to think our lovely family wont ever be the same now

[tigerpug]

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.

[tigerpug]

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

[saffronwblue]

How are you all going, tiger?

[ChoosandChipsandSealingWax]

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

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

[ChoosandChipsandSealingWax]

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.

[stillenacht1]

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

[GrannyOnTheSchoolRun]

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]

[tigerpug]

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.

[onlyjoking9329]

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.

[kimswan1985]

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

[CalamityKate1]

Haughty! Yes

[BlackeyedSusan]

If nobody has told you yet, and I am sure they will have (not rtft) 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!

[2ofstedsin24weeksistakingthep]

Sending big unMnetty hugs! You sound as though you are doing a great job. Although the consultant's news was rather blunt, the bit that sticks out in my mind is that they told you your DC would always have autism. If I had a penny for every parent of a child with autism who have asked me when their DC is going to be cured I wouldn't have to work. Lots of parents I have worked with found meeting other parents in a similar situation very helpful. Not sure where abouts you are but I'm sure I know someone who could put you in touch with other mums in the Leeds area if any good?

[stillenacht1]

Even with the echolalia DS is also comes across as bossy and pompous its his tone of voice , quite haughty

[CalamityKate1]

DS: "Dad, is mum the nicest and best lady you've ever been out with?"

DH: "Of course. Although I haven't been out with Amanda Holden yet..."

DS: "I won't tell mum you said that. It would break her heart.

....and then she'd break your legs."

All very deadpan and matter of fact

[CalamityKate1]

Echolalia and repetitive phrases......god I'd forgotten about all that!

Someone mentioned bossy..... DS can be ever so bossy. He forgets he's 12 and comes across as a slightly pompous, officious middle-aged man

[saintlyjimjams]

Oh granny we don't fly with ds1 / for the sorts of reasons you outline but I'm hoping to do some long distance train trips with him when we have a bit more cash (& prob when the younger boys are older - they'd be bored stiff). Scandinavia beckons... Ferries work fine with ds1.

[saintlyjimjams]

Ha! Yes we have problems with elephant memory as well. On the way to the outdoor pool last week we had a huge meltdown because I didn't have a particular CD in the car. We haven't played said CD in the car since I changed cars last September - it was only afterwards that I realised we must have played that CD last time we went to the pool a year ago (& usually he wouldn't really care, but summer holiday anxiety meant it was very important indeed).

[GrannyOnTheSchoolRun]

And just to say Im loving this blethering

Im reading the replies and thinking YES YES YES!

[GrannyOnTheSchoolRun]

has repetitive phrases (which I have to translate and I have to give the correct response)

Oh my goodness, are your me?????? [grin}

We have to do the same, and the answer has to be exactly as it was the previous times which on a bad day can be the same question about 30 times a day, and there's always more than one question.

So this is what I did, I made a dictionary for my son that is now about 2000 questions long because its stretches back about 4 years. The rule is that if DS asks a question, and he has the memory of an elephant, the person being asked goes back to the dictionary and checks the answer before replying to him. Yes, the more common questions can be remembered easily but because his lack of holiday is on his mind right now the questions we are getting because of the anxiety are all connected to previous trips so the answers have to be checked. The definitions are all cross referenced so the answers can be found easily.

I think my next photo will be the dictionaries

[NacMacFeeglie]

I have a dd with aspergers op, which it sounds to me as though your son is similar.

I will tell you right now that I wouldnt change my DD for the world. There is nothing wrong with her, she is just different in the most delightful of ways.

She is nine now and as she has gotten older, she has become even more of a delight. She struggles with friends and gets anxious a lot, but she is also very bubbly, fun, smart and sweet. She knows she has aspergers and that has helped her a lot in understanding more about herself and why some kids might not react to how she likes things very well.

I have three other children and adore them all the same, but she is my first born and she needs me in different ways than they do. As such we now have a very close bond and I am exceptionally proud of her and proud to be her mum.

I work with her aspergers in that when her behaviour is challenging, I think it through. Try to see it from her perspective as basically thats what aspergers is. She sees the world differently and can get frustrated or self conscious when she is struggling to understand.

I work with her strengths. She loves art and is extremely creative. I encourage this in her as it helps her confidence. I talk a lot to her and explain things through to help her get her head around things.

She tends to think she knows best and can be very bossy at times. But she also has a heart of pure gold.

Your family is exactly the same as it was before the diagnosis. In fact its better now because you know you arent imagining things and how you choose to deal with things with your son will change. You can begin to learn how to parent an autistic child and whilst it isnt easy sometimes, its the most rewarding thing I have done. Enjoy your son and find the positives in his differences.

When I was given my dd's diagnosis in all honesty all i felt was relief. Relief for her and relief for me. I did a lot of research and a lot of the things I stressed so much about i began to relax over. I hope you can reach this stage too OP. They really are wonderful children.

[saintlyjimjams]

ds1 has repetitive phrases (which I have to translate and I have to give the correct response). I think they're worse when he's anxious, but part and parcel of life really. One of the books written by someone non-verbal who types talks about it and why they do it (but I can't remember if it's in the reason I jump or Ido in autismland). I think it's a bit of brain getting stuck in a loop (which I've realised is one of ds1's biggest problems - he doesn't have much control over his body, the reason I jump, Ido in autism land, and Lucy's story- all written by people with non verbal autism - all talk about that). I do think severe especially non-verbal/non-fluent autism is a different thing than high functioning autism - and that can be an issue in the early years when they're hard to tell apart (and need different underlying issues helped).

[saintlyjimjams]

He looks lovely granny

Mine loves a party as well. He wouldn't leave his school prom until the very end

[stillenacht1]

Granny

Regarding repetitive questions, yes, we have a LD nurse from CAMHs and she said to me that repeated questions and echolalia is about DSs desire to take part in a conversation and will not always be anxiety related x

[GrannyOnTheSchoolRun]

My son on his cross trainer, with his now 8 month old nephew, and with an easter egg he made himself from scratch