Exhausted balancing my AuADHD and NT child's needs?

[CoffeeandCakeEnvy]

Hi all,

I am posting here for traffic. I have a year 4 high functioning AuADHD dc with PDA, and rejection sensitivity disorder.

I am finding his behaviour progressively exhausting. I know he cannot help it. We are currently waiting for the medication to reach a therapeutic effect after numerous trials of others. Mornings are horrendous and his NT younger sibling struggles with the behaviour, so I am finding myself pulled in both directions to try to please both of them. I am utterly drained before I even leave the house, then I see all of the parents with their NT kids strolling on, I feel terrible for being envious. Some really do not understand fully either, but I wouldn't either if the shoe was on the other foot. How can you truly understand anything unless you're actively living it.

My youngest has a club after school, and walking home one to one he said, "Mummy, it is so lovely and quiet, I am really pleased X isn't here shouting and talking over me." It was heartbreaking to hear him say that .
I also realise what a doddle it is with NT child, and dealing with behaviour. I adore dc1 and wouldn't change him personality wise for the world, but I would take his struggles away in a heartbeat; it is painful to see. I dread pickups, waiting to see how his day was, if a member of staff will come out with him. I dread when the school ring, thinking what has happened now. The kind of profile he has can be extremely demanding, and I feel I have ran out of energy after years of it.
The things I am also finding challenging to navigate is that he can do a 360 on tasks e.g, he is okay for a task at school then majorly dysregulated, and vice versa. The school must think I'm crazy, as I will ask them to make a reasonable adjustment then suddenly he is fine now to do it. He is highly intelligent, above average which I feel is complicating the situation even more.
I am not sure what I am really looking for from this thread, maybe some similar experiences.

Thank you.

This is brilliant! I love your example about taking turns. Because DS2 (and actually DS1 used to before he entered teenage grunting mode) tends to monologue for ages and my ADHD-ish communication style which is common between me and certain friends and family members is that we just talk at/over each other at the same time and sort of manage to follow the conversation anyway, I noticed that both me and DH had got into the habit of letting both younger DC talk at once and that this wasn't really conducive to either letting DS3 talk, because he is the most NT-acting of all of us and tends to just give up, but also, DS2 would get frustrated that people are "interrupting him" - so I started to actively ask them each to wait and take turns, and it has really helped. But what I love especially about your example is your recognition that it is a work in progress. It's not perfect all the time, nobody remembers the new thing 100% of the time, the children don't always respond well, but recognising that it's OK because it's progress and we are new at this and it's not going to go smoothly straight away is so important.

Sorry to add another resource, but I was on instagram this morning and there is a poster I follow there called theteachermomma, and she has some great practical examples of this kind of thing and I have found her really helpful as well.

Thanks for saying it sounds like we are doing well 😅most of this is the benefit of having several years of research, knowledge and experience already before DS2 came along. DS1 was challenging (ADHD) and I had no idea why and was operating in the dark a lot, especially as I was undiagnosed myself then. By the time DS2 was here I already had a solid foundation of what helps and what doesn't help but there is always more to learn and understand as well, because they are all so different.

Wow it sounds like dc1 rules the house, perhaps a tad of “selfish brat disorder” has kicked in there too! Easily done with a ND child; you work so hard to regulate them; the clever ones are very good at manipulating situations to their advantage.

You might need to consider dh reducing his hours as it’s really the only route you have left to create more safe space for dc2 to have a chance at a relatively normal childhood.

I was dc2 in the situation and it was deeply damaging to my self esteem and I spent a lot of my childhood frightened of triggering my sibling’s outbursts. Being scared and intimidated and feeling “second” is no way to grow up, and has had lasting negative consequences for me.

Sending you huge sympathy. I have a 12 year old with a very similar profile and similar issues with my 9 year old. Non stimulants have made a big difference but also ultimately a huge battle with the council to get him into a more specialist school.

My younger child is 9 and so different. Calm, cuddly, sleeps better, and so much more content. If you'd asked me age 6 or 7 I'd have confidently told you he was definitely NT.

However.... age 8 it all changed. Retrospectively it had been building for a while but I put it down to stress from his brother. But now I am 100% sure he's also AuDHD. Much more the inattentive side. But as other kids got more socially advanced he didn't in the same way. The gap widened hugely and school stress has led to far more issues at home. I absolutley didn't see this coming as he seemed fine socially etc. I think things were so hugely hard and explosive with his older sibling that I missed the more subtle signs. So with such a big family history I'd be really cautious about dismissing the younger one as NT. He might be but it's too early to say.

I'd ask for a disabikity social worker if you have one. Could you reduce hours at work? Do you have DLA for him?

Very similar experiences. Child is 10.

The thing is with high functioning kids their capabilities intellectually can mask their emotional immaturity. We had a bunch of assessments done with my son when he was around 7 years old and though intellectually he was more like an 11 year old, emotionally they aged him around 2.

We hadn't bothered with a lot of the classical autism stuff like now and next boards because I'd thought that was more for kids who were non verbal. Actually leveraging more of that toolkit was massively helpful.

So we started to make really regimented plans, of an evening we'll pre plan everything like route to school, what we're having for breakfast, what we're wearing, what the day will be. Means there is less anxiety and uncertainty.

I'd really recommend getting speech and language therapy. With higher functioning kids we always ignore it as I thought the point was to teach you to speak. It's not! It can be about learning emotional and behavioral regulation. It's the single most important thing that's changed my son from being totally unmanageable to basically a lovely popular kid.

I don't think your use of the term selfish brat is helpful. This is a little child that you don't know that you're talking about.

Caring for a disabled child, regardless of the disability, takes up more time and energy than caring for a non-disabled child. That's just how it is.

It requires thought and creativity to manage this balance in a way that doesn't leave the non-disabled child out in the cold. I hope the OP finds a balance that works but there's no point blaming the other child.

@CoffeeandCakeEnvy during the darkest days with my two, we separated them entirely, so we'd split the weekends I'd have one child one day, the other the other and husband same so we'd each get a day with each child. Means the eldest always got the 1:1 he needed and youngest didn't miss out. One would usually go out one would stay home (and do playdate or whatever as needs be). We did this for 18 months or so until eldest settled. Was hard but when things are so dysregulated family time is no fun anyway.

You can have that and maybe you still will.

We went through a stage where my youngest had an actual panic room set up because the eldest would attack him so ferociously and with no warning at all.

A lot of therapy later they are now the very very best of friends and adore each other. (They are 10 and 8 now)

@CoffeeandCakeEnvy
Just wanted to reach out and say although I don’t have this with my children, I have some friends who have this exact same scenario and I do appreciate how difficult and demanding this is.

One thing I would say is from speaking to a really good friend who deals with this, is the importance of building a support network of friends. Friends with ND kids who get it but also like me, friends without who can just be there for the other parents as added support. My youngest son has a friend like this and he can be very difficult but we’ve grown to understand what makes him tick and I would always include them in plans and make sure parents of ND kids aren’t isolated as sadly this sometimes happens if others just deem them as “naughty” and don’t appreciate the issues with this.

Are there any local parents/carers groups you can tap into??

I fully get how you must feel with everyone just coming in/out of school, no issues, plodding along and not aware of the bigger picture and how exhausting this is for you as a Mum and it sounds like you are doing a fantastic job here.

Thank you so much for this reply, you have no idea how much I needed to read it today. It is such a massive relief to talk to someone who just completely gets it. Your validation about this being a work in progress, and the reminder to give ourselves grace when things don't go smoothly, resonates with me so much, as I am very much a person where it is 'okay to not be okay" for everybody else, I definitely struggle to apply that same rule to myself (apologise for the cliché saying)!
Your words caught me at a moment where it feels like everything has hit me like a ton of bricks, and I've been feeling like I'm completely floundering and a bit lost! Age 9 is proving to be such a difficult stage to navigate; my usual "cheering up" techniques I used when he was younger just aren't working anymore. Plus, my youngest is so much more aware now, so just trying to balance the two of them is exhausting. I honestly don't know how you manage it with three!

It is incredibly eye opening when you suddenly start seeing ND traits within yourself I feel, and possibly older family members as well; suddenly your whole life makes sense, and the pieces of the puzzle sort of come together. Like you, I haven't been formally diagnosed, but I have very strong ADHD traits that I've just had to mask and suppress as an adult as best I can. I tell myself, "wait, don't jump in", before I blurt something out! 😳 Due to this I find I gravitate to other Mums with ND dcs, because they just understand more.

DS's profile feels like a constant, difficult tug of war between the autism and the ADHD so a lot mroe difficult for him, and I struggle with the autism side, and honestly, we are just a family of neurological differences in general! It’s a lot to balance as you know well. Right now, I'm trying to find techniques to encourage my go with the flow 6 year old to actually express his needs in amongst this craziness, because I really don't want him internalising everything and going into himself the way I did as a child. At the same time, dh and I feel that dc1's accountability has been sliding a bit due to his profile, and we need to work on that because it won't do him any favours down the road.

Thank you again for the incredible solidarity and for sharing your journey. Knowing there are people like you a few steps ahead, navigating the exact same chaotic waters with so much wisdom, makes a world of difference. Oh and thanks again for your references!

Haha, I agree, and hold my hands up to that. I have certainly found it difficult to separate what he can and can't help. He has lovely traits such as being the first one to notice when people are upset, he comforts kids at school, comes and hugs you, can be so sweet and loving. He feels deeply, very deeply though which is heartbreaking at times. He isn't a greedy child when it comes to toys/food/possessions, he would be over the moon with that one thing he wants more than anything in the world tjan a huge stack of presents at Christmas for example. I always remember a Christmas morning when he was about 7, and he checked to see if Santa had been to dh, and I first, I had to remind him to look at his own gifts! He hates clapping and fuss on his birthdays which is difficult because I want more than anything to celebrate my child, but I now do it in the quiet calm way he likes, no songs and no huge excitement, (difficult for me, as I have natural bubbly energy), so I reign it in!

However, the latter being said, yes dc1 has selfishness in another way. It is difficult to get him to do things for others, eg. picking out cards, acknowledgement of others needs being just as valid as his own even if they're different etc. He is also highly manipulative, and struggles to accept it is okay to make mistakes and take accountability for them. He also struggles with tone of voice and perceives a firm tone as "shouting."

I was also dc2, and grew up with the needs of my sibling being put above my own. Similarly to you, it affects me to this day, and has caused a huge rift with dm, and an estrangement from my sibling. I am sorry you had a similar experience, because it really affects your confidence, well it did mine anyway.
I am determined to break the chain. I had a little one to one chat with dc2 just last night using the words I needed to hear growing up. We are taking a trip on Saturday just the two of us which he is looking forward to.

Thank you for your kindness, I didn't take it to heart, at one time I might have. I responded to the poster as best as I could. Ds1 can be selfish, but he certainly is not a brat, and his ND does not excuse everything. As you said it is certainly difficult caring for disabled dc, and I think we all just do our best in the moment, and I strive to do better for both of them; I suppose what more can you do.

I feel for you. PDA can be brutal, both for the PDAer and for those around them.

Are you on any PDA-specific support groups? For a lot of us, that is the difference between vaguely functioning family and not.

Have you had any PDA-specific training? Well worth doing if you've not.

I'd second the recommendations of Ross Greene - but only if your child is fairly well-regulated - and Robyn Gobbel's work, Ns the Declararive Language Handbook. Reading stuff from PDAers can really help - Kristy Forbes is a great place to start and her training is very good.

You are probably already aware of this but standard autism approaches typically make PDA worse, and almost any type of traditional parenting methods are likely to have the same effect so working well with your child will likely involve relearning everything you thought you knew.

For a lot of PDA children, school is the biggest problem. The PDA Society did research that found that about 80% of PDA children are unable to manage conventional education.

People upthread have talked about setting clear boundaries. This is something that helps some PDAers, but for many PDA children, any boundary setting immediately causes dysregulation (it's a loss of autonomy/equality) so you have to get very good at holding the essentials (here those are safety-related issues) and be willing to be flexible as much as you can about everything else.

The PDA Community on Facebook is a really good group.

Good luck. I have a teen PDAer in burnout plus an AuDHD demand avoidant (not PDA) child with violent & challenging behaviour. I'm ADHD plus major fatigue and DH is autistic. Our lives are a million times better for applying low demand, high connection strategies for the last few years.

@CoffeeandCakeEnvy - BertieBotts talks a lot of sense and gives great advice! We know each other in real life (hiii @BertieBotts!) and she really knows her stuff.

IMHO the biggest thing to take away from the thread is that you’re not alone and your feelings are valid. UnMumsnetty hugs to you ❤️