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.

[GrannyOnTheSchoolRun]

SaintlyJimjams, there is just so much truth and wisdom in your last post. Really.


You mentioned RDI and my eyes nearly popped out of my head because its the second time in about 15 hours Ive come across mention of it. The first time was by one of the carers last night at our end of day review and one of the things I have to do today was research it some more.

Whats your experience of it please?

[saintlyjimjams]

I didn't do much RDI - because I found it difficult with a non-verbal child. I like some ideas it has (such as teaching the child to use parents to 'follow' - one of the earliest things I noticed about NT ds2 was that when he was unsure what to do - eg being left someone for the first time - he naturally followed the older kids). I was just working from books and online forums with RDI and it didn't really work for us - because we were just stuck on the earliest phases without being able to move on with no speech & probably at that time no ability to imitate. I thought it looked better for kids much higher functioning than ds1. Having said that, I have now come across someone who uses it successfully with her older son who is much more like ds1 - she has an interesting blog and facebook page which I follow and it seems to work really, really well for them. brightsideoflifeasd.blogspot.co.uk/ I keep meaning to look at it again.

Ds1 is quite unusual for someone with severe autism in that he loves people, likes new places, likes staying in hotels/camping etc and tries very hard indeed to communicate. Being non-verbal his means to communicate are limited - but I found that in the early days when we brought in consultants etc all charging £££'s his lack of communication tended to be seen as no desire to communicate - this was completely wrong - that's always been there - he just didn't have the tools to do it. He couldn't imitate until he was 8, so couldn't learn by observation until then either. His biggest problem now is definitely anxiety - he can communicate well through his talker/sign/pictures/reading words/gesture. And he can wait (that was important to teach) pretty well these days so can access more, he can learn by imitation (also important to teach), so can access a lot - UNLESS his anxiety is screaming - as it was last week (first week of summer hols and it's all different this year) - and then we just survive. Still, we had a good weekend including some swimming in the sea, so I'm hopeful that this week will be better.

[stillenacht1]

Brilliant post Jimjams

[saintlyjimjams]

This is him surfing one winter a few years ago by the way

It really has changed his life.

[saintlyjimjams]

Oh and ds1 hearing that wanted to watch this - which is worth a look if you're interested in surfing. It's a group of severely autistic kids/young people surfing (ds1 is there but looking thoroughly miserable as it was flat - he likes big waves)

[saintlyjimjams]

And actually those videos show one of the best things about autism - you get fast tracked to the nicest people. Those surf instructors have become friends & they truly are a great bunch who I would never have met without autism in our life.

[stillenacht1]

My DS also loves new places, people and noise. The noisier the better- I'm sure he'd have the time of his life at a rave!

[stillenacht1]

Beautiful videos jimjams xx

[GrannyOnTheSchoolRun]

Thanks for that Jimjams, the video was a treat :)


Our boys sound so very much alike. I can relate to everything you've said.
I was reading and thinking oh that's DS as well. :)


Re the communication, I can recall Lorna Wing telling me about 20 years ago that people (then) didn't know if it was a case of 'can't talk or won't talk', and I seem to recall a book that was written with that exact title. She was also the mother of a daughter who was very much like our sons and it gave me comfort that even she was puzzled. I know with my son it's that he can't say more than he does, he wants to but can't, and that the constant same questions he asks throughout the day are as much a desire for him to be actually talking to someone as they are a sign of his very severe anxieties. Sometimes we just sit with him in companionable silence and its amazing at what can still be said. :)

I will try to post a picture of my boy.

[ocelot41]

Yup short and sweet play dates are definitely the way to go, esp to start with. If you have space, a trampoline or climbing frame seems to give a focus to all that energy as well.

Even if it seems to be going well, inch that time forwards gradually as it can be hard for a child on AS to be pushed past his limit and that may lead him to avoid the child he perceives as having caused his discomfort. It can also be hard for a NT child to experience their friend hitting their limits as a lot of those kinds of behaviours can make them feel like their friend doesn't like them any more ( no eye contact, abrupt orders, refusal to share any toys, kicking, hitting etc). So try and avoid that scenario if you can esp at the beginning.

But if it happens, it isn't the end of the world. Be prepared to sit with them and talk with them about what happened and why it happened - kids can be surprisingly groovy and accepting you know! I am now delighted that ocelotcub's friend can now say when he has had enough and it is time for the ocelots to go home. How great is that, to be able to identify what he needs and tell people about it aged 4?

Plus please don't forget the wonderful things your child may bring to others through friendship. For example, some older kids were picking on ocelotcub recently, calling him 'carrot head' because of his hair colour. His friend had no idea why they were calling him carrothead but understood that his friend was upset and leapt to his defence calling them 'potatohead', 'cauliflowerhead', 'hot cross bun head', 'yoghurt head' - all the foodstuff names he could think of according to his magnificently literal way of thinking. Cue two friends falling about with laughter and hugging each other and some very puzzled bullies leaving ...It was lovely.

[GrannyOnTheSchoolRun]

Jimjam, My 7year old grandson is a surfer and has just come back from a 3 day surf school. The video of your son is fabulous.

Silentnacht, my sons loves a good party and can clear the dance floor in minutes with his dancing which consists of a 'tigger like grand ol' duke of york' up and down and across the floor. And one of my favourite memories of him is as a holiday for the disabled in the Uk, it was Disco night, and he was shouting up to the DJ to play YMCA - again!!!! We also have a picture of him at home stretched out on a couch in the garden after a party, he'd gotten tired but there was no way he was going to go to bed so he just found somewhere to sleep. He was lying there like a drunken bum with his jeans round his hips and the waistband of his boxers on show to everyone there. His brothers were teasing him the next day about getting trashed ;) and calling him a spoilt brat cos how come they'd have been grounded for it but he wasn't?

And I do have to admit that we have only ever met with kindness and seen the good side of people in relationship to our son. Yes, there have been perhaps 2 or 3 incidents but for us its only been good people doing good things.

[GrannyOnTheSchoolRun]

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

[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

[saintlyjimjams]

He looks lovely granny

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

[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).

[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.

[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

[GrannyOnTheSchoolRun]

And just to say Im loving this blethering

Im reading the replies and thinking YES YES YES!

[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).

[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.

[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

[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

[stillenacht1]

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

[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?