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AIBU?

to think our lovely family wont ever be the same now

186 replies

tigerpug · 24/07/2014 23:34

big dramatic title, perhaps less dramatic content (although not for me)

After a year or so of assessments, yesterday our lovely 3 yo DS was officially diagnosed with autism. My head is reeling. I knew that he was different to his peers from a very young age, but after years of reassuring comments like "boys will be boys" etc I honestly thought that I was overreacting/overthinking it all and that he wouldn't be diagnosed with autism.

Yesterday I was told that he will always be autistic, and that it would become more obvious and problematic when he starts school. I do wish the consultant had been a bit 'softer' in her approach, and that I had asked DH to come along with DS and I for support, but in a way I suppose it was a relief to put an end to the 'is he isn't he' debate that played in on a constant loop in my head.

DS is kind, happy, confident - perhaps overly so, which is the main cause for concern. He struggles with the social side of things, he gets overly excited and over confident, which I think causes other children at pre school etc to move away from him, I think he can be seen as an annoyance - loud and bouncy. We are new to the area and consequently I dont have a network of friends with children to conjure up throughout the holidays. He has no real friends, although is desperate for some. He asks about birthday parties, best friends etc, things he hears about but hasn't really been able to participate in. Thinking like this breaks my heart.

With 6 weeks ahead of us, I decided to take him and DS2 to the park today for him to let off steam. He approached a group of older children and straight away joined in their game of standing on the roundabout, whooping with happiness, constantly chatting and babbling and repeating certain phrases they were using (he does this a lot). They looked at him like he was mad, laughed at him, told him to stand on the roundabout and took it on turns to try and knock him off it (by pushing the roundabout faster and faster - before I had to intervene). They tired of the game and then just kept running away from him. He asked me where his new friends had gone. I am not a crier, I am rarely emotional. However, I sat at the side of the park watching it all and sobbing, entire body heaving sobs.

I think I need time to let the news sink in. There are many things to be grateful for, including the fact that DS is unaffected by many of the traits that can go with ASD. But at the moment I just dont feel like I can cope with the constant feeling of sadness for him. I would do anything for him, but I cant get him a friend can i? Or protect him from situations like today, which will happen so many times in his childhood. I have been keeping a brave face as best I can, but husband is away tonight and I am lying in bed feeling dreadful.

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BlackeyedSusan · 28/07/2014 11:34

If nobody has told you yet, and I am sure they will have (not rtft) Blush go over to the special needs children board. they are lovely over there.

Yes it can be a shock. but all is not lost. though I may not have been so positive on saturday when it was ASD central round here.

You are lucky to have an early diagnosos in time for school. That will really help ease the way. (even though maybe you don't feel like that right now) you wil not have stupid head telling you that he will sort hin out in three months...

You may also get a lovely cuddly boy, who sits on your knee and make sure you put in all the capital letters that you are normally too lazy to use! ZZZZzzzzzzz! he has just added the zzz!

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CalamityKate1 · 28/07/2014 12:01

Haughty! Yes Grin

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kimswan1985 · 28/07/2014 12:46

Are there any groups or clubs in the area? Usually find a lot of autistic charities run play schemes and less formal get togethers so ur son could meet friends in the same situation and u can get to know some other mums going through the same things. I teach children with complex special needs, mostly autism and the children are amazing, don't see the label as a barrier for ur son, he will go on to do amazing things with the right support :) x

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onlyjoking9329 · 28/07/2014 17:10

I echo the your child is the same.
I have 3 dc who all have a DX of Autism twin girls 20 and DS 17.
It May seem like a label, but it's also a signpost to support. A doorway to accessing the world, though granted it's as yet uncharted territory.
See if you can find an autism group near you, ask the autism society.

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tigerpug · 28/07/2014 18:45

Echolalia.... Yes Yes bloody Yes!!!!!!! A few months ago this started, it has been driving me up the wall. I didn't know enough to relate it to the other issues we have been trying to deal with. A few days ago I heard of echolalia for the first time.

Its just another thing that makes us stick out. Yesterday a group of older people on the beach were cooing over the boys, then one of the ladies asked DS1 a question and was met with a torrent of words, and from then everything she said to him or us was repeated. 'who does he take after' she asked 'which one of you is the chatterbox'. Sigh. DH and I looked at each other and both had exactly the same thought - do we say (for the 1st time ever) DS is autistic. But we just smiled. We didn't want to make a scene or make the (lovely) old lady uncomfortable.

Today DS repeats every work the decorator says, to his face, continually. Decorator smiles and tries to not get fed up with it. He is a nice bloke. Again, I thought is this the right time to make THE STATEMENT. Nope, i smiled and took DS away.

Im not very brave at this am i!! Feeling loads brighter though, mainly because this diagnosis just seems to have hit at the same time that DS has become so much easier when out. Today I took him to the supermarket, to the toy shop, and to a car garage. He was fab, sweet, well behaved, until he became tired towards the end, but I'm sure thats how all kids are.

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GrannyOnTheSchoolRun · 29/07/2014 03:24

Tiger, you can turn echolalia around on its head by using it as a means to develop on other things. In fact, you'll probably just find it happens naturally.

And re ThE STATEMENT. My son was 6 before my husband could spit it out so to speak, years after the DX, whereas I was the opposite. I'd been telling people even before he got his DX, from the time he was about 8 months old, and if they didn't listen because they were confused as to 'how would she know that at this age, or he looks Ok to me, or what they hell is autism( it was a long time ago), I would stand there with an imaginary toy hammer in my head and hand and I'd tell them again whilst beating them on the head with a hammer. I was so determind for them to know - I was going to knock it into them. {insert daft bugger smilie here]

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stillenacht1 · 29/07/2014 08:37

Yes. Echolalia has been the way in for my boy to start building sentences from learnt words, he has made functional language from it.Smile

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ChoosandChipsandSealingWax · 29/07/2014 14:51

Ditto, repetition of DVDs (Cars, the Lion King) and echolalia of said films helped hugely with his language development. And if I use phrases from the films in context it can help him understand a new situation too. One gets very creative!

Thanks Granny for that link and sorry to drift off topic.

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ChoosandChipsandSealingWax · 29/07/2014 14:54

Ps and lovely pics too granny and videos saintly thanks - sorry your gorgeous DSs have such a tough time of it, you sound the most amazing mothers both of you Thanks

Similarly to the surfing my DH found a lot of sensory calm in skateboarding.

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saffronwblue · 04/08/2014 21:23

How are you all going, tiger?

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tigerpug · 16/08/2014 20:26

Hi Saffron, we are just back from a 2 week holiday with lots of family. It was perfect timing as it took our minds of it all, and everyone there was quietly supportive and sympathetic, even the young ones. It felt like we were in a lovely happy little bubble where we didn't have to worry about/feel sad for DS. Back to reality now though, but determined to enjoy our summer in the park, hopefully without a repeat of the nasty roundabout game!
Hope everyone is enjoying the summer, although heard the weather has been rubbish at home

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