To look at pictures of him and imagine...

Lostlostlost3 · 2022-01-19T20:34:33+00:00

Name changed and expecting a bit of a telling off. I need to get this off my chest. Life is hard at the moment. My much loved and longed for son is autistic and we are all Struggling. He is unable to speak or communicate well, is dysregulated and we've just had another horrendous bedtime. I took the most beautiful picture of him earlier and as I always do, I look at it and imagine what life would be like if he could talk to me. If he didn't have communication struggles. The conversations and laughter we would have, I'd finally be called mama. He'd say good morning and good night to me, give me a hug and say hi mama. It's breaking my heart and I am just broken. I don't know how to help him. This isn't what I wanted for him and us.

CurrantBum · 19/01/2022 20:39

Oh op how difficult 😥 What age is your son? I think in a situation like this, it's normal to grieve the loss of what you don't have. It doesn't mean you love your son any less

CurrantBum · 19/01/2022 20:40

Sorry I'm sure someone will be along with more helpful advice soon.

LovelyLupins · 19/01/2022 20:40

No telling off from me.
Your situation sounds very tough. I have an ASD child too and I can relate, I often wonder what the sliding doors version of her would be. Easy, full of fun and laughter and enthusiasm and friends and cuddles.
I know that it sounds glib, but please try to take some time for yourself. When you are rested and recharged you’ll be in the best place to appreciate your son and all he brings to your life and all you bring to his

Original poster

Lostlostlost3 · 19/01/2022 20:50

He's three @CurrantBum.

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TinyTickler · 19/01/2022 20:51

Grieving for the life you prayed for doesn't make you a bad person. You didn't choose this, that doesn't mean you don't love you son

You may have seen this poem before but it's worth a read if not

www.stepsautismtreehouse.org.au/blogs/2019/6/2/welcome-to-holland-an-inspirational-poem

Hollowtree3 · 19/01/2022 20:59

It is clearly so hard to accept. There is a different life that your child will offer you. Not many people will ever get the (unrealistic)version that they imagine of their child… There is autism in my family, they just experience our world differently and don’t care for social rules or empathy in groups. Accept them for how they see the world

DrManhattan · 19/01/2022 21:37

No advice but you are not alone xxx

Antiqueanniesmagiclanternshow · 19/01/2022 21:44

@Hollowtree3

It is clearly so hard to accept. There is a different life that your child will offer you. Not many people will ever get the (unrealistic)version that they imagine of their child… There is autism in my family, they just experience our world differently and don’t care for social rules or empathy in groups. Accept them for how they see the world

That is such a glib answer and fails to recognise that for lots of people autism isn't just seeing the world differently. It is a proper disability needing lifelong care.

Op yanbu AT ALL.

Original poster

Lostlostlost3 · 19/01/2022 21:48

@Hollowtree3 it's not that he doesn't care for social rules. He doesn't understand them, doesn't understand how to copy or imitate an action. Doesn't understand that if someone is in front of him, to walk around and not career forwards.

It massively disables him. He won't eat any proper food, just snack foods. He is wasting away in front of my eyes. We love bathtime together but it breaks my heart to see him so thin.

He has a sensory processing disorder so I have to watch him slam his head into the bed 100s of times on an evening.

I can't say this to anyone in real life but I am just broken.

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MrPoppysParka · 19/01/2022 21:48

@Hollowtree3

It is clearly so hard to accept. There is a different life that your child will offer you. Not many people will ever get the (unrealistic)version that they imagine of their child… There is autism in my family, they just experience our world differently and don’t care for social rules or empathy in groups. Accept them for how they see the world

Autism in your family…so not your child then?

You have absolutely no idea of what the OP is grieving. If you don’t have anything helpful to say, then don’t.

Also, don’t care for social rules or empathy? Who is the ‘they’ you are referring to there?

Original poster

Lostlostlost3 · 19/01/2022 21:53

@LovelyLupins and @DrManhattan I'm sorry that you are experiencing this too. I don't mean to be in any way disrespectful to autistic individuals on this thread, it's just my son is currently so disabled by the condition. I don't want him to live a life where he will struggle.

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Tricked2003 · 19/01/2022 21:54

At 3 my dc with ASD and global delay was non verbal, in nappies and didn't sleep. Unless you have lived this please don't post glib responses like the Holland poem or that autism means seeing the word differently........ it us far harder to deal with!!

My dc first said mumwhen he was 5, he was out of nappies at 12.

It is hard op, but for me it has got easier. There are huge challenges still and I don't want to look too far ahead.

Hugs op x

CoutureBakes · 19/01/2022 21:55

Yanbu OP and Hugs...it is hard...I'm lucky enough that my previously non verbal boy has suddenly found a few words he only screeches mummy when he's upset but I'm so happy to finally hear it. The other issues haven't changed much but as time goes on he's finding other ways to communicate.
If your boys not yet in a nursery setting once he is you will be supported with helping his communication along and you may be surprised how much he picks up from his peers. Even if its not verbal communication, he will surely learn gestures and actions and routines that he can put in to practice at home. It made a bit of a difference for us. Re bedtime have you considered melatonin? I was a bit iffy about it at first but after a few years of struggling and barely sleeping myself, it's been a lifesaver. It doesn't guarantee they stay down all night but it helps with the settling down stage and in my case instant k.o. means I can almost guarantee what time he falls asleep.

Original poster

Lostlostlost3 · 19/01/2022 21:58

@Tricked2003 thank you for your post. Autism is indeed not just about seeing the world differently, it can be about being physically disabled by your environment.

It must have been the most fantastic feeling to hear him say mama for the first time. I pray and pray that our day is just around the corner.

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Merryoldgoat · 19/01/2022 21:59

It’s so hard OP. I feel the same about my youngest boy. I have two children with ASD. It’s the uncertainty that I find the hardest. I have no idea what any day will bring. I love them both with all my being but it’s not the life I expected.

Original poster

Lostlostlost3 · 19/01/2022 22:01

@CoutureBakes he is already at nursery and settled and progressing slowly. He doesn't yet have any friends or meaningful relationships or interaction with other children but does love the staff in his room. Gestures are coming on really nicely and we are relying on this form of communication.

We have had various support services involved all of which have done very little for our family.

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Original poster

Lostlostlost3 · 19/01/2022 22:02

How is your relationship with your eldest @Merryoldgoat? Do you think this is an age thing? Gender thing? Something that happened with time?

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DefinitelySureThatImNotsure · 19/01/2022 22:04

My son is the same age.ASD diagnosis Still in nappies , has ARFID. It is absolutely exhausting and heartbreaking

Original poster

Lostlostlost3 · 19/01/2022 22:07

@DefinitelySureThatImNotsure yep, I'm sure we have arfid here too. I understand what you are going through and how hard it is.

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CoutureBakes · 19/01/2022 22:07

@ Lostlostlost3
Feel free to PM me if ever you want to...I've been there, been there a second time and I am still there.
There are also things I could never say IRL.
My friends and family just dont understand or maybe just feel uncomfortable and say things that are supposed to make me feel better when I just want to scream about how flipping hard it all is for myself and for my DC who have the diagnoses.

Sometimes there is extra support available and hopefully others will come along and advise...again feel free to message if you want. Maybe I can offer some ideas....all of my d.c have sensory issues and I've done a few s.e.n courses, parenting courses, sensory workshops and many years of appts with occupational therapy so I know a few tricks.
If you haven't already, contact your H.V and insist you need support. X
Great job reaching out on here for support..even if its just to vent!

RussianSpy101 · 19/01/2022 22:09

@Lostlostlost3 you’re not a bad person. Your son sounds very similar to mine. My son is 4. It can be so incredibly heartbreaking and I too grieve for the things we both will miss out on, and the things he will alone.

You are not alone, feel free to message me if you want somebody to speak to.

DooDahDah · 19/01/2022 22:10

I have dc with ASD, the eldest was 2 when I had the twins.

All 3 are different to each other in their behaviours and needs. It's bloody hard some days.

There will be easier days and harder days, but you never have the life you had originally foreseen.

You are allowed to think that it's cruel and unfair.

You will pick yourself up and put one foot in front of the other, as there is no other choice.

My children bring me great joy. I am the expert on them and them only.

It gets harder when you see other kids hitting milestones, and doing things you took for granted...

I've learnt not to compare. I've found other mums of SEN kids who "get it" and to be honest we are a lifeline for each other.

There's nothing I can say to help, other than I understand and I too have cried for that other life x

lollipoprainbow · 19/01/2022 22:10

My dd9 has ASD, when she is calm and happy I get glimpses of the child she could be, then along come the meltdowns, anxiety, friendship issues etc.
I wish with all my heart I could take it all away for me and her. I worry about her future so much.

HailAdrian · 19/01/2022 22:17

My 9yo is autistic and non verbal (although he occasionally says single words), mostly uses the toilet, also eats snack foods, etc. I've really learned to love his company and often wish I could just take him somewhere where he would thrive because our society wasn't built with autistic people in mind. In a way, I'm glad he doesn't ever have to worry about the things we all do. I think respite is really important though and there is nothing wrong with basically pleading with ss for help.

Starseeking · 19/01/2022 22:20

You're not alone @Lostlostlost3. My DD is 4, starting reception in September and has an autism diagnosis as well as global development delay. She is non-verbal, still in nappies, extremely anxious and generally lives in her own bubble, although she currently attends a mainstream nursery.

This wasn't my plan at all. We have never had any disabilities in our family, so it's been a complete new world that I've had to get to grips with, while working full-time. The likes of audiologists, physiotherapists, speech therapy, occupational therapy, EHCP etc etc. I've also become a single parent in the last year and have a DS of 5 as well.

I worry desperately about what the future may hold for DD. She is such a cute, funny person, I'd love to be able to engage properly with her, and understand what she is thinking about, but the reality is that's not going to happen for now.

Take comfort in any milestones your DS achieves, no matter how small, and things do improve over time in the sense that you learn to adapt to support your DC in navigating this world.