Introduce yourself (part one)

Hi

I live in Kent with my lovely hubby and 2 boys - the youngest is 8 and was diagnosed with autism 4 years ago. He attended mainstream school until last September. We managed to get a statement for him after much fighting and stress, and he is now at an ASD unit and doing really, really well

We have been through a rollersoaster of emotions over the last few years, especially when dealing with the education system, but things have now settled down. I am interested in helping others to negotiate the often confusing and sometimes stressful system we have regarding SEN in our schools.

We've also had many behaviour and sensory issued to deal with, and I hope I can be of some help to others who are experiencing similar problems.

There are always things that we need help with, too, so I'm sure I'll be asking for plenty of advice from you all as well!

Looking forward to getting to know everyone here

Nicky x

Auntie Ann said:

Hi, my name is Ann and I'm from Cambridgeshire. I had my sons diagnosed in February on the 9th and 10th of this year. My eldest son Ciaran, (now 7), has aspergers and ADHD. My youngest son Frazier, (now 3), has classic autism.

 

It was pretty tough to be told that they both have the problems they have within the space of two days. I have always known that Ciaran had some issues and I spent years pushing for him to be seen. It took five years for him to be assessed and they said he needs medication but three months later nothing has happened. I haven't even got the report back and without it I can't get the medicines that Ciaran needs. I have been on their case to try and get some help but they can't even find the report so we've had no help at all!

 

As I said, I knew Ciaran had problems from the minute he was born... But I thought Frazier was just a tantrum throwing toddler with speech problems. There is a history of speech problems in my family so I didn't read too much into it. I suppose I just loved him as he is and overlooked his problems. When I look back I feel quite foolish that I didn't see the signs and symptoms, because he has pretty much all of them! But to be fair I didn't really know much about autism as I'd never encountered it myself. If you don't know what you are looking for then even if it's right under your nose you still wouldn't recognise it.

 

Frazier has echolalia but doesn't seem to put words to meaning. He is just starting to learn a few words which he matches to the right objects now, but it is a very recent thing. He can throw tantrums that last up to five hours and he can stay awake for up to 36 hours with only a couple of hours sleep in between. Odd things freak him out, and I get a lot of nasty comments and evil glances from onlookers who think I am a bad mum and Frazier is a result of my bad parenting. I am gradually getting support for Frazier, but it is slow in coming. I start the 'early birds course' in a few weeks so I am looking forward to that. Frazier has a speech therapist, early years support worker, a pediatrician and another person that I don't really see and can't remember what she does. I have only just come to terms with the diagnosis of both of my children but I am okay now. I have been doing a lot of reading about autism, (this website is brilliant for information), so things are improving slowly. 

 

Anyway, I'm sure you are bored by now so I shall say cheerio xx

One of my twins had a lot of problems with echolalia and he ended up using it as his way of commincating for several years. Now he can use speech in a much more normal way but he does frequently repeat phrases from adverts and TV programs, etc or even whole adverts just because he likes doing that. His echolalia was always the delayed variety anyway and he has a memory like the proverbial elephant except for what he needs to do or where he's put things (and then he has a brain like a sieve). My twins are 11 and still prone to tantrums but ussually at home rather than school these days. Having Aspergers Syndrome myself when in the past they had tantrums when we are out I never noticed people's facial expressions but I was aware afterwards that people probably were giving nasty looks I didn't see. I never had the option of the early bird course- I forget now why. We knew they were on the Autistic Spectrum for years before they actually got a diagnosis- they were assessed using an assessment questionaire by an ordinary peadiatrician at a hospital (the sort that sees outpatients) at the age 0f 2 that came up as probably being on the Autsitc Spectrum and mild ASD.

Although I have been a member of the NAS for years I have only recently registered to use this forum. I'm one of those people forms to do with are you a person with an ASD or a parent of someone with an ASD or work with someone with an ASD seem to not be designed to cope with as you can never select more than one option- I am both a person with an ASD (I have Aspergers Syndrome) and a parent of someone with an ASD- 2 in fact (my twins both have ASDs: one has Autism and the other has Aspergers Syndrome and ADHD). They have a big brother who's diagnosis is Global Developmental Delay but does have some of the additional characterists common amongst people with ASDs- for example, until a few years ago he did the autistic hand flapping (the only one of us who ever did) and he does have sensory issues like he is on the spectrum even though he isn't. My oldest is 14 and the twins are 11. I am 42 and was diagnosed at the age 33. My Autistic twin was diagnosed when he was in Year 1. His twin got his diagnosis when he was in Year 5. We are near Romsey in Hampshire, UK. 

Hi RastaManUK,

Great to see you join the Community, hope you enjoy your time here. Everyone is pretty new, we only launched a few months back so don't worry about that. :)

Hello everyone im pretty new here so I just thought i would introduce myself. I am an adult who has ASD as well as Dyspraxia and Mental Health problems but i take things day by day and see how things go.

Hi sanders,

Welcome to the community.  Glad you've found it beneficial so far and please do post if you want a chat about anything.

Sandra

hi there i am new to all this one of my boy twins has recently been assessed by the community paeditrician for overly active behaviour and has said that it is a high possiblity of autism . He is being referred to other specialists to assess at what point of the spectrum but are looking at high functioning / aspergers . I have read quite a bit on this forum and can relate to a lot of it . We have known for a long time that there was something different with our son .When he was a very small baby he would not look at his twin , but he would have eye contact with both of us . Socially things are very difficult and we are limited to where we can take our son .He shouts and screams loudly and makes inappropriate comments . He runs away and has absolutely no sense of danger . I dont know quite what I want to say except on reading things on here I do not feel so alone ..Thanx         

Hi Mez,

Good to have you here. Please feel free to start a discussion in one of the topic areas if there's anything you'd like to chat about. Look forward to hearing from you.

Sandra

Hi, I am the mother of a 13 year old boy with ASD and Dispraxia who attends a mainstream school and a 10 year old girl.  We have had many dealings with CAHMS in the past as James also suffers with Trichotillamania and to be quite honest felt them to be no help. So I am hoping I can get advice and help from here. It seems to be that once you get a diagnosis you are left to get on with it yourself..

Hi Auntie Ann

Welcome to the forum and thank you for posting.  Hopefully you will be able to gain more information and support from other people on the forum.  We are all hear to help and support each other and please do not hesitate to "shout" if there is anything that you need to know or if you want to get something off your chest!

Welcome again

ColinCat

Hi, my name is Ann and I'm from Cambridgeshire. I had my sons diagnosed in February on the 9th and 10th of this year. My eldest son Ciaran, (now 7), has aspergers and ADHD. My youngest son Frazier, (now 3), has classic autism.

It was pretty tough to be told that they both have the problems they have within the space of two days. I have always known that Ciaran had some issues and I spent years pushing for him to be seen. It took five years for him to be assessed and they said he needs medication but three months later nothing has happened. I haven't even got the report back and without it I can't get the medicines that Ciaran needs. I have been on their case to try and get some help but they can't even find the report so we've had no help at all!

As I said, I knew Ciaran had problems from the minute he was born... But I thought Frazier was just a tantrum throwing toddler with speech problems. There is a history of speech problems in my family so I didn't read too much into it. I suppose I just loved him as he is and overlooked his problems. When I look back I feel quite foolish that I didn't see the signs and symptoms, because he has pretty much all of them! But to be fair I didn't really know much about autism as I'd never encountered it myself. If you don't know what you are looking for then even if it's right under your nose you still wouldn't recognise it.

Frazier has echolalia but doesn't seem to put words to meaning. He is just starting to learn a few words which he matches to the right objects now, but it is a very recent thing. He can throw tantrums that last up to five hours and he can stay awake for up to 36 hours with only a couple of hours sleep in between. Odd things freak him out, and I get a lot of nasty comments and evil glances from onlookers who think I am a bad mum and Frazier is a result of my bad parenting. I am gradually getting support for Frazier, but it is slow in coming. I start the 'early birds course' in a few weeks so I am looking forward to that. Frazier has a speech therapist, early years support worker, a pediatrician and another person that I don't really see and can't remember what she does. I have only just come to terms with the diagnosis of both of my children but I am okay now. I have been doing a lot of reading about autism, (this website is brilliant for information), so things are improving slowly. 

Anyway, I'm sure you are bored by now so I shall say cheerio xx

To bumblebee.Would be interested in talking more about how you got the extra help for your eldest in particular. My daughter is 15 and should be doing ok at school. instead she is underacheiving across the curriculum and school seem to say the right things but do nothing!  She finally got a diagnosis of aspergers last dec.

Hi. Hoping not to feel qiute so alone now.

Thank you for the warm welcome xxx

Thank you for the warm welcome xxx

Thanks

Hi Sharri2415,

Welcome to the community. I hope that reading and joining in the discussions will be beneficial. Looking forward to hearing from you here soon.

Sandra

Hi, I have 5 children. 17 yrs (Just diagnosed Dyslexic! and very possible Aspergers, undiagnosed) 9yrs mainstream, 7yrs moderate deafness, 6yrs assesment done but as of yet undiagnosed and 2yrs mainstream.

My eldest has had problems from about 2, but we put it down to emotional because of a nasty divorce. It wasn't until looking up symptoms for my 6 year old I found so many of her traits. Won't put tv volume on odd numbers? collects train tickets and puts in alphabetical order? won't walk through a door first? Doesn't like to go anywhere by herself? completely disorganised...... 

Have found this site really helpful so far

Hi Bumblebee and TanyaM, 

Glad to see you both here, hope you enjoy your time in the Community :)

I am a mam to 4 children aged 9,8 , 6 & 4  , my 2 girls arte the oldest & youngest , my 2 boys are in the middle , both have dyspraxia , they have had the first assessment with their OT  ,their OT is going to be going in their schools to do assessments there , then they will do an assessment at hom e, but she says that she is 100% sure they are both dyspraxic , she also says my 6 year old boy definetely has alot of autsitic traits , she now just has to find out under what umberella he comes under with autisim but she says he is definetely autistic.

My 6 year old also has alot of problems with his bowels he has been on laxatives since he was 3 months old he does wees in the toilet & poos but he still soils both at home & school does any one else have a child that soils?

I hope to make friends with other parents who are going through what we are going through.