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]

Tiger, I knew when I was pregnant with my son that something was amiss, my pregnancy just didn't 'feel right', and within minutes of my sons birth I just knew he was very different to my other children. He was my 5th child. I even told my friend when she came to visit us an hour later that I was concerned and had asked the Paed to examine him again and my fears were brushed under the carpet.

Fast forward 8 months and I told my friend that I think DS is autistic, that I'd read a half page article in the Womans Own, and I just knew DS was autistic. She told me she nothing about it but she believed what I said, that DS was not developing as expected. She'd had a wee girl who wasn't keeping very well and her fears about her daughter were put down to her being an overwrought pregnant mum to be and very sadly her daughter died of a brain tumour about 4 months after she first visited the DR with her concerns. We had even thought when I was pregnant that what she was going through was affecting my thoughts on my pregnancy. Anyway when my son was about 12 months old we all went on a picnic and her husband said to her later - what is going on with the wee one. It was music too my ears when she phoned me and told me because up until them people were telling me it was all in my mind.

Because of where we live a diagnosis was difficult to get but we were sent to see Lorna Wing, she was a world expert on autism and the mother of a daughter on the spectrum, and she diagnosed him very quickly. She said it was so obvious she could have kept him on the doorstep of Elliot house and said to the taxi driver there's no need for you to leave. My son was no age at all a this stage.

I think if the person you're dealing with has an eye for Autism it can be easy to spot, and that goes for parents who have an eye for it as well due to the exposure they have to ASD.

My son is a young man now and life is very hard for him indeed despite all our efforts but we are at least able to have him at home with us, with the help of round the clock care, and for that I will be forever thankful because life would just not be the same without him.

Your family will be fine, you will travel a hard road at times but for me the most important thing to remember was that no matter how hard it is for us - its always harder for our loved ones.

[singinggirl]

My DS2 has Aspergers, it is hard but;

Your lovely family is the same as before.
Your lovely son is the same as before.

What has changed is that you will now find yourself reading, researching and finding support from other people in your situation. This will enable you to understand your DS better, to help him make progress better, to ask for the right support at school etc.

My DS2 is just as perfect as my NT DS1 to me, and Aspergers is part of who he is, he wouldn't be DS2 without it, so in many ways I can't wish it away. Obviously I wish he had an easier life, but his life is easier now we his parents have been given the key to understanding him better (the diagnosis).

[michellestub1965]

Also you will need to have support from other mums in a similar situation real ones people who you can see face to face who you can off load to and they in turn to you

[Sunnymeg]

There is lots of support over on Mumsnet Special Needs Boards, if you haven't been over there already. My DS is nearly 13, his Aspergers did mean that he stood out like a sore thumb in primary but he is growing into a delightful quirky young man who I'm sure will take his rightful place in the world. Having a diagnosis will mean that it is easier to access help and support from school. It is difficult, but you will get through. My DS was diagnosed aged 5 a couple of days before Christmas and I remember being in a world of pain whilst cooking Christmas Dinner that year whilst he ran around the house with his new toys completely oblivious. sending hugs

[DoItTooJulia]

Hurr1cane that's amazing.

Op, I know a few kids with asd, the oldest is 25 and has an amazing life, lots of friends, a lovely girlfriend, a job. I remember his mum crying like you did.

I hope things work out well for you and your family.

[Hurr1cane]

While I'm remembering stuff someone said something to me once after I got home after a particularly terrible public meltdown. I was feeling embarrassed and sorry for myself.

They said "well imagine how your DS feels, he lives it"

It changed my whole outlook. I'm his support, it's up to me to make things as easy as possible for him. It's up to me to be strong because it's him that has these feelings.

Of course it's ok to grieve, and you will. You'll grieve for what you thought was going to happen.

Then you'll look at your amazingly strong and happy little boy and think "I'm doing a good job, he's happy and he's safe and he's amazing"

[May09Bump]

Maybe have a look at some support groups - you could share experiences, ask questions and maybe build up a social group there. Also, maybe consider joining cubs when he is old enough - they seem very inclusive and maybe a different experience if the kids are focused on tasks.

You will adapt - you are a mum, and that's what we do :) My DS hasn't got autism, but still finds it hard socially sometimes - it's hard for me to see and it must be so raw for you with his recent diagnosis. Wishing you all the best!

[allisgood1]

Please please look into ABA for your son. ABA is brilliant when it comes to teaching social skills.

[BalloonSlayer]

Your little DS sounds lovely. Those kids on the roundabout sound horrific - you'd want to worry if he grows up like that!

Most three year olds don't have a best friend. Or any actual friends - just people they play alongside. Give it time.

I know quite a few older children with ASC and they manage very well. I am often struck by how brave they are, because they find so many situations stressful and scary but grit their teeth and carry on.

to you, you sound like a wonderful Mum.

[TSSDNCOP]

We had the same day you had with DS. It breaks your heart then you realise if you get your big girl pants on fast you can shape the future. It's time to find DS a good school where he will be accepted and taught to thrive. Work with the school and DS, you must be a holy trinity of understanding and support. Find your local support groups; parents who know what they're talking about.

He will find a friend at school, kids are usually more accepting than you think. You may need to give him more support on acceptable behaviours. But I'll bet you a pound to a pinch of shit there'll be at least one other kid in his class with a mum just like you.

Finally get over to the SEN board. Those women know their stuff and are always there.

Good luck. It's ok xxx

[Hurr1cane]

Do look into ABA and read blogs about it by autistic adults, and make up your mind. But it is expensive and it is entirely possible to do things yourself with a bit of research and a lot of patience

[Summerblaze]

My DS1 has developmental delay and moderate learning difficulties and didnt speak properly due to severe glue ear until he was 4.5. Now at 6 he has finally got a statement and a 1:1 TA.

When he was about your DS's age, he went to nursery. He didnt ever mention any friends although i knew he occasionally joined in or tried to with games etc.

One weekend we had all been invited to a soft play area for a family members party. When i walked in, who should be there but most of DS's nursery class for a childs party. I was devastated that my lovely, funny child was not invited. It wasnt because i didnt understand. The child was not friends with him as my DS didnt/couldnt speak to him or understand what he was saying. It was that i could see this happening through his whole life and he would never have friends or have a life.

Fast forward to now. He has learnt to speak although delayed and understanding is massively better. He is very excitable, mega friendly and a handful at times. BUT.......he is the most popular child in his year. I am not doing a stealth boast. It is just true. I have party invites for boys and girls coming out of my ears from his class and the other class of his year. On our walk to school, he gets said hello to by kids of all ages who i dont even know. My DD (10) just doesnt get why he is so well liked as she thinks he is horrid as only a sister can.

Your family will be fine. Your DS sounds lovely like mine. He is still your boy and things can change.

Hugs to you. I have definitely felt like you.

[GrannyOnTheSchoolRun]

as she thinks he is horrid as only a sister can.

My other children, the eldest is 36 today, dont spare the teasing when it comes to their youngest sibling. How they tease each other, they tease him. He doesnt understand most of it given his level of difficulties, but he know he's been teased because they ham it up with body language and tone of voice and he sits there very much part of them. His face just screams, I'm in the gang. They also make me laugh when they come in and say, hey dude, no hi jinks to day cos I don't have a run around the garden in me. My son laughs as well. We all laugh cos as hard as it is at times we still have great laughs and lots of complete and utter joy.

[ICanSeeTheSun]

Ds is asd and I felt like I was hit by a jumbo jet when he was Dx.

Life is hard, but since his Dx I have found it a little easier because I know what I am dealing with.

[Shockers]

I cried at a music festival when a lady told DD off. I still remember how utterly helpless I felt and the knot of misery inside me.

What I did after that was lose anyone who I didn't feel understood our family and I surrounded myself with easygoing folk who loved her for what she was.

Moving to more of a village location ( well, small market town) helped a lot, as did joining a support group for parents of children with additional needs.

We socialise as a family, with other families, so DD has a circle of friends that have become used to her quirks and know that she doesn't understand jokes at her expense, so they avoid that sort of play. We camp with these families too.

It's working for us in a way that I never thought possible at the start. I spent a long time grieving for the daughter I thought I'd have, which wasn't fair on either of us... I even thought she'd 'get better', despite being told she would plateau at 7 ( not ASD, she has different SN).

In a way, we've retreated from 'mainstream' life and tailored our life around DD. It's brilliant though... I've never been so content and she has a wonderful life.

That method works for us, but it might not be for you tiger. You'll find your best fit and it will be wonderful.

xxx ( don't care if it's not the done thing!)

[lady1980]

Sending big hugs to you xx no words from me , xxx

[MagicCarpet]

Your lovely family still sounds pretty lovely to me.

Your boy sounds wonderful, and I must echo what others have said about 3yr olds not having best friends, lots of parties, etc.
I think most parents have felt that ache of seeing their kid being excluded or disappointed in some way - it's hideous, and I can imagine it hit you like a tonne of bricks in the park that day. Big hugs for you, you sound great and very strong, and I'm sure your lovely boy will be too.

[DonnaMoss]

Op I get how you feel. My lovely dd2 was diagnosed at 3 weeks old, not with asd but a brain disorder that could present very similarly to asd. Except they cant tell us if it will or if she'll have more physical difficulties. Shes 8 months old now and its becoming obvious that shes very delayed and not altogether 'present' some of the time. Im due to go back to work in a month and they are expecting 'me' back but the truth is that this has fundamentally changed 'me'.

It hits me every day like a train. And it sounds awful but I am grieving for the baby I thought Id have when I fell pregnant. But then I look at her little face and remember that this is the baby I was meant to have, and she beautiful and I love her and thats all that matters. I thought Id be ok with it all by now and I suppose I am getting there but it will take time.

Just take one step at a time, one day at a time x

[dawndonnaagain]

Ds2, diagnosed at five. Loud, overly confident, used to correct the teacher's spellings, we had to move schools because the staff bullied him. He's 19 now. He's at uni. Got an overall first for his first year. Great stuff. However, it's not all been plain sailing, he was badly bullied in halls initially and had to be moved. He does though, get a lot of support from the university. I'm proud of his first, but I'm far more proud of the fact that he's housesharing for his second year, and not in halls. It means he's made some friends, friends who understand and accept him and his (really quite violent full body tics) and his facial tics and his Aspie way of interpreting and dealing with things. They have even offered to take over some of the nightly cooking duties (he rings us and we direct him) without taking over.
He still can't cross a road safely, he is far too trusting of strangers still (uni rang me recently) but in general he's doing bloody well. He went away for an academic year and he's back and fine. He'll be doing it all again in September.

[IsItMeOr]

Also wanted to echo what others have said. It is perfectly normal not to have special/best friends at 3. Mostly children are socialising with the children of their parent's friends at that age. Which may include children who they see every day at nursery.

The familiarity that some of the children who see each other very regularly develop, can appear like friendship, but it isn't really the same thing.

5yo DS was very similar to your DS in that, at around 2, he seemed to become desperately keen to play with other children, but didn't have the skills to do that. At that age, neither did any of the other 2 year olds, and also the vast majority weren't interested either.

What I found helped at 3yo was to play alongside DS at a softplay or sandpit, and often another DC would latch onto me - as they tend to like playing with adults - and we would get into a cooperative game. This seemed to satisfy DS's need.

As he got older, it also seemed that if I was there to broker the initial introductions, once they got into a game, they would be fine by themselves.

DS is actually better with DC he doesn't know. I suspect it is because it is a more superficial contact, and as it gets more complex (when it is children he sees every day at school, for example), his difficulties come to the fore.

[FancyAnOlive]

Diagnosis is very hard. My dd1 was diagnosed with autism at 4 and even though I knew it was highly likely, I still felt devastated. It takes away that chance that you might be wrong, doesn't it? I went through a period of grief which I think is really common. BUT I came out the other side. And you will too. Lots of hugs to you. Come over to the Special Needs boards - chat and children - there are so many of us with kids with ASDs. I have taken great comfort from others in the same position. And the great thing about diagnosis is that now you can move on, you can stop the endless 'is that asd or not' in your head, you can get help and support.

[racingmeerkats]

My DS was officially diagnosed at age 8, although I knew it much earlier than that. It's good that you've managed to get a diagnosis at a young age, early intervention can make a huge difference. I also went through a period of grief, and seven years on I'd say that my family definitely isn't the same. Our lifestyle and needs are so very different from that of my NT nieces and nephews, most of my parent friends now are those who also have dc with SN. The gulf gets wider with every year, he is far behind his peers now (not academically but socially and in terms of independence). I've invested a lot of my time in ensuring he gets the right support with education, benefits and support - I'm unlikely to work again as he needs life long care. The future I have to think about for him is so very different from the typical worries that parents have. He goes to an excellent special school dedicated to students with HFA and that has helped a lot. If there is one bit of advice I'd give it would be to get the education side sorted, using advocates/legal advice if necessary.

[frankblackswife]

Hurr1cane -that made me cry! That's it exactly!

[Hurr1cane]

The woman who wrote it must be some sort of genius. She got the feelings down in a great metaphor

But yeah OP. Welcome to holland. It's bloody brilliant here