Newly diagnosed ND mum of a high needs baby

[Kstar7]

As per title... I have a 12 month old son who is not developing typically and we've been struggling a lot since he was born. I posted another thread about him and if anyone has any similar experiences and comments, I'd be so grateful. You can find my thread here: https://www.mumsnet.com/talk/special_needs/5257586-struggling-with-my-12-month-old-development-concerns?reply=141561074

This thread is more about me. I was recently diagnosed with ADHD and I suspect I'm on ASD spectrum too.

I got diagnosed privately as when I approached my GP he practically laughed me out of the room and refused to refer me. He said "these days everyone thinks they have ADHD" and "you don't look like you have ADHD as you're not bouncing off the walls" and my favourite "even if you get diagnosed privately, we won't accept this or prescribe you the drugs as it's AMPHETAMINE and we don't support this sort of thing"🙄

After this visit I arranged private consultation and was subsequently diagnosed. Now my life suddenly makes sense and I can't believe I didn't realise I was ND much earlier. I could write a whole other long post about my lifetime of trying to beat myself into a round hole while being a very square peg, but I want to stay on track with this post.

What really prompted me to seek diagnosis was the struggles with my son. He is extremely challenging to look after, and has been since birth. Very hyperactive and distractable. It's really hard to describe how bad it is to others who haven't experienced it. I didn't know babies like this existed, before I had my own....

Anyway, even though my life was quite difficult before, I was able to cope. I have an amazing DP who is very supportive, and I had enough time for rest and self care. The wheels really came off since my son was born. Between my mental health struggles, my son's high needs, a stressful job... I find that I'm really struggling like never before.

My DP does more than his fair share of childcare and we are an amazing team, but I'm still so exhausted and overwhelmed. I don't know how to get through this. I did try two types of medication for ADHD but it made no difference. I feel extremely anxious all the time. I tried anti anxiety medication as well but it didn't help either (admittedly I perhaps didn't take it long enough to see results as I struggled with side effects).

Has anyone experienced anything similar or can offer any advice? As mentioned, my DP is amazing and I get breaks from childcare every day.... No other support network. Son is in nursery on the 3 days i work, then he's with me. I even tried to increase his days in nursery to get more respite, but that's not available.

I just feel hopeless, and helpless. I feel so sad about my son's struggles and I'm grieving for that first year of his life which almost ended me. Can things get better?

Anyone?

Same exact situation for me and in the end I gave up the stressful job, is that something you would consider?

I would love to do it, but we would struggle financially on one salary. Just went back to work and our savings were depleted during mat leave. Although I don't know how long I'll last as I'm finding it so hard to cope with everything. Did giving up your job help?

Yes it solved everything. Unfortunately I'm just not able to manage both children and a job - I'm great at one or the other, but can't do both. It's just the nature of the disability for me.

I've looked at your other post, it sounds super stressful and full-on. My second child (now 13) was a high-needs baby, very very unsettled and needed to be rocked, bounced vigorously, carried, held upright, didn't sleep, screamed a lot... I had people suggest my stress levels were making him stressed but I promise it was the other way around! He was later diagnosed with autism and ADHD. People would say "I don't know how you cope", and I'd say "I'm not coping" and they'd laugh awkwardly and nobody ever helped.

I hate to say it but I also gave up work. I now work part time self-employed because although he goes to school, he needs a lot of additional support and I have to have flexible hours and most importantly time and space for myself in order to cope.

It does get easier in a lot of ways, but I wasn't prepared for the reality of looking after children in general let alone one with higher support needs. I'm not cut out for this amount of stress!

I am on the waiting list for ADHD and autism assessments myself, prompted by going through them with my kids. I had no idea pre-kids that I was ND. Sorry you had such a shit response from your GP. (Mine was great and agreed straight away and said she wouldn't be surprised if I did get a diagnosis, which has shocked me as I didn't think it was that obvious!)

My advice is to cut back on the demands on yourself as much as humanly possible and try not to feel guilty about it. Look after your mental health so you don't burn out. Yes your baby will very probably get easier in general, but my high needs baby was also a high needs toddler... ND kids can often need a lot more input (sorry!).

Thanks for your reply! I really resonate with what you wrote. My son has/had the same issues you describe your son had as a baby. I do think he is ND, and also think traumatic instrumental delivery did some damage to him. I could tell straight away he seemed stressed, not like other babies, and this never went away.

I expect he will require more input and attention than "typical" children, i just hope it will get a bit easier eventually as I don't know how long I will cope with such level of intensity. He is just extreme sensory seeker and it's so hard to look after him. I expect it will get even harder when he is a toddler- faster, bigger, stronger. Like you, i really wasn't cut out for the level of stress having a high needs child would bring. But here we are.

I hope you don't have to wait too long for your assessments for ASD and ADHD. And that any potential diagnosis will help you understand yourself better and get support where needed. And medication- for me unfortunately ADHD meds I was prescribed didn't work, but I know it works for a lot of people.

Unfortunately I can't afford to leave my job. With all the bills it would be hard on one salary and I just can't drop nursery - it takes a lot of our budget but gives me a break from my son (while I work in my stressful job though), and he also likes it there. If we were on one salary we probably couldn't afford it. He will get some more free hours but not for over a year yet. I will just try to stick with my job for now and save money as I know I might have to quit in the future if he requires more care or doesn't have appropriate schooling etc...

Thanks for your tips though, I will really try to take some pressure off where I can, although there is very limited scope for that at the moment.

I hope that with your son being 13 you'll get some more rest in not too distant future and can focus more on yourself. Although I know it is not as simple with additional needs child even when they become adults.

I could have written this and feel for you so much. Just impossibly hard.

I was I think in a similar situation financially and stupidly stretched myself on a house pre-baby so there was literally no way we could have dropped to one salary.

What I ended up doing (and I appreciate this may not be an option for you) was change jobs. It took a bit of time to find something that still paid enough and was (a little) less stressful but I couldn't have coped in my old job - like I felt like I was some kind of disassociated robot going through life before I changed. To be clear it's not that I have changed to a very chilled job (it has its own stresses) but a much better employer in terms of family friendliness and work life balance etc which makes enough of a difference to have been a good move.

Ps you may think this isn't an option for you but my career move was sort of related but I would never have thought to change to it originally. Feel free to pm me if you think a job change might be a possibility and we can brainstorm ideas! I remember feeling so completely and hopelessly trapped because of the financial situation so I get it may sound like I'm oversimplifying 😕 Good luck 💚

Your situation resonates with me, I'm ADHD & ASD.

I feel my ADHD meds can make me anxious, or possibly I'm more aware of how I feel for the first time, after not really appreciating how hard life is when you are ND, I was (sort off) blissfully unaware of my disability for most of my life and although the diagnosis was necessary after burnout, in some ways knowing how limited my choices are in a NT world is hard to come to terms with.

I am a solo parent with no support and was planning on a low key low demand part time job and topping up with UC (mostly to pay for the childcare while I work).
As it turned out I found it incredibly overwhelming (had no idea I would before having DC) to be parent, I wasn't eligible for UC, and I can't not work and live on thin air.

So ended up with a much higher demand job FT which is much better paid, but I struggled so much juggling work and looking after DC all the housework/chores etc I got burnt out again and have reduced my days at work to 2.5 because I was having to buy in so much help and still failing it was ridiculous.
Although I only work 2.5 days I still pay for 4.5 days childcare because I need 2 days to recover from work & child rearing and to be able to try and keep on-top of the life admin/housework etc in peace.

It goes completely against the grain of who I was/thought I was before DC I had a full, creative & interesting life. Now I am just surviving, but it's much better than not surviving.

Main things I've done which might help you:

Money wise DC has been diagnosed with some disabilities (so far seemingly is NT) and we get DLA money because although (fortunately) they are fairly easy to care for, there are extra costs and therapies I have to pay for privately.

I've reduced paid work to the minimum so I've accepted that my quality of life is now on the floor compared to most NT families, particularly obviously because I am a solo parent so similar outgoings as a couple but only one source of earning power/childcare/running the home.
I can't afford to pay down my mortgage, or save for retirement, holidays, days out etc.
I can't really relate any longer to my middle class friends, we live very different lives now, and that's hard, but I don't compare myself to them or how I expected my life to be. I try to accept how my life is now and to try and be grateful it's not worse.
It's been tough and I've had to give up some really important elements of my old life, but I have to prioritise my health because without that it, it's game over and I'm not sure what would happen to my child (can't afford life insurance!) so I try to look at the bigger picture and make do for now, life is as simple as I can make it.

Probably not what you want to hear.
It sounds miserable, but it's ok, adjusting my expectations and ambitions has been hard, but I'm getting there.

As a dual income family you might be able to extend your mortgage, reduce pension contributions, your DH drop hours (might be more tax efficient) or condense your hours.
But I suggest you do something before there is a crisis which forces you to leave work entirely etc. Find a childminder if your nursery doesn't have any space, that might get you a breather which it sounds like you need.

It's hard, I get it. But choose your hard rather than waiting for the show to drop.

Hi, I read your other thread from last year and have replied to that one also. What you describe is the exact same as my 7 month old girl. I adore her but she is intense 24/7. I’m drowning. I feel like nobody understands how hard she is to look after or people think I’m exaggerating. All I ever wanted was to become a mum, had the most amazing pregnancy but a very traumatic birth and my little girl has just been super hyperactive, and restless from about 6 weeks old. She refuses to nap, she literally cannot switch off or sit still for 1 second. I genuinely do not know how I’m surviving. I spend my nights once she’s finally gone to sleep reading forums trying to find someone to relate to. I’ve taken her to the doctors multiple times and they just say “it’s normal, some babies have more difficult temperaments than others” . HV is useless, and find very patronising. Family always say “she will calm down once she can sit up, or once she can crawl” or “it’s just frustration” or “she’s teething. She has been sitting up since 5 months and nothing improved, she’s now nearly crawling and if anything she’s getting worse. I have never seen a baby like it before, she never runs out of energy. She whines and whinges all day long, I pick her up she stops whinging but then wriggles like she wants to be put down and then immediately starts whinging again and if I don’t intervene it just turns into crying. It’s like nothing entertains her. As her mum I’m pretty certain she isn’t neuro typical. How old is your little one now? I’m worried about going back to work in Feb, it will be a break for me, but I’m worried the childminder won’t be able to handle her. I’m going back 3 days. Does nursery handle your little one ok? Have they said whether they think he is ND? How old is he now and what is he like? Is he talking/ walking?
would be great to be able to talk to you about it. I feel so alone and like nobody quite gets it.

To OP and this most recent reply. I've also lived through this. My son's first year was the most difficult year in my life. He was so restless but also so clingy. I could never put him down, he'd get FOMO and wouldn't nap in public, would only nap in my arms or while driving, and he'd wake every hour of the night until I at 7 months hired a sleep consultant because I couldn't cope anymore despite co-sleeping. He is now 2.5 and although he is still very emotional and challenging, things are a lot better. He is still a very sensitive boy but he is also pushing for independence (for good and bad, I have to let him do everything himself, including getting dressed and make his own breakfast, or he'll have a meltdown. Frustratingly it means everything takes forever.) I only realised in the last couple of weeks that I most likely have ADHD and it's all starting to make sense now, including why I've struggled. Initially going back to work was the break I had longed for, and I work full time now. But now I'm struggling at work instead so I'm doing an ADHD assessment privately as I'm worried I'll get my second burnout this year if I don't get some sort of intervention including trying medication.

But the good news is, I'm still coping better now than I did when DS was a baby and I was on my own with him all day. When you've had a high need baby, even the toddler tantrums don't seem that bad. I'll take the terrible twos over the baby year any day! Hang in there, it does get better. x

@BlueUmbrellasSmiling Thanks for your reply. I’m glad to hear that you are coping better. Do you suspect your little one has adhd or do you think he was just a very difficult baby? When did he start talking and walking? Have nursery always coped well with him?

I do suspect he may, yes. I was always prepared for him being neurodivergent, as my partner is dyslexic and there's also autism in his family. No signs of autism in my son but the restlessness and sensitivity I suspect may be ADHD, he also gets constantly distracted. Note that these traits are generally common for toddlers anyway though so they don't diagnose before the age of 4. He's absolutely fine in nursery, always has been, except for separation anxiety at drop offs at some ages but that's normal for all children. The only negative they report is he doesn't always listen and do as told. He is fine with speech (bi lingual as I'm Swedish) and he's obsessed with numbers, can already count to 100 and he likes to say anything that's in a sequence like days of the week and he's recently learnt the planets and we're doing the months of the year now. Also really good with puzzles. When they walk and talk varies massively anyway but he was within a normal age range for both. But it's the emotional side that is challenging, as said he will have meltdowns easily so I have to really prepare him ahead of us doing something, let him dress himself even though it requires 20 reminders as he gets distracted and wants to do something else, or just says no for the sake of it.

@BlueUmbrellasSmiling @EmEm97 thanks for your comments and sorry for late response.
@EmEm97 : I'm so sorry you're struggling. There is a lot to cover here, but in summary - my DS is 21 months old now. And yes, it's very likely he is ND.

BUT, same as PP said, things ARE better now than they were. First year was brutal and almost broke me. Combination of having a high needs, restless, sensory seeking and poorly sleeping baby, my own then undiagnosed ADHD, postpartum hormones, and adjusting to a completely new life that was so different to what I imagined and what I saw most new mum experienced around me. It was a lonely and stressful time. What helped me:

Nursery! DS loves nursery and it gives me respite. They cope with him so far but it's a good fit as they have a huge garden and spend hours every day outside. DS is able to roam. They have outstanding reputation and good understanding of SEN and diversity etc. Sensory room on site, etc. I hope that childminder will work out for you but I felt that nursery was a better fit for us as DS is too intense for a childminder i think, and would destroy the place and be too much to handle in a small space, if that makes sense. You'll need to see what works for you - forest nursery might also work for such busy and intense children.

DS goes to nursery an extra day when I'm not working and it helps me massively to have that day off every week. If you can afford it or have any family who can take your child on a regular basis (we don't), do whatever you need to do to prioritise your mental health. It's a long road ahead and as cliche as it sounds, you won't be good to anyone if you crash and burn.

Also, medication. I still struggle, but it is more manageable. After trying several things I now take a non stimulant for my ADHD (atomoxetine), but it mainly helps me with lifting my mood and better emotional regulation. So I recommend considering if medication would help you even on temporary basis.

I'm learning to accept my child as he is rather than what I thought he "should be". Even if it still upsets me that we can't do many "normal" things as a family, I'm not forcing it any more, and just doing what works for DS right now. A LOT of time outside. Parks. Soft play. Lots of sensory play. I'm reading and learning about his sensory needs and different parenting approaches.

Have to go now but will try to write more later. Hand on in there, you can do it!!!