Really struggling at the moment.

[Tasha]

Goodness, this is my first post here and I have knots in my tummy just writing it, as if it is sort of admitting to myself stuff that I know yet try to block out.

I guess I am just looking for a little support. I have three children and two of them have different situations going on right now.

Last week it was decided between myself and the deputy head (and his teacher fully agrees) that my nine year old will go for ASD screening. It is something his last school said but never did anything about but this school is much more on the ball. He is struggling loads atm, there are lots of things but right now the one thing we are struggling with is his inability to cope with routine change. I dread Thursday's as he has speech therapy in the morning, it throws the whole day out for him and results in lots of tears. Last week he cried from 10.30 am ish until about 4pm, then the tears began again about 7.30pm until about 11pm and then he woke up crying in the morning. I warn him about changes, I repeat it over and over but he just cant cope with it.

The other thing is he of an age that he is becoming self-aware, so he cries because he knows he is different but doesnt know how I dont know how to reassure him. Any ideas/tips? I think many of you have much younger children though, so they may not be at the self awareness stage just yet.

And my other child who is having various issues is five, almost six. The deputy head describes her as not emotionally resilient. In other words she has lots of meltdowns. She has sensory issues, so smells overwhelm, too much noise overwhelms her. She too has the routine thing (to the point that every activity at school and at home needs a sand timer so she is aware that things are going to change). She is having play therapy. I got her a feelings book for class to try and reduce the meltdowns.

She self-harms during the meltdowns, she hits her head hard over and over, she tries to pull her hair out, she throws herself at the wall etc. It is soooo distressing to watch. I dont know how to help her when this is going on?

I feel really sad atm, just like I am failing them both by not knowing how to help them. I wish I could take it away from them both.

 

[avidwriter15]

I am sorry - I don't have any advice about ASD but sending you hugs

 

[sam2eb]

It's really hard to see our kids struggle

Would a schedule help your son maybe? Lots of asd kids like to follow schedules as it let's them see what's going to happen. Asd people are usually very visual thinkers so seeing a schedule infront of him might help him cope with things like his speech therapy appointments.

We struggle with meltdowns too. We have been recommended to make a calm place for my son, somewhere dark and quiet for him to go when he's getting worked up. It hasn't really helped for us but it might for your daughter.

It's not easy xx

 

[sequeena]

I'm sorry Tasha, I wish I had some good advice but I don't It must be difficult to have 2 children with these problems. I only have Thomas and often feel overwhelmed and over worked!

Thomas also has sensory issues and multiple meltdowns. Of course with a meltdown comes the head butting. I've once had him slamming his head off a shop window. Holding him makes it worse and distraction doesn't work so basically I make sure he has something soft under his head and I let him carry on. It's hard to watch and I feel awful but there is nothing I can do. Once it's over it's like it never happened.

I hope things get better I just wish I had more advice. Thomas is only 2 so I'm still trying to figure it all out myself

 

[nicki01]

Sorry things are tough, my daughter was diagnosed ASD in November, she is 3 now so still only young. Things are getting harder with every week that passes, transition has now become a huge problem and also the car! I dread them! Making it worse I'm due to move house in 8 days which terrifies me as I've no idea what this will bring!
We use visual cards, and now and next boards to explain things to Charlie as she isn't very verbal, she does have words but can't 'talk'.
I find these are hit and miss as sometimes she stays calm and accepts what's happening but other time they cause huge meltdowns if she isn't happy about what's going to happen!
Hope you get some support and some answers.
It must be tough with 2 children having difficulties, my youngest is 8 months and I terrified of what the future may hold and how I will manage if she is asd as I barely manage with Charlie, she is 3 and almost half my height and is so so strong! When she goes it takes all my strength to control her.

You are not failing them, your doing really well.

 

[alibaba24]

Im so sorry things are tough for you. my DD is not disagnosed atm but im working on it. even though she is much younger i can sort of relate i dread going into nursery to find out what shes been up to that day. i just keep reminding myself there are children much worse off and we should be grateful for what we have

sending big hugs. if you ever need to chat or vent

 

[Tasha]

Firstly thank you all for replying to me, I hope you dont think me rude for not replying before now. I am just finding it difficult to cope with tbh and I think there is a degree of denial going on. I've pushed it all to the back of my mind. It's nearly April and April isnt a good month for me, so difficult for me to try and deal with this all on top of sad dates. I will though obviously, for my children plus we have the early assessment forms given to us today, I have to fill in my sections, the school have filled in theirs. It doesnt make good reading

avidwriter, thank you for the hugs

Sam, I think a schedule would help him, I will suggest it but I think the school are a bit reluctant to put things in place without a diagnosis tbh. I will def do one for home. We dont have speech therapy again until the 24th April (last week was the last one until after the Easter holidays) so I think it may get worse before it gets better.

I've tried creating a calm place, with little stimulation/sensory things but it hasnt helped at all.

Thank you so much for the suggestions I am sorry you struggle with meltdowns too.

Sequeena, the meltdowns in public are so hard, I feel everyone are so judgemental, like bad Mummy not cuddling/helping her when she is so upset but like Thomas it makes it worse. Of course we dont want to stand by and see our babies in such distress. Plus I think they think I did something to make her naughty Any way understanding


Nicki, I am sorry things are so tough right now. Your girl is only young, is she at school/nursery? If so are they helping or are you getting support from any where? I finally feel like we have a school on our side and I am sure this will make all the difference if we do get a diagnosis.

Remember that you too are doing really well, as she gets older you may find that things arent as tough as they are now as she may well find coping mechanisms. My sons best friend has a diagnosis of ASD and he now knows when he is getting angry and heading for a meltdown, so takes himself to a lowly lit part of the corridor to calm down. I cant promise that will happen for Charlie but I hope it gives you hope.

Have you thought about sign to see if that helps with communication and therefore may reduce some of the frustration? It is tough because what works for one wont work for another.

Alibaba. I am def grateful for what I have, I adore my babies and I've been through so much loss, I know just how blessed I am to have these children. I also know that whether there is a diagnosis or not, that these quirks make my babies who they are, to me they are perfection.

I imagine assessment will be draining, so if you need to talk then I am here

 

[alibaba24]

Its so tough when you know other mums think your child is behaving badly. the ignorance is hard to deal with when its outwith the childs control xx

 

[Eternal]

Sam's school has some sort of chart (think its a train) which shows whats happening thoughout the day, which helps.

As for noise, he has ear defenders, he looks silly so may not work for an older child but he loves them, he uses them a lot.

Its all very daunting and exhauting, i cant imagine having two going through it togther. hugs xxx

 

[Midnight_Fairy]

can they apply for him to be statemented Tash? Get it in quick though as it all changes im July and the new plan looks like a right faff! xx

 

[Tasha]

So about two months ago it was decided that M (now ten) needs assessing for ASD, it took the school a while to get organised and about four weeks ago they filled in their sides of the form and then me, mine. They sent them off a few days later and I was told the families who had theirs sent off four weeks previous hadnt heard back yet so expect quite the wait. Fine. Just over a week ago we heard back (said families still hadnt heard back) that someone was coming into observe M last Friday and that I would get feed back a few weeks later. Again fine. At this point the deputy head said she was shocked how fast he was being seen and the others still hadnt.

The observation happened, the class teacher told me that the observer agrees and that the assessments needs to be pushed through. The deputy head told me that this almost never happens, one observation and on the way to diagnosis.

So I was expecting that few weeks wait but this evening I got a call from the school saying the observer wishes to meet with us on Wednesday. So three school days from the observation.

I know this is a ridiculous thing to complain about especially given how hard so many of you have to fight (believe me it hasnt come easy, his last school said for YEARS they suspect ASD and did nothing ), so I am truly sorry if I am offending any of you. It is just that I thought I had weeks to get my head round this all and now I dont. Plus I have anxiety and my head automatically goes oh my goodness why does it have to be rushed through, why does she need to see us so quickly and so on?

 

[Misstrouble19]

sorry to hear that you are having problems cant imagine what you are going through unfortunetly i have no advice but sending hugs your way xx

 

[Tiff]

Don't ever feel that you can't share how you feel hun! It is A LOT to take in and once the roller coaster starts, its incredibly tough to try and keep up.

Its tough because our services and practices are different across the pond than yours are, but if you ever need advice or even just someone to listen to I'm always here.

I wanted Claire's diagnosis, but when I got it I was devastated. I didn't really "want" it, I wanted an answer for why she was the way she was. Its a tough thing. I have a hard time actually going through the SN boards on here because it reminds me too vividly of what I went through with her, and I shut down emotionally.

But that doesn't meant that if anyone has any Q's I don't mind answering them! It is very hard to explain for me. Like I have a tough time seeking out people who need support, but if someone messages me I'm game. Anyhoo, long story short please don't hesitate to message me

 

[Tasha]

Thank you both.

Tiff that makes sense to me, it makes it too raw to actively seek out these posts but you would never turn away a mummy (or daddy) who approached you. You know how hard that time can be.

I forgot to update this, the observer is convinced Morgan is on the spectrum, we need to wait for a camhs appointment and she thinks they will diagnose it. She wants him statemented too.

 

[mummy3]

Its not easy but theres a sense of relief in a way to have an answer and get into the appropriate help. I'm so sorry its taken so long and for it to then come so fast that its not allowing you to stop and process

 

[nicki01]

Sorry I haven't been back here and only just seen you replied! We do have nursery supporting us and they have been great Offering advise and strategies. I've asked to be put forward for a course on signing but they said the waiting list is huge it will be ages if at all. Although I've just started a course called early bird, if anyone gets offered it, grab it with both hands, its great!! Its like going to school for 2.5 hours a week but learning just about autism, I've learnt so much and seen an improvement in charlie since I've slightly altered how I do/approach situations!

You sound like your doing fab, I can't imagine its easy but your doing amazing. I've just read through this post and even though you have your own things going on, you have given lots of help and advise to everyone else. You seem like a really kind person. I know it sounds cheesy but you have really cheered me up today!! lol.

 

[Tasha]

I've not updated this because there hasn't been anything to write. Six months ago he was referred so we rang last week to be told he is on the list and they would ring us when he gets to the top but they can't tell us how long the waiting list is. So frustrating as I feel we are on a tight schedule as he goes to secondary school soon.

 

[Midnight_Fairy]

When is the final deadline to apply? Ours is October x

 

[Tasha]

Also October, so there is no way we will of even been seen

 

[Midnight_Fairy]

Things can be altered for SEN x