just wanted to say hi ( mummy to asd child)

[sethsmummy]

Hi all,

We have just found out our 3 year old is autistic. We are just starting the proceases of getting an official diagnosis now. Seth has always had health proffesionals involved with him from birth.. he was small and had reflux. After that stopped we still had to see the health visitor all the time and he had a few sogs reviews done showing how behind he is. Hes seen salt and also different peads due to his slow growth and headbutting problems we had when he was younger.
I am very glad that we finally have an answer and I can now tell anybody who says my son is just lazy to bog off. but I am also angry.... Im angry because for almost 4 years we have been worrying about him....... and not 1 single proffesional involved with him took us seriously or picked up on the autism! Im angry at myself for shouting at him for behaviour I now know he cant help.
It took an education visitor all of 30 minutes to talk about my son and tell me he is autistic... and a 2nd meeting of 1 hour playing with him for her to confirm her diagnosis. So why did no one else pick up on it. There has been around 8 people before her see him regularly and not figure it out. So now we are in the process of doing the required visits with the e.v and salt and the nursery to get statements together and sent off to get the official diagnosis of autism.
And now also im a little overwhelmed... theres so much advice ot there and so many differet people tellig us to do things different ways?! Do I really need to change to what they say or just keep going with the things I know work for him. Al this new information, my brains on overload. Also people asking why wee not already got a claim started for disability livig allowance since you dont need the official diagnosis.... hell I didnt even know you could claim dla for autism.

3 weeks of having an answer and I just feel..... meh.... im happy we are finally getting answers but just so darn confused and angry at the same time. Im sorry this has turned into a pointless rant and load of drivvle lol. I just needed to get it out somewhere to people who might understand how I am feeling right now. Thank you to anyone whos managed to get to the end of this!

 

[Lucy139]

We are just in the same process the statement is finally all together after a year of waiting! And is under review now, you can't claim dla untill you have an "official diagnosis" but they do back date it too a certain date which I can't remember weather it's the date the statement was started or the date of first diagnosis but anyway, my son is 5 in October and my god it has been nothing but hassle with doctors, health visitors, paed's, occupational therapists.... Blah blah blah you name it we've seen them. Enless amounts of hearing tests. They kept blaming his hearing for him being non vocal untill 3.5years old...

Stick with what you are doing, a mother always knows there child best!!! I've been given some really crappy advise over the last 3.5 years (this has been on going since 18months) I can honestly say the only routine that works is the one I've made him, the medical staff are not with him all the time and giving head rubs in the middle of shopping and rough hand rubs does not work realistically in the real world lol!!! If anything it makes him more frustrated and anxious!!!

Good luck with everything sorry this reply went on so long....
Ps- I was very angry too after so many people had missed the signs and it took 1 person to notice for everyone else to say oh yes he has autism!!! Xxx

 

[sethsmummy]

Thank you so much for your reply! Im glad im not along in feeling angry, its just beyond me how so many people can miss it, Seth from birth has seen a peadiatric who specialises in reflux, 4 health visitors, a development assesor (lady who does his sogs reviews), numerous gps, another peadiatric specialist, has had an mri scan done, salt (since just before he was 2) and now the education visitor and also another group of people whos aim is to help children learn to develop.

on the dla side... iv been looking it up and found this ( https://www.autism.org.uk/living-wi...ving-allowance/dla-for-children-under-16.aspx)

DLA is a non-diagnosis specific benefit, it is awarded based on mobility and care needs not based on diagnosis, so having a diagnosis of an autism spectrum disorder will not automatically lead to an award. However, many children on the autism spectrum do qualify for DLA. You can make a claim for DLA before the child has the formal diagnosis.

also found a post on netmums where a few ladies said they were granted without the offical diagnosis as long as they had copies of the statements from salt, e.v and nursery with it. xx

 

[Lucy139]

It just feels endless doesn't it, we have another hospital appointment next week and hopefully the last for awhile untill this statement is done!! Thank you for that information I'm going to contact my local job centre tomorrow and discuss with them about dla payments, I'm currently out of work as no one can "handle" Leo. He starts school next week but if its anything like when he settled into nursery could take months....

I hope everything works out for you and you finally get all the answers you deserve it's so hard not knowing whats going on and people speculating a diagnosis but not giving straight answers!! Xx

 

[sethsmummy]

It does! Ill be honest im kind of bummed that were going to have proffesionals sticking their nose in our life for quite a few years now, but if they are going to help and work with us and not patronise and demonise us then it will be ok.

Thankfully so far im getting straight answers, hopefully that wont change.

Im glad I could help you in some way hun. Thankfully my little guy is settled well into nursery and will be being held back a year so I dont need to worry about primary school just yet xx

 

[AP]

The best place to go for a guide to DLA and autism is Cerebra. Follow that by the letter https://www.cerebra.org.uk/english/getinformation/publications/pages/dlaguide.aspx

Indeed, keep every report and letter you get from departments as these should be photocopied and thrown in with the claim.

 

[JASMAK]

My daughter has asd. Diagnosed at age 2. She is now 8. Its a struggle everyday. But, we learn to be tough. Hang in there

 

[sethsmummy]

thanks ladies I greatly appreciate all these responses.

can I ask.. does anybody else notice their child gets ill a lot? Seth is ALWAYS catching whatever is going around and seems to end up with diorrhea all the time (which i put down to the fact he wont eat a varied amount of food). im debating taking him to the gp to see if theres anything behind it but i found on google that some autistic children do tend to get ill a lot. Do any of you have any experience of this (im still booking him into the gp as i want it on record that iv went to see about it incase there is anything else there) xx

 

[JASMAK]

Yes! Just last year I learned those with asd have health issues. My daughter has been sickly literally since day 1, and hospitalized more times than I can count on two hands!

 

[sethsmummy]

Yes! Just last year I learned those with asd have health issues. My daughter has been sickly literally since day 1, and hospitalized more times than I can count on two hands!

thank you so much! My little guy is off nursery soo much due to catching every damn thing that goes around. touch wood hes only been hospitalized once for a week and was admitted to peads for a few hours not so long ago after having gastroenteritis for 3 weeks running, had to call an ambulance out as he was hallucinating due to temperature. he is constantly getting diarrhea which means an automatic 48 hours off of nursery and im sick to death of the dirty looks off the manager all the time because hes off a lot.

Im going to get him booked in next week to see if we can get a refferal in for him to see a pead for a check up just incase hes a weak immune system or anything like that xx

 

[Kathleen93]

HiMy boy is 5 and is in a normal school GrR.I start noticing he has n speech problem at age 2.I start giving multivitamin,at the time I have little knowledge of Asperger’s,autism,speech and language disorders.I did see n GP and tells me boys stimulate later then girls.So I start doing alot of research learning what to look out for.I learn myself of learning him the best I can.When he was 3 I do 30 Min of sit and learn.It was a struggle at first but with great dicipline it can be done.He was early on walking,potty training and teething.I was the only one that can understand him with the few words and gestures.He is a very happy little boy and loves his sister.When he turn 4 I can see much of a approval.He was talking 3 words sentences.I have little knowledge about diets so i starting giving healthy snacks.So I continue with all sort of things I read to help him and play learning.Yes it do suck your energy.I Will do jumps to help him what is up and down for as long as I could I will play teacher and make it fun that he wants to learn more.He do alot of exercises with me.Lol that why he have great moterskills.He can climb well and ride a big bicycle without support.His memory is great!!!Little things you do,make a big difference.He’s first year at schoolexplain his teacher about his speech problems.She had to fill forms the specialist wanted.She says he can not express himself verbally or enage in a conversation.He easily gets frustrated which results in conflicts with his peers.He is not disruptive,but his attention span is limited.I can see the progress he is making in school.I still play teacher everyday he can almost write he’s name.He know’s the shapes,animal voices,body parts and talk alots.But he is still behind.He like to sing.He can sing happy birthday perfect He do chooses poeple he want to interact.But my thoughts on that’s are the poeple that wants to make that effort.Like I said he like to play so everyone that’s in for a play they have his full intention.He is extremely busy at home love love play.He always around his big sister they do get in fights.They do get frustrated with one another .But they can't play without another.He can write well 1 to 10 and draw shapes.I like to test him and read and ask questions.There so much progress in his speech development.We still in progress of a diagnosis.I believe every child are uniek.

 

[Kathleen93]

https://IMG_20190110_131649

 

[smurff]

Hi, my princess is 6yrs old and has autism level 2. I knew from about 3mths old she was autistic, I was ignored and everyone told me it was just me worrying as a new mum but I just knew.
I read so many horror stories about what patents go through to get their children the help they need, I realise how lucky we have been. I had an AMAZING hv, when my daughter went nursery they picked up something was different about her so instead of waiting on the nursery I took matters in my own hands and called our hv. She came around to see me and our daughter and within an hour I was refered for hearing, sight test and peadiatric app. Also the Speach and language were going to visit her within the week.
Speech and language suggested a child development clinic I could take her to 3 days a week. All staff are fully trained , it's all one to one and s one staff had children with extra needs aswell.
My daughter had been going only a week and I was pulled onto office and told they were 99% sure she was autistic, they outlined all the help she would need, forms were filled out there and then to get the ball rolling for her EHCP. Amazingly we got her EHCP within 4mths of filling paper work out. We then managed with the clinics help to get her into an ARB class in a mainstream school.
We got her diagnosis when she was about 6. She has a peadiatrics app when she was 4 and half, I was told they would see her again before she was 5 so we could get the ball rolling for the diagnosis before she was trasfered to CHAMS, unfortunately her peadiatric app didn't come through till after she was 5, I knew the waiting list was 3yrs long plus they diagnosed by looking through paperwork, where as the peadiatrics visited her and seen her for themselves. Luckily they knew they were in the wrong and was promised shed be diagnosed through peadiatrics that they kept her on their books so we got a diagnosis within a year.
She is thriving at school, there's only 10 in her class with a teacher and 6 lsa so it's a lot of one to one, she is doing so well that she spends time in her mainstream class now, all of her health care workers and teacher and myself and husband have regular meetings so we can all discuss what stage she is at, weather she needs extra help and what we do next for her, it's so we are all on the same page..... We also claim DLA, we claimed before her diagnosis aswell. DLA goes on needs not diagnosis.

 

[mom2pne]

My second son has asd. He is 22 and lives in a 2 bedroom group home and goes to a day treatment facility where he does life skills and goes out into the community.

 

[OnErth&InHvn]

My dd2 is 11 and has ASD. She was diagnosed last year but i knew when she was 3 something was off. It was diagnosed as other things. I dont parent her different.