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To have no idea how to cope with dd anymore.

(68 Posts)
Cakebytheocean2017 Tue 03-Jan-17 15:51:53

Posting as I have literally no one to talk to about this beside dh . Our eldest dd is 8 she has aspergers pretty high functioning but lots of anxiety issues and social problems.

Our day typical starts off having to physically remove her from her bed , dress her . Deal with her crying screaming , running out the house . Refusing to eat and then stomach pain sickness etc. This is while trying to get our nearly 3 year old ready and deal with the 6 month old . Dh tends to do brunt of the work in the morning and usually drives her to school alone. This again is a nightmare , she cries the whole way there or remembers something she needs urgently this can vary from a pencil to a toy . But it's always a "need" when she eventually gets to school (usually late ) she often refuses to leave the car resulting in office staff having to coax her in .

We have tried everything possibly and I'm at the end of my tether she is making me dread every single day.
Outside of school is just as bad she can't have play dates though we still endure them and hope for the best, it always results in tears and tantrums. She doesn't want to go anywhere or do anything.

Our other dds are affected hugely by this the 3 year is terrified of her sister and think nursery is going to be the scariest place on earth. The 6 month old is just scared by her constant outbursts.

What can we do ? Her school are helpful but that doesn't solve issues at home or getting to school
The idea of spending another year dreading every morning gets me so down . Me and dh have issues of our own and the constant stress off dd is destroying our family.
Please someone tell me this will get easier .

EwanWhosearmy Tue 03-Jan-17 16:27:51

Does she see a paed or other specialist you could ask? Has she always been like this or did it start when your baby was born? She sounds a very unhappy little girl.

My 9 yo has ADHD and we have daily struggles with her but she is our only one at home, plus once her meds kick in we can deal with her.

But what you said about the school staff struck a chord. My DD1 who is NT used to have major tantrums in the mornings and I would be dragging her into school and having to get the HT to come and get her. Once she started secondary school it all stopped overnight and it transpired she'd been dreadfully unhappy at primary school. She never told us, and because she had lots of friends I assumed she was OK but if I could turn the clock back that is one thing I wish I'd dealt with. It may be that yours is a completely different problem, but IIWY I would be looking at how she feels about school and considering whether a change would help. After years and years of fighting with mine, at 11 I had a completely different DD.

Cakebytheocean2017 Tue 03-Jan-17 16:38:18

Thanks for replying she's on a waiting list to access some help but it could be up to 34 weeks before we are seen.

I completely forgot to mention in my post but she is at her 3rd school and every time it has been the same . She has no issue making friends but loses them very quickly glad your dd has improved I'm hoping one day she will snap out of it but I know it's unlikely

Cakebytheocean2017 Tue 03-Jan-17 16:42:14

Sorry also forgot she has been like this since around 2 years old (nursery was just as bad as school) so pre other dds

UnbornMortificado Tue 03-Jan-17 16:45:21

I really feel for you. I'm having issues with DD and eye drops, I can't imagine having that fight daily about everything flowers

There is some knowledgeable posters on the children's SN board. You may be able to get better advice there , quite a few posters hide aibu.

imip Tue 03-Jan-17 16:45:23

Our 8 yo dd (ASD) is very much the same. We had general success with a visual timetable, which isn't perfect but has helped. We have 3 other dcs, so I really appreciate how difficult it is in the morning (and every other time of the day, actually).

Everything is still much more difficult when she is really anxious. She's demand avoidant (they don't t diagnose PDA around here). We can't say, 'get up and get dressed', we need to use PDA-type techniques (what would you like to wear, skirt or trousers), always letting her remain in control. flowers

imip Tue 03-Jan-17 16:46:04

Oh yes, get this moved to SN!

bumsexatthebingo Tue 03-Jan-17 17:01:14

Have you considered homeschooling? I believe it's even possible to do around work though I imagine that would be more difficult. I'm seriously considering it for my hf son and I think it's rare that schools are able/willing to provide sufficient support when kids needs aren't academic. You could adapt the curriculum to her interests and she may be more willing to get up and dressed if she's going to be doing stuff that interests her and doesn't have to deal with so much social pressure. There are groups you can meet with for her to socialise as well but they will be smaller and less stressful for her.

allowlsthinkalot Tue 03-Jan-17 17:15:16

We also home ed our 9 year old who has an Aspergers diagnosis. He just couldn't cope with the forced social interaction at school and had great difficulty understanding what was expected of him.

He is able to socialise regularly in a more controlled way now that it isn't forced on him all day every day and he can learn at his own pace. It's reduced the meltdowns he has at
home vastly.

I do know people who work and home educate. I work weekends when dh is home but I'm looking at expanding that soon.

NotTheOtherEmily Tue 03-Jan-17 17:15:17

I can only sympathise. We have very similar issues with our eldest DS (also 8 and in the process of being diagnosed with ASD). We also have 2 younger (NT) children who I feel are really starting to miss out, as I limit play dates (his and theirs), family activities and socialising because I can't really cope with DS1's unpredictable behaviour. It's becoming really isolating for me especially as a SAHM (DH at least has work to escape to). The only thing that I'm trying (not hugely successfully, it has to be said) to do is to maintain some form of social life for me, at least, without the children, just for my own sanity. I'm starting to find it all too demoralising. Wishing you all the best.

DonutParade Tue 03-Jan-17 17:38:51

There's a couple of books some people find helpful. The Explosive Child and What to do When you Worry too much. Apologies if you already know about them. I'd try and make contact with other parents in a similar position locally, just to feel ' normal'.

Cakebytheocean2017 Tue 03-Jan-17 17:40:30

Thanks UnbornMortificado will definitely try sn board .
.imip that sounds like a great tactic will definitely give it a try , thanks .

bumsexatthebingo we have considered it but I don't think it would be doable , dh works full time and is on call most of the time too . I'm stay at home parent but 2 other dds take up a lot of time , especially since everything "normal" ie food shopping visits to park etc has to be down when dd is at school, as bad as it sounds I don't think I would cope without the freedom that school allows

allowlsthinkalot it is something I will give more consideration too especially when dd2 starts nursery.

NotTheOtherEmily thank you, I feel terrible for our middle dd in particular , she is becoming scared of other children as she expects them to act like dd1 . I would love to escape now and then but dd2 and 3 are still bresstfeeding and a lough dd2 would be fine dd3 refuses bottles completely, to be honest though even if I could go out if have no one to go anywhere with I have literally no friends.

HighDataUsage Tue 03-Jan-17 17:49:44

Contact the National autistic society, they run support services and training workshops for parents & professionals. Does your dd have an official diagnosis? If so contact the sen section of your LEA and find out which organisations offers the autism support service for your borough. Mencap privides it for my area so it's worth contacting them anyway.

If you have an official diagnosis, then you can apply for dla benefit which you could use to buy in respite support.

Is your dd at a mainstream school, specialist unit within mainstream or a special school. I ask because the last two options have highly skilled staff who have experience of dealing with asd and other issues. My nephew has autism and is in a specialist unit within a mainstream school. It has made such a huge
difference. He is like a different child.

HighDataUsage Tue 03-Jan-17 17:52:56

posted too early, please feel free to pm me if you want more details re nephew's progress.

OopsDearyMe Tue 03-Jan-17 17:57:24

Why are you forcing her to have play dates, if she is unhappy. There is no reason why she needs those. What are the school doing,there ought to be an inclusion mentor. Often it is a distraction you need, there are brilliant CDs that children on the spectrum can use during the school to home transition. It allows them to block out all the stressors. Have you been given any information on heavy work as this helps too.

Cakebytheocean2017 Tue 03-Jan-17 18:00:09

HighDataUsage we are still in process of a formal diagnosis which is part of our issue without it the school are limited on what they can do .
It's a mainstream school with no unit. She seems to cope well in class and teacher has no concerns with her work. It's just getting there and playtime she struggles with .

Cakebytheocean2017 Tue 03-Jan-17 18:04:06

OopsDearyMe I'm not forcing her to have play dates she asks every single day to have her friend over and I try regularly incase it improves and occasionally if everything goes her way it will be a success. Trust me I hate having her friend over I sit in fear of her kicking off , it's most definitely not for my sake I do it.

OopsDearyMe Tue 03-Jan-17 18:05:05

This is quite confusing,, has she been statemented ? As she should be provided with support based on it. Moving schools has probably, sorry to say made things worse. She needs a routine and you need to allow her to guide you as to where her concerns lie. Is she OK once in school? You will get to know what causes her meltdowns. Listen to what she's saying about why she is distressed. Many aspergers children have heightened sensitivity to senses, so maybe something is too loud or bright, maybe the very hurried and stressed nature of your panic to get her to school is ramping it all up. Speak to the school and ask for help.
I find my daughter who has aspergers does better in school where there is a good set routine and little likelihood of surprises. I don't agree that home schooling is the answer, because she will still need to learn to be in that kind of environment once she goes out to work etc.

OopsDearyMe Tue 03-Jan-17 18:07:10

Its unusual for a child with aspergers to seek out social activities, so I'm surprised she is asking, however if they are traumatic I would hold off on them even ifshe does ask for a while. The may be something in the play date apart from the social interaction that she wants.

Velvetdarkness Tue 03-Jan-17 18:08:37

Following as I'm in the same situation and it sucks.

OopsDearyMe Tue 03-Jan-17 18:09:35

Can I ask where the aspergers idea came from? If she's not been diagnosed.

OopsDearyMe Tue 03-Jan-17 18:10:30

Been through and on the other side now thankfully. But I will try to help with ideas that I tried.

Daisyfrumps Tue 03-Jan-17 18:13:42

Its unusual for a child with aspergers to seek out social activities

It's actually not unusual at all.

bumsexatthebingo Tue 03-Jan-17 18:14:53

What support is set out in her statement. You may well be entitled to dla as you don't need a diagnosis to get it. It should be dependent on need. The school also have a responsibility to meet your child's needs regardless of diagnosis.
I used to feel the same as you about homeschooling oops but I have to disagree. I don't think their is any environment in adult life that is socially as difficult as school. Nasty behaviour from others that kids are often expected to brush off at school would never be tolerated in the workplace for example.

Cakebytheocean2017 Tue 03-Jan-17 18:15:07

OopsDearyMe she has a statement . She has made diagnosis very difficult she refuses to attend and when forced to will say nothing .

Moving school was not taken lightly and wasn't really within our control , very long story but dd1s friend fell out with her and it resulted in the friends mother following me home when I was heavily pregnant issuing death threats etc. Police where involved and it all came to a head when she tried to assault me in school playground a week after I had dd3 I was ushered into school office with dds she followed and called dd a animal as well as some other horrible names r tard being one of them . School pressed charges but refused to do anything else to protect me or dd the "lady" had told her ds and dd to beat up my dd at school. So as much as moving wasn't ideal staying wasn't really an option.

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