Mother struggling with autistic son

[cobaltblue27]

Hi.
I am not sure if this is the right place for this thread. I have a 4yo son who has recently been diagnosed with moderate sensory integration disorder and who is receiving speech and language therapy. He also presents with very challenging pathological demand avoidance. Speech is there but very formulaic. Food and meal times are particularly traumatic. I knew there was a problem from when he was 6mo but everyone was trying to tell me there was no problem and I needed to get help for my own depression. I have struggled with depression for the last three and a half years with my son’s challenges and my inability to cope a significant contributor to my own poor mental health, along with the diagnosis of two autoimmune conditions (via a week in ITU on a ventilator), and an unsupportive husband. I am posting because I want to ask, will it ever get better? I work full-time usually but I have just had my third baby (I have 2yo son and just had a baby girl). I love spending time with my younger two, but I feel awful to admit that I just dread spending time with my older son. We have a nanny during the week who is amazing with him and he is much better with her than he is with me (she focussed on him 100%, and isn’t trying to do anything else; she also doesn’t have her husband undermining her at every challenge and disrupting the routine which may help but it may just be because I am a useless mother!), but I dread weekends when I am on my own. I have to have my husband with me as my son is very tall and too strong for me to handle on my own.
However, my husband hasn’t been to a single assessment, and refuses to read the feedback from the therapists/assessors. He doesn’t work with anyone and I don’t have any credibility with him when i try to explain what we need to do to maintain consistency with our son between us and our nanny: my husband will just badmouth me in front of the boys and do his own thing with bad results for our son. My son knows he can play up with his father and so runs riot. It is awful.

Over the last three weekends I have spent over five hours crying. Between my son, my husband, and my nanny telling me how she has no problem with my son and how perfect he is with her, I am at a low ebb. I feel a huge burden as the week before I gave birth I was working until 11pm at night to finish work while also accommodating going to my son’s appointments. My husband doesn’t so any of the admin related to these nor help with the school relationship. It feels that nothing I do is ever good enough, nor making it any better, and I am beginning to feel what’s the point of carrying on as I am just so useless at everything and nothing ever gets better.

Any words of encouragement?

Thanks all.

Massive hugs and OP. Your situation sounds Mega. I'd truly run for the hills (or patio the husband).

You're doing amazingly under the circumstances, please don't undermine yourself. One day you'll look back and be proud, I assure you.

Im so sorry its so hard for you at the moment. You are not useless, dont listen to any of that, its emotional and verbal abuse if it keeps happening and if that is the case look for help and get yourself strong back again. Those words are contributing to growing fear of being alone with your older one, its not fair on either both of you. Please look for support. I was in emotionally abusive relationship and it destroyed my health. Dont let that to happen. Your kids needs you.

I’m not sure if it is emotional abuse as much as emotional neglect. I worry that my son’s issues come from my husband as my husband just doesn’t seem to be affected by the fact that his wife is basically on her knees. He just seems deaf to the tears and the suffering. I know he doesn’t love me and we have no physical relationship unless we are trying to have a child. It’s not personal as I have never seen him make an effort with anyone; his family are horrible too so I guess it’s not his fault. I am 36 now and just think, is this it? It’s been a really hard few years and sometimes I wish I hadn’t been intubated in time in hospital. I wonder what the point of it all is as if I died it would be an inconvenience to my husband more than anything else. He got really angry about the extra childcare bills when I was in hospital in ITU and told me so the second night I was out of hospital. No human being will ever matter as much to him as money does.

I feel really worried too as my 2yo son is still not really speaking-he only has about ten words and he can’t mimic sound-the words are really mangled and barely formed. He just says ‘Da’ to everything. Our HV has said he will be referred for speech therapy at his 2yr check (being done in January; his birthday is next month). I just can’t face all this again.

you don't have a child with autism problem, you have a husband problem.

leave.

your mental health will be better, and your sone will be better behaved.

easier said than done though

I can be wrong - I'm sorry if it came as being judgemental, only had good intentions. All best.

Much that could be said here but to say just a few things

• You have a huge amount on your plate - 3 little children, 2 with (potential) challenges, your own health issues and a demanding working life (even if recently on pause). And not enough sleep I am sure (itself very depleting ...)

• you should feel proud about what you are managing just keeping that show on the road

• dig deep as you can to keep b&ggering on. When I had a newly diagnosed ASD toddler and a sickly newborn baby I remember feeling utterly overwhelmed, utterly exhausted and so grief-struck that I used to push my double-buggy round the neighbourhood feeling it would be best to push us all under a bus.

• Thank God I didn’t. Things have evolved, changed, improved in so many ways and life 3 years on has involved so much more joy than I could have imagined. My husband did not undermine me like yours (who sounds very challenging and poss with undiagnosed issues himself) but was very much on the sidelines - which dynamic in these situations is quite common - and all the action/frontline stuff was down to me (a dynamic which is not uncommon in these situations).

• Love for the children and necessity kept me going. And the knowledge that I was their best bet - simply because no one else would ever care as much about helping them as I do. I have many flaws and am not well-suited to some of the skills parenting them has demanded of me so I found that frightening - but ultimately empowering, as it has given me a purpose that my (in retrospect easy) life without children lacked.

-So my suggestion would be to focus on the children, expect little of your husband (disappointing but helpful if it reduces antagonism for the present), get some professional advice on how to handle and engage your 4 year old and maybe also try to meet some other parents in the same position (which I have found helpful and inspiring). And hold on to the fact that now is not forever - things will change and can definitely improve. KBO