Why I am I now wondering if DS's DX is right ?

[TheodoresMummy]

I know it sounds ridiculous...

DS was DX Aspergers just over a week ago.

I have been the only one all along who thought something was up.

Finally get it recognised officially and now I keep looking at him and wondering if I have made an issue out of nothing.

He's being really chilled and cooperative atm, easier to distract and bribe reason with.

BUT if I was overeacting, wouldn't the Psych and Speech Th have noticed. I know that they would have really, but they did rely on a lot of info from me about his behaviour at home, routines, etc.

They can't really mis-DX can they. Tell me not to be so daft.

I just want to relax and get on with things now we have a DX, but can't.

Thought I would feel more sorted once we had the result of his assessments, but I don't.

OH lovey, poor you.

Don't worry this is a completely normal feeling. You'll probably feel it again too. There are times when they cope better with their environment than others and can appear to be like other kids and then other times when their anxiety levels are high and you can really understand the dx.

We went through this at first and one of my friends has this all the time. For instance one day my DS will be perfectly happy and cope well with life the next day he will leave the house in his pj's no slippers or coat becasue he has just got himself wound into a temper and can't get his clothes on or pj's off (he is high functioning and attends mainstream school and is top of his year academically).

Just take it one day at a time - or even one hour at a time if that helps. The dx is not a magic spell to take away your anxiety is it? But the important thing is that a dx doesn't change the lovely DS you have it just explains to others that there may be some ways that they can relate to him to make things easier when he is more anxious and try to avoid him getting there (IYSWIM).

Don't make yourself feel bad about this, you're doing a great job by starting to get him the help he needs and you obviously love him very much.

HTH xxxx

Thank you WedgiesMum (great name btw ).

I agree with WM. My two go through periods of being co-operative and easier to deal with. Then it all changes again and they're back to stimming, screaming, rigid routines etc.

If there really had been any doubt in the minds of the Psych or SALT they would have said so.

(hi CT!!!)

my eldest has been DX with AS 5 years now- and i still have those days where i wonder if he is really AS...then something will happen- and i get what i call "a slap in the face"...describes those moments when i am 'caught offguard' and he does not react in an NT way...and i KNOW he is AS.

Thanks CT, I need somebody to say that they must be sure about their DX. I know that sounds silly.

And thanks MUM23ASD, what kind of things are like a slap in the face for you ?

I think that perhaps I have got so used to DS's behaviours that I no longer see the difference between them and those of an NT 4 yr old.

Hi Theodoresmummy

I can relate to your situation too. my ds recieved a dx in December, and I was surprised at how quickly they gave it. I was half expecting them to tell me to go away and stop being a neurotic over-protective mother. Probably because that is what certain people had labelled me as over the years.

I too still wonder if he is really AS,as he seems so NT a lot of the time. Dont worry, we have to accept the dx I suppose if we sought it. IYSWIM. In my experience I am still getting used to it and dealing with new feelings all the time.

My ds recently made a friend who didnt know anything about his AS, and I liked the Mum,
she told me about her sons dyslexia, and I told her about AS. Then he went to her house and played. When I picked him up she said "well, I certainly dont see any signs of AS," as if he had to prove something. Then I told her to watch out as he had recently attacked a boy at school and beat him around the head with a shoe because ds's desk was not in its "proper"place, he could flip at any time. That was what I thought of when I read of M23ASD referred to a slap in the face.

So even with people I like a lot, and I do feel I have a lot in common with said mum, I still feel ds is not accepted for who he is, with or without dx.

You are still only just after recieving your dx, all the experienced folk on here are right, it will take a lot of getting used to.

Your ds is still the same boy.

Theodoresmummy...

the 'slap in the face' moments are often very trivial things- the most common one is probably....evenings.....
because all 3 of my boys are AS our homelife is chaotic yet structured...in that they all have different routines which slot together like a jigsaw...i've tweaked them so for example from 7-8.30pm is a series of 'slots' where each does their bit of bedtime routine with me 'guarding' them so the other ones don't interrupt.
it's like juggling to me...and as long as nothing interupts me - its easy. Same every night.

Then the phone rings....or doorbell goes...and i am distracted and that is what i call the 'slap in the face' ...reality kicks in... in a matter of seconds everything is chaos...like a row of toppling dominoes- one goes which sets the whole lot off... we can go from ds2 & 3 being almost going up the stairs to bed to ds2 having to re-brush his teeth etc because ds3 interuppted him.....or ds1 gets angry because ds2 'looked' at him . or i forget to tell ds3 that i am putting ds1 & 2 to bed...and he will need me for something and just barge into their room and intent on telling me whatever he was about to...usually about computer or playstation etc...and also unable to undersatand my 'colourful' body language including gestures that to me clearly indicate "GET OUT!!!" ...he'll carry on talking...ds2 particularily hates interuptions to the 'getting into bed bit' and i then have him screching at ds1 to get out. Ds1 then 'has to' restart the story cd- ds hates that too...ds1 then needs me to tuck him in again...do the kissing bit- hugs...and i have to tell him when it is the 'last big kiss'...otherwise when i get to the door he says i have forgotten...

i hope somewhere in that you can see what i mean...some evenings ALL goes beautifully....and i have the younger 2 settled by 8.30- and at 9 i get ds1 down to have his supper etc- and he is settled in bed watching tv by 9.30-lights out at 10/10.30.

other nights it can be 10pm and i am still dealing with ds3 (having removed him from the room he shares with ds2- as he at least- if left in peace - will settle.) Ds2 i then restart afresh the whole bedtime routine- and 1:1 without distractions...30 minutes later he's settled for the night.

...but meanwhile...ds1 does not (as is typical of many teenagers !!!) automatically start his bedtime stuff... and despite it being say 10.30/11...when i tell him to get ready for bed...still expects the whole supper/drink/chat/tv ...and to be honest he is the one that gets the 'grumpy mum' stuff - as by that point i am so fed up.

...and during all this you may wonder where my DH is?????
He's oblivious to it all---watching TV.

The phrase 'just Married' in my case does not indicate 'newly weds'...but 2 people 'JUST HANGING ON TO BEING MARRIED'

he is toatally incapable of sorting the boys out at night- unless i go shopping and he HAS to. whilst i am there it's like he is in a trance. his dad died in january and since then he has withdrawn into himself.

so that is why i am not angry with him- but it is still hard.

anther 'slap' example is buying the 'wrong' potatoes- ds2 refuses anything other than maris piper or king edwards- and silly me to forget....

or grandma appears out of the blue- and is ignored completely by ds1 (as when i know she is coming i go through a 'social story' type thing with him to make sure he 'appears' interested in her...)

or DH manages to short circuit the electric whilst drilling- all the playstations/coputers switch off...games are lost...and riots break out.

or similarly...there is a general power cut...or internet failure...and the boys cannot understand why the 'electric/internet' people could be so cruel as to interupt their planned activities.

...or we are stuck in a traffic jam- and ds2 & 3 ask why we are stopped- and genuinely expect everyone to move out our way as the planned journey did not include such stoppages.

basically- its moments when if i react as 'anyone else would'...it snowballs into chaos...however...if i deal with in in what i call the AS way...if we are with family etc...they look at me strangely- as to them it is all so 'over the top'...but i know what will happen if i 'slip up'...the 'slap in the face'...which infront of family is then followed by whichever ds has 'flipped' being 'dealt with' by other family member (IE NAN...dh'S MUM-who has since her husband died in JAN been DX with
terminal cancer-) who cannot believe hoe 'rude' and 'disrespectful'(as that is how ds's appear) they are to me.

...and in my head all i can think is ...."if only i'd NOT done that...or if only i'd done that......"

and i know i am not responsible for everything...but lifes alot easier for me if i keep everything ticking along without a hitch. hence i hardly go out with the boys.

Blimey MUM23ASD, you have your work cut out there.

I feel a bit embarassed now. We have it very easy at the moment compared to you (especially as I only have one DS atm).

I suppose DS screaming because I chose the wrong mug (this would be the wrong mug for ME !! not him, btw) is similar.

We took him to a small fair yesterday, which he loved, but he did a lot of hand flapping which I have not seen in nearly 2 years.

I am just finding it a bit weird telling people too, e.g. his gymnastics teacher. I wonder if people are thinking "overprotective, fussy mother"...

They wouldn't have diagnosed something they couldn't SEE, in my opinion.

I think you have a natural reaction to this - it's a big step to have this acknowledged and naturally as parents we want to 'wish away' anything being REALLY wrong with our precious child....

so I would say rest assured he has the right diagnosis, and just take these 'good times' as a sign of the progress he is making and a sign of how normal and happy a life he will be able to live, partly because his mum has helped to identify, and meet, his needs!

Thanks so much for that HG !!

You're all right, they wouldn't have given DX if they weren't 100%.

And joy of joys, it appears he has caught chicken pox.

He has quite a few spots, but isn't bothered by them yet.

Got me thinking, he has NEVER seemed to itch. Never mentioned itching and never seen him scratch... Maybe he's not sensitive to itching...??

BTW HonoriaG - was it you mentioned on a Home Ed thread a few months back possibly sending your DC part time to a small school ? just wondered if you went ahead ? Apologies if that wasn't you.

oh dear Theodores, chicken pox! Yes it was me considering the part time small school option. I would LOVE to do this and I know for sure this would suit ds absolutely down to the ground but it's just not going to happen

The only one fairly local to us is a 45 minute journey away....and in order to pay ANY fees at all, I have to work full time, therefore wouldn't be able to get DS to and from school...

It is still something I hope to be able to do for ds at some point though; DH is in process of qualifying so will get far better pay in future years, but not for a while...it is horrible to send your child full time to a state school where you don't feel it suits them that well or where you don't agree with the approach (SATS et al) However it's not as if DS is miserable, he's fine - I just know he could be better suited.

Sorry for the long blurb

HG - that's a shame, 45 mins is too long isn't it.

Just being nosey, from your description on the HE thread I thought the school sounded like one I looked into (although we are miles away). Are the initials TNFSS ?

I am lucky tho, one of the state schools in our town will let DS flex school.

Not perfect, but we hope it will work out.

Hope things work out for you.

Yes it was that one - I haven't been for a visit yet but I will one of these days. Just in case!

I didn't realise that your state school would allow flexi schooling - thanks for letting me know that, I am REALLY interested to hear that and I will start to look into that. DS would love it!

It's up to the school (the headteacher I guess).

Worth investigating.