Please help - autism

angie_baby

Hi Guys,

Thought id update this thread, DS was confirmed as having ASD today.

I got it all wrong and im in shock, but all the pieces fit now.

I feel like the worst mum for saying he didnt

JBD

Hi, Angie baby, I am the mum of a 9 year old with autism. First of all, please do not feel guilty, this isn't your fault. It made me feel sad to hear you felt like a bad Mum because you didn't think your little boy was autistic. First and foremost, all chidren with ASD are different, they are all individuals and they are all have different problems. I realise this is a very difficult thing to take in at first, I can still remember the day my daughter was diagnosed. Even though I was expecting it ,it was still devastating.
I can't really give any advice right now, just when you feel ready there is a lot of help and information out there. Don't ever think you are alone , you are not. There are many of us out here. Sorry can't really help at the moment, would just like to say I am thinking of you and your dear son at the moment.

SingleSue

Please please don't feel guilty....I went through all of those feelings before and after my two were diagnosed (although I had a pretty good idea youngest was before the diagnosis came in).

Whatever happens, please don't listen to those who insist that it is down to your parenting...and believe me, there will be a few along the way. My ex hubby is still insisting I made my boys autistic through my parenting, I suppose it is his way of dealing with not having 'normal' children.

At the moment I am trying to convince myself that my eldest son doesn't have Marfans (he was referred up for possible Ehlers Danlos as far as we knew but Marfans was the apparently real reason according to the paediatrician), partly because he has always been my medically normal son and partly because I just don't want him to have such a debilitating illness although at the same time, trying to prepare myself for what ever they come up with.

I, like you, feel tremendous guilt for not taking him up sooner because I have been so wrapped up in the other two and their problems plus my divorce on top..and now I feel guilt, just like you, for not wanting to believe it to be true.

Gah, think I have messed this up as I am rambling now!

Anyway, ASD is not the end of the world, things may seem on the bleak side right now but it can improve..there may be battles ahead but just take one day at a time.

finnigan

Its taken a whole year for the diagnosis to be confirmed :eek:, never feel guilty, now you can move forward knowing what you're dealing with.

Good luck xx

angie_baby

HI again,

I just feel like i have punished DS for things that he could not control, and that is not fair on him.

I am still so confused. His behavour is still so different from home to school. He still can handle beaver, PGL camp, beaver camp, etc. CAHMS did say it is beacuse it is a smaller group. BUt it also explains his behavour at school when he is in a bigger group.

To be honest im still taking it all in, the what if's. But yet i know there are no what if's if that makes any sense at all.

Ive decided that im going to take a week to think about things, everythings so confusing and being told that i should claim for DLA and i count cards at the moment just feels so wrong. I dont know why. I have accepted that DS needs help at school. But i really dont feel that i am entitled too extra money because of that.

Can i just say again that this site is great, thank you

finnigan

Hun, we are simply Mums, not superwomen. I've just been told my DD is partially deaf, her latest hearing test shows her hearing has worsened since her gromets were put in, as the Americans would say - go figure - and I too feel guilty for the times I got frustrated with her 'ignoring' me .
Fact is, we have both learned from this. Point is, life is stressfull enough with a 'special' child without beating ourselves up over past mistakes.
As I say, you can now move on and learn how to handle a son with ASD. Re the DLA, the extra money will help with special diets and any extra help you feel might be appropriate.

There is a lot to get your head around. You're doing the right thing, give yourself time to let it sink in and then learn all you can about ASD.

Oh one last thought, remember that your young man is still the same person he was before all this started, his newly accquired title does not change the person that he is .

xx

angie_baby

finnigan wrote: »

Hun, we are simply Mums, not superwomen. I've just been told my DD is partially deaf, her latest hearing test shows her hearing has worsened since her gromets were put in, as the Americans would say - go figure - and I too feel guilty for the times I got frustrated with her 'ignoring' me .
Fact is, we have both learned from this. Point is, life is stressfull enough with a 'special' child without beating ourselves up over past mistakes.
As I say, you can now move on and learn how to handle a son with ASD. Re the DLA, the extra money will help with special diets and any extra help you feel might be appropriate.

There is a lot to get your head around. You're doing the right thing, give yourself time to let it sink in and then learn all you can about ASD.

Oh one last thought, remember that your young man is still the same person he was before all this started, his newly accquired title does not change the person that he is .

xx

Thank you :A

I never thought it was possible but i feel like i love him more. It doesnt make sense. Tomorrow we are going out and having fun, debt or not.

He will always be my munching with ASD and possible ADHD too, whatever, it doesnt matter. He is just more special, i just never knew it

xx

JBD

Angie baby, you are right to take a little bit of time to let this sink in. I claim DLA on behalf of my daughter, believe me I have never claimed any other benefits and have suffered severerly at times because of this, however there are so many hidden costs eg taxi fares to meet her appointments, extra clothes, washing[due to her incontinence] ,breakages,such as pulling the door off the almost new tumble drier, also extras such as play group sessions during the school holidays, the list goes on. Also it is very difficult to work around her. If you do find it necessary to claim DLA there is no need to feel guilty about it.

angie_baby

Hi All,

Well my dad is begining to accept that DS does have ASD. Which is a start. I think deep down we both knew that DS was a little different to others and that we just needed it pointed out.

Had a meeting with the school this morning, as DS was excluded at the end of last term. So told them, compleatly broke down and couldnt stop crying. I think its was because i havent really told anyone else. They have been really good about it and will be looking at different ways to help DS at school. They are also going to ask for a statement so he can have the 121 support he needs. It will take time but at least the wheels are in motion so to speak.

I did spend alot of the weekend looking at DS and thinking how did i not see this before The not wanting to wear a coat, getting really hot, the way he anyalises things. But i will stop it now as i cannot change the past. I can only change the future.

I also keep saying if he is ASD, when he is. Its not an if anymore. He DOES.

Im hoping today went ok, well the school havent phoned yet. Just waiting on the childminder to call and update me on how his day was.

SingleSue

Angie - my boys were diagnosed when they were both 5 (they are 11 and 13 now) and my ex husband and ex mother in law still refuse to believe there is anything wrong, so be prepared that some may not accept it.

It's perfectly normal to be honest, I think my ex husband found it difficult to get his head around the fact that he helped produce children that were not 'normal' and tries everything to make them 'normal'

My mum on the other hand has been absolutely brilliant, has listened carefully to the things I was taught at a special autism behaviour management course and then passed onto her and puts them into action..oh and then nags my dad when she thinks he is being unreasonable or forgotten they do have problems.

My dad was overcome by tears not 18 months ago when my youngest finally spoke to him directly and in a whole sentence instead of the odd word...mind you, me and mum were just as overcome!