Stress living with neurodiverse family life

[ILOVEPINK123]

Hello

Apologise if any of this is insulting to anyone.

I am a neurotypical wife and mother. I am so very stressed and have lost myself. I can't seem to get any of myself back ( my healthy living optimistic part of self , although I've always had a stressful life to some extent since my parents are not up to scratch... anyway which has always affected my opportunities in life )

So met husband when I was 21 , I'm now pushing 40. We had a child. I noticed he started to not be able to cope with daily life other than work. Everything else I had to basically tell him exactly how and what to do / get from shop and his executive function is still to this day in his 40s pretty awful.

When I first met him I was looking for a stable kind guy and he was / is that.

We then have child about 4 / 5 years into marriage, noticed a change in his attitude to coping.

Then we just kind of get on with it. I have a 2nd child during his time on furlough. Then soon after my 1st child is unable to cope starts big melt downs. Diagnose as a pda autistic age 9 this is when 2nd child was a toddler. Not sure she is a neurotypical either. Nobody listens to me.

Husband has just gotten worse executive function and seems to never listen to me more and more. He also acts like a 5 year old when I have to pull him up on stuff which is all the time. Leaving tools amd nails lying around house etc he is not a great role model.

It's all destroyed me as a person, slowly. I am toaly alone in everything except he is the Bread winner because I need to homeschool my child who can not for love of trying cope I Life. anyone who knows pda knows what I am talking about.

How can I cope with this? Anyone in same boat basically?

I wanted to add that from the above I guess you can tell I have zero encouragement. My pda child just tears me down a lot its stuff like... I'm (mum) ugly, dress terrible (not trendy) I have horrible home decor ( because I love pink and she hates it now... so her room was fully redone to reflect the new yellow and green obsession) and just generally that I am stupid etc, again if anyone knows pda...

so I just exist to be a maid and struggle on, its what it feels like.

oh also... my in laws... pretty sure they are all neurodivergent but they have never been interested or been any support or even had any relationship with me and we don't see them much.

I had assumed they were rude nasty people when I was not even married yet, they didn't attend wedding... I should have known back then, but had no knowledge of autism and other things that affect people mentally. So I just felt rejected.

My first thought is what do you do just for you?
If it isn’t anything then start with 1-2 hours a week where you leave the house - husband in charge - and go and do something just for you.
They will be fine. You will be better for it.
It will be good for them to see that you are a human who needs some time for themselves.
2nd couples Councelling/coaching to come up with some ground rules for you and DH. If he can hold down a job you can both work together to make a plan.
I don’t have a child with PDA. I do have a child with autism. Lots of what children say is nonsense. Ignore it. You are the adult. You like pink? Then pink is the color you have for your house. When they are older and have their own place they can choose what colors they want. Ignore rude behavior if reacting or punishing increases the PDA behavior.
Tell your DH that you need more emotional support - even if it’s just a hug when he comes home.
it really does sound tough.

Thanks for the reply, I am never out the house alone you are correct. Husband knows I need more emotional support but said unable to give it and he sorry for that.

Hi OP. I'm in a similar situation to yours (homeschooling 2 with SEN, 1 of whom is diagnosed PDA) BUT fortunately for me, my husband is hugely supportive at home.

I might advise you to move this post to SEN because I can almost guarantee you that people with no understanding/experience of PDA will come on here and tell you that being autistic is not an excuse for being rude etc. and that sort of behaviour needs to have consequences, but as a fellow parent of a 10 year old with PDA, I get it. The rude comments may be 'equalising' behaviour, and once you can recognise this in action, it may feel a bit less personal. I really recommend the Peaceful Parenting channel on YouTube. There are a lot of really helpful and insightful videos on there about how to create more harmony in family life with PDA.

I also feel like I've lost myself. When you're homeschooling a child with this neurotype, it's intense. This kind of setup without outside support is relentless and there is no space for you whatsoever. All plans/expectations/reactions have to be so carefully made, like constant treading on eggshells. It is absolutely exhausting.

Your DP needs to do more to help with family life (I didn't say to help YOU, as this implies everything domestic should fall to you). They are his kids too and he also has responsibility. OR he could pay for some help with cleaning/gardening etc. to free you up for some time alone. It's not a luxury, it's an absolute necessity in this situation.

During this alone time, go out and get some headspace. Watch a movie on your own. Go for a walk. Grab a coffee alone or with a friend. Take a bath. Exercise. Ring fence this time, book it onto your family planner and guard it fiercely. Treat it as an appointment with yourself that cannot be cancelled. DM me if you want solidarity.

Hi OP. You're living a very similar life to mine - except I have the one child.
She's almost 5; still awaiting assessment but there's no doubt in my mind that she's autistic (probably PDA). DH is almost definitely autistic too (but refuses to acknowledge either he or DD show any signs); so it's utterly exhausting being the only one with logical thought or executive reasoning.

I have just signed up to a gym and pool 20 minutes away - and although I work school hours (DD in mainstream at present); I have decided I HAVE to have one morning a week where I can go and be alone for 90 minutes once a week as it will help me remember that I'm a person too.

Any tiny thing that you can do - even once a week is how we cope in stressful family dynamics.

@Moneymonkey @ILOVEPINK123

My DH refuses to accept he and our 3 year old have autism. I still suspect he knows deep down but believes if he accepted it - he would be admitting something was 'wrong' with him. Instead, he would rather live in denial and make life difficult for all of us. The meltdowns, shutdowns, high anxiety from DH, wfh, cooking, cleaning, organising EVERYTHING, dealing with DD who has very similer traits to DH, older DS has ADHD and can be a handful.

I'm currently about to have a miscarriage - as it hasn't happened naturally. He started of with some wise words, compassion etc and now his own anxiety has gone sky high because of this sudden change and stressful situation he can't deal with. In all honesty I feel like he's being a selfish t* but then I also know that this isn't in his control. This is how his brain is wired

Sorry @ILOVEPINK123 I've bombarded you with my own sob story but just want you to kow you're not alone. Honestly. It's so so so hard and such limited support. I don't have family and friends who can really help either.

I feel like I'm living a silent nightmare. The culture I come from doesn't really understand or accept autism unless they were non'verbal and apparant. DH is very high functioning, intelligent, looks normal - which makes life harder for me. I don't have the emotional capacity to keep up with anything out of our 4 walls. No support network.

I think the only thing keeping me sane are the 2 days I'm NOT wfh - my colleagues/friends at work. I know your homeschooling but mine attend school so I have 1 day at home to myself.

Can you not send them to school? Maybe, a special needs school so they can have more support?

Sorry just updating to correct my earlier post. The you tube channel is called At Peace Parents, not peaceful parenting.

I'm so sorry to hear this! 😢 thank you for the advice. I need to make a plan.

There’s a brilliant book called The ADHD Effect on Marriage by Melissa Orlov (I think that’s the author but don’t have in front of me). I’ve found it really interesting and it has helped improve my relationship with DH who has ADHD with some autistic traits.

It has some great practical advice and has helped us find much better ways to communicate with each other. Maybe it might help you as well OP.

You have SO much on your plate OP.

A special needs school might give you at least some space.

Perhaps some counselling as well - through the NHS if you cannot afford private - to help you explore any other possible options to help you in your circumstances.

Don't home school, there will be places she can go, and it's not necessarily good in the long run to exclude her from society. It's a rod for your own back where she will cope less as an adult, so you might end up being her carer as an adult and never get some freedom.
Your DH does not get to opt out of his obligations on the grounds of not being able to be of emotional support. It's practical support you need also. So get him to look after his own DC so you can go out and have some 'me time', whether that is gym or a walk, or some other hobby.
Look for support groups for people in your situation for your emotional support.
Day to day, your DH is never going to be organised, so it's either lists and post-it notes or use note and calendar on your phones to the max. It's going to be management of him and constant reminders, but a repeat alarm set on his phone might help you to not have to keep doing it.
Does your DH have a formal diagnosis? Might be worth looking into it if not.

I've felt how you have.
It became clear that my ex was neurodivergent after our first child was born. I then realised that both his parents are neurodivergent (undiagnosed). My ex and I went to several relationship counsellors who all felt that his struggles to relate were due to undiagnosed neurodiversity. They asked him to do individual therapy and seek a diagnosis. He wouldn't. His neurodivergent family are very insular and I was excluded from the family unit early on. I think because they have all relied on each other so heavily through the years just to get through life and I was this weird, outsider with different ideas and a whole different way of living.

Then, it became our eldest child (10) is also neurodivergent and I'm experiencing the same battles as you are. The biggest help for me has been separating from my neurodivergent husband. I was drowning in it all. Everyone sucking my energy, my time, my patience. His executive functioning was also terrible. He has returned to live with his parents where I think they are all happier with the set up as they're all together again and now I only have to worry about my children and not rely on him for anything at all. Also when the children go to stay with him, I'm comforted knowing that there are 3 adults to care for them and not just him alone.

I've also come to realise that I'm not completely neurotypical myself and have diagnosed myself with sensory processing disorder. My ex and my eldest daughter are sensory seekers so you can imagine what that did to my brain! You may have something too as we tend to attract similar people. Although, I also realise that my ex and I are poles apart.

I also used to feel like a mere carer for everyone else's needs. It's horrible. Like we don't matter. The best thing I did was to become a single mum and I now have a bit of free time when the children are with him. He is also content with only a couple of overnights a week which protects the children a little from the dysfunction. I feel my older child is much more settled at home now with him living elsewhere.

My youngest child has SPD like me I think but is not autistic or adhd, and she also seems more chilled without the constant chaos of her father around us although she's a total daddy's girl, so she does miss him.

I often think we have to get creative in these situations. A functional, typical approach often won't work in a neurodivergent family. It would have been different if he has sought the help, support and diagnosis that we all so needed, but it was his selfish stubbornness which ultimately ended our marriage, not his neurodiversity. It's good to separate the two I've found.

Goodluck.

Hello I am a Neuro-typical with a neurodiverse family. My husband is going through diagnosis later in life for ASD and we have an 11 year old with ADHD and 9 year old suspeced ASD like her dad. So as you can see I am the odd one out.

I've had a turbulent relationship with my ASD husband over the past 17 years, and I've had suspicions about his ASD in the recent couple of years but wasn't brave enough to mention it to him until now. So the process has just started towards diagnosis and finding tools to help us get by with eachother. I am absolutely certain about him, I have neurodivergent family members and have recently worked with neurodivergent students in my job. Suddenly everything is clicking into place, everything we have struggled with so much on a daily basis over those 17 years.

I guess i am writing because I feel lonely. We have been arguing more lately, he is very snappy, shouty and I just don't feel able to tolerate it now, especially in front of the kids and we have a 1 year old baby.

Sometimes I feel I would get along happier in life if I was alone with the children. But since we are only just beginning this journey I feel I need to see if I can learn the techniques to get along better and give that a chance.

I'm overwhelmed with information and lack of time due to the baby. I also have a health issue which, if not adequately medicated causes me major fatigue, mental health issues and my body can start to shut down. Hypothyroidism is what I have and it can be very difficult. All my adult life (I'm 35) I've formed unhealthy habits as a coping mechanism to get by in my relationship and deal with stress and loneliness such as smoking and over eating, which has contributed to my ill health. I have somehow now managed to quit smoking for the sake of my children but my crutch and comfort has now gone.

I have a lot to learn for the sake of my children and my husband and it just feels like a LOT. And of course I am lacking the emotional support and feeling of love and consideration I need. Most of the time he makes me feel invalidated, argues with my opinions, is blunt, unnatentive and snaps at me. Comes with the territory I know. I was just hoping to find someone to talk to online because I really could do with some help.

Very very similar here. Not time now to post much (!) but sending solidarity.
For light relief as well as genuine understanding see ASD with a GnT on FB - fun vids from an ASD mum of 2 Autistic children one with PDA (like you, and me).
Her name is Lisa Lloyd and she's written a great book called Raising the SEN Betweeners.

@ILOVEPINK123 maybe join the Asp thread in this forum as very helpful advice there

ASD partner here as well. I found joining a community with other NT women in neurodiverse relationships has been helpful at empoweredNTCircle.com