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Here are some suggested organisations that offer expert advice on special needs.

Original poster

Does it ever get easier?

16 replies

PopadomPointer · 02/05/2019 14:24

Just a vent really....

Ds has recently received his asd diagnosis and I think I’m feeling a bit sorry for myself.

I just can’t face going out with my friends anymoreSad

They are a good bunch but all they go on about is their ‘perfect’ dc....I sound like a bitch don’t I? I supposed I’m jealous and just need to get over it.

Just feel like I can’t handle going out anymore.

Rant over

OP posts:
openupmyeagereyes · 02/05/2019 14:44

You don’t sound like a bitch. How old is your ds?

Getting a diagnosis is overwhelming, even when you’ve been expecting it. You will likely find yourself on a bit of an emotional rollercoaster but once you’ve processed it things do get easier.

It’s also totally normal to feel jealous of your friends and their NT children. This will ease too but you will still get pangs occasionally, I know I do anyway.

Take some time to wallow and lick your wounds, be kind to yourself Flowers

Original poster
PopadomPointer · 02/05/2019 18:26

Thanks for the replySmile
He had his diagnosis at Christmas....it just made it official really,we all new that was where it was headed.

I’m grieving for the boy that He’ll never be Sad

OP posts:
openupmyeagereyes · 02/05/2019 19:00

How old is he? Is he verbal or communicating in other ways? Is he receiving and speech and language or occupational therapy? Do you have any other support?

Have you read much about ASD and how you can help support him? IMO this is the way to lift yourself out of your grief and give yourself hope. He may not have the future that you hoped he would but you can still support him to be his best self.

Original poster
PopadomPointer · 02/05/2019 19:54

He’s nearly 5
Non verbal and still in nappies.

He’s getting speech therapy,also trying PECS but little success.

He’s very challenging,screechy and pinchy. But he has a smile that’s melts my cold dead heart Grin

OP posts:
cremeegg · 02/05/2019 21:41

Hey op,
Be kind to your self, it's totally normal how you are feeling!

Have you considered using an AAC device with your ds? My son never really took to pecs. Definitely hang on in there with it as it may work for him but be aware there are lots of other options available!

My ds is 9, he has autism and a severe learning disability, he has no speech at all. That absolutely doesn't mean he can't communicate though! He uses an AAC program on his ipad called proloquo2go. He can make sentences such as 'can i have snack', 'i love you mummy', 'i want go park please' and much more! He has a level of functional communication which he didn't have before.

He wasn't toilet trained during the day till 8 but we got there! Hang on in there!

There's so much advice you can find on here, just ask, always people happy to help who have been there.

openupmyeagereyes · 02/05/2019 21:43

It must be difficult but you are not alone. Do you know anyone with a similar child? How old is he?

Have you had any access to courses for parents of children with autism, such as early bird or your local equivalent? These can be a good way to meet people in a similar situation.

Alternatively you will find people who do get it online.

openupmyeagereyes · 02/05/2019 21:45

Sorry, you said he was nearly 5.

openupmyeagereyes · 02/05/2019 21:47

Crossed with cremeegg’s inspiring post.

Original poster
PopadomPointer · 03/05/2019 08:43

Thankyou for the repliesSmile

We are on a waiting list for the early bird course but it’s full until next year.

The other people I know with dc with autism,they are more ‘quirky’...as in -their dc can speak but have quirks iyswim?im probably not explaining myself very well.DS seems so severe compared to others.

I will do some research on AAC device,sounds brilliant.

OP posts:
openupmyeagereyes · 03/05/2019 18:47

Are you able to get out and about? Would ds like soft play for instance? Some do a relaxed, SN session. Places like that are good to meet other parents.

openupmyeagereyes · 03/05/2019 18:54

Posted too soon.

I’m sure it’s difficult OP. My own ds probably falls more into the ‘verbal but quirky’ category. It definitely has its challenges but I’m sure it’s nothing compared to what you face.

Have you read The reason I jump? It’s written by a non-verbal autistic and is very insightful.

openupmyeagereyes · 03/05/2019 19:06

Also, I saw another poster recommend the YouTube channel Fathering Autism. It’s about a family with a 14 year old non-verbal autistic daughter and is very interesting. I’m sure there are many others.

Original poster
PopadomPointer · 03/05/2019 20:16

openupmyeagereyes
Ds would never do soft play...he has a meltdown as soon as we walk through the door

OP posts:
Original poster
PopadomPointer · 03/05/2019 20:17

Thanks
Will look up the book and YouTube Grin

OP posts:
AfterGlowWorm · 03/05/2019 21:00

I've found counselling for myself has helped. It's giving me a safe space to express my grief and talk openly about how I feel. I'd really recommend it.

Cordelio · 07/05/2019 11:23

Can’t offer much in the way of advice (we are pre-diagnosis, suspected ASD) but I really sympathise, as I’m struggling to come to terms with what this will mean for my DS and how much harder his life (and by extension ours) will inevitably be because of all the things he struggles with. At the moment the best thing I can do is not think too far ahead but focus instead on today, this week, etc, but I’m also intending to start counselling soon as I feel like I need to deal with my own feelings first so that I can be stronger for him. Good luck OP Flowers

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