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AiBU to feel sad about my son's autism?

(67 Posts)
Whatisitallabout Sat 11-Nov-17 08:15:23

He's going to be diagnosed soon, he's nearly 3 and is moderately/ severely affected.

I love my son more than anything. I'm just devastated life is going to be hard for him , and is already. I am aware there are lots of positives and it could be so much worse , but that doesn't mean I'm not hurting for him.

Thing is when I try to talk about the hard parts I'm met with "it could be worse" or "he will be ok" which are well meaning and lovely, but not always helpful when I'm trying to discuss my genuine fears for the future. It also makes me feel unreasonable for even breaching the subject!

Whatisitallabout Sat 11-Nov-17 08:16:15

Broaching **

TheSecondOfHerName Sat 11-Nov-17 08:18:25

There is going to be a period of adjustment. It is a sort of loss because there's the difference between the child you have and the neurotypical child you were probably expecting.

After that, it gets mostly easier, but there are still difficult days, for example when his peers have coming-of-age milestones that he might never experience.

Sirzy Sat 11-Nov-17 08:21:33

Of course your not being unreasonable.

It was a year yesterday since DS was diagnosed, even though the diagnosis came as no shock (and was actually in a lot of ways a relief) I have realised that I have basically been in a period of “mourning” which I am now trying to pull myself out of!

When your child is born everyone has there vision of what parenthood will be like, what their child will be like and what life will be like. When you realise that through disability infact the child you have (and love so very deeply) isn’t the one you thought you would have and your life rather than being what you envisaged is going to be very different and you are going to be thrown into a world where actually you don’t want to be an expert in therapy,health care plans, fighting for support and schools etc.

One of the best things I have done is getting places on parenting courses for autistic children, not because the information is useful but because the other parents actually get it and understand your concerns!

Whensmyturn Sat 11-Nov-17 08:22:02

I can understand your worries. People you speak to probably also understand your worries. They are just trying to fix it for you when they should just listen. It will take time for you to come to terms with the diagnosis. I would say that it is best to try to avoid looking too far into the future. Your predictions about what the future will hold are probably wrong and you can more easily deal with any problems when they arise.

winterstail Sat 11-Nov-17 08:23:02

Definitely not unreasonable flowers

SoftBlocks Sat 11-Nov-17 08:24:00

TheSecond has put it very well above. Sometimes when people are trying to be 'positive' they can seem dismissive or insensitive to your very real and valid feelings.

PumpkinPie2016 Sat 11-Nov-17 08:26:43

YANBU son is almost 4 and we are about to go through an assessment process for him.

He (like your son) is amazing in so many ways but seems to have the most difficulties at nursery.

In the end, I've decided I need to move him to a smaller preschool as his current one is so big and busy and just isn't the right place for him but I feel so sad (daft I know!).

I'm trying to focus on his positives but it's hard x

Allthewaves Sat 11-Nov-17 08:27:32

Talk with other parents of asd, everyone rise will just be positive

PoppyFleur Sat 11-Nov-17 08:29:27

I loathe the 'it could be worse' response, it's neither compassionate nor helpful.

You have every right to feel sad, scared, fearful of the future or any other multitude of emotions. The diagnosis, whilst a relief is also accompanied by a sadness for the life you imagined and hoped your child would live. It took my DSis and BIL a while to come to terms with the diagnosis. A very unmumsnet hug for you OP.

queenofthebucket Sat 11-Nov-17 08:30:36

agree it is a form of loss. Someone wrote a paper theorising on how parents whose children have autism/complex needs or disabilities go through a kind of perpetual bereavement without closure. I think it is termed 'ambiguous loss'

vickibee Sat 11-Nov-17 08:35:30

Yanbu, it is hard to come to terms with. My son is ten and it is a daily struggle. He is high functioning and his dx was missed for years but you know there is something wrong. Parents of nt kids just don't understand the challenges so take well meant comments with a pinch of salt.

hazeyjane Sat 11-Nov-17 08:35:46

My ds has complex needs, no actual diagnosis of anything, so it is difficult to join support groups!

I find that lots of people (whether they have children with additional needs or not) like to say something positive, and that can sometimes make it feel as though problems, fears and difficulties are being minimised. I am lucky that I have a dh who I can vent to (and vice versa), a couple of friends in rl who knows that sometimes its better to say, 'fuck them all, let's go and have a glass of wine/coffee and moan relentlessly for an hour to get it out of our systems, then talk shit for a while' and there are also people online, here on mumsnet and some on Facebook, who help. Everybody is different, and everybody needs different things, I hope you find your people flowers

Dexywexy Sat 11-Nov-17 08:37:37

You ds was diagnosed 5 years ago. I feel the same way you do. It does get easier but those feelings of worrying about the future are always there but at the back of my mind. I try to take each day as it comes and not think too far ahead. It is best to chat to other parents who are in the same situation. I went to support groups and places where I would meet other parents. It helped.

Tentomidnight Sat 11-Nov-17 08:38:52

YANBU. The sad fact, though, is that other people don't understand, as they're not living your life. Even well meaning friends and family have no clue, and try to gloss over or minimise your concerns, to try to make you feel better.

I understand. We are now almost 2yrs post diagnosis, and whilst we now have an explanation for how things are, it doesn't stop us 'mourning' the child we thought we would have. Yes, it could be 'worse' (DC dx is high functioning ASD), but even being relentlessly positive is draining.

I regularly hurt, and cry, when I see DC (12) struggling with things that others take for granted e.g. friendships, going into a public toilet, school routine.

I accidentally broke down in fromt of a good friend recently and she was shocked. I was shocked that she was shocked. I didn't realise how much I carry and hide from the world.

Take up all the help and support you can after your DS's diagnosis xx

Beetlebum1981 Sat 11-Nov-17 08:47:12

Find a local support group where you can speak to other parents. My friend’s DS is only mildly affected however I think it was a relief and real help when a colleague spoke to her about how her son is coping (he’s now 18) and the things they have done to help him live more independently.

ILikTheBred Sat 11-Nov-17 08:53:06

I’ve been going through the same thing OP. I know it’s old but I found this thread comforting.

Pennina Sat 11-Nov-17 08:53:21

I cried my eyes out when my daughter was diagnosed three. I cried for the future I thought I would have with her but which realised I would not. I cried for her. There’s an old truism that works: I went to the airport and I thought I was getting a flight to Rome but when I arrived I realised that I was in Amsterdam. A completely different destination but equally as nice.

Hang on in there, have support and things will improve. My daughter is now 14 and has improved so much that she is at regular secondary school with very limited support needed. She has friends and prospects of a good life. When she was three I was terrified and found things very hard but be strong and make sure you get lots of help for your son in the early years as that will be invaluable for him.

BBQsAreSooooOverrated Sat 11-Nov-17 09:08:04

Yanbu. My dd was diagnosed in May before She turned 4. She is non verbal and starting to learn PECS. I have worries about her future, if she'll live independently, etc. What happens when I'm too old/not well enough to care for her.

It is a bit like grieving for the child you thought you would have. I've lost contact with friends because the gap between their children and my dd is getting bigger. They're all doing well in reception , my dd has stayed in nursery and we're exploring special schools.

We're lucky to have a support group locally for ASD families and it really helpful. They've given us advice about applying for DLA, the ehcp process and it's made our journey easier. I don't know if there's something similar near you but there's also FB groups too smile

Dinosaursdontgrowontrees Sat 11-Nov-17 09:09:14

Totally understand op. Unmumnetty hugs to you.
My daughter is 5 and was diagnosed 2 years ago. I cried for days after her diagnosis. I cried for the daughter I thought I wanted who I felt had been taken away. Two years on I still feel sad some days (my daughter is non verbal, I so want to hear her speak) but mostly I'm so proud of her! She is so kind and gentle, she's at mainstream school and is doing ok. She's happy and she's so much fun. She's still my lovely little girl.
As others have said we try not to worry too much about the future. Take each day as it comes. Try not to compare your child to others and try and meet other children/parents in the same situation. you are not alone op.

Whatisitallabout Sat 11-Nov-17 10:13:11

Thanks so much everyone for taking the time to comment. I can't tell you how theruputic and cathartic it is to read all of these messages of wisdom and strength and simply , genuine understanding.

I already feel less alone. I am a member of some local ASD support groups and we have invested a lot of time and money into helping my son - I'm aware early intervention is key .

It's so helpful to be hesrd and not dismissed for a change. I have had some well meaning but ridiculous comments when I try to convey my sadness about this. Especially off family! I don't want to moan as they're all fantastic , but they don't understand. Not like those in our situation do.

I have up and down days. I am fairly positive on the whole and always talk positively about him infront of him and his sister, but there are many dark days I feel literally bereft and terrified. He has challenging behaviours and no desire to socialise with peers. I am not naive - I know where this puts him on the spectrum and it scares me.

Sirzy Sat 11-Nov-17 10:14:10

The goose and carrot thread on the sn chat board is another good place to escape and rant if needed!

Whatisitallabout Sat 11-Nov-17 10:15:02

I would also like to add he is bright and funny and so very loving - I am so fortunate to have him. I just wish life wasn't hard for him and I wish others would accept the gravity of the situation ...

Bubble247 Sat 11-Nov-17 10:23:12

Hi, I could have written your post. My username says it all - during my son’s assessment process and diagnosis I felt like we only existed in a bubble. We are nearly two years on from diagnosis and I’m only just now enjoying life and the joys of my wonderful son. I was offered some desperately needed respite care from Barnados and they literally saved our family life.
There are some fascinating videos on TED which I sobbed my way through but also inspired me to continue being the best mum that I can be to my very special son xx

Whatisitallabout Sat 11-Nov-17 10:45:18

Thanks bubble, I'll check the videos out.

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