages for Children" book - it may help with insight into what your two very different children crave.

I do think high functioning autism from your description. I would try to get a second view if possible, or see if CAHMS could refer him to a specialist centre (CAMHS Maudsley in London) for an assessment review?

I also would think of sensory issues. Being too sensitive to some things at times, but also craving certain sensory things. My DS loves the softness of fleece, and insists on having a fleece blanket in his bed, under his duvet right next to his skin. He has also found weighted blankets or weighted jackets very calming. He is also crazy about the "feeling" of being on a roundabout in a playground, and finds that spinning sensation really calming.

It is really tough on everyone in the family.

Financially, particularly if you need to access any paid support or counselling, your son would possibly qualify for DLA, even if the only named condition is "Anxiety" at the moment. You need to be very detailed in filling in the form, but with his presentation of symptoms you could well be eligible. It isn't means tested, so doesn't depend on your household income.

Cerebra.org.uk had a very good guide on completing the DLA forms for a child with a mental health or SEN condition,

Are his meltdowns in response to demands or expectations? Has anyone suggested PDA?
It is quite a different presentation to high functioning autism, and not all counties formally "recognise" the diagnosis.
Www.autism.org.uk/about/what-is/pda.aspx

Hi. Just wanted to add my experiences, it’s not an identical situation but there are parallels.
Elder sister (of 7 years) with learning disability and autism. Behaviour could be challenging but this was usually verbally challenging and socially inappropriate.
What helped; age difference meant sister was out the house and I got time with my mum. My mum had set activities that we did together alone eg Friday night pick me up after school treated to tea at Tesco then we did the shopping, or she would sometimes meet me for a picnic lunch during school dinner time. These were rarely cancelled and where they fell into a routine where guaranteed 1:1 time. Getting to stay with relatives/family friends. My mum always ensured my friends were welcome in the house and we had space. What didn’t help; my sister rarely got consequences for lower level behaviour “winding me up”. I was expected not to react, even now with my sister this strategy doesn’t work and it was unrealistic to expect a child/teenager not to respond to extreme provocation. No consequences is difficult I would have accepted appropriate consequences. Being asked to involve my sister in my friendship groups-just occasional but it just wasn’t fair on anyone and didn’t help.
Now; just so you have some hope for the future. My sister and I are extremely close now, she is a hugely positive influence on me and my biggest supporter. She’s also an adoring Aunty to her niece. I hold some resentment towards my mum but we’re very close and she has always supported me fully in my life. She dealt as well as she could with a tough situation.
Look at Young Carers, often there doesn’t need to be a diagnosis.

Financially, particularly if you need to access any paid support or counselling, your son would possibly qualify for DLA, even if the only named condition is "Anxiety" at the moment

Just to add, OP, while you'd be free to spend DLA payments on private therapy, etc (or whatever DS needs), you don't need to evidence a financial outlay to qualify for DLA - it's about the care and/or mobility support DS needs relative to an average child of his age.

Separately, I'd recommend trying to source some counselling for DD so she has a space to discuss her issues where they can be completely about her - I did this with my DS (his siblings have far more challenging behaviour, similar to yours with different behaviour expectations, etc) as it's all very well him discussing with me (and we obviously do that too), but he does need his own space where it's just about him outside of the family dynamic too.