To look at pictures of him and imagine...

[Lostlostlost3]

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.

www.amazon.co.uk/Successful-Social-StoriesTM-Children-Autism/dp/1785921126/ref=sr_1_3?crid=755P07F4Y8TW&keywords=siobhan+timmins&sprefix=Siobhan+t%2Caps%2C81&tag=mumsnetforu03-21&qid=1642656533&sr=8-3

Siobhan Timmins writes really helpful books using “Social Stories”. She’s really quite inspiring.

Hi OP, my daughter’s also non verbal and almost 4, no one should flame you for feeling like you do. I’m completely petrified of the future and what things might look like. I see her peers sitting down at nursery and following instructions so calmly, meanwhile she has no idea; it really is heartbreaking.
It’s worse when you have no one to talk to IRL and you feel like you’re the only one going through this

I meant to add to my post - The Reason I Jump is a really good book to read. It's written by a 13-yr old non-verbal autistic boy and it's been at the top of the best seller chart.

Obviously every autistic person has their own thoughts, experiences and perceptions but this provides a really good insight into the mind of someone with non-verbal autism. When you feel able to delve further, I'd really recommend this www.amazon.co.uk/Reason-Jump-voice-silence-autism-dp-1529375703/dp/1529375703/ref=dp_ob_title_bk?tag=mumsnetforu03-21

[quote Lostlostlost3]@BringYourOwnBoris that is excellent! What a start to speaking. How did you get started with pecs? [/quote]
He was picked up quite early by our Health visitor and she referred us to a community team who provided the PECS. He would have only been about 2. By 3 he was almost full time in the nursery of a special school which was such an amazing resource.
By 8 they had given him enough skills to join mainstream schooling. Keep banging on doors OP.

I have no advice. But you sound like a lovely mum and I am so sorry for what you and your family are going through. It must be exhausting and frustrating and isolating.
I really hope things get better... and you find ways to stay positive.

3 is still very young, OP and ASD kids can change a lot in early life. At 3 my DS was non-verbal, had a poor understanding of language spoken to him, had delayed motor skills, was in nappies, had lots of meltdowns.

He is now 8, verbal (but admittedly still finds communication challenging and we still get meltdowns). But he is in mainstream school, reads above average for his age, has made massive strides on gross motor skills and is making slow/steady progress on fine motor skills. He's still very much autistic and always will be, but is able to function more independently than we expected in the early years.

Do you claim DLA? If not, claim it and use every penny to get weekly therapy for your kid to help them as much as possible. We had 2 years of weekly speech therapy and then switched to weekly occupational therapy. It's paid dividends.

For what it's worth, I fucking hate that Holland poem.

@RestingStitchFace me too, the tone of it grates somewhat.

@Lostlostlost3 I know exactly how you feel, my son is 6.5 and has never said a word. He also has very little understanding and doesn't respond to instructions or even his name. I know it's incredibly difficult, but you need to not allow yourself the what if thoughts, that way leads to depression and grief. The first time my son hurt himself in a meltdown I remember thinking that this is what a broken heart feels like, but now sadly it's a part of life that he bites himself and headbangs. He also doesn't sleep for more than three hours of a night, but melatonin has helped with him settling, definitely ask for this if you haven't already. Don't worry too much about the diet, we were told any calories is better than none, and he has his safe five foods, you can't force him so just go with it. It has taken me a long time to do this and I still find myself grieving for the baby I remember at 12 months old and the life I thought he'd have. But he is him, and this is the one life we have, and you cope the best you can. So one foot forward, each day at a time. You're not alone, even if it feels that way now.