I've just broken my own heart but I know I'm BU

[MammaKel]

Hi all,

My 3 year old was diagnosed with Autism yesterday and I've been feeling a bit odd about it.

We've suspected it for a long time and he also has a diagnosis of a rare genetic disorder, GDD, hypermobility and now ASD.

He can't walk, he's non verbal although he's getting better at talking and isn't potty trained and needs a lot of help.

I broke my heart by looking at old photos, my sweet little baby is struggling and hasn't really moved beyond that stage.

I was looking at old holiday photos where we had no idea anything was wrong and he was just a happy little baby splashing around, eating ice cream and just being a normal happy baby.

In the grand scheme of things I know we don't have it bad, he's happy and healthy but I can't help feeling just scared by it all.

Does anyone have any advice? Or any comforting comments or maybe something to kick my arse into gear as I feel a bit woe is me at the minute.

I'm really sorry. I don't have experience of an autistic child - but I think the thought, 'knowledge is power' might be helpful? At least with a diagnosis you are now aware of issues, and might hopefully be able to access some extra help or support from others. Are there any organisations that can give you suggestions? If it's a rare disorder there must be others who have been through this who can offer suggestions to make life easier, perhaps?

For me, I think I would rather cope with a diagnosis than be anxiously fearing something was wrong and not having any answers, if that makes sense?

I can imagine how you’re feeling and I’m sorry.
my 8 year old is showing many signs of ASD/ADHD and I’m putting off the assessments as I’m so terrified of what that means but the reality is that I spend 90% of my time worrying so like the previous poster said ‘knowledge is power’
it’s hard. I feel gutted about the struggles he will have but no matter what, he’s my incredible boy and I’ll move heaven and earth to make things ok for him.
Good luck to you and your boy. You sound like a wonderful mum and you’re lucky to have each other xxx

No advice as such but I know exactly how you feel. My just turned 4 year old was diagnosed a couple of months ago and though it didn’t come as a surprise, it still hurts.

I understand how you feel when looking at old photos. On the one hand, blissfully unaware that anything is wrong and on the other hand I almost feel sorry for my old self about the worries that lie ahead.

My DD is also non-verbal and whilst she is still severely delayed, she has made a lot of progress over the last year. There will always be ups and downs, good days, bad days, good weeks, bad weeks but I think how you’re feeling is totally normal.

It’s a lot to process and you’re almost grieving for the life you thought your child would have and the parenting experience you would have. So be kind to yourself and when you’re ready, channel that energy into proactively getting as much support in place for your DS as you can.

Whatever happens or whatever he’s diagnosed with, he’s always going to be your gorgeous, much loved child who you will be so proud of. All children are little blessings who we are so lucky to have in our lives.

My autistic son would gaze anywhere except at my face or into my eyes when he was a baby. He didn't say "Mummy" until very late and whenever we shared a lovely moment of fun or laughter he would instantly slap or punch me in the face because the intimacy was simply too overwhelming for him.

He's now 14. Doesn't stop talking for a second! Doing great at school, also plays piano and cornet in a brass band. Is beloved by his teachers, has a couple of solid friends, manages his own schedule, tells me he loves me every few minutes, will still be a cuddle monster at bedtime...

I hear your heartbreak and want to reach out and give you the biggest hug. It's not easy and it's unpredictable but there will still be joy and celebrations. My heart has broken on his behalf so many times, but he's finding his way. You don't need to give your head a wobble - you're doing wonderfully and your much loved son will find his way too, in his own time.❤

National Autistic Society (autism.org.uk)

Give yourself time to feel all of it right now.
When you are ready, you’ll get up and help your baby. Give it time. You’ll look back at photos now and wonder at the progress he’s made too. That time will come. In time.

It’s completely reasonable that you feel odd. Your darling boy is still your darling boy. One step at a time. Xxx

We have a lot of neurodiversity in our family including autism - we also have a lot of hypermobility and infant reflexes not going dormant which can lead to some extra neurodiverse traits! Please google infant reflexes not going dormant - also known as primitive reflexes not going dormant and see if of interest to you. There is a lot of info on mumsnet about it.

He's very young - the brain is an amazing thing a lot can change as he grows and develops.

There is always an element of grieving when you get a diagnosis like this. Grieving for what you thought his life would look like. This is normal and everyone goes through a stage like this. Don’t avoid it, feel all the feels including the worry, panic and fear. His life is not finished and it is not pointless by any means, it will just look different to how you imagined it. What you can do going forward is to equip yourself with as much knowledge as you can to understand everything about the diagnosis but more importantly about the specific needs of your child as well as all the wonderful qualities he has. You will need to advocate for him on many occasions so you need to be knowledgeable. Your main goal should be that he is happy, healthy, loved and accepted for who he is. There are autistic people everywhere you look (most of them undiagnosed) and you will find a lot of support and common ground with other families. Sending hugs to you, give yourself time x

You are not alone OP. Everything you feel is totally okay.

My 2.5 year old also has a rare genetic condition. He is still like a small baby, just like your son, and unfortunately is likely always to be like one given how people with his condition typically develop.

I wish I had some wisdom to share but I can only tell you how I try to manage. I feel better if I focus on the present moment, absolutely do not think about the future, and avoid comparison with other children. If I’m honest I’m probably a bit in denial, but I don’t think there’s anything wrong with that as it helps me cope.

I do take joy in my son every day now, something that I never thought would be possible again immediately after diagnosis. It has been a year and a half.

Sending you love and solidarity.

No arse kicking from me. You DO have it bad. You DON’T have to be positive, count your blessings or any of that crap. You have been dealt a truly shit hand in the card game of parenting and those pictures must be torture. Be kind to yourself.

I'm afraid I have no advice apart from give it time. It's so difficult to go through. I have been through very very similar. I still have wobbly moments 4 years after initial diagnosis but it does get easier. Sending lots of love

There is also the poem 'Welcome to Holland' which always made me quite sad and the whole poem felt quite negative I suppose. But someone showed me Welcome to Holland Part 2 which I much prefer and I felt explains a lot of feelings.

OP I think it’s okay to sit with that feeling of sadness. Life will be full of challenges that NT children’s don’t face on the same scale, it’s okay to wish your child’s life and your life was on an easier path. Sit with that feeling and don’t beat yourself up.

Then pick yourself up when you are ready and be grateful for the unique, quirky little kiddo you are raising. I used to do 1-1 support with a child with GDD and ASD and she had a wonderful quality of life, was so loveable and fun and had a beautiful social life within her mainstream school.

Get every bit of support you are entitled to, research every benefit, every therapy, everything nursery (and school when it’s time) can do for your child. Be prepared, be informed and be an advocate for your child.

My own child is still awaiting diagnosis of ASD at 13. Early diagnosis and early intervention are the best thing you could’ve done for your little one. Well done and all the best x

Give yourself time, it's not easy.

For me there was something not quite right from birth, low tone they said, then possibly dyspraxia then at 2 diagnosis with autism - tested for genetic disorders but nothing found (or rather nothing they knew about then, we haven't repeated and the tech is better nowadays) - but getting the diagnosis along with not knowing what the prognosis was is tough. In our case she learned to talk, her motor skills reached minimum normal level (gross) and very good (fine) and she is very high iq but I still craved a "normal" child from time to time, usually at a time when I'm being told she's amazing and all I wanted was a typical child (shamefully admitted) I get it's tough.

I am going to add something controversial. It’s okay if you resent your son at the moment or even feel like you regret having him. It’s okay even if you don’t currently feel like you love him.

I’m not saying that’s the case for you. But after diagnosis I got a lot of well-meaning comments like “the important thing is you love him no matter what” and the truth was I didn’t feel like that at all. I felt that my life would never be good again because of him. I did not feel like I loved him no matter what and the guilt from that was an added burden.

We have experienced something that is a terrible fear for many parents. It’s okay to feel like that’s unfair, because it is. It’s okay to feel sad, angry, scared, bitter. It’s also okay to feel optimistic. It’s okay to minimise. There is no right or wrong - or odd! - way to feel in these circumstances.

I know exactly what you mean OP. Looking at photos taken early on when we didn't know what was ahead is sometimes heartbreaking. I grieve for the expectations I had then.

It passes. Like other posters above, life is better than I feared in my lowest moments. My son will not live independently but he will enjoy his life. It is ok to give yourself a moment to feel the feelings.

I get it OP; it's really hard to deal with when you get such a diagnosis, and all sorts of things go through your head as it's a lot to process. You will get through it, but it takes time.
(I knew someone would mention that bloody Holland thing, but I've never seen part 2 which I hope is not as sickly as part 1)
ETA: Part 2 isn't much better...