Coiled spring

[sarik]

We are really not having a good time at the moment, not really sure whats triggered it but we seem to be bouncing from manic episodes to complete meltdown and back again, its been going on for weeks with no sign of improvement. I am totally exhaused and feel like a coiled spring waiting for the next crisis, i can't eat or sleep and no matter what i do can't seem to dig myself out of this low. I guess I'm just wondering what others have in terms of support (my husband is fantastic but works long days so most of the parenting is left up to me). Sorry for the negative post, it's just where i am at the minute .

[Abney]

Sorry I'm not able to advise but didn't want to just read and run.

Hope you get some good support/rest soon , sending sympathy.

[MotherNature]

Morning Sarik,

This is a really hard post to answer as we all have individual needs regarding support.

I think most of us have been where you are in terms of feeling totally overwhelmed.

My sanity comes into question on a regular basis !

Can you say a bit more about the kind of support you need, are you looking for professional or family/ community help.

Support for me takes the form of understanding neighbours allowing our boy to play at their house and we return the favour. Sometimes it's the two children playing minecraft together to allow me the space to order the shopping or even to potter in the garden. I have no shame in doing whatever it takes to maintain some kind of mental balence. If letting them run riot at the indoor play park and then sitting them down with a film buys me an hour to have a conversation with my husband, I'll do it.

I don't have the luxury of family to help out and know very well that the availability of services in my area are poor to say the least.

On a completely non PC point, being the mother of a fasd affected child is an all consuming, physically, emotionally and mentally draining task.

No matter how fantastic your partner is - and I'm grateful to have one of the best - it's still incredibly hard.

I've no idea if this has been of any help Sarik, but please know that you're not alone , there are plenty of Superwomen out here!

Ver best wishes

[ChrissieD]

Its good to be able to air our frustrations and feelings in a forum where there's an understanding! To be able to articulate them too must help!!

Have you any friends who could support you in any way during the day on a regular basis? Even if it's for a coffee, or to offload, or to babysit so you can get some time on your own?

Sometimes I feel I have to be strategic in my planning to make sure I have a break.

Take care Sarik and let us know how you get on.

[dianakitten15]

Hi Sarik,

I have an adopted son who has meltdowns too and therefore I have spent many years working out what works well and what doesn't. I am unsure of the son's age but here are some of my tips, I hope they work for you also.

meltdowns occur when you child is feeling overwhelmed

they can get overwhelmed by both negative (time to stop playing) and positive experiences (going to a party and getting too overexcited)

best therefore to keep everything on a low simmer

give countdowns to when he has to stop his favourite activities ie. don't stop bluntly give 10 min advanced notice to stop or get ready for bed etc

give your child a timetable of simple (agreed) activities for the day (these children always need structure in their lives ie do not like the uncertainty of not knowing what's coming next)

Also, my son is currently doing half days at school. and this has made a tremendous difference, as a full day at a mainstream school is too overwhelming in many ways ie socially, academically and causing an assault on his sensory processing issues

I really hope this helps because as you see can from the responses, we can all empathise with you.

Pls note also that the FASD Trust runs support groups across the UK for FAS parents and their children. Have a look on their website for your nearest support group.

Thanks

[WildPoppies]

Hi Sarik

Sending lots of positive thoughts and vibes your way.

It is incredibly hard parenting FASD children as their needs are so complex. Trying to provide for all their needs and maintain a balanced family life can be a huge, exhausting task.

Is your LO adopted too?

Parenting children who have experienced early life trauma, with fasd, and likely other complex special needs thrown into the mix is really a mammoth task, and sometimes we all have to vent our feelings and frustrations, as you have here.

Something from a Dan Hughes book always stays in my mind: we just have to be good enough.

Not perfect, not anything other than good enough.

And sometimes good enough is about an easy frozen meal going in the oven, plenty of cbeebies or whatever your child likes, and an early night. Sometimes it's about letting your child go to a friends/relatives house for a couple of hours - or a childminder.

Our children's therapist recently told us that the children need some superficial relationships, not just the family based relationships. And yes, it's not perfect, but it will meet their superficial needs and it allows me a moment to breathe.

I have to continually remind myself that my children think and feel differently, have enormous anxiety at all times, and so I and my hubby have to lower our expectations constantly.

I really don't know if this is helping you, and I hope there might be a glimmer of worth in all this.

But, do reach out to whichever professional (medical, camhs, social services) you can trust. Reach out and ask for help. If they can't support you themselves, then maybe they can point you in the right direction.

We've recently had loads of help from the family information service via our local authority.

And, if you have a carers' centre in your area, phone them up and ask if you can join - they provide loads of activities to support carers and allow you some space for yourself.

If your child is at school, contact your local SEND partnership and get them involved, again, they are full of info about local provision.

There will be support out there for you that can help you, but it takes a lot of time and effort to find the right support - but do try Family Info Servce, SEND partnership, etc.

Take care - sending a big virtual hug your way.

We've all been at the low point you describe, and I know only too well it will come my way again - but if we can all find resources to help and support ourselves we can be better prepared for the next low phase.

Take care.

[sarik]

Thank you all so much for the replies it really does help knowing that other people are exeriencing the same thing. Wildpoppies, yes our daughters are adopted, they are twins who were both diagnosed in the summer but who present totally differently. As well as FASD beth struggles with anxiety which manifests itself particularly if she is not near me which means that at the moment we can't leave her with babysitters or childminders, she won't even go to our closest friends house without me. She is just about managing school so i do get some time to myself (this is when i eat!!). I guess I'm just going through the process of adjusting to a new normal. Thank you for all the suggested strategies i will definitely take them on board, sudden changes definitely trigger a meltdown so we are using lots of warnings and countdowns.

Tonight they have come home happy, done homework and are now writing their christmas card's, so for now i can breath.

Once again thank you all so much x x

[Magicgem]

Hello Sarik,

I used to pay a TA from the child's school to come a couple of times a week just for an hour at a time to do some play with the little one. If they come to the house it is a real help. If they are known to the children already, even better. There may be other options, a local nursery may have a nursery nurse who would like to get involved.

I used his DLA to pay for this help. It meant that I could get on with jobs or just try to relax without worrying.

A pictorial timetable may help too. You can use Velcro and the children can remove the activity as the day progresses. Time consuming to do initially though.

Take care, attend a local support group if you can. Lots of love to you.

[Abney]

Hello Sarik,

I'm glad you have had some helpful replies!

I just wanted to say that I have a LOT of problems with my 5 year old sons anxiety manifesting in a similar way to you describe - the being anxious about going to things without me present. He is extremely needy of attention when at home too, and I really struggle to get him to play by himself for a few minutes. It does become so stressful and swallows you up doesn't it? He hates being babysat to the point of sobbing /meltdown at the thought, and has never been to a friends house (or even his grandparents house) without us there. So I just wanted to sympathise hugely !

Finally - if you are managing to get her doing homework you are doing better than me!!

Take care

[sarik in reply to Abney]

Homework is definitely hit and miss as with most things, some days are better than others and as christmas creeps ever closer my grip on their routine and the schools routine is steadily slipping☺ tonights meltdown was caused by the printer not printing right NOW!! Which lead to a mix of mania and screaming before bed, just got to get through the nightly night terror before i can crash!

[Joygirl]

Have you read the book by Julia Brown and Dr Mary Mather? Whole chapter in there about challenging behaviour. You can get it from Amazon- FASD Parenting a Child with an invisible disability