Hello I'm a newbie!

[Stephanie]

Hello I'm new to forums and ASD so please bear with me . My four year old son has just been diagnosed with ASD, after a year of him attending meetings/assessments with various people etc, I think we kind of 'knew' since he was about 2 but have been (and are still) in denial. He started reading comprehensively at 2 and a half years old .. self taught, and loves anything to do with reading, writing, flags, countries etc etc. He fails on a few areas .. can't pedal a bike, some motor skills, social skills, communication, language - the usual - but all of this is "normal" to me as he is my first child and I had no other children to compare him to. I have just adapted myself to him. He starts mainstream school in September. I am fearful that my 7 month old may also become ASD in later life and it is affecting my relationship with him a little (did anyone else have this??) I am at the denial stage, it all seems so ###### unfair, why was that statistic ours etc. He is the most gorgeous, loving child .... we love him so much and only ever want the best for him ... much like the rest of you! I am fearful of meeting other parents of ASD kids in case they give me an insight into the future that I don't want to hear (if that makes sense). Where do I go now ... my child has ASD and is being considered for a statement ... but what should I do as a parent? What books should I buy? Who should I talk to? Are there any specific websites I need to know about? I'm just feeling lost, if anyone can help I would really appreciate it.

 

Many thanks, Stephanie - Mum of Asa, 4 years old and Griffin, 7 months.

[nellie]

Stephanie <'> <'>

 

Welcome to the forum. You will find lots of information and support on here from people who understand and care. I think most of us understand how you feel. It's easy to be overwhelmed by too much information, take your time, it's an emotional roller coaster.

 

I would advise you to read some of the many postings and information on the forum, you may start to recognise some of the problems you have and may realise you are not alone.

 

If you have any questions, please ask.

 

Take care

 

Nellie xx

[oracle]

Hi and welcome,

 

You just found your way to the best forum on the internet It is now 5 years since my two sons, who were then aged 3 and 13 respectively, were diagnosed within six weeks of each other. I had lived for ten years knowing that there was 'something' with my eldest and when it became clear to me that there was also 'something' with the youngest I would not longer be fobbed off.

 

For a time I actually felt as if I had lost my two sons and said this to my GP (at that time) he quite clearly did not understand. My eldest son was the person who actually helped me to realise that they both may have a dx but they were the same kids that I had been living with for 13 and in that way nothing had changed.

 

Do you have a local support group who could offer your support and friendship? Opening our local support group has proved that there is s need. Especially for parents of newly dx'd children. However yesterday I spoke to a Mum for almost 2 hours whose child had been dx'd for six years and is still unable even to say the 'a' word as she said. So for some parents it does take a great deal longer to come to terms with it. But when we do then we are able to learn about our children and strive to understand them. Then we are able to move forward and get results. ASD is not a curse - but it can be blooming hard work. But it is possible to move forward.

 

Carole

[baddad]

Hi Stephanie and co -

welcome aboard!

Strange time at the moment for sure, lots of different emotions and about 8 million questions all banging about inside your head.

Anything 'general' you need to know - take nellie's lead and have a good wander round. Anything specific, just post away - the knowledge around here is simply amazing; and some of the other members know some stuff as well

One other piece of advice: TAKE IT SLOWLY... there's a tendency after diagnosis to want to jump right in and put the world to rights, but it's much less stressful and more beneficial to save your energy for the long game.

Very best

L&P

BD

[supersec]

Hello Stephanie

 

Welcome to this little piece of sanity (not sure sanity is the right word tho! have you been in to the batcave yet?!).

 

Lots of fantastic posts and threads on this site.

 

Great to come here and find information out and everyone is fab.

 

My heart and hugs <'> <'> go out to you at this very hard stressful time but we are here to help if we can.

 

Caroline, Julian (nearly four) and Jamie (nine months)

xx

[forbsay]

Hi Stephanie

 

Totally know where you are coming from!

 

My son is 5 years old and was diagnosed when he was 2.5 yrs old. We went to hospital thinking we were going for a speech assessment - and we came out with the diagnosis of autism................

 

I has taken me a long time to get my head around things. The week before my son was diagnosed i found out I was pregnant. I was constantly worrying about my little girl who has now 2 past and she is doing really really well. With alot of help from specialists, my little boy has changed so much. About 2 years ago, he couldn't speak - last week it was his daddy's birthday and he sang happy birthday to us - it was absolutely priceless.

 

My advice is that you have got to give yourself time to accept the diagnosis. My little boy can be very hard work but it is so rewarding. So much so that i am looking for a job to work with autistic children - at the moment i work in the finance sector.

 

If I can be of any help to you, please do not hesitate to contact me. By the way this forum is absolutely brilliant - i found it about a week ago and already I don't feel so alone.................

 

Take care

 

Elaine

x

[Stephanie]

Thanks for all of your support guys, I'm so lucky to have found people who can relate .. I don't know anyone else with ASD in 'the real world' and therefore feel so alone with it. The one thing I have found through looking at the messages is how many people have more than one child affected ... which is very daunting as I have a 7 month old boy (absolutely gorgeous) and am constantly in fear of him also having it. My four year old is "higher end of the spectrum" - whatever that means .. and by reading some of the messages on here I realise that there are a lot of children far worse off than me so I should quit moaning about it. We haven't told our extended family that Asa is ASD, as I don't feel that they would understand - people don't know what autism really is, they think of Rainman and MMR and handicap rather than know the facts, I fear therefore that if I told my family they would treat him differently (talk to him like he was an idiot/deaf which would hinder his speech development). I guess they will have to know at some point, but for now they haven't suspected anything as he continues to improve. As he has been able to read since he was 2, they think he is "gifted" and a genius ! If I tell people it will be a label for him, he will no longer be "Asa, that cute blonde kid" it will be "Asa, you know, the Autistic one". Am I doing the right thing by keeping it under wraps for now? How did your families react?

 

Stephanie x

[hopeful]

Autism/Aspergers are utterly inherent to the personalities of those they affect : if I did not have Aspergers I would not even exist. So if I resented my Aspergers I would be resenting my own existence, which would clearly be nonsensical.

Edited August 4, 2005 by hopeful

[forbsay]

Hello Stephanie

 

My advice is to keep it to yourself until you feel ready and strong enough to tell people.

 

I waited for over a year before I told my parents about my son. I can now talk to people about him and I am proud to wear an autism awareness bracelet! It is now also public knowledge at my work about my little boy as I did a sponsored walk for autistic children and raised over �200. I would have never have been so public before! I feel as though some people have kept their distance from me but in other ways I have developed stronger relations with other people. Different people react to the same situations in a different manner and that is what I keep saying to myself!

 

I don't know any parents of autistic children though my son is going to school in August so hopefully I will meet other parents. I sometimes go to a monthly support group but I am quite a quiet person but I should just speak up as I have got so much to give to others - sorry sounds abit cheesy!

 

This forum is fab. I just discovered it a few weeks ago and already I am feeling a lot better within myself.

 

Take care

 

Elaine

x

[big mamma]

Hi Stephanie,

 

My daughter is 3 1/2 and high functioning. I am very open with people about her diagnosis because she has very good verbal skills and her problems therefore aren't that visible - until she starts flapping her arms wildly that is !

 

I went and told all the family once she was diagnosed because they now understand she's not spoilt and overbearing ( well maybe a little she just has to be communicated with differently ie no loud excited welcomes, big bear hugs etc.

 

I have also encouraged my family to read books on the topic etc and they have all began to relate to her better now as the understanding of why she does odd things becomes clearer.

 

Everyone has their own viewpoint on this but being very open has also reduced my stress levels !!

[Zemanski]

Com was very verbal and amazing at maths from a very early age.

He is wonderful partly because he has AS - AS explains some of the amazing things he can do alongside some of the difficulties he has and his diagnosis is really just a signpost to show us where to look when he needs help and advice (or we do ).

 

ASDs do run in families so you do need to keep an eye on your little one but you know some of the signs now and they will probably be pretty obvious to you in the next couple of years if they are there so you shouldn't need to look too hard.

 

however, many siblings of AS children are NT, in fact, I think most of them are.

 

I have 2 children and both have special needs, Com has AS and dyspraxia but Dot has dyslexia and dyspraxia they are both so different and such bright stars, it took a while to accept that they were different and would need extra support and understanding but now I don't even consider what it might be like if they didn't have these things.

 

as others have said, take your time to get used to the idea before thinking about how to tell other people, and read some light, positive stuff like Freaks Geeks and Aspergers Syndrome by Luke Jackson (a teenager with AS who has a lovely way of writing about himself and his family and who obviously has huge potential that he is well on the way to fulfilling in spite of all the problems he has had along the way) - you'll find all sorts of books mentioned in the resources section.

 

you will need to tell people eventually though, especially family and close friends, because the more people around who can learn to understand how your son thinks and how to help him be comfortable with them and others, the easier it will be for him.

 

Also remember that at some point your son will need to know why and how he is different and he will need people around him who understand to help him through his own acceptance of his diagnosis, this may not be for several years but Com was looking for answers at 5 and we didn't get his diagnosis till 9 - those years of wondering were very difficult for him.

 

 

take care of yourself and give yourself plenty of time

 

Zemanski

[TylersMum]

Hi, I'm a newbie too. My son was diagnosed 3 weeks ago (he will be five in September), he is high functioning and I;ve been a member for a week.

 

I have a really strong family/friends support network but feel much more supported since finding this site.

 

I was in total denial for about 2 years (first suspected Autism at 2.5 years) so have only really come to terms with it in the last 6 months.

 

Tyler is a wonderful little fella, very cuddly, likes kissing and has good speech skills but not in comparison to my daughter, aged 3.5.

 

He has been accepted to a special school and has had a statement done but I had to fight for the special school. Part of my acceptance was the change in my own mind that a special school would be better for him. Before I accepted that he has ASD I was adamant that he had to go to mainstream because that was what "normal" kids did.

 

Its tough - we've cried, worried and despaired but have also been elated, delighted and amazed at our wonderful son.

 

If you need any support on a 121, feel free to email. mum2two@ntlworld.com