Please help. Feeling utterly useless.

[Suzyinwonderland]

Hi,

My DD is nearly 4 and her pre school have recently expressed concerns about her behaviour and lack of social skills. I have posted something similar before, but bare with me.

I always knew deep down that this day would come, but because her behaviour is up and down like a yo-yo, I kept telling myself maybe it's just an immaturity issue as apposed to ASD or anything else.

Her behaviour yesterday was terrible. Not hitting(normal does)but everywhere we took her she was running off and when we did catch her she would SCREAM the place down. It's completely exhausting. She's had a good few days before that. Including at pre school. They even said that when she's good, she's an absolute star, but occasionally something snaps and she wont do anything that she is told to do. They can't do anything with her when she's like this and it is incredibly disruptive.

I was told that they don't have any other children like her at the moment, although they have had and worse in the past.

Health visitor has seen her there and i'm waiting for her to view her at home.

What's next after this? I'm not the strongest of people and i'm being told to expect a long and bumpy ride. I know I have to be strong but i'm feeling constantly anxious and sick. I'm picking her up later and my heart is racing at the thought, incase they say "it's not been a good day". Everytime they say it I just want the ground to swallow me up. I'm fighting back the tears on a daily basis and will quite often lose the battle. I just don't want to lose my sanity.

Can anyone relate? I'm sure you can as i've read so many of your posts and I can't believe how many strong people there are out there.

Any advice please.

Yes, I can definitely relate, my DD is also nearly 4..I am not the strongest at the moment as have a neuro appt today (my DD has slightly different issues today) but I will say it does get slightly easier and you will get fantastic support here.

my DD has slightly different issues I mean, not today

Thank you.:) It definitely does help to know that you're not alone. Can I ask about your DD? Did my post ring true with you?

DD is different as she has more obvious issues. She lost her speech at 2.5 and has obvious SN with some physical issues. At 2.5 though she was at playgroup and we went through the same as you, everyone just started noticing things, it was extremely hard.

You will come to terms with it, if she has any issues. And the DX process is very hard but then your DD will hopefully get the support she needs, if she needs any. Things are much easier now that DD has 1:1 and understanding at nursery and we can work with her, rather than a whole load of uncertainty.

Just look at it as a way to find out if you can get help and support for your DD, rather than something awful being wrong with her. The pre-school sound good and on the ball.

I don't think it always necessarily IS a long and bumpy ride, I have met many people who got their DX really quickly and smoothly actually. So don't predict a long and tortuous ride, as it might not be!!

note I am not saying your DD will lose her speech or anything, our DD is so unusual she has completely puzzled the neurologists.

Can I ask a probably not vey popular question justabout? I know it's different for everyone due to different circumstances, but when you have a child with problems like this, do you ever relax?! I feel like i'm putting my body under so much strain. I've even been getting chest pains frequently recently. Mini panic attacks also and a couple major ones. Oh the joy!!

Thank you for your post by the way. :)

I find counselling really great, only started it recently but wish I had sooner..just one hour a week where I can talk about things, really helps.

Suzy I can completely relate - I'm about 18 months down the line from you. In the beginning it was anxious & worried all the time, around diagnosis it got much worse; I was very depressed & life was awful frankly (I had a brand new baby who never slept & have reflux etc & didn't give myself time to get over the birth). Then it started to get easier - I'm having a totally shit day today & have spent the best part of the morning crying, but most of the time it's manageable & lots of the time I feel pretty happy.

I find the stress rarely comes from ds but from either worrying about the future, uncertainty hard to deal with under the best circumstances - when you're worried sick about your dc it is magnified x10,000. There isn't anything you can do about that, you just have to find some way of dealing with it - I'm getting better, I can sometimes chose not to worry for a while. The other source of stress is dealing with professionals who are well meaning but crap or who might make a difference if you could get them to do their job better. That's where I try to channel my energy.

Suzy IMO (& IME) the only way to get over the all-consuming anxiety is to see the preschool pick-up as a job you do. Separate your emotions from it, and almost pretend that you are another professional that they are talking to.

So you arrive, and brightly say 'How have things been today?' or 'Good day? Bad day?', then simply shelve whatever negative thing they may have to say. Not in a dismissive way, but a 'deal with that later' way. Because your real job, the most important job, is to greet your DD with as much love and enthusiasm as you can muster, no matter how she has been.

I would go in, and do my best to do that, then I would help her to say sorry to any teacher that she had shouted at/pushed/pinched, whatever.

Echo what everyone else has said about it getting easier because you gradually develop the strength. A bit like weight training or preparing for a marathon . And although I've been lucky enough to get counselling for now, I'm expecting some extra ups and downs next year (long story) and a good friend has promised to take me to ask the GP for Prozac if need be.

Though you do develop strength there are still days when I feel like crawling back under the duvet. Cannot be positive all the time.

I gain strength from being here, where I feel people understand me and do not judge me. Other people just don't get it!!! The responsibility of being your kids advocate and protector in a world that misunderstands them is massive and can feel like a heavy burden.

The downs with ASD are very down but there is massive reward when you take a step forward. The look on my ds' face when he loves something is something I hold very very dear and I cling to that image when things are going pear shaped.

Another person saying yes I understand.
The road is very bumpy sometimes.. And it can take a long time.. But.. That time although frustrating allows you to grow the thick skin and also to adapt a bit.. So it does have a silver lining.

Try and just take one day at a time, keep a diary not only for any professionals, but also for yourself.. Sometimes it's good to see a fab day amongst the hard ones and a log of this is useful.

Don't worry about not being strong enough, you will be and you are.. And you really are the best person for the job. ( hard I know but true).

Thanks everyone. Really kind and thought provoking words.

It's been a good day overall. Really good at pre school but then took her swimming and she screamed solid for an hour when it was time to come home. I was a lot calmer than I would normally be. Found the strength from somewhere. :)

Lougle, it's interesting what you say about thinking of it as a job because I have started to try and do that. It's odd how it just happens like that. There's a lot to be said for when you don't have a choice you just have to get on with it.

I am probably going to go to the docs though, because feeling this anxious all the time is going to be no help to my daughter.

Thanks again everyone.

Hi suzy i have just read your post and thought I would also echo what others have said, you will find the stregnth to deal with the difficult stuff, you will have good days and bad [I'm havin a few bad at the moment], but the good ones are great and you learn ways of getting through the bad. One thing I did want to say was try putting a harness or one of those backpacks with a strap on your Dd, its much less stressfull to go out and about when you know they are not going to leg it up the street.
My Dd3 is nearly 8 so I use a backpack with a chest strap and a grab handle on the top because I can't trust her to stop when I say stop.

No sorry justabout don't know how to do links, but I got Dd3's from decathalon it is bigger than the toddler ones but doesn't have a strap, but because the chest strap is fastened I can just grap the bag or handle on the top. They are widely available but some are v expensive, for some ideas try little treckers web site.
hope thats some help

Ineed2, I have never heard of these for older children. Do you mind if I ask exactly what's wrong with your DD. Has anything been officially diognosed? I hear so many stories recently about people not getting a proper diognosis for years and years. Past your daughters age.

Am going out now will post again later.

Dd3 has no diagnosis at present although she has been in the assessment process for 18 months, she has difficulties making friends, sharing, transitions, routines, she is very literal and has been assessed as having higher level language difficulties. She has no danger or stranger awareness.
We started using a backpack with a chest strap when she got too big for reins, I cannot trust her not to run off if she is upset about something and also if we are somewhere busy or dangerous she often doesn't stop when I say stop. Most outdoor shops sell good quality rucsacks with a chest strap and she can also carry her own snack and drink in it. Your DD might still be small enough for a littlelife bag and they come with a clip on strap that parents can hold.
Hope thats some help.

We use a behavioral programme where the dc get a sweetie if they stop after I shout 'stop' in a special loud low voice. Using ds' name is a waste of time, he just doesn't get that it means stop. Doesn't work when he's become totally fixated but is still a great help.

We've gradually faded out the reward, but every now & then do another packet... to make sure stopping stays worth their while! Plus I nick a smartie as well

My biggest problem is that Dd3 is sooo unpridictable, she will stop most of the time now, but she has frightened me that many times that I find it impossible to trust her. It is something we practise on a regular basis. I might try the sweetie trick, the trouble is knowing Dd3 she will then only stop for a sweetie.