Do you feel low level depressed all the time - does it ever get better?

[Newsenmum]

I feel like whenever I think things are ok it gets hard again. When I say ok, I mean I start having hope it’ll get better. Everything is always so hard, the lonliness doesn’t help, the never knowing if you’re doing the right thing, the more challenging life generally, the conflicting advice from so called professionals. Do you ever feel ok about it all? I’ve heard it’s easier if you find like minded friends but how do you even find them? And all our struggles are different.

Things do get easier you adapt. It can all be overwhelming at times, have you got anyone supportive to talk to? I wish I had considered therapy in the early days, looking after yourself is important too. How old is dc? Can you try sen groups in your area?

He’s only 4. It goes up and down. Bad for a while, better with new nursery (we got through a couple of awful ones) but now it’s feeling especially rough looking at transition to school. We’ve only recently had the autism diagnosis so still finding our feet in what support is out there. How did you find local sen groups?

I agree about therapy and I’ve had it in the past, but it’s one of those things isn’t it when how do you even find the time?

I get it. it is so lonely and isolating and hard sometimes. Your kid goes through a really good phase - like one of those ‘leaps’ they used to talk about when they were babies - and everything feels massively easier for a while and you all start to get your mojo back and then it all comes crashing down again, or some new issue reads its head.

I’m lucky in that one of my oldest friends has 3 ND kids. We’re both likely ADHD ourselves, married to likely ASD men, and have had children with PDA, among other dx. So we both really get the situation of having children with autism diagnoses who aren’t at all like what professionals imagine ‘autistic’ to be - chaotic rather than rigid, need CONSTANT attention and interaction rather than preferring to play alone, sociable but obsessive about their friends, infuriated by rules and routines, etc. So none of the usual advice is at all helpful, and no professionals ever get it, and we’re just kind of out in the wilderness trying to work it out for ourselves.

One of the most helpful things my friend has helped me to accept over the years (my DC is 7 and hers are much older) is that there is no ‘right thing’ to be doing, apart from understanding your child the best you can, and getting a sense of what you intuit will help them, and what you can actually manage in your family without losing your minds, and just ignoring all the other noise. Sometimes lots of interventions and therapies will help, sometimes it’s just more pressure on you and your child.

What is going on for you and your family at the moment? How’s sleep? How’s your health? I’m here to listen and empathise. ❤️

Has he got an EHCP? are school doing anything to make the transition easier?

When ds was first diagnosed I was given lots of information from specialist teachers about sen clubs etc. I know you can have a look on national autistic society's website and it will show some in your area. We tried a few at the beginning however they didn't work for him at all he was just overwhelmed my dd however was the opposite.

I know finding the time is hard, and it can feel like the last priority most of time. Even someone supportive to vent to friend/ family member- I know that's easier said than done, in my case the supportive understanding ones are in short supply.

There are also support groups I think early bird for those with dc's under 5. These are for parents, have you heard about this?

Thank you so much. I think it would be so much easier if we knew more people like us, so I need to make more of an effort to find other sen families. My friends are either fellow mums with kids who’s children are now very different from my own and we struggle to mix (plus it’s all a reminder of how different our lives are) or my childfree friends who are great and we go out without the kids, but this is also more limited when we can meet. Plus as understanding as they are (and better in a way as they have no kids of their own to compare to/make you feel bad!) they obviously also have no clue as they have very different childfree lives.

We have no EHCP as were told we’d never get one but I’ve lost trust with them all now and think we will need to apply on our own. Argh!

I’ll Google this!

Your local authority, by law, must provide an information service to parents of disabled children/children with SEN needs. If you find that, there's a good chance it will contain listings for local support groups, as well as other resources, including autism-related talks and drop-in sessions.

Agree therapy can help with coping.

And approaches like PACE, whilst designed for trauma, can have helpful things to say about living in challenging circumstances with a child.

There's an EHCP thread you might find helpful.

If it is something you would be interested in, Scope offer mentoring to parents whose DC have recently been diagnosed.

Definitely request an EHCNA yourself. Sadly, some schools incorrectly tell parents their DC doesn’t need or won’t get an EHCP, but the parents go on to successfully apply themselves. On their website, IPSEA has a model letter you can use.