My feed
Premium

Please
or
to access all these features

Here are some suggested organisations that offer expert advice on special needs.

SN children

very fed up..........all gets a bit much

20 replies

anniebear · 18/08/2004 21:58

I am on a downer!

Although my Daughter Ellie (nearly 3)is doing very well she is extremely hard work and it is all becoming a bit too much.

Maybe it is worse at the moment as it is the School Holidays, when September comes she will be doing four half days at pre school.

She has the most awful tantrums which include hitting her face hard, pinching her neck and banging her chin.

It is getting embarrassing when we are out and I can only see it getting worse, as I am beginning to think that I can't go to certain places as people will be starting to look.

She doesn't look like she has special needs to anyone unless they sat and watched her and how she played etc I think this is so hard as I know people don't understand why she does the things she does.

Like we were in a soft play area the other day and a baby had a dummy. Ellie just went up to it and I knew she would make a grab for it!!! I got her and told her it was the babies but she doesn't understand and starts to hit her face (her own face) You know the woman is thinking "what is that child behaving like that for"

She has a twin Sister who wouldn't do anything like that as she has no problems, so I know it will look a bit odd to others.

I went to a friends today and she was so bad. Tantrum after tantrum. I don't know how I sat there without crying. She banged her chin that hard her mouth all bled.

I feel at a loss as what to do with her. The HV called round the other day and is calling again next week, as I rung her and said that I was really struggling with the girls.

Everyone just says it's frustration because of her age and her delayed development.

On top of it all, Grace (her twin) is very hard work. She can be so good with Ellie then can just bite or pinch her for nothing.

I will be honest with you all when I say sometimes I feel like getting them both and putting them outside and shutting the door.

I do love them both but it has just been continuous for three years. Hard enough having twins, then from 8 months (those of you who read my other posts will know Ellie had Meningitis at 8 months old) she was so ill then she has seemed to get nearly every condition associated with Meningitis and it just doesn't seem to stop.

I then take it all out on my poor Husband!!

I am sorry to go on, I feel bad moaning when a lot of you must be going through the same upsets. But then I know you will all understand.

Thanks for listening, sorry for moaning

xxxxx

OP posts:
Report
Davros · 18/08/2004 22:04

You need some help! There should be behavioural support and/or psychologist attached to CDC plus talk to Soc Svs. They're not scary but should give you a needs assessment and get you some help. Its not on! HV should be sorting all this out, suppose she's the usual chocolate teapot.

Report
coppertop · 18/08/2004 22:04

Hugs to you, Anniebear. Mumsnet is the place where most of us come when we're having a particularly bad time. I truly understand the feeling of wanting to just shut them outside and leave them to it. The other variation of this is wanting to shut THEM inside while you run away and leave them to it.

Do you get any outside help or support? Is there anyone who could take over for a couple of hours while you have a break?

Lots of sympathy. xxx

Report
blossomhill · 18/08/2004 22:09

Hi Anniebear

Know exactly how you are feeling. Felt exactly the same when my dd was 3 but things are so much better know (she is 5 next week!!). Once the understanding comes a lot of the behaviour becomes easier to deal with. It is so hard and can be very upsetting but I promise things WILL get easier, unfortunately not overnight but it WILL happen.
A turning point for me and dd was when she went to school full-time(sounds awful doesn't it?) Dd just seemed so much easier to deal with and I was refreshed from the break!
Please keep posting as we all know how you are feelingxxx

Report
Chocol8 · 18/08/2004 22:11

Ah, Anniebear - I am sorry to hear you are having to go through this .

I think you posted just before me. I am going through the same thing at the mo and needed some support and I know this is the best place to get it - we all understand - and that makes MN so great. I don't have any advice really except that hopefully you can get some help or support and here is definitely the best place to find out about it. Good luck and thinking of you. x

Report
heartinthecountry · 18/08/2004 22:14

hugs anniebear {{ {}}} I am sure there isn't a mum out there who hasn't felt like throwing the towel in at some point. And remember that you and your family have had a particularly hard time of it.

Do you get any respite? I'm guessing your dd's might go to nursery but that still leaves the holidays. I know respite provision varies from area to area and in some it is easier to get than in others but might be worth asking your HV. I know that wouldn't solve your problems but it would at least give you a break from it all.

Do you get any other support with Ellie? Any therapists who could perhaps help with the behavioural issues? Sorry, I'm no help myself on that as have no experience (yet!).

Sorry, I'm not really much help but I wanted you to know that you are not alone and you can always have a moan on here .

Report
anniebear · 18/08/2004 22:14

don't think we have been referred to behavioural support and/or psychologist because of her age. She is at the 'tantrum' age anyway. I suppose are waiting till she is a bit older.
She has global delay and may get frustrated not being able to voice things properly.

The HV is actually very good. She has worked at Alder Hey before she was a HV so she knows quite a bit.

A bit of my fault I suppose, not too good at asking for help!

I do have support. DH is great, I have some days out with my Sister and he has the girls all day. Problem is...I have to come back!

My Mum is great but you don't like to ask too much, she is getting on a little, ok not too old (just in case she reads!!!!!!!!!!!!!!)but I don't like to ask for help all the time. I have two Sisters, one helps but works full time, one doesn't work but doesn't seem to want to help too much.

Thanks for your replies. I really wish I had come across you all a lot lot sooner.

You are all really nice and helpful (don't get big headed now!!!!!!!!)

Thanks

xxxxxxxxx

OP posts:
Report
dottee · 18/08/2004 22:19

Ditto what Davros is saying. Are you able to get a break when you can defuse?

We had a horrible Christmas with dd having mega tantrums which seemed to continue well into this year. I was at breaking point but now things are coming together. Dd has calmed down a little (they do go through phases) and my GP has fast tracked me to Social Services. So with the guidance of Davros and her wonderful wisdom, we are now looking towards Direct Payments which will allow me to pay for someone to come out with us (so if dd decides to have a paddy, I can walk away for a couple of minutes - normally that works).

What sort of pre-school will Ellie be going to? Will you have contact with an Ed. or Clinical Psychologist?

My dd is 12 and goes to a school for children with SLD. I have a very good relationship with the school (I'm a governor there) and the staff have advised me on lifting and handling, positive behaviour management etc. Are you in a position where you can do this? If the school can't help, then the CDC at the hospital can do this.

Have you seen Ellie's paed. recently? That may be a good port of call.

Where do you live?

Report
dottee · 18/08/2004 22:22

You will be able to get access to a clinical psych. via Ellie's paed consultant. Something else - is she on anti-convulsant drugs for Epilepsy? Have you had a recent EEG?

My dd has CP with epilepsy.

Report
Davros · 18/08/2004 22:28

Ha ha, Dottee is really me posting with another name.... not really! Don't accept that BS that she's too young for X or Y service, it all depends on whether she (and the rest of you) need it. I think a visit to the Paed is a good idea and DO get on to Soc Svs one way or another. We'll all help with any advice or support.

Report
anniebear · 19/08/2004 06:54

Ellie is on Nitrazapam , but only a small dose, which I didn't think would have an effect on her. But maybe it does (one side effect we were glad of when we read it was sleepiness, but no, had no effect on her that way!!!!!!!!)

We haven't had an eeg done for a while, the last one showed that there was no seizure activity, just a small area showed up at the front right of the brain where she suffered brain damage. She won't have another one now until seizures return (we pray that they don't)

Feel like she is a time bomb waiting to go off. When she moves funnily or is very still I worry she is having a seizure, then she can scream so much I worry that I shunt has blocked. Not that I am a nervous wreck or anything!!!

What would a social services do? Sombody has mentioned to me ages ago about a social worker, but I didn't feel the need for anyone and to be honest didn't know what they would do.

I just worry that everyone is just saying it is frustration but when she gets bigger then are going to call it another name and we will have another diagnosis to go along with the others.

Can I just say that she is fantastic for everyone else!! Everybody that meets her wants to take her home with them (and yes I do say "go on then"!!!)

We choose to put her into a Special School and she goes to the Early Years there. They love her!!

I have spoken to the Deputy Head about her behaviour and she gave some advice and said to come back if it doesn't work. So I shall go and talk to her when the Schools reopen
Thanks again so much for all your advice and support

xxxx

OP posts:
Report
anniebear · 19/08/2004 08:44

Forgot to add,we live on the Wirral, Merseyside.

OP posts:
Report
heartinthecountry · 19/08/2004 09:00

anniebear - I was really reluctant to contact SS (and my mum used to be a social worker!) as I wasn't sure I needed them. I think you tend to think that they are only for families in crisis or cases of abuse.
But there are reasons you should contact them. Firstly, they can put Ellie on the disability register. This doesn't mean much in itself but it is apparently used to plan services in the area so it is important that they know how many children living in a particular place have disabilities . (though i am a bit sceptical about this - think it probably only works in theory!). It may also be referred to by other services, e.g mobility if you apply for a blue badge.

Secondly and more importantly, they can help in all sorts of ways. I think it really depends on where you live. The main thing our ss can provide is respite care, either through their respite service or direct payments. There is another thread where davros explained about direct payments which I will find if you are interested. I know others, Fio2 I think, have got things like high chairs through their ss.

Basically, I don't think it can hurt to contact them and it could help. We had our first visit from someone from the children's disability team last week. She was a very nice lady. Just took some notes about dd and told me the kinds of things they could help with. It will now be up to me if I want to contact them again and ask them to assess us properly for anything. It doesn't mean you suddenly have social services on your case (far from it, they are far too under-resourced!).

In this area they also refer to other services such as OT/Physio/SALT. Maybe they could help with getting some support for behavioural issues?

Report
Flip · 19/08/2004 09:03

Anniebear, I understand your embarassment when Ellie start's having a tantrum while you are out. But something to keep in mind is what ds1's first phycologist said to me. He asked me how I would feel if I saw someone elses child really playing up and shouting and screaming. Of course I would have empathy for the mother. He made it easy to see from that, that other people have empathy for me when ds1 is totally out of control.

Ellie isn't to young to be seen by a phycologist because ds1 was only 2.5 when he first went. They don't work with the children, they work with the parent's and help you learn how to cope and how to diffuse. I'm still in training because ds1 has never been a typical child.

ASK for help. Be pushy and tell people exactly how tiring it is and emotionally draining. They know you love your children or else you wouldn't be asking for help. They worry more about people who don't ask and struggle alone.

We're all here for you Anniebear. As yet ds1 has no diagnosis but I still concider him to be special needs because he's high functioning. Keep posting, I'm not that far away from you, Bolton in Manchester.

Report
dottee · 19/08/2004 11:34

Annie - my dd is on epilim. The last EEG she had was about 2 years ago and it monitored whether the epiform activity had increased. In any case, she tends to have her dosage increased periodically because she is gaining weight and body masse. So it might be advisable to contact the consultant if Ellie's behaviour has worsened. I think I read in another thread tha she is able to communicate. Has she mentioned headaches/dizziness/confusion?

When my dd started having the tantrums from hell, I contacted our paed. cons. She said it's AJ's age (i.e. puberty - if you think Ellie's bad now ... just wait for puberty ) but she has referred us to a clinical Psych.

I approached the GP. I asked for a referral to Social Services (the Children with Disabilities team is there to HELP everyone - don't be put off contacting them). My CWDT worker is currently assessing us with a view to Direct Payments. After much thought, I am looking to employ through DPs an 'enabler' to help me with AJ's paddies when we are out.

Also the CWDT worker may be able to put you in touch with local contact groups. I've just 'googled' and found you this link .

Also, have you come across national organisations such as contact a family?

Report
dottee · 19/08/2004 11:36

And something else - does Ellie's school have a parent/carer support group? You can find out loads of information (and support) from other parent/carers - they have been invaluable to me.

Report
Eulalia · 19/08/2004 14:51

Moan away - that's what we are here for. 3 is a difficult age. My son (autistic and developmentally delayed) didn't have the terrible twos but saved it till he was 3 and it was a hard time but he started to get better as he reached 4. Yes it must be hard work with two of them. I am a twin and I know it's difficult being one never mind when you have all the added problems there are in your family.

My son jumped on top of a toddler in a ball pit the other day - I had a very red face. Fortunately most people are understanding.

Hope you are having a better day today.

Report
anniebear · 19/08/2004 17:17

Thanks for your replies, you are all very helpful.

Spoke to the Neuro Surgeon today and he said to get our consultant to refer us to be seen by an educational physc or similar.

The HV is calling again on Tuesday so I will also mention it to her and also about Social Services.

Will let you know how I get on

Thanks again

xxxx

OP posts:
Report
Thomcat · 19/08/2004 18:14

Annie, just rushing on here to rush off again but saw your subject heading and your post and couldn't not respond. Just wanted to send you a massive virtual hug and tell you I feel for you really. It must be so hard to have twins without one of them having SN. Lots of love to you, sorry i can't do or say more. TC x

Report
anniebear · 19/08/2004 20:20

Thanks Tomcat

Just hope now we can get things moving and have some more help

OP posts:
Report
anniebear · 19/08/2004 20:21

sorry...Thomcat!!!

OP posts:
Report
Please create an account

To comment on this thread you need to create a Mumsnet account.