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a bloody hard week following a crappy year!

14 replies

mysonben · 05/02/2010 11:53

Hi, sorry in advance for yet another rant

It has been 9 months since that day last april when community Paed suggested for the fist time that B was on the spectrum but that he was 'mild'. (B has also been in the system with SALT since age 2.)
Since then a lot has happened most of it for the best so something to be cheerful about i suppose. Senco and EP got involved at MS nursery.

We also got in touch with Bibic who did a home outreach visit, brilliant!
In november B got a place in a language unit for 2 mornings a week.

We had 3 reviews with the paed, and finally it was agreed last november that senior paed was refering B to Cahms for asd assessment.

Finally we had our first appointment with the autism team at Cahms on tuesday for a pre-assessment interview.
We saw a paed and a psy was also there to observe and take notes.
It took not far of 2 hours, went through many questions, paed watched B play alone then interacted with him, shortly before the end she informed us that yes it was clear that B had autism and that she would put his name on the list for the full asd assessment.

So that's it, it has taking a while to get there due to waiting lists and slow long winded procedures. And i'm aware that for some families it can take much longer sadly.

This last year has been emotionally difficult, DH and i have been through the 'is he? isn't he?' rollercoaster many times, at times i have felt like pulling out of the whole dx merry go round, at other times i couldn't wait any longer, it truely has been up and down, and professionals were always cautious and foggy with their answers, always suggesting B presented with autistic traits but they weren't prepared to say it frankly, so we were left wonderind and pondering.

So when Cahms paed said B has autism, it was to finally hear someone confirming it so clearly, then when it sunk in fully, and as we are now very close to getting a dx and paed said more should be done to help him and Cahms will be contacting nursery, future school, and EP.

But it hurts as the tiny bit of hope i had left that maybe we could be wrong , that maybe the issues were due to the speech delay , well it's gone. and i feel like crying all the time, i can understand why as it wasn't sudden and inexpected that B had asd.

To top it all i had a barmy last night with my sis (who lives abroad miles away) as she is totally unsupportive and makes flippant hurtful remarks all the time, she just doesn't see how hard it has been for us and tbh she doesn't even try, so i sent her a nasty email telling her where to go. She had the nerve to say we were treating B like a lab rat with all the professionals involved with him , all the obs , all the reports,... as if it was my fault the system is so long winded.
Apparently where she lives in france, it doesn't take that long to get a full dx, help and therapy!
She said if it was her ds , she wouldn't do the dx, and she can't understand why B needs a dx as he is mild ! ...grrrr ! I told her because he struggles at nursery and we want a dx before he starts school.
She was just vile! and i will not be talking to her anymore.

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BriocheDoree · 05/02/2010 12:55

Well that stuff about France is just bollocks and you can tell her so from someone who lives here. We have been VERY LUCKY with DD but I know people who have taken YEARS to get diagnosis only then to be told it's all their fault. France is one of the worst countries in the world for autism support. I have two friends with non-verbal kids who can't find ANY school prepared to take their children, even though it's against the law. Kids might not struggle at nursery where they mainly just play, but they sure as hell struggle when they are at school and they are told to sit down and work and not get distracted by loud noises, funny smells, 30 other kids in the class...
Sorry, bit of a rant but I find that a bit rich coming from a country where some professionals still think autism is an infantile psychosis (!)
It's normal to be upset after diagnosis. Then it all sinks in and you get back to normal for a while. Then you start comparing them to their peers and it all hurts again...it takes a LONG time to get your head round it.
Lots of (((hugs))). Try to have a fun weekend with DH and the kids, just relax if you can, start the ball rolling again on Monday
And ignore your sister. She's just ignorant and thoughtless. Unfortunately life is full of ignorant thoughtless people and you just have to learn to rise above it.

waitingforgodot · 05/02/2010 13:47

Mysonben,
sorry to hear you are feeling down. I imagine it's been an emotionally draining time for you. You need to take time and take care of yourself. Just remember he is still the same child and you have done the best thing to get him the help he needs.
(oh, and can you remind me of this next month when we go through the diagnosis with DS as I know it will be tough)

mysonben · 05/02/2010 14:22

Briochedoree, i agree 100% with you, france has a bad track record when it comes to autism.
I have no direct experience of it, but from what i read on a french site on the asd forum, parents are not happy.
Also my step-sister's ds who has postural syndrome had to wait until he was 7 and had struggled in school all the while with not an ounce of help.
My sister is an idiot, she based all of her assumptions on a guy who works with her DH, (she has not even met him once) who's son has moderate autism, apparently he got dx and help straight away. lucky for him maybe but not representative at all.
It's utter bollocks!!!

Waitingforgodot, thanks . Will remnind you next month . Good luck anyway.

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bubblagirl · 05/02/2010 14:36

i really hope you get some answers soon concrete so you know where you stand it is shocking to have it confirmed i knew a yr before bubblaboy was actually dx but still sobbed my heart out when they confirmed it took a while to sink in but now goodness nearly 2 yrs on we have come out the other side first yr was roller coaster now all is good as all help is in place and the hard work has slowed down as all in place now

Waitingforgodot good luck for next month x

bubblagirl · 05/02/2010 14:38

also sorry forgot to mention sister don't waste your time arguing with people that don't want to take time to understand family included we don't mention anything to certain members as they have no real want to learn and be supportive and understanding its more draining and time wasting to try and get them on your side so look after yourselves for now and worry less about others and what they think you are doing right by your child and yourselves and that is what counts not there opinions

TotalChaos · 05/02/2010 16:06

((hugs)). getting the dx is tough. agree with bubbla, sadly sometimes it's just simpler not to discuss SN issues with those who don't get it and will be unsupportive.

WetAugust · 05/02/2010 18:05

Mild - a term the 'professionals' are so fond is is one the the stupidest adjectives possible to use.

DS has Aspergers, usually a condition decsribed as 'mild' but what is mild about being unable to go out on your own, or socialise, or being constantly in a state of hieghtened anxiety, suffering from delibitating OCD - these are all symptoms of his 'mild' Aspergers.

StarlightMcKenzie · 05/02/2010 18:31

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backtolingle · 05/02/2010 18:45

I'm so sorry your sister was such a cow.

like you say, a bloody hard week.

mysonben · 05/02/2010 21:37

Thank you all for understanding replies.

I have learned my lesson regarding my sister, she just cannot be sympathetic, she is always so judgemental, so i will not be wasting anymore time arguing with her.
I do not have to prove anything to her.

I 'm a bit calmer now , afterall what the paed said we already knew and nothing has really changed DS is still the same little boy as he was last week and will be next week.

Starlight is right, we are lucky to have him, he is a star and without the autism it just wouldn't be him. He probably would be a manipulative attention seeking 4 y old (like my nt nephew).
Life with DS is often a bit of challenge but it is just as rewarding as with any other child, and it surely is never boring!!

I also agree with Wetaugust, 'mild' is very vague, doesn't describe a lot and is not representative of everything about DS.
Yep, DS s'profile is quite spiky, when he is calm and more cooperative and enjoying his environment and the activity he is doing then the problems are low, and we are having a good day. On bad days when he is challenging, constantly stimming and we have much trouble getting through to him, the asd is nothing near as what we could call 'mild'.

My own personal understanding on the 'mild'used by the professionals means that although delayed he does now talk and is able to cope quite well with a little support in certain situations, where another child more severely affected by asd than him would probably have more difficulties.

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backtolingle · 07/02/2010 16:11

Do you reckon your sister has secret/buried resentments against you from the past/for some other reason that prevent her from listening to you and accepting what you say about your own child? Maybe something to do with the "roles" you had in the family growing up?

Or is she just a cow?

mysonben · 07/02/2010 16:24

I'm quite unsure. My sister is difficult to understand at times. She was awful as we wre growing up, very difficult to manage tbh.
My sister has a dx of bi-polar and ocd, she was badly affected by depression in her twenties and ended up twice in a mental hospital where she was dx. My own personnal views are that she displays many traits like Aspergers, although that was never verified by the psy that she saw.
For instance when i or my mum or other relatives tell her about her hurtful remarks , she says she hadn't realised what she had said was hurful, she maintains that she speak the truth and is frank and honest about everything.

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mysonben · 07/02/2010 16:26

Sorry about writing 'mental hospital' should have put 'psychiatric unit' ...just didn't think

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backtolingle · 07/02/2010 16:42

right so this dx stuff probably hits her hard then......... as you say, she's clearly in no state to be able to listen/help.
I wouldn't even try to explain anything to my family! a complete information blackout is the only defence!

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