Grieving for the non-autistic child that never was

[GladioliBuckets]

Sympathy thread for people starting out on autism assessment/realisation/suspicion - I know from experience this is a process parents have to go through. Join me if you like, I just need to get this out of my head.

V early days here, waiting for DS2's 2yr check-up with HV next week, but DH & I are starting to think we have another bit of autism under our noses. DS1 was always peculiar and was DX'd at 3 1/4 with AS. DS was born 3m later and I was so sure he was perfectly 'normal'...

I'm not going to go into signs and symptoms here, just want to note down that as of today, I'm a bit sad. Sad because I'd so been looking forward to real interaction and conversation by now, that I'd thought of him as my reward for all the hard work we'd lived through with DS1, that I was going to find out what it's like to have a normal little boy.

And whilst so far he's a doddle compared to DS1 and I know I should count my blessings, it still hurts to let go of that fantasy child that I was so sure I had.

Thanks for listening.

Sending big hugs, I know how difficult a journey it can be. We have one child, a beautiful amazing little girl, she'll be 3 in November. After a year's journey tomorrow we will finally find out from the multi-agency team (after having had a DISCO assessment last week) what she has but we know if you know what I mean.

But you know, it is possible that your DS2 may be NT or even if he is AS he may be chattier or have very different strengths and weaknesses.

I wish you and your boys blessings and good luck with your health visitor.

Grieving is part of the process of coming to terms with having a child with SN. I found it harder to accept that DD2 probably has AS that I found it was to accept DD1 being formally diagnosed.

I, like you, had consoled myself with the differences between them as babies and was convinced that DD2 was fine. DD1's diagnosis was a ticket to help that she desperately needed. With DD2 it's just made me realised what problems are in store and that's made it a whole lot harder.

I guess everyone has to say goodbye to at least a part of their fantasy child as their real child develops - even healthy, able, NT children have their problems.

I love my girls, they're my reason for being but the future isn't quite as I'd imagined and that's something I have to come to terms with.

We are not going through dx but we have been there twice with both dd's (6 and 4), with dd1 it wasn't too bad as we knew from a very early age that she was different, it took 1.5 years to get a dx of Aspergers. When i had dd2 we thought she was nt child until she was 2 and our GP referred her, it turned out that dd2's autism is more severe than her sisters (dd2 was non-verbal until 3.2 years old). I found the dx very hard.

I still find it hard when i see young children having a convosation with their parent (something i can't do with dd2) but i feel the bond between me and the dd's (probibly more with dd2) is so much stronger then it would be with a nt child. They meen so much to me, we have been through so much in the past 3 years that i feel its made us stronger.

Good luck to all of you going through the dx process. xxx

we have just been through the diagnosis or to say just the intial assement once the assement was completed i asked the Dr so do you think my son has autism and her answer was "oh there is no doubt about it he is certainely autistic" it sounded very harsh how they can just clearly say to your face that once my perfect little son has additional needs its very hard to accept. he is 3 yrs and 4 mths and i have been raising alarms of something being wrong since he was 14mths but we have to wait another 6-9mths to find out what kind of autism

Just had HV over for 2yr check and she has given me what I wanted which is referrals to audiology and paed. She agreed that while DS2's vocab is ok and his lack of 2word sentences not that uncommon, combined with his poor interaction (and our genes) it's enough to refer (he's friendly enough, he just doesn't ask or answer questions, therefore doesn't follow verbal instruction).

Such a relief when HPs listen! Actually I can't complain, Southampton is a great place for DX and SN (adults too). Everyone should move here.

Can I join you? We're going through assessment for ds (3.4) - pretty much reconciled to ASD despite no dx yet. And we're about to embark on ABA (regardless of when/what dx).

Great that your HV is supportive. I wish mine had been on the ball at ds's 2 yr check - might have prompted me to get my head out of the sand and do something about it rather than making excuses for his unusual behaviour .

Your ds does sound a bit similar to mine at that age - speech/vocab pretty ok, and basic 2-word sentences but not much in the way of social communication, and limited interaction. I really did tell myself he was just a bit stubborn (ignoring the obsession with spinning things, traffic lights, washing machines etc ).

Do you have any idea how long you'll wait for first appt? We were first referred in March, have had one appt with general paed, still waiting for appts with social comm. clinic, salt and audiology.

I have dd of 10 months, who I have to say seems so different to ds at that age (with hindsight), so I'm thinking (hoping?) she is nt. But you never really do know at this age do you, as you have said. Then there's the terrible guilt about 'hoping' your child is not autistic - as if you'd love them any less anyway. But I totally know where you're coming from about the 'grieving' . Un-MNetty hugs to you.

Waiting for assessment for DD2 here. She's 12 and I've been in denial for years. Just pottering along, making excuses and dealing with her quirks. I'm fairly sure she has aspergers, not 'that bad' but bad enough to make life hard for her (and the rest of us).
CAHMS referred her to PDDAG last February.

Bialystock Have now been told the Paed referral can't kick in until the hearing test is done which is a 13-18wk wait.

With DS1 the whole process took 12m:
May07 Initial GP visit
Aug07 SALT assessment (referred by SALT)
Nov07 First Developmental Paed appt
Feb08 Ed Psych visit (referred by Paed)
Apr08 Multidisciplinary assessment course (1 morning/wk x5wks)

Since his DX we have realised that both grandfathers are on the spectrum!

My DS has CP, rather than ASD but still I can't see a point when I'll ever stop feeling 'IT'S SO UNFAIR, WHY DID THIS HAPPEN TO US'.

I'm due to give birth to second child in 6 weeks and am beyond anxious. Even if everything goes ok at birth, because I'm so alert to the range of SNs I'll always be terrified there's something wrong. I honestly don't think I or my husband could cope with another SN child. I love my DS but I just want a tiny bit of what everyone else has. THat's not too much to ask is it?

Nope, you're just human Sookie.

There is definitely a grieving process and it's something which I've never seen mentioned in support for parents of children with autism, let alone taken in to account, sadly. It's almost as if it's one of the last taboos when it comes to SEN children.

I was reminded when I came across the report on DS today that, at the feedback, we were ushered into a room with about 10 professionals ranging from learning support assistant to clinical medical officer, many of whom we'd never met before (and have never since!) straight after having the news broken to us I'm sure it was meant to be reassuring to see the amount of support available but not when you're trying to keep the tears back.

I think I already knew in my heart it was autism but it's so at odds with the part of me which felt as if I would giving up on DS if I didn't think otherwise, IYSWIM. Thankfully I think I'm at a stage now that, while it's sad, I know there is no parallel universe with a "normal" DS in - they were always one and the same person. The precious moments I looked forward to before still happen, just in different ways :)

Thanks so much for that post mumi, it was pretty emotional as every word could have come from me. 'Cept it would have been waaay less eloquent

I grieved and I grieved hard. And I think that was a pretty rational response. Pity others disagreed and thought I should consider myself blessed. There are always others worse off dontcha know (as they skipped off with their NT kids)

Lucky I'm not bitter (ahem)

Yeah I was lucky that I did my grieving before we got DX but even though you look at them and realise they haven't suddenly changed into an alien, you're still allowed to be sad.

Mumi that's shocking about having to deal with it all in front of a panel. We were given DX and told to come and rejoin the parents' group whenever we were ready. I was totally cool up til then but once DH & I were alone I did cry simply because it was a watershed moment, a switch had been flicked and couldn't be flicked back.

Gladi

I don't think I ever will stop grieving really but I was lucky that I managed to get to see a council pyschologist for some treatment cos I was such a state in the early months. She did highlight to me that a large part of it is about grief, because you've lost the life and child you thought you would be having. But you're right, it's not spoken about very much - -too many people telling you how 'lovely' your baby is and how 'you'll love him just the same'.

Penny for every time we've been told that...

First, large cups of tea for all on here.
I'm on the autism spectrum. Not mildly, either. So is our ds who is 18 in a few weeks. So is my dh and many of my friends, colleagues and acquaintances on all parts of the autism spectrum.

I started off just repeating language, not able to play with others, rocking obsessively, collecting obsessively. I didnt have a friend in the world. I now have a job I love with colleagues and friends in my life that I care greatly for, and a family who are just so fantastic. Eccentric, sure - but fantastic. Has it been easy? Heck no, but who says an easy life is always better than one will challenges in it?

DS started off with very few words of any sort until he was 3.5, He would flap obsessively for hours, violently fight against any contact, have no interest in interacting, be totally transfixed, run away, escape, fight, hit, kick, scream for hours... I was exhausted beyond measure and stressed beyond all limits (back in the days of zero help...)

He's now got 9 GCSEs, good friends, he's a school Prefect and Head of House, a national level rugby player. We found answers. So many people wrote him off, saying he was stupid and would never be anything or get anywhere.

Please don't think that a diagnosis of an ASC means that your child will be nothing but tears and shock. The tears and shock will fade, and you'll be amazed and astonished at what many of us can do, and what all of us bring to this world. The old stereotypes of "autism = never more than hopeless lack of empathy and no friends" are passing, and there is hope aplenty in new research and new ways to help us learn and to explain our world and our needs to others.

Is it right to grieve for the child you didn't have? Of course. Will every child have a good future? Nope, but many on here have argued that even the most normal of children can end up having disastrous and pain-filled lives through no fault of their lovely parents. It'll need more thinking about, that's for sure.

If I had one bit of advice from the last 18 years and all the children I've seen grow and thrive (whether verbal or not, whether low IQ or high), please don't despair...take heart from the hope, too.

As Olga Bogdashina said (autism author and a colleague of mine who has a teenage son on the autism spectrum), her life was never the same...but she wouldn't have swapped it for the world. She learned new things, got new skills, saw life in a different light. And we do. Not in the bits where they're having the tenth wild tantrum of the day and we're totally knackered, though

Great message amber!

Amber what a brilliant message, thank you. And your ds sounds like a wonderful young man.

Gladioli, is there a glass of wine with that beanbag?