is it denial??

[claire33]

Hi All

 

Just wanted to say something with all the problems i have had with k over the years i have tryed my best to find out the how?what?and why? they could be happening.

When i came across aspergers syndrome and saw that he had alot of the symptoms, i went to the library i looked on the internet anything and everything basically to find out as much as i could about it to the point were im convinced thats what it is, but recently i've been thinking what if its not??

This may sound silly but im thinking god if its not what will i do?

Does this sound like a daft thing to say? i know everyone wants the perfect child, but i don't know wether i'm just in going into denial!

Sometimes when im reading some of your posts i think well he doesnt do that and i know that they are all individuals and some things he does ive never seen any of you talk about!

I think the whole thing is just getting to me not knowing is the hardest thing!!!

 

How do you cope til you get the answers????

[cmuir]

Hi

 

You cope because you have to! I trolled the internet night after night, read loads of books, etc. I had some doubts, but the more knowledge I gained, the more convinced I became despite my GP and HV categorically telling me my son didn't have an ASD. Even now, there are some days where Robert seems so normal, but then he'll say something or do something that reminds me. Gut feeling tells you something's not right. I kept a diary detailing all the odd things that Robert did over an 8 month period. I photocopied the important bits (highlighting areas) and sent it in advance of appointments - I'd have to have been off my head to have made up the things that happened. Finally, along with ongoing assessments and observations, it became obvious to other that something wasn't right. Even once referred, the Paed that first saw Robert wasn't convinced and she wasn't interested either. It wasn't easy, but she who shouts the loudest and all that .... Persevere and read up. This forum is the best place for you.

 

Best wishes

 

Caroline

[claire33]

Hi

 

You cope because you have to! I trolled the internet night after night, read loads of books, etc. I had some doubts, but the more knowledge I gained, the more convinced I became despite my GP and HV categorically telling me my son didn't have an ASD. Even now, there are some days where Robert seems so normal, but then he'll say something or do something that reminds me. Gut feeling tells you something's not right. I kept a diary detailing all the odd things that Robert did over an 8 month period. I photocopied the important bits (highlighting areas) and sent it in advance of appointments - I'd have to have been off my head to have made up the things that happened. Finally, along with ongoing assessments and observations, it became obvious to other that something wasn't right. Even once referred, the Paed that first saw Robert wasn't convinced and she wasn't interested either. It wasn't easy, but she who shouts the loudest and all that .... Persevere and read up. This forum is the best place for you.

 

Best wishes

 

Caroline

 

Thanx caroline

 

Just sometimes i wonder if im making more of it than i should!

[butterfingersbimbo]

sometimes i just go off and forget about it all, well i try to anyway! otherwise it just turns into every waking moment is spent examining everything and i cant live like that!

 

try to keep an open mind, remember that even tho our children all have big similarities, they aren't clones, and dont come with a fixed list of will react like this or wont do this.......give your brain a rest chic!

[claire33]

sometimes i just go off and forget about it all, well i try to anyway! otherwise it just turns into every waking moment is spent examining everything and i cant live like that!

 

try to keep an open mind, remember that even tho our children all have big similarities, they aren't clones, and dont come with a fixed list of will react like this or wont do this.......give your brain a rest chic!

 

Thanx butter

 

I think maybe thats what i need to do it seems like i spend every waking moment thinking about it, i even lie in bed sometimes and cant get to sleep for it, its hard not knowing the unknown!

[butterfingersbimbo]

yeah i know exactly what you mean!!!

[jlp]

It's a big responsibility I felt when my ds was being assessed - yes they speak to school etc but we had many many appointments where it was just us chatting about things G did - I used to panic thinking am I making too much of things as a large part of the diagnosis rested on what we were saying as parents.

 

I often have sleepless nights now even with a diagnosis - before then there were even more.

[chriss]

Sometimes when things are going well with my lad I feel like a fraud - as if everyone who says "he's fine" is right. And then something happens of the smashed glass, or brakes slamming on, or broken furniture variety and it brings me back to reality and it is good to know why he does these things. If I didn't know he had Aspergers I would be a wreck.

 

All will become clear over time, and yes in a way it is denial because it is normal for us to want our children to be "normal".

[Kazzen161]

My eldest son started college in September - he was doing so well, some people were asking if he really did have AS. That was just the honeymoon period though, and over the last few weeks, they are starting to see the "real" T.

 

Once, a few years ago, when T was in a very stressful situation, someone asked if I was sure he had AS rather than autism.

 

Try to trust your own judgement - parents are usually right!

 

Karen

[karin]

claire33 feel exactly the same way think what makes us feel like this is all the proffesionals telling us it is not what we think it is been trying to get my2 diagnosed for a number of years you go through these emotions all the time me ive given up trying to get my 2 diagnosed as every time i do i get shunted from pillar to post about to be referred to someone in oxford for residential assesment and found out the hospital has decided its too expensive to have residential patients and anyway our authority probably would not pay for the cost to have them asessed but dont give up if you meet the right people which i hope you do it will all work out okay in the end keep smilin karin

[cmuir]

Hi clare

 

Know what you mean about spending every waking moment thinking about things. I find it so difficult to switch off and find that I wake up knackered and go to bed even more knackered! It's never ending. You can't just switch off, but I guess it's finding a healthy balance of not going over and over and over things, but looking at things constructively. We're all only human and I find that every now and again I run out of steam and need to recharge my batteries.

 

Best wishes

 

Caroline

[Stephanie]

Sorry to hear you are having a bad time of it, I think this rings bells with a lot of us ...

 

The hardest thing about my sons diagnosis was the fact I had leave all my doubts and denial behind, it was there in black and white and there was no going back.

 

I had hoped for so long that I was wrong, that maybe I was just imagining his symptoms and that all kids did things like he did. I hoped and prayed it could be something else - maybe just a communication disorder, maybe he was "different" but not on the spectrum.

 

When he was diagnosed as HFA, part of me was relieved, part of me just went into mourning - and that stayed for a long time. I was absolutely gutted. Looking back, I always knew .. but I clung on to hope and a lot of denial. There have been a lot of why him's, why us, and what caused it questions but I think that is part of the process.

 

The diagnosis has meant he gets the right care now, the right support and we too as parents get support - from the forum and by other means. It was absolutely the right thing to do. 18 months on, we are coping so much better. A lot of questions have now been answered.

 

My Health Visitor thought I was over reacting when I first told her about my son "you mustn't go around saying he's autistic", she took a lot of convincing and would only believe me when I told her text book symptoms he was having (because they do their diagnosis from text books of course) and we eventually got referred for assessment which was a long and tedious process. I think if you think there is something wrong you have to try and convince your GP or HV even if you have to over emphasis the traits to get through to assessment ... the earlier your child is diagnosed the better. Alternatively, it might be something totally different and not ASD at all.

 

I think knowledge is power, you should learn as much about it as you can - it can hurt but overall it helps in the long run.

 

The best thing you can do as a parent is be prepared to fight against the system and for your child (without trying to worry too much!)