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Is this my life now?

7 replies

tipito · 12/07/2023 13:53

2 children DS1 is 7 and DS2 is 3 non verbal autistic.

I'm so deflated and down with what life has become and I don't know how to get out of this rut. I feel that whatever we do DS2 always ruins it. He's non verbal but also very little understanding and just screams/makes a moaning sounds for hours on end. Very physical and strong, runs away in public, eats a diet of chips and dry bread.

My relationship with DS1 is amazing we are so close and I love him to bits and while I do love DS2 I just wish he wasn't here so we could all enjoy life. Everything is hell, everyday is like Groundhog Day. I've even thought about splitting up from DH just so I don't have to have him 50% of the time (I know DH is very down with it also) no family will watch DS2 as he's too 'hard work' which has resulted in his having no family bonds, he doesn't even acknowledge his big brother half the time unless it's to hand lead for something he wants.

I'm sorry for the rant and I'm sorry I sound like an awful awful mum. I'm crying as I write this. I feel so resentful that I'm not getting to enjoy his childhood. He is last baby for us and I feel so jelous of people with NT children who are enjoying going through the motions of toddlerhood meanwhile I'm just getting battered around the head with toys and getting screamed at!! Sad

OP posts:
Relaxinghammock · 12/07/2023 14:50

Please speak to your GP/look at counselling. If DS was diagnosed during the last year Scope offer mentoring for parents.

For DS1, it is worth contacting your local young carers service and Sibs.

For DS2’s eating, look at ARFID.

Do you use reins or a buggy when outdoors?

Does DS have an EHCP? What support is he receiving?

Have you had social care assessments? A carer’s assessment for you and an assessment by the disabled children’s team for DS2. Home Start may be able to support you too.

Londonlassy · 12/07/2023 23:51

I am so sorry to hear about your story OP. I hope you find the support you need and deserve

SachiLars · 13/07/2023 21:24

Sometimes you need to get the feelings out rather than letting them build up. It’s ok. Although if they are going on for weeks, I echo other posters in saying go to the doctors.

why do you think he is running away? Is he scared or overwhelmed? Does he just like running? My son is 5yo and non- verbal autistic. He hates shops and will immediately try to run for the door. Galleries and museums are no fun either. We’ve found giving him opportunities to run really helpful. Paths through woods work for us; there’s no cars and it’s a fairly straight line so he can’t go off anywhere or get too far away.

Life is really hard and unrelenting when it’s like this, but you will find ways to adapt.

KingsHeath53 · 14/07/2023 19:33

3 is so young. He may well improve. My son is 7 now and i look back at that time and it was a living hell. At 7 things are still hard but we also have more happy times, he’s <a bit> more able to regulate himself. We can do more stuff like go to places.

few thoughts;

Can you self refer to social services? You can get access to respite care. We have just started this but having another adult who can take son for a few hours a week is transformative.

Do you have SEN parent mates? Check facebook and stuff for any local groups. I joined an SEN parents whatsapp a few years back and it transformed my life, the people i met through it are my besties now. I ditched most of mates with neurotypical kids cos it made me too sad to watch them with their rugby clubs and cello lessons and whatnot, all stuff i’d wanted for my son.

Know you are not alone. Almost every parent with SEN child/ren feels what you feel at some point.

Scratchybaby · 17/07/2023 13:37

To answer your totally understandable question "is this my life now?" - I would say no, it's not. At 3yo, nothing is set in stone yet for your DS, even if he is non-verbal right now, and you're struggling to connect with him right now.

Agree with @KingsHeath53 that 3 is a hard age when a DC is autistic and they don't have the communication skills or emotional maturity yet, and you've barely begun learning about how different it's going to be parenting an autistic child. It might even be more stark for you if you were understandably assuming you'd have a similar experience to the one you had with DS1.

It can get better though and there's loads you can do to help make it better. My DS was only just barely starting to communicate with language (i.e. a handful of words and scripts) around 3yo but we knew from around 2.5 that he was autistic and worked for months to build that connection and communication to get to that stage by 3yo. He's now 4.5 and a chatterbox who plays, sings and makes his own weird/funny little jokes with us, and I am blessed to have as close a bond with him as I hoped to have when he was born, regardless of the autism diagnosis. The biggest thing has been lots of reading and learning about his communication differences - once I got serious about trying to understand them and navigate them differently the floodgates really opened up. Every child's trajectory is different, so while no one can guarantee anything, a whole lot of change is possible at this age so don't give up hope.

The SN Children board is a good starting point for ideas for how to support your DS build those communication skills and connections as a lot of mums have been where you are now. From my own experience, I found that getting educated and proactive was as good for my own mental health as it was for DS, and the key to shifting from a state of fear of the future to being optimistic for what DS can do if he gets the right support.

klayton · 22/07/2023 16:12

He's still very young, don't give up hope. I would look at therapies such as ABA. Get him into a specialist school as soon as possible, start the process now such as EHCP etc. Explore alternative help, such as functional medicine and/or homeopathy.

coffeeNpie · 28/07/2023 22:45

@tipito I am very sorry to hear your story.

I am in the same boat. DS2 is 5 and doesn't acknowledge his big brother at all. Constantly screams when he is around. We don't get to spend any quality family time as DS2 doesn't like doing most of the stuff. Be it dining out, holidays, stroll in the park, meeting or visiting family and friends - we just struggle with everything. I hope you get the support, peace and happiness soon!

@klayton Can I private message you please as I am exploring functional medicine and homeopathy and could do with some advice?

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