Autistic daughter, what do I do now?

blue_monkey_2

simbalou wrote: »

Thanks for replies, I always feel alone when I deal with stuff like this. I never feel like anyone else is going through it.

Have had a phonecall from dwp this morning to verify 2 questions on the form, I'm pretty sure I said what I had already written down on the application but I started doubting myself as soon as I put the phone down and was worried they'd think I was a fraud if I didn't answer exactly the same.

Also had a visit from the Health visitor about dd picking her nails and skin off her fingers and she put my mind at rest but she did mention dd school. She also said that any child that is diagnosed ASD will need some sort of extra support at school and was pretty mad that my daughters school seems to be lacking in that department. I would love to swap schools but my son has different difficulties and I know the school is right for him but I don't know how I would logistically manage with my kids at 2 different schools.

DWP said I should hear from them in the next few days regarding a decision, they only wrote to my GP because the consultants report was late in arriving. So, fingers crossed. Thanks again for the replies, I'll post the decision on here so anyone else in my position can see.

OK, I just wanted to pick this bit out, not all children diagnosed with and ASD will need additional support in school so the HV was incorrect to tell you this. She has fed into your worries about your DD getting the right help and so they have escalated and worried you. Is this why you think your DD should be getting the additional help?

As I say, as a mum who was in your exact shoes 2 years ago I can totally understand where you are coming and the fears you have for the future - the HV has done nothing to alleviate these fears but actually made you feel you are not getting what your DD needs and this was wrong of her, in 2 years time she will not have anything to do with nyou and pass you over to the school health advisor anyway. My HV did not even know what Aspergers was!! However, 2 years on I realise that my son does not need 1:1, there does however need to be more understanding about his condition within the school and all the teachers. I also realise that this is not going to happen and some teachers are wearing blinkers and you'll never change them.

Just also wanted to add that DS was 3, the same age as your DD, when first diagnosed but is 5 now.

simbalou

Many thanks for your reply blue_monkey, it's actually made me chill out a little. I felt like I had to do everything in my power to help my daughter. Looking at the wider picture, at the moment dd is happy and content as possible in the routine she has now. The school, although not perfect, seems to be fine at the moment. If anything changes I'll decide what to do then but for now I'm going to just keep an eye on everything.

ladybirdh2

you need time to come to terms with this its a big shock and your still in the shock stage.

I have a son and daughter who are both autistic, my son is now 5 and he attends a special school. It has been the absolute making of him, up to 6 months ago he only spoke in his own language now he comes home and tells me all that he has done at school.

I also have learnt that autisim is not a condition but a way of life and once you learn sertain strageries of how deal with situations the positve out weighs the negative.

Get all the support you can, ask questions if you don't understand and massive hugs to you xxxxxxxxxxxx

moemum

sad_dog_lady wrote: »

my sonwas non verbal till 6, he has asd and ocd and learning delay, he is now 18 and young animator of the year 2004 had a poem published in young minds book of poems 2005 and has a painting on display at the royal albert hall after winning a comp against all normal and some special people of the uk, he has done two years of college and gets lots of support, when i think back to him age 3 when his diagnosis came in, and what he is now achieving, i still am amazed, fight for s.e.n education at specialist schools and you will not be sorry, my son is very chatty and people now dont realise that there is much wrong excccept he wears gloves. dont dispair just argue for best provisions possible and aim for the stars. huggs

Wow!!! you must be so proud of him:)
Congratulations to both of you for achieving so much.x
You make me feel more positive about my daughters futures, thank you.

blue_monkey_2

simbalou wrote: »

Many thanks for your reply blue_monkey, it's actually made me chill out a little. I felt like I had to do everything in my power to help my daughter. Looking at the wider picture, at the moment dd is happy and content as possible in the routine she has now. The school, although not perfect, seems to be fine at the moment. If anything changes I'll decide what to do then but for now I'm going to just keep an eye on everything.

Simba,

You really are only human and the way you are reacting is one of normality I promise you - I still feel the same way now and some days it feels that everything is a fight, but you will eventually see that some things are good. I was worried I might offend you with my posting but I thought it would be best to give you an honest account of what it feels like to go from someone who has a child that is just a bit odd, seems to hate other kids and cannot do as they are told to being told your child has a 'disability'. While your child has not changed it feels like 'something' has and I think (for me anyway) you feel responsible and want to make sure you can make things better. Only it might not need to be made better but it is hard to see this. Does that make sense?

You WILL find your own stratagies to deal with things and if your daughters school is making her happy then that is all you need her to be right now. She will adapt and if the school are open to helping her fit in - even without additional help - then this is really important and something you should cling to.

At the moment my son's teacher (who is a P/t teacher) refuses to believe there is anything wrong with him. She accompanied us to the CDC (Child developement centre) to see the doctor and proceeded to tell the doctor this. She also told the Speech Therapist this.

Yesterday I got a letter noting that the doc had told mum and the teacher that DS had Autism (she didn't!!) however, I had to outline the main problems that it was causing us so she could help us deal with them. It is very frustrating, we do have our own statagies but without a confirmed diagnosis we cannot access the other help he needs (autism Advisory Service for example). But I will keep on fighting, the S&L therapist picked up on something he did within 5 minutes of being with him, something the teacher had never picked up. So I do feel that we will get that magic piece of paper that gives us access to the services we need for him.

Sometimes it does seem the fight never ends so you need to pick the battles as you cannot win them all and sometimes you feel that you cannot go on anymore. So pick the one that is important for today and focus on that otherwise everything get's very overwhelming. So if your DD is happy in school then let her carry on going - but keep an eye on how she is, if she cannot cope or if the school are having problems it is then time to have a rethink and think about the statement which you can do without the schools help - you do not even have to tell them. But my son has ADHD and Autism and is in the top 1/3 of the class. He can do most things quite competantly but he struggles socially and does not like any form of change. Today they had science day and he has been horrendous and spent a lot of time trying to get into the cupboard to hide, the problem you will have if your DD is the same is that if she has done it already (spellings for example) then why on earth should she have to do them again!! She will have a point. But you will find your own way of dealing with these things.

There are quite a few threads running on this subject (search ASD) and you'll find another support thread we all go onto and have a vent on, heck we all need it and it really helps, so come and say hello. There are a few of us on there and we all have a story to tell - good and bad times - but you are on the start of a new journey and you should not feel bad for pushing for everything you can. But sometimes you need to take a step back and make sure that your DD is really unhappy or affected by things YOU want changing, and if not then let her be and grit your teeth and bear it. There will be many, many times this happens I can promise.

Call your local Parent Partnership or Disbaled Children Team at the County Council and see if they can give you details of a support group locally (ours even has a free creche for little ones), it is hard to go intially but you soon realise that everyone there is the same as you are so you can talk about stuff and have a whinge and you do not have to feel you are laying it at the feet of others who really do not understand. Good luck with everything.

spendtoomuch

Hi glad you got the DLA sorted. My son was diagnosed with Aspergers at nearly 15 after 12 years of visting GP crying for help. He finally got help because he weighed 5 stone and looked emaciated. I moved his school to a hospital school for 10 months and he passed some GCSEs and now at the age of 17 is doing an IT apprenticeship, has a lovely girlfriend and is enjoying his life. We were turned down for DLA the first time we applied but we appealed it and won. The advisers who make the decisions are not medically qualified and it really is a lottery.

kegg_2

GlasweJen wrote: »

Kids with special needs don't go in taxis themselves, the council will pay for an escort who has had a disclosure/crb check and who is usually the opposite sex of the driver (so a female driver will have a male escort and vice versa). Also kids are usually doubled or tripled up for the journey so your daughter may end up in the car with the driver, the escort and 2 other kids who are going to the same school.

my son is in a sen school and between y4 and y6 he went in a taxi with just a driver who was crb checked. Ususally it was the same driver but sometimes not.
When he started in secondary he started taking the school bus which has a driver and an excort of the same sex

GlasweJen

that shouldn't happen Kegg, are you in scotland? i work as an escort for my parents who both do special needs school contracts and my mum has only ever had 2 contracts that didn't need an escort in the 12 years she's done this, one was a 14 year old girl who had no learning difficulties but who needed a taxi to school because she was a constant truanter, the other is an 8 year old boy with cerebal palsy and epilepsy whos mum goes in place of an escort.Mums escorts are usually male but she has had female escorts before. My dad has been doing contracts longer and he's never had a contract without an escort and they've always been female.

ManxAvenger

Just quickly, toilet issues - my asd ds needed more fibre to 'help' him. If it is a toilet training issue - then please don't stress either of you out over it.

I think every one gets turned for DLA on first application, so keep trying. Even if the money is not needed now, you will probably be thankful for it when having to replace clothing, beds etc!!

I know how you feel :A

debtmess

im glad i have found this thread my ds was diagnosed 17th june this year a month to the day before his 3rd birthday

it came as a huge shock even though there had been concerns around his 2nd birthday as he had no speech at all, whcih then meant a assesment at specch theropy which threw up more concerns, a 1st appointment with the peads in december 08 meant deep down i knew

im still now trying to get my head round understanding my little boy, he does have more speech now but were now waiting to hear more about statotory assesment which the sen pre school teacher is going to set the balll rolling with

has anyone any experance of it all ?