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Things I want to say regarding my child with Aspergers

(17 Posts)
SerJorahsSecondChoice Fri 01-May-15 18:34:12

Forgive me for this post as my ds is very young and only just beginning to start the journey towards a possible (but likely) diagnosis, but these are just some things I need to say out loud before I go crazy!

- Please don't keep telling me that my ds is very young to be diagnosed - I'm well aware he's young. I'm also well aware that a lot of his behaviour (a lot!!) is extremely textbook Aspie behaviour. I am better placed to see his behaviour and what it means than someone who has never met him. Yes your own child might also do one of the same things as mine, but do they also do the other 20 things on the list that my ds does, because it's that that points to an overall picture rather than one habit they share.

- Yes, some of his behaviour might be down to his age, but all these behaviours together point to a bigger picture.

- Please don't tell me that 'we're all a bit on the spectrum.' I know you're trying to reassure me and it's meant with love but even if that's true then my ds is on the spectrum enough for it to make his life difficult; otherwise I wouldn't be worried, would I??

- Please don't tell me that I'd still love him as much as if he was perfect, because he is bloody perfect!!! Having Aspergers doesn't make him any less the adored, adorable nutty little whirlwind, the child I was desperate for and thank God daily for being in my life.

- He is more than Aspergers.

- Please don't feel sorry for me, or him. When you feel sorry for us you make us feel abnormal. Understand that our challenges are different, maybe even harder, but that we still have joy in our lives.

- Please remember that having a son with Aspergers is more that just a word, more than just a name for some socially acceptable, quirky behaviour a la Sheldon Cooper. It means that some days we can't leave the house. It means strangers saying awful things to us in the shops because my ds heard a noise he couldn't cope with and is having a meltdown. It means horrendous, violent tantrums over things so small I can't even understand. It means stress, strain, exhaustion, fear, self doubt. It means so many normal things are out of the question.

- Please understand that people with Aspergers are actually extremely emotional and loving, despite the stereotype.

- Please don't assume the 'obsessions' are all negative. Yes, hearing the same song for the 20 billionth time that day can be trying, but you should see how happy it makes him!! He doesn't sort his animals in a row for hours at a time because he's a mindless little robot with no control over compulsions - he does it because he thinks it's the funnest thing ever!

- Please understand that I can't always take solace in how intelligent he is meaning 'he'll still do ok.' His intelligence will mean nothing if he has an anxiety attack at the thought of being in a classroom with more than 3 people in it, or if he decides not to pay attention in lesson because naming breeds of dogs seems more important to him that day.

- Please understand that today, tomorrow, next year, ten years time if you ask me how I feel I may still be sad, worried, anxious, frightened. I'm sorry if that's boring. This isn't really going to change.

- And please understand that I am truly truly grateful to all those people who try to understand, who want to say the right thing, who speak out of love rather than saying nothing at all. Even if you've ever said any of the things above I do see how you're trying to help and I will always, always be grateful for that.

kojackscat Fri 01-May-15 18:54:04

Brilliant post.

MooMummyMoo Fri 01-May-15 19:08:52

I am in exactly the same situation SerJ. And I could have typed every single word.

It's nice to know I am not alone. And I hope it helps you to know there are people like me out there in the same situation that do understand x

Lesley25 Fri 01-May-15 19:42:16

Exactly how I feel, but put together much more articulately then I could. It is nice not to feel alone too.

jacqui27 Fri 01-May-15 22:46:40

Well said.

Ineedmorepatience Fri 01-May-15 22:48:19

You are never alone on here serJorah we get it flowers

SerJorahsSecondChoice Sun 03-May-15 21:11:12

Thanks everyone. It's exhausting. Dh and I are shattered and feel so defeated some days, and that's without everyone else piling in with their ignorance and uninformed opinions and judging. One person in particular I just wanted to swear at, both creatively and at length. Several people heavily implying that DH and I are either being neurotic, are inexperienced (ds is our only) or are trying to find excuses for being crap parents. Thankfully a lot of people,mthe people who matter, who are supportive and lovely. It's just a pity that the vast majority of people judge first, think never.

But when I got home from work on Friday my DS had picked me a small bunch of flowers, which he presented to me with great pride and solemn love. Watching him sniff them so hard he was almost inhaling them filled me with such love for him. And twice today he volunteered to use the toilet without being bribed or cajoled, so that's excellent progress!

senvet Sun 03-May-15 22:03:06

I would like to read this again and again. People who want to get it right could use this to see how

zzzzz Sun 03-May-15 23:04:55

It gets easier.....but yes, it is a bit exhausting. You sound very cross and raw. Be kind to yourself.

JemimaPuddled Sun 03-May-15 23:19:48

This thread seriously needs to be published flowers
Yes it gets easier (sort of) but I think in part you just get used to permanently having challenges thrown at you tbh grin

SerJorahsSecondChoice Mon 04-May-15 01:31:43

Thank you everyone for all of your kind words flowers It's just so tiring sometimes. I'm fed up of constantly second guessing myself as to whether I'm doing it right. My ds' favourite stimm (aside from his flappy hands) is bouncing. We live in a flat - it feels like I'm constantly telling him to stop bouncing (because someone lives below us). He can't help it, he isn't doing anything wrong, bless him.

I don't think I'm cross - I hope I'm not. I'm scared, confused, unsure, and so tired of everything being harder, you know. So tired. It's hard work. We were having fun today, he was laughing and giggling, then he suddenly hit me in the face. I still don't know why. He knows it's naughty to hit, sometimes I think he knows exactly what he's doing, sometimes I can see there was a trigger (tiredness or over stimulation or fear). But often it comes out of nowhere, or at least that's what it seems.

I think I am a bit upset by a woman telling me he needed a smack this week. That made me angry - I am against smacking. I'm sure she just saw a child out of control, he ran off while I was trying to pay for something at the till and I had to chase after him. Hard to explain that it was because the till had beeped and it scared him. Scaring a child into obedience with the threat of violence is not the same as having a well brought up child.

Do you know the best, best response I got? It was from a colleague - someone senior to me at work I get on with, asking after ds. I told him that we think he has Asperger's and he just said 'Ah, shit, that sucks. Give me a shout if you want to start smoking' (he smokes).

I loved that response! It made me laugh, it recognised that it was a crap situation, it didn't minimise the situation, there was an unspoken understanding, it was direct, it didn't offer empty platitudes but there was an unspoken offer of a sounding board if I needed it, it didn't make him suddenly start viewing my ds as some suddenly different being, it didn't change anything to him yet still acknowledged it was a bugger but not the end of the world either. I don't know, it's hard to explain but it was perfect.

Sorry, that was a bit stream of consciousness there!

Also, I remember when ds was a tiny baby and I read on a thread here whether people would give their dcs a pill that would 'cure' their Asperger's/ Autism if they were offered it, and so many people said they wouldn't. I didn't understand how anyone could say that. Now don't get me wrong - even before all this happened I would say I was one of the more understanding people re asd, but even I couldn't understand why people wouldn't take a 'cure.' Oh my god, I get it now, I really and truly get it. I love my ds unreservedly, as do many people. He's fab - loving, affectionate, hilariously funny. There are some elements of his behaviour I'd like to see less of - the hitting, the anxiety, the fear he so often clearly has - but his personality makes him HIM. Whether that personality was made through a NT process or an Aspie process is actually completely irrelevant - like saying right or left handedness makes a difference to whether someone can write. It doesn't matter how he got to be the person he is, and his personality isn't a 'fault' that needs correcting any more that yours or mine is.

I will always love him - not because of his Asperger's and definitely not despite his Asperger's, but because he is him.

A few weeks ago he was having a meltdown and my wonderful 9 year old niece was helping him calm down. She said to me, 'I don't mind Little Ser Jorah's screaming because he can't help it because he's special.' She was clearly parroting my dsis' words (who is a wonderful person and support, explaining it gently to a child in an appropriate way - 'special' might seem the wrong word written down but it was a beautiful and innocent way that she said it - perhaps you had to be there). She then paused and looked at me quizzically and said 'why is he special?' And I thought, God bless you child (and his other cousins, who are exactly the same in wonderful levels with him) - you literally don't see anything different about him. He is just your cousin and you love him so unconditionally you don't even see a problem. She wasn't asking why he was different - she was confused because she couldn't actually see anything different about him.

Gives me hope.

zzzzz Mon 04-May-15 12:19:59

Most (all?) behaviour seen as a result of ASD is normal behaviour. Actually "why is he special?" is an amazingly insightful question, because for example flapping when you are overwhelmed is very standard behaviour. We see adults do it when their child is hurt or they have tipped the Sunday roast on the floor. What's special about children/adults with ASD is that they experience that level of anxiety with very different levels of stimuli. I find it quite fascinating that they all have common anxieties. How is it possible?

The world is a far more mysterious place than I at first thought.

youarekiddingme Mon 04-May-15 14:19:21

Brilliant post. Wouldy On mind me printing it out to read hand some people when necessary?

And zzzzz very wise words.

AnotherMonkey Mon 04-May-15 14:54:08

I read your post this morning, Ser, through tears. I've had a wobbly lip ever since.

We are in a similar position to you. Our NHS referral is a mirage in the distance at the moment, so no official diagnosis, but we have others involved. I'm not certain what the diagnosis will be.

I don't usually cry about it, I'm particularly tired today (DH is asleep as I type) but your post touched a nerve (or six). Beautifully written thanks

AnotherMonkey Mon 04-May-15 14:55:31

zzzz yes that's quite enlightening, actually

AnotherMonkey Mon 04-May-15 15:02:52

Re the smack in the face... One thing which always catches me out with my DS is that big 'good' emotions can be as disarming to him as the big 'bad' ones at times. I don't know if this is something others can relate to.

ShadyMyLady Tue 05-May-15 14:27:47

Great post, can definitely relate. Especially to your first point, I get a lot of 'yes well my dc does that too'. It's so infuriating sometimes! It's one of those things that only the people living it will understand.

flowers

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