Feeling low about ASD son

[EsmeeMerlin]

I have two children aged 10 and 5 and my 5 year old was diagnosed with ASD in August 2023. He is verbal and in some ways high functioning in that he can get his needs met. In other ways he is behind his peers in a significant way, particularly his social skills. He does not interact with his classmates whatsoever and he has struggled to settle into school. Last term we had a phone call every week it seemed to say he was running from the class, throwing things, hitting etc. He does not yet have an EHCP but does get support in school. He has a now and next board, Lego and fidgets, movement breaks and a class TA who works significantly with him of which I am thankful.

Our lives are often dominated by him, we can't go lots of places because he finds it overwhelming and our oldest son gets support from young carers because ds2 can be difficult for ds1. I just find myself feeling resentful sometimes. I love my ds2, I really do but everything is so.much harder with him. It's exhausting dealing with appointments, phone calls to school, his behaviour, the worry and stress about his future and getting a EHCP in place etc. I also work in a school, with a autistic child as a 1-1 which I do enjoy but it can feel overwhelming. The feeling of always trying to meet an autistic child's needs. However ds2 would not cope with holiday clubs, we have no family around so my job does suit ds2 in limiting his time in childcare. I am now on antidepressants and did speak to SLT about feeling overwhelmed. I now take a step back from my one to one student in the afternoons and teach phonics instead which has been helpful.

It's just difficult, ds2 does not show affection and really struggles to understand other people's emotions. When my ds1 was younger and had his challenging days as all children do, he would come up and we would have that recover period in that he would give me a hug and say sorry mummy. With ds2 I could fall down the stairs and he would not show any interest at all.

I don't know really what I want from this thread, just someone reaching out I guess to say they get the feelings that come with being a Sen parent. Working full time, and often being in at the weekend due to ds2, I feel very lonely.

Just here to say I FEEL YOU. I feel bubbling resentment that I dont have an 'easy' child, how other parents just dont realise how good they have it to just...enrol their child in school. Never have to deal with the near constant admin, stress, worry, phone calls to tirelessly advocate and fight for our DC. When I drop DD off at nursery, who has inevitably peed on me, screaming and crying while her classmates all skip in waving goodbye....I hate it. What I wouldnt give for just a CRUMB of that.

Big hugs.....make sure you find some time for yourself, even if its 15 minutes in a hot bath.

You are not alone or is very isolating and lonely and stressful and overwhelming and I feel that knot of sadness in fear in my chest most of the day the feeling you can never relax there’s always appointments and considerations and worries about the future that parents of “normal” children just don’t get.
Yvonne newbolds the special parents handbook and the tv program there she goes both do quite a good job at showing and explaining this loneliness and overwhelm and I found them comforting when I was having a particularly shit day
five is still so little though the difference between my son at 5-7 is not huge by any means but he is starting to understand emotions and is getting better at going out so don’t give up hope
my son would probably laugh aswell if I fell down the stairs and would have no concept that it hurt or I was upset by it but would find the image of me falling down the stairs funny because it’s unexpected and it would be noisy and he would see me make faces you wouldn’t expect. I know he loves me though and would be sad if I had to go away to hospital I hope that makes sense to you
big internet hugs

OP. I hear you.

Hearing you and sending hugs.

Are you getting much sleep? My son has melatonin after the most hideous couple of years of no sleep and trying to deal with getting a specialist place (still ongoing). We have melatonin now, and while he still wakes in the night frequently, it isn't for hours and hours and he's more subdued. We only lose a couple of hours instead of most of the night. Getting sleep really changed how I felt about the situation and changed my son's behaviour in that he is less hyperactive and will sit down and relax for some periods, but he remains very challenging most of the time. It isnt perfect, but even a little less of the challenging behaviour so it isn't 24/7 has really helped.

I get what you mean by it dominating your life. It has for us, and our older child has not had much attention. The thought of going on holiday fills me with dread and it has to be carefully planned so our accommodation doesn't have stairs or anything that might be dangerous to him and we can't really stay in hotels as my son might wake up in the night and be noisy. Going abroad seems like too much at this stage as i dont think he would cope with it. I hope it gets better.

Some jobs in the public sector offer term time roles. I work FT all year round and my job is busy and sometimes I could do without it being so busy, but it is also very different to looking after a child with ASD, so it is a break from caring and I get to sit down! I used to do support roles in the past and there is no way I could do that for work and have a continuation of it when I get home IYSWIM. It might be worth looking at term time roles in something different to get a break from caring and supporting all day.

You’re by no means alone in this. I can’t imagine working 1-1 with and ASD child on top of parenting / caring at home. Could you shift into school admin roles so you can keep your term time contract.

Really looking forward to mine going back to school - he loves it there and it wears him out so hopefully he’ll sleep better again soon. I’m drained.

I have an autistic DS1 (age 7) with a EHCP who also was running around, hitting, throwing, etc. As he's gotten older/more mature, and now has a 90% 1-to-1, there have been fewer issues at school.

I asked the school a couple of years back, before he got his 1-to-1, not to phone me/constantly tell me about bad situations during the day. It just stressed me out and I'd dread picking him up to be met with a litany of whatever happened during the day. They had a period of writing in a 'communications book' I could check at home, instead, but now they just don't bother - I collect him like any other kid and they just deal with everything.

Speaking as someone whose DS was at school with a non-speaking autistic boy with a serious learning difficulty (who I think has now moved to SS), you should try - however hard - to think on the positive side of things. You have a child who can communicate with you and who has the potential to mature into an independent, capable adult.

Autistic children do have empathy - they just don't express it in the same way as neurotypical children. My younger DS gives me a hug if I'm upset. My older DS storms around trying to right wrongs on my behalf and - though he doesn't show physical affection to his younger brother - he's always nagging him about healthy habits (i.e. he's worried about him)!

In terms of going out, it's all about keeping within your DS's limits, and expanding those limits without causing him a lot of stress. If he's like my DS1, he probably doesn't like noisy, crowded places. There are lots of places to visit that aren't either noisy or crowded. Link each trip to your DS' hobbies and interests, and build up familiarity with new things, step by step, so they don't feeling overwhelming or stressful. We took our DS1 on a self-catering holiday to Whitby last year, and he managed half a day sightseeing each day themed around miniature trains and lifts. This year, we're planning to go on Eurostar (more transport) and self-catering in the Netherlands, in the hope of working up to taking him on a trip by plane.

I always show him lots of pictures of what we're going to do, and let him have a say in what he wants to do, to give him a sense of control. He wants to do interesting things, he's just anxious and gets overwhelmed easily, so I'm trying to give him the life experience to control himself and feel confident to explore.

Not sure if this helps, but hopefully so :)