Struggling with the realities of life as a SEN parent

[purplesofachair]

I’m really struggling tonight and just needed to articulate it rather than being in my own head. I have a 6 year old son with autism and a strong PDA profile.
Our life feels so small.
We go to the same softplays, cinemas, playgrounds, farms on a loop. We rarely see friends as we’ve learnt my DS can’t handle it.
We also have a 4 yr old DS who is neurotypical. We want to show him more of the world but he is such a kind soul if we try to do things separately he’s sad his brother can’t be included.
We recently thought we’d give a day trip a go for everyone’s sake and ended up crying on Brighton pier because DS6 became so deregulated after being refused entry to a ride he was half an inch too tall for and was screaming and kicking for the best part of an hour and it suddenly wasn’t worth it. For either child.
And I’ve got better at not caring, but the judgement from other parents was hard to deal with.
I love them both so much but think
I’m struggling with the grief of the life I imagined we’d have. Days in the park with friends, trips to theme parks, long weekends away exploring different parts of the country.
And that one kid would love those things but it’s not possible for the other. We do separate them so our younger one gets some experiences but that also leads to meltdowns later when the big one knows he’s missed out, even though he would have hated it, and then the younger one feels bad.
Both me and my husband work full time and we have no family help so it is a constant juggle to keep everything afloat.
We’re also going through current EHCP fights to try and secure extra funding to get him a 121 and we’ve recently gone through the DLA application process which was exhausting.
I just feel I’m failing every part and also know I’m isolating myself from my friends because no one understands and if I try to talk about it they try to empathise with “oh, my kid has meltdowns too”
Which is not the same.
How do I reach acceptance that our life is different to how i imagined when we first got pregnant and embrace it. I’m ashamed with the resentment I feel and the jealousy I have for my friends with NT children who are living the life i imagined.
The last year has become so much harder as the demands of school have increased which means we need to give even more downtime at weekends / holidays for DS6 to reset and recover.
I think I’m struggling tonight as Easter holidays are approaching and all I see are friends planning holidays and trips and I know we have to prioritise mainly home days and local trips to support our son.
I’m just jealous and know it’s not a useful or helpful emotion. I guess I’m looking for anyone with similar experiences who can give me a pep talk,/ strategies to frame it differently. Thank you for reading x

I wish I had something helpful to offer, but I could have written this post myself. My DS is suspected autistic quite severely (we don't have an official diagnosis yet) but it's clear to all, we are awaiting assessments etc. my sons behaviour and meltdowns are very bad, I'm exhausted. We can't go out hardly anymore because he's dangerous and has many meltdowns. I often find myself grieving for the life I thought we was going to have, doing much more normal things, normal routines.

I find my son's behaviour very triggering and honestly I'm struggling very badly with it ball. I don't really have any advice, only solidarity.

It’s really hard. However whilst you’re still able to get out enjoy those days with the pda child. Equally enjoy work being out and interacting with people.

It might become harder the older your child gets plus if pda could likely end up out of school. So take joy in everyday as you could become house bound / unable to work as the child can’t go to school later on ……

Divide and conquer plus any grandparents that can help. Also, try and find a sen mummy with a pda child as easier to vent to each other.

Good luck!

Have you found a group (in person or online, formal or informal) of parents whose DC have additional needs? Some find that helps. Not necessarily for DC to socialise, that doesn’t work for some, but for you to interact with.

I know it is an adjustment, but I would try to become more comfortable with splitting up and doing things separately. For us, that is the only work to manage.

It can help to have a think about how trips out can be improved for DS1. For example, would a blue badge help? A quicker escape back to somewhere safe. Does DS wear ear defenders or noise cancelling headphones/earphones? Some find sunglasses &/or a big hoody helpful. Some find a wheelchair or SN buggy helpful even if DC can walk. It provides somewhere to retreat to and can provide a buffer for some sensory overwhelm. Keeping a diary of what works and what doesn't will help.

Some people find counselling helpful.

Have you had social care assessments? A carer’s assessment for you and an assessment by the children with disabilities team for DS. There may not be anything suitable, but it is also worth having a look at your local short breaks offer.

It will get better with time. You are griefing the life you hoped for, but acceptance and hopefully a different kind of joy will come with time as you figure out what works, what doesn't and get used to it. Also change your frame of reference, don't compare yourself with the most active and affluent mums and their Insta feeds. Explain to your younger son that being kind doesn't mean including everyone, but doing things so that they work best for the people we care about, so if they need quiet and 1:1 care, it's not kind to take them along in a group. You could still do e.g. theme parks, just take the kids seperately, on different days, while one stays home with dad, then their is no jealousy. We bought an annual pass to our nearest themepark and zoo, and then instead of going to loads of different places, went back to the places my children liked, and we took them separately, and because of the pass we didn't need to worry about paying for adult tickets twice. Don't be shy to ask parents of classmates to pick up your youngest for playdates. Just say you can't host at home. You can reciprocate by e.g. taking your son and a friend to a playdate outside of the house, e.g. cinema or trampoline park. Make sure you have a job that you like that provides you with social stimulation. If you currently e.g. do data entry, become a waitress, customer service etc., anything that makes you tired of people so that you relish quiet and solitude in the evenings and on weekends. And as others have said, enjoy the time your asd son still wants to go out. A common trajectory is that there will be years when they don't want to/can't leave the house at all, often not even to go to school. So keeping them in a gentle rythm, with as much 1:1 and as many accmmodations as possible, can prolongue the phase in which they can learn socially, before they enter total overwhealm and you are even more housebound. But then they will hopefully old enough to stay home alone soon and you can go out more on your own, so it won't be forever. I'm truly sorry though that there us no magic wand, it sucks.

It's really tough. I have no easy suggestions but keep talking to us on here.

I would say you need to do something just for yourself each week. I sing in a choir. An unexpected side benefit has been I've met some really wise older women who've been through it all with their kids!

Thank you to everyone that took the time to comment. I really appreciate the empathy and practical suggestions. I was feeling a bit lost but having some ideas to focus on, recognising it’s ok to not have a “perfect family day” if it works better to split up and reaching out to others IRL who have a true understanding through lived experience has really helped.
Plus the acceptance that it feels hard because it IS hard. Many others struggle to navigate it too. But we’ll find a way

There’s been some great suggestions on here for you. I don’t have any advice but I’m in the same boat as you. I’ve had a particularly bad day today and feeling very sorry for myself. I’ve been in like ‘I’m a bad Mum at the moment as I don’t know how to cope with DD8’ mood. So just wanted to share a virtual hug with you and say we’ve got this. I’ve recently met up with some local SEND parents which was amazing for both of us as it was a kids event for SEND families, if you’ve not done this already I would highly recommend.

I am also in the same boat and hear you op.

The 2 things that I suppose have equipped our family and really helped us get our head around parenting our DC was reading 'the explosive child' book and OT. I'd say that accessing OT may be something you want to try, as I know many families with ND children for whom OT has been invaluable. Understanding your child's sensory profile and the reasons behind some of their behaviour has been really helpful. And the explosive child book talks a lot about how your ND child doesn't have the skills to e.g. regulate, and it helps to just have a method for approaching things.

But there is no magic wand and life is so difficult. DH and I are struggling with burn out and we also have no family help. We have just tried to try everything and OT and Dr Ross Green books are the 2 things I'd rate as having been most helpful for us understanding this life we have found ourselves living. 💐

What is OT please?

@Supersares Occupational Therapy.

The explosive child is now on order! And lovely to know there is such an understanding community on here. It’s made me feel less alone.