to think our lovely family wont ever be the same now

(187 Posts)
tigerpug Thu 24-Jul-14 23:34:53

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.

roundtable Thu 24-Jul-14 23:43:00

I have no pearls of wisdom but massive hugs op.

For what it's worth, your little boy sounds lovely xx

backbystealth Thu 24-Jul-14 23:43:21

Oh my love I'm sorry. Just wanted to extend my sympathy for the way you are feeling. Others who know more about the situation will be along soon.

You know, most of us have things that break our hearts kids-wise. Whether it's that our kids have a tic (my dd has a severe tic that she's had for six years - no diagnosis, no help), are struggling severely academically or with frienships, have an additional need, are affected by death or divorce....so many things. It's so hard to see your child suffer...it's a cross to bear. But it can be borne. You'll find a way through this and you and your lovely son will manage this. And he's only three and three year olds often don't have best friends yet or know how to interact socially. Though I realise his diagnosis means things will be different for him.

x

ShotgunNotDoingThePans Thu 24-Jul-14 23:46:57

Tiger I'm afraid I know nothing about having a child with autism (your DS sounds absolutely lovely, btw), but I feel for you in your upset state. I do know that friendship often doesn't come easily to very young children - as well as older ones - so I hope you can stop associating negative friends-related experiences with his condition, if that's the right word.
The Special Needs board might be a good place for your thread - you could ask for it to be moved - lots of wise and supportive posters there.
I hope you move beyond feeling so awful.

MichaelaS Thu 24-Jul-14 23:48:20

hugs

and a bit of a friendly slap to the face - your family will be exactly the same as it always was. Your DS is the same boy as before the diagnosis. Knowing will make it EASIER not harder, as you will be able to target appropriate support and get help which suits him. It will open the door to a lot of positive things, including meeting other parents in exactly your situation and being able to go share exactly these emotions with them and know they went through it too.

My DS1 is awaiting formal diagnosis but in my and his school's opinion is definitely ASD and probably aspergers / HFA. He doesn't "do" other children, he had zero social interest in other children, only teenagers and adults, up until recently.

At 3 your DS is still changing rapidly. He will become more able as time goes on, and more able with targetted support. Yes, he might be different from a neurotypical kid, but some of those differences will be positives rather than negatives. The kind of joy my DS1 gets from going on a bus and reciting the bus stop names as we pass them is so profound to him, and far in excess of the joy available to most little boys of his age. OK so it's a bit geeky but he's happy. I hope my DS2 (who is little and we believe NT) can get such happiness from simple, cheap and readily available things but I doubt he will have the same chance. He will have a different set of pleasures and challenges.

It's OK to grieve. It's ok to be sad about the apparent finality of the diagnosis, and what it might mean for long term outcomes. But he's still your son, and he's going to be fine. You love him and you are going to make sure he is fine. With a diagnosis you will have lots of allies in the school system, the medical system and the autistic community who will help you to do that.

xx

ShotgunNotDoingThePans Thu 24-Jul-14 23:49:36

And groups of kids can be horrid no matter what - hideous for any mother to witness, but sadly, it does happen. Not necessarily related to your DS' diagnosis though.

Whatadonkey Thu 24-Jul-14 23:49:56

Oh love, I couldn't just read your post and run. It sounds very hard but you and your lovely Ds sound just wonderful.

I am a teacher and there was a boy with ASD who sounds very like your boy in my last class. Bit older (y6) but I have known them for a long time, since they were infants. if it's any consolation, he was genuinely one of the most popular and liked children in that class. He struggled with some relationships and could sometimes be very outspoken or overstep boundaries but he had a lot of friends and the other children loved him for being him. However, the children your boy had the misfortune to meet sound horrible. And sounds like you had a pretty bad run of shitty times over the last few days....

Just wanted to give you a virtual hug and tell you that you are brilliant. And so is your lovely DS.

CheerfulYank Thu 24-Jul-14 23:51:21

Oh, honey honey honey. <hugs> I wish you lived by me, we and our DC could be friends. Guessing you're not in the states, though!

It is so hard to see your child left out, even without the added issues a SN diagnosis brings.

IsItMeOr Thu 24-Jul-14 23:52:33

Hi tigerpug. I can very much relate to your sadness. 5yo DS is awaiting assessment for a potential ASD/social communication disorder. A lot of your description chimes with my experiences with DS as a 2-4yo. It breaks my heart sometimes.

The good thing is that you have a very early diagnosis, so that you will be able to try appropriate strategies from such an early age. I am told this increases the chances of positive outcomes in later life.

The sad part is that we never wanted our DCs to have a lifelong condition when we know life can be challenging enough without extra issues. We love them to pieces and worry about what the future holds for them and us. Yes, many - if not most - DCs have something to overcome. But the reality is that it is very hard now, and the possible "it will be alright in the end" scenario seems a long way, and a scary journey, off.

Come over to the special needs boards - there is a lot of wisdom and support there, I'm finding.

Big hugs xx

CheerfulYank Thu 24-Jul-14 23:52:45

And he WILL make friends, I promise you. smile

Branleuse Thu 24-Jul-14 23:53:25

all the best people have autistic kids ;)

its just a bit different. hes still the same lovely boy as he was yesterday. Nothings changed except you know a bit more about your little one and a diagnosis is useful xxx

Tvseemstobemyhobby Thu 24-Jul-14 23:56:11

Have you looked into local autism support groups? I'm not sure whether there are good groups everywhere but where I live there is a brilliant society that offer courses for parents after a diagnosis and I think they also do social events.
Whereabouts are you?

indigo18 Thu 24-Jul-14 23:56:14

I have taught several children with autism in secondary and particularly in sixth form; with all the help you can muster for him he will cope, and older children are remarkably understanding and accommodating, and will cheerfully tell him when enough is enough. I know little about autism, but your boy sounds happy. Well done so far!

SecretWitch Thu 24-Jul-14 23:56:55

My heart goes out to you. I grieved when my son received a diagnosis of Asperger's and pervasive developmental delay at the age of fifteen. My heart still hurts knowing the obstacles and challenges he will face in his life. Our family remains unchanged. We love each other, we support each other, we sometimes fight and upset each other. No matter what happens to any member, we remain solid. Together we are stronger.
My best to you all.

VerityWaves Thu 24-Jul-14 23:57:46

Oh huge hugs your way. I have no practical advice but your boy sounds absolutely lovely. He will have friends please don't worry! It's v v early days.

tigerpug Fri 25-Jul-14 00:01:33

for a fairly straight and unemotional person today has rocked my world. crying in a park, and now crying over a mumsnet thread. right now the tears are much needed and relieving, and mainly down to all of your kind words. I will read all these posts properly now, but I really cannot thank you all enough for your replies, you are all wonderful (sorry, very unmumsnetty, dont worry I wont add a xxx at the end of this)

momnipotent Fri 25-Jul-14 00:07:04

I have been where you are. I first suspected something was up with DS1 when he was three, didn't get a diagnosis until he was 10. Even though I had "known" for so long I was still very upset to hear an expert agree with me.

He's now 12. He finally has a friend, a lovely boy that lives close to us and accepts my DS as he is. He struggles at school academically and we help as best we can.

As time has gone on he has learned to cope with some situations but other issues have come up. Same with all my kids really. As he has gotten older I think the differences between him and the other kids his age have become more obvious.

Having a friend has made a world of difference.

Kids can be awful. My DD who is NT has been on the receiving end of some terrible behaviour which makes my blood boil. DS has been lucky that his experience has not been too bad.

I hope you feel better about things soon. It is just a part of who he is, it might make certain parts of life more difficult for him but nobody really has an easy life IME. He will adapt and learn to cope.

MrsWinnibago Fri 25-Jul-14 00:07:49

Tiger I can't make you feel better after such a shock. But I can tell you that I think knowledge and understanding of Autism is has increased to such a degree that by the time your DS is ten, his peers will all fully grasp why he's different....and he won't be the only one either, there are so many children receiving diagnoses now...there are to my knowledge four children in my DDs class at her primary who are on the spectrum to varying degrees....we understand children so much better than we once did...a
My Dd and her friends understand the needs of the children in their class with DX of various things including Autism and they ARE included and they DO have friends. One boy is very non verbal and he always prefers his own company but one of my DDs best friends since the age of 4 has a DX of Aspergers and DD knows all about it and they play well together. they're ten now and even discuss the DX together.

My best friend's 4 year old is about to get his DX and he is doing very well. His language isn't "in" as much as your DS's...he doesn;t dicuss anything or ask for anything...but he is sociable and has a special friend at pre school.

SecretWitch Fri 25-Jul-14 00:08:21

Honey, it's ok. Tears are nothing to fear. We will be here if you need to chat more about your lovely boy.

plus3 Fri 25-Jul-14 00:12:37

My Ds is 10 and whilst we probably won't ever get a 'label' for him, he has his quirks & has grown into them. He doesn't have a best friend but is happy - teachers always report that he is a popular member of the class ( he doesn't get invited to many birthdays or play dates, but I have filled his week with after school clubs, so he doesn't really notice..)
Your family is yours & what you make it ( & I bet it's lovely) chin up. thanks

WannabeMrsJoshHomme Fri 25-Jul-14 00:13:27

no experience of autism but wanted to second what pp said about him sounding lovely. if it's any consolation, older children do tend to behave like that towards younger children regardless, especially when they're in a group. thanks

WannabeMrsJoshHomme Fri 25-Jul-14 00:13:51

(that didn't sound as consoling as it was meant to, I do hope you know where i'm coming from.)

Alisvolatpropiis Fri 25-Jul-14 00:15:28

I don't have any experience of what you're going through but I just want to say that your son sounds like he is a lovely little boy. The older children don't sound great but hopefully they will learn to be more tolerant as they get older and experience more.

The children your son goes to school with won't be like that, they'll all be the same age and being so young, they'll just accept your son for who he is.

thanks for you though, if you were my friend irl I'd be giving you a hug now

FidelineAndBombazine Fri 25-Jul-14 00:37:25

Your family is exactly the same as it was yesterday.

It is 12 years and a few weeks since I cried in the park. We've had a few challenges (mostly around having to be sharp elbowed to get DS what he needs) but things are going very very well for DS and we have been very happy. Not long now until i'll be driving him to uni and a new (happy) era.

You are welcome to PM if you need to.

katese11 Fri 25-Jul-14 00:43:10

I have skim read but I do feel your pain. ds was referred for asd assessment at 3 and is now 5 and we still don't have an answer (moving schools and boroughs didn't help). Scenes like that used to break my heart and still do. ..ds loves people but doesn't always know how to connect with them. But the longer you have it in your life the more normal it becomes. .. And you just appreciate the times when they do find someone who understands them!

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