Possibly autistic & ADHD kids, DH can't cope

[BMIwoes]

Sorry this is long. We've been together 18 years and mostly v happy. Have 2 sons, age 10 and 11. 11 Yr old has had problems with emotional regulation for a long time and it's getting worse. His new secondary school (Yr 7) suspect he may have v high functioning autism and have been masking, but now can't manage it anymore as he gets older and life is more complicated. We're on CAMHS waiting list. DS2 is also on wait list for ADHD assessment.

Me and DH work full time, mostly from home. He earns more than me but we both have good income. DH more than pulls his weight at home, I'd say its truly 50/50. He's supportive of my career (I'm much more senior than him but lower paid industry). We don't have money worries thankfully.

Prior to Covid we had a lot of support from PIL, who would look after our boys for a few days every 6-8 weeks. Post covid they are of course older, and our eldest is harder to manage, so they can only manage 1 boy at a time and much less often. This is of course fine, but I only now realise how important that regular break was for us and especially DH to decompress from the stress of managing DS1.

The problem is DH struggles so much to cope with the kids and its making all of us miserable. He is constantly irritable, snappy and joyless. He doesn't want to do anything with the kids although happy to take them to and from things. Every day feels like he is just trying to endure it until they go to bed. It leaves me in the position of being the 'nice one' which of course makes things worse and more imbalanced. Holidays are particularly bad as DH gets so overwhelmed after 2-3 days and then sinks into misery. I feel like I'm trying to manage everyone's emotions all the time and it's exhausting. DH hates the fact that DS is so rigid and yet he is also very rigid and so they clash constantly.

I suspect DH may also be neurodivergent, and possibly me as well. Some of the things that we have in common is we both get easily overestimated, need a lot of time alone to decompress and can be very obsessive about our respective interests. I'm a lot more emotionally articulate than DH and will prioritise alone time as I know if I don't I can't function. DH will stay up super late to have time alone but then is exhausted next day and so more irritable. He's no good at identifying and saying what he needs. I feel resentful that he doesn't seem able or willing to make an effort to help himself so he can be less miserable. He resents me because he thinks I'm being selfish. We're both exhausted. It's horrible. I want to help him but he gets defensive and angry if I try tp talk to him abput it. We're all miserable. I don't know what to do.

We see a child psychotherapist to help us deal with DS1, and are registered for a non-violent resistance parenting course soon which I think may help us with the kids. But DH is so down about everything it feels like anything we try is fighting a losing battle.

On the face of it we have a good life - good jobs, nice home etc etc. But it feels like cracks are appearing and I'm powerless to stop them

My boss is an entrepreneur/angel investor has Tourette's and is severely dyslexic- she's amazing!! The label term is very much old news, for school purposes and possibly further education it's much better to have that diagnosis. No need to shout about it or wear a special hat. Just take the extra provisions and support for your children. There's a fine line and it's often crossed, if the support isn't put in place and puberty hits you may see a very frustrated child who starts failing in school, misbehaving, follows the wrong crowd because they're desperate to fit in.. honestly I have seen this happen all because the parents don't want 'that diagnosis' I'm open and honest with anyone who wants to talk about Autism, my dc are bloody amazing and both doing very well at school - we have an open dialogue regarding feelings, struggles and understanding others. Yes they come out with random stuff, one of my dc recited his whole puberty lesson to me on the car journey home from school last week practically word for word - not a snigger in sight! ☺️ it's cool, I love their quirky little ways. Honestly it's about how you approach it.. it's not a disease and many people have it, after all it's what's makes us all unique!

Hi OP, I just wanted to say I loved your description of your 10 year old. I have one like that!

My DD got into musical theatre a year ago and loves it. DH rang the producer when she was offered a place and disclosed that she had ADHD and ASD and had never stuck with any club and he said cheerfully 'oh she'll find her tribe here'. He was right.

Regarding ADHD meds, there's a really useful guide for parents I saw recommended on here. I'll find a link.

www.amazon.co.uk/Parents-Guide-ADHD-Medicines/dp/1787755681?pd_rd_w=tnhlM&content-id=amzn1.sym.66d7527c-6da1-488a-a4ec-7fb13777a972&pf_rd_p=66d7527c-6da1-488a-a4ec-7fb13777a972&pf_rd_r=90WYTR4YYXGZ1BMZ77TC&pd_rd_wg=ztkZ6&pd_rd_r=7d8f54e4-989a-4498-8ab8-4c9f9b978a79&pd_rd_i=1787755681&psc=1&ref_=pd_basp_bia_rpt_ba_s_1_sc

Hmmm. You remind me of myself a bit. Two child who are hard work, my two are younger, but like you it's DC1 who is the hardest, DC2 slightly neglected, and DH struggles a lot with DC1... I honestly feel as if I'm parenting 3 children sometimes, managing all their tantrums. You work so hard to hold it all together and fix everything. Well I don't have the answer because I'm doing the same (!) but IMO your husband needs to take some responsibility. It sounds as if he might be depressed - but also resistant to considering it and seeking help? Also his expectations are clearly too high. He needs to educate himself about parenting ND children and most importantly manage his own triggers so that he can be calmer and be the parent you all need him to be.

I think this is primarily a DH problem. Of course your children are hard work but you need to be working together on it. Not spending energy you don't have managing him as well as them.

Couple's therapy might help if you would both be open to it.

If you’re in Kent, Psicon in Canterbury have been excellent for my dc. Private autism assessment. Good luck.

Thanks so much all. I feel so much better this evening than I did earlier today. Its great to hear of other mums who have been through this and their kids are doing well. I just need to get DH on board with change and learning. It will be a struggle for him but I know he really cares and wants things to get better.

do you find that ADHD meds help with emotional dysregulation @alyceflowers ?

I think you meant to tag someone else.

Does dh need to work from home all the time? It’s fairly claustrophobic. Could he go for a cycle or the gym or join a club? Could he start something new with one of the boys?

Hi.
I'll admit, haven't read all the replies as ADHD and autistic myself.
People seem to think a diagnosis is everything when in actuality, while it provides a bit of clarity you get little if any post diagnostic support. Happy to signpost to services in your area if you let me know where you are.

The book @Phineyj recommended The Parents Guide to ADHD medication is phenomenal!

@Hollyhocks7 if you meant to tag me then yes the meds do help hugely in that regard. We were told they wouldn’t as it’s not what they do but they have for ds.

So much of this resonates with me - am
In a very similar situation with a depressed DH. I have ADHD and I strongly suspect both of our kids have it too. DH just doesn't have the mental capacity to cope with them and/or parent them in the way they need a lot of the time. I too feel like I'm parenting three of them, and being pulled in different directions which is hugely overwhelming.
I'd love this thread to keep going with tips and solidarity for those of us in a similar situation.

@Minkyscamp sending you solidarity too

@Minkyscamp yes! It would be great to keep this thread going. We are doing OK after years of struggle but always nervously waiting for the next challenge - probably puberty then secondary transfer. Argh!

We finally managed to get into the NHS system recently after years of trying. The doc was helpful and said our private assessment was good quality (and it jolly well should.be given the price tag!) but has said that any further help is conditional on us doing the New Forest parenting course.

Now we've no objection to that (although kind of ironic when we needed the help years ago and have now made a lot of progress). But the course is only offered day times on four weekdays in term time (think 4 x Mondays) which is completely impossible for us because I'm a secondary school teacher and DH's a lecturer. Our bosses would certainly give us a day off for something urgent, but not 4...especially the same day.

Can the NHS really make advice on medication conditional on attending a day time course?

With respect, your husband is making things worse.

He absolutely needs to open himself up here. You two are a team and you two can and absolutely should be sitting down and talking frankly and with candor about your struggles, hopes, fears and needs as a team.

Put together an action plan with the goal of making everyone's life better. You need structure and support and you need it now.

Write a list, get it all ticked off.

You need to be a team together otherwise your family will disintegrate.

Show this whole thread to your husband!

@Phineyj that seems totally bonkers that it should be conditional on a course when you've been dealing with this for so long already. I would write to the practice manager or PALS for advice and ask them to reconsider.

I really need to move forward with getting both of mine assessed. Particularly my DS who is 9 now, and especially after reading all the comments on here about it getting worse through puberty and the transition to secondary. We did pay for a private assessment 2 years ago, but school were unhelpful (he masks very well and is academically very able) and he was just below the threshold for a dx. I think, having since been diagnosed myself, the psychiatrist we used was pretty unhelpful, as she really dismissed our concerns that he was masking at school. This was mainly why I got a diagnosis myself so that if we decided to get another assessment done for DS, or indeed DD, we wouldn't be dismissed in the same way.

I've also found the suggestion of climbing and bouldering really helpful - we've had similar reluctance from DS to engage in things like football. He does love tennis though (constant stimulation I suppose) and so we are encouraging that. I've also been reading quite a bit about more holistic approaches to helping ADHD, and it seems that anything which involves balance is particularly good for the ADHD brain. I now make my kids brush their teeth standing on one leg, and try and get them doing yoga poses whilst reading etc - don't know if this might be of interest. Cycling, skating, scooting are all really good too.

Clip and Climp is good @Minkyscamp if you have one accessibly near, also AirJump or similar. DD also likes BMX-ing on a pump track and recently tried synchronised swimming (I was surprised to find boys do this too). The climbing and trampolining are great as you pay and go and the pump tracks are free (we have been sooo grateful for the one near my inlaws - fills the gap between 6am and 9am very nicely!) Synchro was a bit too organised with all the competitions and grades and frankly I wasn't too sure about the sparkly leotards, but in terms of messing about in the pool to music, DD liked it.

We were really lucky with the school. Although DD masks, they saw through it quite easily and believed us 100% about our struggles at home. The assessment place we used was so nice. It was far away though - a good hour's drive, in another area. And no ongoing support unless you pay even more. Since then I've discovered they've done most of the assessments for families in my borough. It makes me so cross that the NHS outsources like this, letting parents do all the leg work and bear all the expense.

I am going to do some one day Zooms the LA offers on individual topics like puberty and hope that will suffice for the paediatrician. I am undecided about medication anyway because we struggle enough with eating and sleeping as it is.

A good service I discovered is called Care Opinion. When you have an issue with a healthcare service, you can tell them and they actually investigate!

Axa PPP added it to their cover in October 2022 and they use Problem Shared who are also used by several big universities. It is also covered by BUPA I believe, so hopefully you will be able to access help soon.

All families have to adapt their parenting style as kids get older and change. You just need to figure out what works for you as a family. It sounds as if you are on the right path now. Throw money at it to get extra time for yourselves too. Good luck

We've been in similar situation. 13 year old DS - ASD/PDA but expert masker. We both find it hard to cope.

100% do not regret seeking out a diagnosis but for us it was a bit of an anticlimax to be honest. Went private and was told we'd get a mega report with lots of advice but it mostly felt quite generic to me by the time it had come as I'd already done lots of reading myself.

However, the best things about it were:

• feeling like we now had "permission" to parent the way he needs rather than the "norm". No more forcing sitting at the table for dinner etc etc.
• but that's also "permission" for us to find it all hard and to work together to find our personal ways for us to cope
• the secondary school were providing some support already but the diagnosis means we are no longer tentative about asking very specifically and making a fuss to advocate for him (we both shy away from confrontation). I can see the difference in how seriously they take us with a diagnosis (he masks at school)
• but most importantly moving on past the diagnosis stage to accessing more other types of support for him. DS has weekly sensory integration OT sessions and they are amazing. Can see the improvement in his ability to self regulate which helps us all.

Think I saw somewhere in the thread you were SE based - I can recommend a clinic called Starjumpz.

You all, DH included, need to go to bed early enough to be refreshed. De stress. Brainstorm about how to add calm ..

Simplify as much as you can. Aim for calm above all else and if you are too tired to parent at least model civil and kind behaviour.
Hire a house cleaner - for bathrooms, kitchen and folding laundry. Get the kids involved in one cleaning task for the household each week. Rotate the chore every month.

Hire a baby sitter once a week so you and DH can connect.
Cook simple, fresh food. Monitor screen times.
Take an out door walk in a green space as often as you all can.
Take baths. Massage each other's shoulders.

Try to give each person their own quiet corner in the house.
You and your husband give each other half an hour away from child care every day and two hours every week end.

If your focus is less on achieving tasks and more on feeling calm, over time you might have enough left in the tank to relax and smell the roses and to just not be as irritable..

We also used Starjumpz. They are very busy though. Their waiting list was closed but definitely worth a try.

Hey all. Thanks so much.

We're in South East London. DS2 loves skateboarding and is very good at it, so I'm going to look at what we could do to get him doing that after school regularly. We need to rearrange our working days and finish times a bit to make time for after school activities.

DS1 is also a lot calmer when he is physically active, but he's really resistant to any kind of 'organised' stuff and he cannot cope with team sports as banter and competition are major triggers for him. So need to think on that. Climbing was great for him so need to see if there is a wall we can get to.

I've had a bit of success today - rang our health insurance provider and they will provide cover up to diagnosis upon receipt of GP referral letter. So now I'm going to try and get GP appt and let's see where that gets us. I've also made an enquiry with some local assessment services I found on the NAS website.

The NVR parenting intro session we are booked on looks like it may be helpful.

Screen time especially online gaming (e.g. roblox) are so bad for DS1's mental health, so we are really strict on time for these kind for things and ban a lot of games. But this is another source of constant conflict as something of socialising now involves playing/talking about these things.

Does he like cycling?
Do you have a garden with space for a trampoline?

Also, if your health insurance would cover an OT assessment (as part of the ASD assessment, or separately) that can be very helpful.

I've been taking my son to OT and was surprised to see how much he used the swings there so I got him a small indoor swing for the house and he uses it loads.

We have similar issues with screen time but we do allow it because he uses it to calm down and relax... if he was gaming it would be different but for now it's mostly just passively watching stuff.

@AnotherEmma he loathes cycling, the unpredictability of other road users and not always knowing his route scares him. No space for trampoline but will think about if there is something else that might work.

We're not so strict on TV but he gets very obsessed with particular programmes and will endlessly repeat sections which drives me and DH crazy 🤪