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.

[JJXM]

My DS was officially diagnosed at 3.3 years but professionals had told us to expect a ASD diagnosis up to nine months earlier (he's a very classic presentation). In one of the assessments he moved around the room as if no-one was there and would not make eye contact and screamed if anyone approached him. The EP was quite blunt in that he needed a lot of help and could have some learning difficulties. I walked out of that assessment and cried feeling very bleak about the future.

One year on and DS is like a different child - he makes eye contact, has some limited speech (under 15 words), will be affectionate and will initiate communication. He gets DLA and our tax credits are topped up because of this and it makes like much easier. He also has a statement and will be going to an hf ASD special school. He has no intellectual disability and is in the 10% of savant children. And those things are really great - but they didn't stop me being in floods of tears when only my DS was excluded from a whole class party.

DS's pre-school have done an amazing job and all the children just accept him as himself - he'll point to objects on the shelf and his little friends will run up to the nursery worker and say 'DS wants this'. They treat him like every other child but he just happens not to speak. But I'll give you an example of him at nursery. About six weeks ago DS discovered Peppa Pig and we got him a small stuffed toy. This became his security object and he'd take it with him to nursery and Peppa would be in his hand all day. About three weeks later when picking him up I noticed lots of children were carrying little Peppas - they had seen DS with one and then it became the cool thing to have!

[TheAmazingZebraOnWheels]

Everyone saying they like the Welcome to Holland piece (I like it too) have you read Celebrating Holland - I'm Home by Cathy Anthony? It might be a bit soon for you OP but I hope one day you'll find the peace she writes about here
^
I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger,the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.

Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring.

Holland wasn’t so bad. I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land.

Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today? Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts. I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!^

[duchesse]

Thing is, nothing has changed for your DS. The only thing that has changed is everyone else's perception of him. And having a diagnosis should help him more than hinder him.

Of course it's going to take some getting used to- you are his mum and of course you are worried about the future. But he is who he is and who he has always been.

[Quangle]

some lovely posts on here. And just to echo what others have said - you are processing lots of information here and it's no wonder that it overwhelmed you today. And that at three it's unusual to have proper friends so what you saw today might be a function of age as much as his diagnosis. You saw it though and it hurt you - that's because you are a lovely mum to a lovely family where things happen and people care about each other.

You spend lots of time as a parent trying to make the outside world more manageable for your DCs - those with special needs but also those without. It's a constant struggle and SN makes it much more acute but we are also going through some of what you describe in your last paragraph with a child in our family who does not have special needs. We all feel as though we are missing a layer of skin atm - just trying to help him find a groove when the world keeps jostling him and pushing him around. He's had some horrible times recently. The world can be tough but that's our job as parents - to help them, shield them a bit, and help them find their own groove (eventually - not at three!)

Just posting that so you know you are absolutely not alone. Your boy sounds lovely.

[x2boys]

Hi op its hard isn't it ?my ds was diagnosed with autism and learning difficulties last Xmas he has/just turned four for me I,m still struggling to accept it but I have found parent support groups invaluable my son also has/a rare chromosome disorder which his paediatrician believes is probably the cause of his autism I have read welcome to Holland and the follow up but for me the poem Amsterdam international was a/bit more realistic I can't do links I,m afraid ! My son starts a special school In September its the best place for him and I have visited it its lovely but I still get a bit tearful he won't be going to school with his big brother give yourself time op its difficult but your son is still your son .

[Hurr1cane]

Amazingzebra. I had read that but forgot all about it! It's such a lovely metaphor.

[Aeroflotgirl]

Oh tiger I want to give you a massive hug. Your little boy is the same as he ever was, and so is your family. My dd 7 has a dx of ASD, speech and dev delay and goes to a special school for children with Autism. Look at the positives, he sounds very sociable which will stand him in good stead in school, my dd was not and hated parties. She was invited to many parties at preschool and reception but did not like them.

Those kids were nasty bullies, I bet they would have treated any other young child like that. I am sure they did not know your ds has Autism. Big hugs

[ChoosandChipsandSealingWax]

yes welcome to Holland (thanks Hurr1cane for posting it - I read it just after diagnosis as they put it in the info pack they gave me and it has always stayed with me).

DS2 had just turned 3. I remember going to the opera the next day to see La Boheme and being on such an emotional roller coaster I cried all the way through. I remember I had bruises all over my arms and face from where DD had bitten/hit me when melting down. The next week I got asked by our priest if I was in a domestic violence situation.

Fast forward two years and we are in a so much happier place. DS never bites or hits me anymore. He rarely hits strangers anymore - instead he spits at them, which is also awkward, but, the point is he realises that violence is wrong and stops himself now - it's progress! He will now generally make eye contact with people, and sometimes (mainly when he's happy/excited about something) talk to and interact with strangers. He's settling into a mainstream primary (too early to tell if he will cope yet) and making progress. He can write his name, he will now interact with his classmates rather than just hitting them, and actually, he's quite popular now and starting to have a few friendships. Although he has been excluded from a couple of parties (of course - you so have to grow a thick skin) - he has also been pointedly included too. And asked on a couple of play dates (thank you thank you kind parents. You have no idea how much it means to me, and how happy it made him). He can't play with his peers like others his age - he's more like a three year old, parallel play etc - but they had a lovely time and lots of laughter.

You also asked about telling people. Perhaps give yourself a little time to process it first if you can - it may be that you already told people that you were going to the diagnosis appointment in which case obviously they will ask you. I made the mistake of telling my DM about the appointment and so obviously then had to tell her. Much as I love her she is a huge drama queen, and I arrived at her 40th wedding anniversary two days later with her having already told everyone, including random friends of herd I hadn't seen for 20 years. I spent the whole party with people coming up to me and asking about it and was too raw to have the strength to tell them to shove off. It was awful, I just wasn't ready for it. But these days generally I'm pretty open about it. Most people are understanding, some, not so much, but tha says more about them - it used to really upset me, but now I can shrug it off.

The main thing is that DS is a very happy and loving little boy. Life is tough for him, and I sometimes wish things were easier for him. But I wouldn't change him.

Good luck OP.

[fromparistoberlin73]

Hugs

right now you are very raw and fragile and sad

its will get easier- and I know you will get great support on here

he sounds lovely, he has a great mum but its tough and you will need times to acclimatise yourself OP xxxx

[ChoosandChipsandSealingWax]

(I meant DS biting/melting down, not DD)

[coppertop]

I'm about 10 years down the road from you.

My 3yr-old ds was diagnosed with ASD. It wasn't really a surprise as he didn't really talk, had no interest in people, and very much liked to be left alone to do his own thing. Expecting it didn't make it any less of a shock though, if that makes any sense!

He's now 14yrs old and already has plans to go off to university. He's doing very well at school and has even found friends. One of them is virtually identical to ds, even down to their choice of clothing and somewhat devious methods of evading social occasions where possible.:o

It's been a heck of a journey but I can honestly say we've had many laughs along the way. It's a different version of reality but it's been an interesting one.

[EyeMyrrhSlapHer]

My son goes to a school with a specialised Autism unit attached. Both sets of kids spend a lot of time with each other in class and they all get along fantastically with both groups learning a lot from each other.

Your son sounds wonderful. Today your family is the same as it was yesterday.

[Holfin]

Hurr1cane thank you so much for posting that poem, it had made me smile for the first time today. OP feel free to PM me if you want. It would be nice to be in touch with someone going through such a similar thing.

[shoofly]

I cried after a similar type of incident in a park. I also cried after Ds1 got his aspergers diagnosis. It was just before his 7th birthday - he's now 8.7. I wanted to argue with the things they said about my funny, kind quirky boy. It gets better - your lovely boy is the same as yesterday and your family is the same. What has changed is that you will be able to access help for your son. My Ds is great. Sometimes I tell people, sometimes not. He went to a lego summer camp this week. In a room full of lego nut boys he was perfectly normal. He has friends at school - his school report mentioned that he was a kind and popular child. He is isolated where we live, the other kids fly up and down on bikes and he's a little uncoordinated and not confident enough about riding his bike. He's also a bit too full on with them and they don't know him well enough to 'get' him.

Most people worry about their kids - nt and with other needs. It's all a bit raw at the moment for you but hang in there.x

[bronya]

To reassure you a little: I taught a lovely little boy in Y2, who had a diagnosis of autism (sounds like a similar sort of thing to your DS - not too severe but still a problem with friends, social situation, change etc), and what that meant, was that the school had specialist advice to help him with the daily routine, friendships etc. He started Reception and did struggle a lot, so had a 1:1 TA (who was trained by the specialist to guide him in his interactions with others, teach him specific things etc). In Year 1 that TA was gradually phased out and by Y2, yes he was a little 'different', but no more so than many other children, just in his own way. He was accepted and loved by his class, they looked out for him and helped him in his interactions on the playground and in groups.

What made school (and friends) a success for him, was this early intervention. His parents were pro-active, the school was pro-active, and he got the support he needed BECAUSE of the diagnosis. He was a delight to teach in Y2, and has continued to thrive as he has moved up the school.

The diagnosis is a positive thing, because your son can get the help he needs. Where the 'natural' social skills are not present, you can teach them how to react and what to do, to help them to respond appropriately with others. There is so much help out there, and so much you can do for your son.

[ChoosandChipsandSealingWax]

And I forgot to say hugs

Diagnosis is a really tough time, try and go easy on yourself and don't expect to take it all in immediately. I was up and down for months, and definitely as others have said had a grieving period too - I could have written your OP at the time. It was also very hard on our marriage as DH didn't really accept the diagnosis at all for at least a year. He still hasn't read a single book about it. So that was tough too but we are finally coming through the other side. I have learnt so much about how to handle him and his meltdowns an as a result he is so much happier and having many less and less severe too (we used to get meltdowns of at least 20 minutes at least five times a day, now only once a week in his usual routine, more if we're doing things he finds stressful). I feel so much more confident with him and enjoy my time with him so much more. You will have some hard times but also it will get easier.

Your DS sounds a lovely kid and the fact that he's verbal and sociable is a huge plus. Lots and lots of hugs. Xxx

[Hurr1cane]

Oh the violence. The violence almost sent me over the edge. My lovely long hair is now a short bob because most of it was pulled out. But the violence was just a symptom of the horrific anxiety he felt. Now he can communicate a bit, tell me when he needs to leave somewhere etc. It's all but stopped.

I do still feel bad for him. Autism isn't all he has though. The other stuff has no good sides. Only horrific seizures and regressions and medical tests.


But I wouldn't trade him in for all the gold in the world. He is my life.

[PunkrockerGirl]

No experience/advice but sending you and wishing your lovely family all the very best x

[ChoosandChipsandSealingWax]

Hurr1can sounds really tough. Hope you have good RL support and that you manage to get a break for yourself sometimes too. Your DS is very lucky to have you.

Can't remember who posted the other Hollland and Amsterdam links now but thank you for that, hadn't read them yet, will look them up.

[ChoosandChipsandSealingWax]

And yes the violence was at that time the only way he had if communicating to me the utter overwhelming terror he was suffering. It got much easier once he learnt to makaton "home". He will still often bare his teeth at me and growl "I bite you Mummy" but he doesn't have to actually bite me, because having told me he's feeling that way, I can help him - and now I know so much better how to too - yes, diagnosis has been the door to so much help. OP - if they offer you a chance to go on the Early Bird National Autism Society course, do going you can - it's brilliant. Also helped me meet other local parents in the same boat who I now see regularly and are a great support.

[CalamityKate1]

Tigerpug - I never do this but

My son, 12, has Aspergers. I can say hand on heart that if I was offered a magic wand to make his Aspergers go away I'd struggle with the decision.

He's absolutely amazing and the nicest person I've ever met. I utterly adore him just the way he is and so does everyone who meets him.

It's always a shock when they're diagnosed, even if it's not a surprise.

Be kind and gentle to yourself xx

[WaveorCheer]

Reading with interest as my 3.8yo is likely to receive an ASD diagnosis soon. I'm afraid I'm much more cynical than some of the posters of older children. My life feels shit at the moment, I can't see any fucking upside of this debilitating neurological condition and I hate the fact that I flinch away when my DS rushes up to me. I hate being bitten and scratched every day and even a simple trip to the park is so stressful when your older child randomly bolts from the park twice a visit.

I don't recognise the Holland poem.

[itiswhatitiswhatitis]

Welcome to Holland is a bit like marmite WaveorCheer, people either love it or loathe it. I'm not a fan of it at all but others take comfort in it.

[OOAOML]

My son got diagnosed with Aspergers last summer. I cried so much in the first few days, it was almost like a grieving process. The day after the diagnosis we were at an event with a massive inflatable slide and he had a massive meltdown at the top of it. I didn't know how we would cope, everything seemed so uncertain.

But it got better. We got more information (the leaflet we were given at the diagnosis was pretty much useless apart from the reading list it suggested). And we have regular meetings with the school where we can talk about strategies and catch any problems. He'd had issues with other children before, hut once we got the diagnosis it was so much easier to get the school to sort out situations (he wasn't being bullied but it was getting that way). After a while you can find that the diagnosis really helps.

Be gentle with yourself. Don't be afraid to ask for help.

[GrannyOnTheSchoolRun]

I just came back in to say thats its entirely possible for the likes of Welcome to Holland, and all the other pieces out there like it, to do absolutely nothing for a person and for it to be ok that it doesn't.

I dont get it and never have.