Sen parents - how do you deal with the jealousy?

[Newsenmum]

I never used to get it. Always happy for others, enjoyed hearing about their different experiences. We chose to have kids so knew we’d have less money, no nights out, much less travel experiences - absolutely fine. Good on childfree people having fun! I love their stories. I don’t expect everything. But when I see people with kids my own age now starting to travel, have fun, go out to restaurants, their kid rides a bike, had friends, picnics in the park with school mums, beach days. It just makes me feel so lonely and so… jealous. :(

Anyway, that’s the thread. How do you manage it? Yes I know, I need to get off social media. But it’s addictive. And some of the sen accounts are helpful and make you feel less alone. And I’m still friends with these people, ours lives are just turning out very differently.

It’s hard OP. It’s sometimes just downright awful and can be hell. But there are simple pleasures and I do honestly think my DC have given me a very ‘zen’ outlook of what really matters in life. My DC doesn’t think of tomorrow or the next hour. Just there, in the moment. And any affection or gratitude is 1000% genuine without any bowing down to pressure to conform too

Just today I was astonished as I watched a dad not really pay attention as his two under 6 children were running about. I was just really shocked, as I sometimes am, when I realise how much simpler life is when you aren’t physically restraining a disabled child who has 0 danger awareness, or pushing a disability buggy. The simple act of walking down the street a few metres is a challenge.

All in all, there is no point at all in focusing on anything but the present. Because that’s all we can do. The future is a hard one. I don’t really know about that. I am practical but the facts are harrowing. The worry is immense.

My 3 DC are teens/tweens with ASD, ADHD & Dyspraxia.

This wasn't the life I planned.
I have grieved the life I should have had.

I think the hardest time was when they first started school. We already knew they needed one to one support, but it really shook me up the difference was so stark and obvious.

You do learn to take things at a different pace, and learn what works for your child. I'm lucky that it's getting easier in some ways, but the difference is still there and I have gained acceptance that there's always going to be extra steps to get the same stuff done.

It's bloody hard! You are not alone in feeling this way x

You're not alone OP. I too feel this way at times. My son is 6, non verbal and attends mainstream school.

It does hurt to see all the kids playing together before the classroom door opens while my son is just stood there staring blankly into space.

All the parents have a chat about what their kids have been up to while I can't relate so I stand away from them all and play with ds until it's time to walk him to the door. I have no advice but finding comfort in reading this thread x

Good thread. Radical acceptance of the wholeness of the experience, perhaps? I rarely reflect back or compare these days. Old school mum friends from DC1's primary school never ask me about how DC1 is doing now they've all moved on, because it would just invite comparison and I think they worry about it getting awkward. But it makes me feel like DC1 is 'off limits' socially. Ditto the secondary school year group WhatsApp group; I can't contribute to any of the discussions or answer any queries as DC1's experience is so niche despite being at the same school, running on a different timetable to her peers. I just get to lurk as I've nothing to offer. School trips, end of year productions and performances, DofE, GCSE choices ‐none of these will happen for us and in the broader social context we're irrelevant. SM is both an amazing source of solidarity and resource, and further othering: I'm on a couple of groups for parents whose children struggle to attend school, and the support is a great relief most of the time. Yet I've felt a bit lost and sad for DC1 recently as lots of fellow EBSA mums have posted over the last couple of weeks about how their DC who hasn't attended school in X while has just got their 5 decent GCSEs. Obviously pleased for them but it highlights the fact that DC1 never will attain these lofty heights of academic prowess.

My ds is 2 and half and we've been told that they think he has a social and communication disorder. I'm starting to feel this way too, when i see other children his age in the cafe, or walking along normally down the street.
I definitely do think the summer does make it worse. Photos of the other kids from the nct class at the beach, on holiday, doing normal things. I keep waiting for him to grow out of it but his hijinks are getting worse and my husband is in denial.

I hear you. Dd12 with autism, love her to bits but she's hard work sometimes and she can't attend school. My friends have none of the struggles I have and damn right I'm jealous.

I tried to see it positively but I can see how this post was upsetting. I do still need to find my tribe so I understand that part. But being a sen parent is also incredibly different and that ‘jealousy’ won’t go away by finding my tribe .

It’s crazy isn’t it. Completely normal things can suddenly plummet your mood.

So much fomo in summer as it is and giving them a great summer. We no longer get invited to parties and it’s so sad.

Despite being from an academic background all I really wanted was a lovely family and lots of children and we won’t get that. And it’s not like I’m going to suddenly get into a great career now as it’s hard for me to work with ds. And I need something low stress. And then we know people who’ve only just had children and have already ‘moved on’ and doing more stuff that we still haven’t done since having ds.

Sorry, it wasn't meant to be either.

My child will never grow up, they just get older.

Language fails us often, an adult child doesn't really make sense but that is the case.

I was annoyed by the poster, having a child with a fear of water does not translate into any understanding.

It's like saying they understand my partners experience of growing up as a black child in Britain because they had a holiday in Jamaica

I have a good friend in a similar situation and I know she also finds it hard. A big part of her coping has been to find people and opportunities that they can engage with - it's not a coincidence we are friends in that DS also has SEN (but much less severe so I don't compare but it means I at least understand some of the challenges) and, more importantly, there's no difficulty in us spending time together. We all know and understand respective challenges and personalities and it makes it a bit easier, especially as DD plays with both of her children easily which a lot of NT children struggle with. DD isn't the only one as a bunch of her younger DC's friends have been around her older DC for a long time and have developed these relationships. My friend has also put a lot of effort into finding groups and activities where her and her DC can make friends. A "tribe" is probably too strong a word - as lots of people have pointed out, it's all very specific and families with high SEN needs don't have a lot of time or energy or options - but it's peopel who get it, and, I think as importantly for my friend, it's families where her DD can play and have fun as herself without being judged for being "different".

But I also think it's okay to accept that this is bloody hard and that your life isn't turning out the way you envisioned it. You're also at the early stages so you haven't had the opportunity yet to meet a wider variety of people with similar or different challenges so while your life might not get a lot easier, you will slowly find people and places that will hopefully fill some of those gaps for you.

@MsPavlichenko everything we do has to be around my dd. We can’t really do anything he wants if she can’t manage, which she usually can’t. He kiddies out on the holidays he’d like, the day trips etc.

They aren’t particularly close, they wind each other up and I know he feels resentful, as he often gets emotional and it’s bursts out of him. He never really gets any time with me 1 to 1 as she doesn’t allow it.