How did you react to diagnosis

[workingmumandstudent]

Hello all

I am a mum to 1 DS, 2 DSD and 1 DSS. I am also a run drama workshops for children and adults with SEN. I am also at uni (madness!!!)
I am intersted in how you responded to your child diagnosis and assesments. My youngest, (DSS) Is currently undergoing assesments as he has very challenging behaviour and can be quite aggresive. I strugglr to know how to feel about this as I am also a proffesional in the field of Special needs.

DS1:I think my reaction was "I know hes ADHD, i told you he was 4yrs ago!"

DS4: I think i was waiting to be told that hes Aspergic, and was told that he has ASD and SLI, so i wasnt shocked, but then fell apart when he asked me if i thought he had listened to what i said. wierd, dont know why... apart from the fact that he hadnt listened to much of what i said, and i kind of said err errr went bright red cause i didnt want to offend him and say "actually you didnt listen to a word i said". Then i realised i hadnt immediately jumped to his defence and felt even worse, and promptly burst into tears , but i was fine with the 10min diagnosis.

DS5: still battling with them to tell me that hes autistic.

As son had oiginrally been misdiagnosed as having paranoid schizophrenia I was absolutely ecstatic to find out that he actually had Aspergers!

That's not unusual is it WA? All Lecturers (all diagnosing professionals or very high up types) we have mention the need to screen out Schizophrenia, and emphasise it as a possible misdiagnosis.

It's been different each timewith us.DS1 was the first and it was extremely relieving and extremely painful, DS3 it was harder as we'd been verbally dx'd then had it withdrawn several times so actually seeing it in writing was pretty hard.

However, when we were called into school and told ds2 had some SEN and probably either DCD or ADD (now think DAMP may be it) they provided tissues for crying but I ended up laughing- seemed to have reached the silly stage by number 3, although he has far less difficulties than the other two.

We're questioning ds4's development ATM because he seems a bit disparate (and becuase at 20 months with ur history it seems judicious to consider)- no evidence of ASD in some ways, but other flags and a few anomalies (the clingiest child ever for example, couldn't even leave him with my Mum until he was 18 months or he would head bang) and for the first time the idea of another one provokes real fear, hoping that we get to avoid that route.

With the older DX'snow I find that the AS one is a relief; he'ssevere enough to need specialist services and won't cope at MS Comp so I am so glad we got the DX at 6; however ds3 has lost ground and seems to be developing ADHD so its a constant fear factor that never gets to quite vanish, and ever changing- when he was DX'd we weretold to look towards supported living, now with the ADHD DH and I relaise there's a strong chance that will not be sufficient so feel a bit as if it has yet to resolve IYKWIM?

My initial reaction was disbelief then doubt in my ability to mother a child with Sn then total protectiveness combined with terrible fear he would die, soon.

Assessments made me depressed and angry. as they highlighted everthing he couldn't do or failed to show what he could. Especially when given an age equivalent ability level. really hard to be told your 3 yr old is developmentally 10 months or something.
Now he's older bothers me less as I know him and what he is really like.
Also more positive side was that worse he appeared on paper the more help we got.

very very badly

No Peachy - in son's case it was a negligent misdiagnosis given by an incompetent tosser who no longer works in the UK - he fled a few months later - a long story

I was just relieved and only cried because it was a watershed moment, the switch had been flicked and could never be unswitched iyswim. But great to have a clearer idea of the future, dump all the uncertainty and just move on really.

Most people go through a grieving stage where they mourn the loss of the fantasy child they never had. I had already gone through that the day I decided to set the assessment ball rolling(which took a year). You also get the chance to forgive yourself for all the times you can't cope and feel resentment and also you get the chance to forgive the child for being such a PITA .

relief! id been saying DS has aspergers for long enough! kept getting shouted down by School/idiot ed psyche and i knew what it was already, just needed the dx to attempt to get him some help/understanding at school. well...needless to say that fell a bit flat - but at least it helped me, gave me a reason for the odd behaviour. has helped him no end in college though having the DX.

Yo Vic - how's the clearup rate on your patch these days?

yo witty!

now...you know im a bit thick right? say that again s-l-o-w-l-y

hows the what on my what?

how the devil are you anyway? i get lost on here its so huge...

Just an oblique refernce to your soon to be new occupation.

Me - differnet day , same shit. Had a phone call from the Leader of my Council at teatime apologising for son's latest Housing Benefit screw-up. He must be sick of hearing from me by now. I'll make him a cup of tea when he comes canvassing next June

aaahhhh! right! yes! ha ha! well from what i know of my soon to be patch its nice and juicy - lots of pond life to deal with! (do i sound a little bit toooo excited by that?) im just giddy that i actually got in!

so sorry your still dealing with sameold sameold...how could anyone get fed up of your dulcet tones...
give em hell!

WA sorry I did phrase my post wrongly

I meant its not unusual for some badly performing Diagnosticians to make that DX instead of the proper ASD one

Don't doubt the malpractice / incompetence for one second. I am lucky becuase we have some excellent diagnosing Paeds and Psychs here, but loads of people on ouir course from so many areas including England and really very ruralareas, and I have learned just how lucky we really are (though we make up for it in SSD I can tell you)

With huge relief as we had previously been told that she was making it up and she had been retained in hospital on suspicions of sexual abuse.

(it's a connective tissue disorder, causing joint pains and mobility problems)

When little brother was diagnosed 5 years later- again with relief that we didn't have to go through the accusations.

But then it's a pain disorder: they couldn't help noticing that they were in pain; we knew that long before the diagnosis. It was the fear of noone else believing: being suspected by doctors of causing it or exaggerating it, not getting any treatment, reported to Social Services for poor school attendance, having to carry a 9yo on my back because not allowed a wheelchair. Nothing diagnosis could do to us that hadn't been done already.

Huge relief...but it was a long time coming ...i had done my grieving years before.

The impending doom of a so-called "life limiting condition".

It has a huge impact on all the family.

Sometimes I'm swimming in treacle.

I've heard the whole "coming to terms with" bit being described as like a bereavement itself, as in, it lessens but never completely goes away (the feelings of bewilderment, anger, frustration, disbelief etc) I KNOW the CHILD doesn't go away. This doesn't make much sense, does it!

Devestated, but not when ds got a formal diagnosis. That came months and months after the parental diagnosis.

At a longtime coming Comm Paed appointment, only set up to 'put my mind at rest' for banging on for over a year, I was devestated to hear the word Autism, not because I didn't think he had it, but because the whole world and their son was telling me I was a neurotic mother and I pinned all my hopes on the Paed confirming their stories. To hear 'possible autism' at that point was devestating (despite blimmin well knowing it for ages).