2.5 year old daughter with asd rossendale

We live in the south west between Bristol and Bath. Yet to find anyone to share my experiences with that is local. It seems rare to get formal diagnosis so young, which I think makes us feel even more alone.

Hi PoP,

I take no happiness in your struggle but it is reassuring to know that there are parents sharing our difficult experience that are out there. It's such an unsettling time going through this and often I wonder where we find the energy to keep fighting. I feel bitter that it is such a fight.

What area do you live in?

Hi

So new here I only created my profile 5 minutes ago... so hoping I am posting this in the right place...

Ccollier - I could have written your initial post. I have 2yr8month twins. My son was diagnosed last weekend. I knew something was wrong and got soooo frustrated by the slow wheels of the NHS that we paid for a private diagnosis in the hope that people would finally sit up and take notice. The private Dr said that he wouldn't even be able to put our son in the mild-moderate ballpark with ASD, that his symptoms were marked and wide-ranging. Everything I read says early intervention... but I have been fighting so long to get anything from anyone and have been turned away so many times... even told that '4 years is early intervention'. So what do they expect us to do for the next year and a half.... sit and watch our children struggle on an hour to hour basis. 

Finding resources that I don't have to pay a fortune for has been a fruitless search. Do let us know if you find anything!

PoP

Hi, I hope they can give you some useful support.

I can imagine the lack of speech is very hard as a mum. We are lucky my daughter has a lot of words and says many complicaed sentences but its all repeated from books or songs, she doesn't have any spontaneous speech. People keep telling me it's a good starting point though. Her main issues are social. When we go anywhere where there are other children she completely shuts down. Her auntie who she sees every week has nevet heard her speak, but ay home she chatters none stop. At nursery she is very isolated and does not mix in the group at all. 

I think asd is so difficult to cone to terms with as a parent because you are so uncertain of the future. I don't know any other medical conditions where the outcome has such huge variations.  I think we tend to expect the worse, when I guess we should just be enjoying the present.

C x

Ollie's speech is pretty much none.. He says sounds that "sound" like words but its not actual clear words. His newest sound is being ogre and he also says car but he's meaning star. (he's learnt it off busy beavers) 

I'd love him to say love you mummy. 

I will email Portage on Monday see what can happen 

H x

Basically portage work to whatever targets you want to achieve.  So for us its things like trying to get my daughter to focus on playing with a toy for a few minutes because her attention is so poor. They've also been teaching her how to say "I want.... " because her language is poor and she can't tell us basic stuff likes she's thirsty or hungry. If you speak to your local council they'll send you a referral form which is really short, not time consuming.

I found out I was pregnant just when we discover my first daughter had difficulties.  Had I have known sooner I wouldn't have had another child. Not because I don't love my first just because I wish I had more time to spend with her to help her develop. It's also really sad to watch her totally ignore her baby sister,  I hope in time this will change. I worry that my new daughter will also be affected by autism so that's taking some of the enjoyment out of it at the mo.

Hi , 

I've just had a look at the portage website and don't understand it :-/ 

Ollie doesn't understand instructions either. You can tell him not to headbutt because he's going to hurt himself but he doesn't understand and carries on :( 

Ollie hasn't had a nap today so I can foresee him having a night terror this evening, I do hope he doesn't though...

I really feel for you! Don't think I coul cope being pregnant or having a newborn with Ollie. I think he willmost definitely be our last :( 

H x

It is exhausting. I'm on maternity leave at the moment so I'm looking after my daughter much more than when I'm at work and it's made me realise how much she doesn't follow instructions etc. It's also allowed me more time to take her to places such a soft play centres but seeing her amongst other children her age makes her differences stand out a mile. Don't wait for a diagnosis or you'll wear yourself out. I have found the Portage service which is run nationally by local councils fantastic. You don't need a diagnosis and you can self refer. They are a great support and a key into getting other support aswell. I'd highly reccommend getting in touch with them. They come to our house once a week and play with my daughter working on targets such as turn taking and attention.

Hi, 

Right where do I start? :-/ 

Walking on tip toes, sleep pattern, fussy eating, screaming round shops, hates having his hair cut, night terrors, sensitivity to nappy changes, not liking to be wrapped in a towel to dry, non verbal, unresponsive to name, doesn't listen to instructions, unaware of dangers, loves to be thrown around, hates being cuddled if hurt, runs around in circles, hates to be in groups, prefers to play on his own, jerky movements with hands, arms and legs, funny noises with his mouth...

I have a feeling I've missed a few things, But a few people spoke to me about Autism and when I looked into it I found more and more things that Ollie does in the list of symptoms. Which is why I went to my doctor with a list of everything Ollie does and she kept the list and referred him straight away. She said it's highly likely that Ollie is Autistic but we just need a diagnosis so I can get help. 

Someone mentioned respite care?? The thought of handing my boy over to someone else to deal with it all scares me and upsets me.. I tend to have Ollie all the time and frankly I'm exhausted! mentally, physically and emotionally :'( 

H x

i'm sure they will contact you back. I think a lot of groups aren't as active during school holidays so might taken a bit longer. I'd always be happy to meet. I'm not sure about private messaging I haven't been registered for that long. I'll have a look around the site and see if I can find it. 

Do you mind me asking, what symptoms your son showed to make you seek a GP review? 

C x

Hi, 

I googled where Rossendale is :-/ it said about 2 1/2hrs drive.. I'm not a driver either so might take me some time to walk lol. I should be starting driving lessons soon so maybe a meet up isn't off the cards lol.

I contacted a local group for autistic children not very far from me and they haven't contacted me back at all which is somewhat dishearting :( 

I don't know if this group has private message so we can inbox or pass email addresses/numbers on to each other??

H x

Hi,

leicestershire is a very long way from us, that's a shame. It's so difficult to find other families with children with an ASD the same age as ours. I know it's devastating when you first have that realisation that your child has autism. I still cry some nights when she's gone to bed if she's had a particulary tough day. The crying episodes are getting fewer and farther between these days though. For the last year I saw no change in my daughter and was starting to lose hope that she would ever develop further, but in the past month she's shown so real signs of improvement. We celebrate every little advance she takes and I'm so proud of her every single day for just getting through the day. 

I think support amongst parents is the key to making it through this experience. I've found a few support groups locally and I'm planning on attending the next one. I questioned if I should go since we haven't got a firm diagnosis but I was reassured thatt I would be more than welcome. Maybe you could see if you have a NAS centre locally and find support from a group like this.

I'm always happy to chat.

C x

Hi, 

Sorry I forgot to mention that I'm leicestershire. Not sure how far that is from Rossendale though... :-/ 

We haven't had a diagnosis yet either we are only at the beginning of the process. Haven't seen anyone other than the doctor who referred us to a Paed.

H x

Hi H,

Do you live in Rossendale? We don't have a confirmed diagnosis but we are quite a way on in the assessment process and some of the professionals we are involved with have referred to my daughter as autistic several times. I'm not sure they are aware that we haven't yet got a firm diagnosis.  We knew from 18 months things weren't right but still a year later I still struggle to come to terms with it.

I have a very supportive family but its getting hard to go out with friends because their children, who are a similar age to my daughter, are noticing that she's different and making comments such as "why doesn't she talk". It breaks my heart, so that's why I posted to make new friendships with parents that understand. 

Has your GP referred you on for further assessments?

Ccollier

Hi there Ccollier, My son is the same age as your daughter. 

We haven't had a diagnosis yet but our doctor says its highly likely he is Autistic. 

Struggling to come to terms with it to be honest :( I'm sure we will get there one day (I hope) 

Happy to talk to you any time. I don't know anyone personally with a child who has ASD. So I'm totally new to this all..

H x

Hi, thank you for your response amd efforts in searching for information . We have fought hard to get all the help we can for our daughter.  We both feel wiped out and just need some parent friends in similar situations to let off steam with. 

It frustrates me that all the evidence says early intervention is the key but support just isn't easily accessible for the youngsters. 

Its not going to be easy to find support services for someone so young. Its remarkable that you have achieved a diagnosis already.

Use the search services function at the bottom-right of the homepage here

Also here I results of a preliminary search I executed on your behalf useing the terms "services" and "rossendale". You might refine your search by being more specific to the type of support and more general in location.

Also see http://www.autism.org.uk/lancashire

Might I say that I consider it strongly laudable that you are so proactive. I am confident that with perseverance you will give her a fighting chance of happyness and sucess.