Everything is terribly complicated. Any ideas?

[jsp5642]

Hi,

I wondered if I could ask about other's lived experience of ASD parenting (as opposed to what the books say we ought to do)?

My son is ASD level 1, as am I. Both diagnoses are quite recent - before that we were just considered freakishy smart and weird. Ds is hard to hang out with because of communication issues, and we've ended up with a coping strategy over the years where he is always either on his computer or playing 1-2-1 with DH or with me, or with our neighbour (aged 15) who visits a lot. He is also in full time mainstream school and scouts.

This strategy means that DS is on the computer a lot (especially from 5.30am to 8.30am), either playing games or watching other people playing games on youtube. I don't like that he has so much screentime, but it's just so exhausting otherwise, trying to cajole him into doing other things.

I had a really bad burnout when he was 4 after having worked 24/7 for four years while he had a sleep disorder. Initially I was housebound for 2.5 years with exhaustion and severe nausea, although I did go to the school gate twice a day during that time. I have had chronic health problems ever since (sensory sensitivity, food intolerance - I can eat about 8 different foods, post-exertional malaise that is easily triggered - I can go for a 1 hour long walk once a week but not two, frequent long viral infections, and I get motion sick if I look at computer games on the screen because of the rapid movement of the screen. I also can't go on trains or be a passenger in cars for the same reason. I can't go to any public buildings or in the street after dark now, because the new LED lights give me migraine-type headaches.)

DS spends a lot of time on the computer, because I am frequently too ill/exhausted to play with him. DH is very very involved with us both and puts DS to bed every night and plays with him a lot during the day, in spite of having a very busy job. I have no paid employment. We have grandparents nearby, but DM was in intensive care over Christmas and is now in a wheelchair, with some neurological issues, so DF has his hands full.

Last year I had long covid that affected me quite badly for 8 months, then I was okay-ish for about 3 months, as long as I cooked everything I ate to 100 degrees and didn't go out (otherwise constant diarrhoeal infections). Then I had my covid vaccine and have just been feeling like garbage for the last four weeks since the vaccine. Currently living entirely on potatoes. Yippee.

The thing is that I would like to try to make my life a little bit easier for myself, and I thought about this:

Currently DS gets up at 5.30am and watches youtube videos of computer games until it's time to get ready for school at 8.30am. I tolerate this because it gets me an "easy" life. (It's not easy getting up at 5.30am, but shifting him to get up later is about as easy as flying to the moon unaided.)

I wondered if maybe I am encouraging DS to get up super early by giving him unfettered access to screen time and if it would maybe make sense to say that he can get up but can't have screen time until 7am, and see if that makes him get bored and sleep later.

I "discussed" this with DS (I am so tired that I blew my lid) and he says it couldn't possibly work and he would be alone in the night with no company and it would be cruelty (cue DS in foetal position with his back to me).

I just wondered if any other parents have ASD children and have experience of how to manage this kind of situation? I'm so tired.

My GP calls my condition "anxiety" and ASD and sensory processing disorder but there is no indication of how to make it better except with input from a psychologist - who I have been seeing for 6 years. She is great, but I am not getting better, so much as learning how to cope with my very curtailed life.

I wondered if anybody might be able to look at my situation from the outside and give any ideas. I feel as though I can't see the wood for the trees any more, and my GP is great but he is up to his ears in other people and a ten minute appointment doesn't go anywhere near a problem like this.

I might just be feeling really low because of the vaccine side effects.

Thanks!

I think we may also have hit cruch point because of the early sunrise. I am shopping for new blackout curtains... The old ones seem to have shrunk.

Hello, I saw your comment o another post and sent you a DM but after reading this I wanted to say please don’t worry about replying if it is hassle, it sounds as though you have enough on your plate already without strangers asking you for advice.
My son is equally keen on computers, screens etc and will wake up early to play on them, and I too find trying to limit them upsets him so much I don’t limit them as much as I feel I should.
What I find works (sometimes) with my son is planting an idea and then developing it over time. So not suggesting a big change to his routine straight away but taking about why we need to make a change and how we do it gradually. I know this won’t get the situation you want straight away but it might get you closer to it?
It must be so difficult to tackle when you’re trying to deal with your health issues at the same time and don’t have the strength or patience. I find this and I don’t have any health issues to contend with.

Hi SuperSue77,

Thank you very much for your kind reply. I did see your DM and have replied. It was nice that you got in touch. tbh a bit of a chat goes a long way and appreciate you getting in touch.

My DH is working on explaining to DS that I would like to sleep a bit later and DS gets it now. I think part of the problem is that we both wake at 5.30am and find it hard to get back to sleep. DS and I are going to both try and see if we can manage it. I have also ordered new blackout curtains in the hope that that will help.

Gosh I'm so tired though. I wish I could have a year off. This covid year has just run me right into the ground.

Ds only got his ASD diagnosis last week too, and it's never that nice to get a letter detailing one's offsprings shortcomings.

Thank you very much for listening.

Thanks for your reply to my message and this reply. We just got our letter this morning confirming the ASD diagnosis (though he told us on the day) but got to wait 6-8 weeks for the full report. The doctor was keen to highlight his strengths though which was good.
I think the black out curtains are a great idea, we use them a lot, though I must say after my son gets up i go back to bed! Though I know not everyone can do that, once they’re awake, they’re awake. I think it’s really important that you try and find ways to make life easier for yourself, any little thing that helps is worth it, I hope your husband’s talking to your son and the black outs work!

Hi SuperSue77,

It's really nice to meet you and know that you are in a similar situation - having just received the letter too.

The assessor was also very upbeat about DS's strenths which was nice.

I don't know what's up with me today tbh. I just feel like the whole year's sadness arrived on my plate all at once and I keep crying and feel angry at DS for waking me up early. It must be pretty strange for him as I usually just get on with it. Oh dear.

Can you ask for a double GP appointment?

How old is DS? Has DS tried Melatonin? Is he getting any social skills support &/or SALT?

Have you had a sensory OT assessment? Do you take Vit D supplements and have you had B12 and thyroid levels checked?

You say you can only go for a walk for 1 hour a week, not 2, but has anyone mentioned learning to pace yourself? So, you go out for a shorter walk so you don't end up exhausted afterwards and can use the energy you are currently using to recover for other things.

Have you had social care assessments? An assessment for DS via the disabled children's team, an assessment for you via adult social care and carer's assessments for you and DH.

Do you get PIP? And, DLA for DS?

Personally, I wouldn't give screen time from 5.30am, but trying to move to 7 in one jump is way too much. You need to move it back slowly, perhaps 10-15mins at a time.

Apologies for numerous questions, you don't need to answer just things to think about.

Hi 10brokengreenbottles,

Thank you very much for thinking about my problem and giving me your thoughts. I really appreciate it. Here are the answers to the individual questions:

Can you ask for a double GP appointment?

I have actually been checked very thoroughly by my GP over the course of three years, though that was all pre-covid. I haven't been checked by him except blood tests post-covid. I'm very unsure about whether I ought to be pushier about going back and asking again. I did wonder if I should ask to go to the long covid clinic, but it's so hard to tell. I've lost about half a stone post-covid, and can't get it back on. I am now just above the bottom of the healthy weight range. Also my memory has gone quite wonky and I had a lot of diarrhoeal illness last year coupled with high ferritin levels which are now normal again. I was doing quite well this year but then the vaccine flattened me.

I also had DM in critical care over Christmas, which involved me taking to consultants and nurses daily and at one point agreeing to turn off DM's ventilator with the possibility that she would die. This was while I was home-schooling DS. So if the GP said I was tired, stressed and anxious, he would definitely be right. :-)

How old is DS? Has DS tried Melatonin? Is he getting any social skills support &/or SALT?

He is 11 years old. His sleep issues are not bad enough for melatonin. He sleeps soundly from 8pm to 5.30am every night without fail. It's just that I think I would rather sleep 10.30pm to 8am, but moving him that bit later is hard. DH has discussed it with him today though and he is going to move forward gradually and try to wake at 7am. DS is having social skills help and has had SLT help. We see a paediatric clinical psychologist periodically to get extra advice. It's not that the situation is even that bad, but I do think it's worth the money so I have a very low threshold for asking for professional help, whenever I can figure out what the actual question is.

Have you had a sensory OT assessment?

Yes, I have and the person said it was sensory processing disorder exacerbated by severe stress and sleep deprivation in DS's early years. Luckily the local private expert sensory OT is a friend of mine so she knew me personally for two years before I approached her for an assessment, which was nice.

Do you take Vit D supplements and have you had B12 and thyroid levels checked?

My vit D levels are fine.

My B12 levels are at 250 which is low normal. [normal level 211.0 - 911.0]

My mean cell volume is 100.3 fL [normal range 80.0 - 99.0]

I know that if I take B12 supplements then my energy levels get massively better and my mind feels much clearer, like a fast flowing stream instead of the usual mud-puddle. It's a lovely feeling actually. Unfortunately B12 supplements disagree with me, as do all foods with any decent amount of B12 in them, so actually getting B12 into me is a bit horrible. I've started eating liver once a week, but I feel rotten for the whole day afterwards, and that's really dragging me down, while simultaneously lifting me up. This is part of why I'm so knackered.

My thyroid levels are low. Serum free T4 level 6.5 pmol/L [ normal range 10.5 - 21.0]

I thought that probably didn't matter since I am stick-thin and anxious, which I thought was usual for hyperthyroidism. I've been like this for 7 years, but the low thyroid is recent.

I also consulted a specialist dietician in New York over zoom (Fancy!) and she said that people with my sensory problems are often short of vitamin E, choline and omega oils. I checked and my diet is short of vitamin E, but not choline. Not sure about omega oils. I have paid privately for a vitamin E test, and am waiting for the results, but I have also figured out how to increase my vitamin E intake in the meantime.

You say you can only go for a walk for 1 hour a week, not 2, but has anyone mentioned learning to pace yourself? So, you go out for a shorter walk so you don't end up exhausted afterwards and can use the energy you are currently using to recover for other things.

I completely live by pacing. I have a lot of trouble with post-exertional malaise, and constant careful pacing is the only way I manage. I have a symptom chart and I watch it carefully to make sure I'm doing things right. Part of why this week is bad is because I wanted to give DS a good holiday and so took him out in a rowing boat twice at the beginning of the holiday week. I've been in bed knackered ever since.

In the bigger picture, my pacing has been totally thrown for a loop by the covid year. Two lots of home schooling, and DM in hospital and we lost a grandparent to covid and just the whole big change in routine. Also DS is moving up to secondary soon and recently moved up to Scouts. The change in routine is just flooring me. I know that that is happening but the constant plate-spinning is really really hard, while I'm also fighting existing chronic fatigue and long covid, and now dealing with the vaccine side effects.

Have you had social care assessments? An assessment for DS via the disabled children's team, an assessment for you via adult social care and carer's assessments for you and DH.

I haven't had that and I was wondering about it as DF has had one now that he is caring for DM. Do you think I would be eligible? I would really like to have one, if it was available for people like me.

Do you get PIP? And, DLA for DS?

No I don't get anything like that. I have read the stories of people on mumsnet who have applied for PIP and it seems really a hard process. Also DH earns a lot of money so if it's means tested then I definitely wouldn't be eligible. I wondered if they might know which council buildings still have fluorescent lights so that I might have options for still being able to go places sometimes.

Personally, I wouldn't give screen time from 5.30am, but trying to move to 7 in one jump is way too much. You need to move it back slowly, perhaps 10-15mins at a time.

Thanks, yes, that's what I'm thinking. I think now he's older and more in control we can ask him to try and go back to sleep at 5.30am. I think it's worth a shot anyway. We thought gradual change would be good.

Apologies for numerous questions, you don't need to answer just things to think about.

Thanks so much for taking the time to listen. It's such a bit mess of complication and being able to lay it out like this and ask for other's thoughts is really helpful.

The other new thing is that DS has moved up to Scouts and they want me to help out. The scouts runs from 7pm to 9pm and I can't manage to be out that late after a 5.30am start. If we could move the morning start a bit later, that would really help so much.

The dietician suggested that organic liver might be better and that does sound good but I haven't tried it yet.

My suggestion of a double appointment was in relation to there not being enough time in one appointment to discuss your complex situation. A referral to a long covid clinic or general chronic fatigue service may help. Can you fortify what you can eat and add in supplements to prevent further weight loss?

I can't help with thyroid results other than I know hypothyroidism can cause tiredness and depression. Despite normal Vit D levels do you take supplements? It is recommended everyone in the UK takes supplements over the winter, if you aren't going outside as much you probably need them year round. Some people have B12 deficiency symptoms with normal levels using UK ranges. Many countries treat B12 deficiency with much high levels. Have you tried B12 injections?

Did the sensory OT give you suggestions on how to help you cope?

8pm is on the earlier side of bedtime for 11. If you could move bedtime later 5 mins at a time you may naturally solve the 5.30am wake up, but if not try delaying screen time bit by bit.

You are eligible for social care assessments. Any help resulting from the assessments is subject to a finance assessment. You may have to pay for or towards care. Capital from your home is disregarded. For your assessments DH's income isn't considered and only half of joint capital/income. Even if you don't get any help it is useful to be on social care's radar should things change or you need help in an emergency.

PIP and DLA aren't means tested. You should apply, you are eligible. It isn't easy, but is possible. For PIP the benefits and work website is good, and for DLA the Cerebra guide is useful when filling it in.

If there are further lockdowns ask if DS can continue to attend school. Have you spoken to the secondary's SENCO.

Don't feel pressured in to helping at Scouts if you aren't able to.

Hi,

Thanks for reading and coming back to me.

I might phone up and ask if a referral to the long covid clinic would be possible. I suppose my GP might say no, but it might be worth asking.

I can't take any supplements or fortified food. It all causes nausea which is too bad for me then to do any of my usual tasks. I think I might phone up the free dietician helpline at Biocare and ask for their advice about how to take B12 without side effects. I think they might know. I will put that on the list. :-)

I haven't tried B12 injections but I gather that they are also known for causing nausea, just like the supplements. I think the only benefit is that they don't require activation in the stomach, which is not a problem for me I don't think. In that regard supplements are just as good for me.

The sensory OT said I should set boundaries to get the behaviour of people round about me under control. That is what the psychologist said too and I am working really hard at that.

DH isn't very keen on a social care assessment as we had a visit from a health visitor once which was really awful. We tend to try to just cope between ourselves or pay privately for help because of that. DH's income is £100k+ so if we needed it we could just employ help. I think the PIP assessment would probably not be worth it for us because of the difficult of the assessment and because we don't really need the money.

If there are further lockdowns ask if DS can continue to attend school. Have you spoken to the secondary's SENCO.

I see what you mean. DS loved lockdown home school though and I think he would be gutted if he couldn't do it when the chance came along. He finds school extremely difficult and made huge strides during his home school periods.

Maybe I should talk to him about how difficult I find his defiant behaviour. Maybe if he understood the effect it has on me then he might learn to be more helpful and accommodating? I feel that he may be old enough to understand now, and having the feedback from the ASD assessment last week really clarified for me what it is in his behaviour is making life difficult for me. I think that is partly why I feel so bad just now, because the assessor held up a mirror to our life and I was a bit shocked by what I saw. I will definitely put that on the list too. DH talked to DS today about it and he seemed to really make a lot of progress. I will ask for DH's help in this too.

Don't feel pressured in to helping at Scouts if you aren't able to.

I think I will definitely take action on this too. I really wanted to help, but I think it is just unrealistic just now, given the lateness of the meetings. I might ask if I can help with admin during the day instead, as that would be far less disruptive for my own life and pacing. I will do this tomorrow.

Thank you so much for listening. This is really helping me to figure everything out.

2 of my DC have had B12 injections without any side effects beyond the stinging when injected.

If you don't want social care assessments can you employ a PA for DS for a few hours a week? To relieve some of the intensity on you and give DS some independence.

I presume you are sensory avoiding? Did the sensory OT mention things like noise cancelling headphones, weighted blanket, sunglasses...

I would be careful how you approach asking DS to change his behaviour to make it easier for you. All behaviour is communication, so you need to find out why he is behaving like he is and change that. The last thing you want is for DS to mask. Some PDA strategies may help.

If DS struggles with school you can apply for an EHCNA.

If you feel up to it you could help with Scout activities that take place during the day at weekends.

Hi 10brokengreenbottles,

2 of my DC have had B12 injections without any side effects beyond the stinging when injected.

Thanks, that's really useful to know. I think my first step should be trying very low doses of oral supplements with just B12 dissolved in water, just to play it safe. I will work on that bit keep the injections in mind.

If you don't want social care assessments can you employ a PA for DS for a few hours a week? To relieve some of the intensity on you and give DS some independence.

I will keep this in mind. I think he might find it hard to have another adult to deal with when he wants time off in the evening, otherwise I might sign him up for a club or something. I would too, tbh.

I presume you are sensory avoiding? Did the sensory OT mention things like noise cancelling headphones, weighted blanket, sunglasses...

Yes that's right. I have tinted sunglasses, and am in the process of getting tinted contact lenses. I also have musician's earplugs, which are great. The biggest problem is motion sickness actually and people have recommended vestibular rehabilitation, but that didn't go well at all, as the minimum exercise writes me off for days. I think that if I could reduce the stress on my body and mind then the sensitivity would reduce, and then I might be able to work on sorting out my vestibular system. I am looking into the vitamin E/choline/omega oils connection at the moment in case that helps. I got it from this book (it's listed as the dyspraxia diet):

www.amazon.co.uk/Cure-Your-Child-Kelly-Dorfman/dp/0761175830?tag=mumsnetforu03-21

DS's videos are quite challenging in this respect as I struggle with motions sickness when looking at the screen. His computer screen is in the kitchen and to get near DS I have to go near the screen, which is very intense. It's tricky. He feels bad about it too, as he wants to share his computer games with me and can't because they are too overwhelming for me.

I would be careful how you approach asking DS to change his behaviour to make it easier for you. All behaviour is communication, so you need to find out why he is behaving like he is and change that. The last thing you want is for DS to mask. Some PDA strategies may help.

Thanks, I actually hadn't heard about PDA before but I see there is a lot of information online. I will read up about it. That's a bit of a win learning about that from you. I had no idea there was information about that.

If DS struggles with school you can apply for an EHCNA.

Thanks, I will ask about that. I just send the diagnosis letter off to the school on Friday.

If you feel up to it you could help with Scout activities that take place during the day at weekends.

Thanks, yes, I have also just written to ask if I can switch to admin tasks. Hopefully that will be okay.

Thank you again for listening. It's so helpful to tease it all out like this. :-)

Hi again,

I just read about PDA and I don't actually think that that is a big element of what's going on.

I think what's actually going is that DS has got to the point in life when he badly wants to know how to grow up and be a man, and a lot of the struggle is coming from that. I think he urgently wants the bloke download.

DS is very very interested in learning from DH and much less so from me. DH talked to him about getting up later in the morning today, and DS really took it very well. I asked DH how he worked that discussion and he said "the key is to tell DS that he should do things a certain way, because that is the way to grow up into a good man."

DS loves his 15 year old neighbour who is a boy, and is learning a lot from him. The neighbour comes around a lot and they work well together.

DS is also loving these youtube videos, which are child-appropriate recordings of young men playing children's computer games and giving a hilarious commentary. I strongly suspect that DS is getting the "bloke download" from watching these videos and from listening to the commentary. That that is feeding his social development, which he really needs. In that sense, the video watching is actually good for him, and if I stand in the way of it, it's not surprising that he is cheesed off. It gets tricky for me when the games or commentary become slightly less child-appropriate (occasional swearing, aggressive body langage from the commentator, or games that involve guns), so maybe I should ask DH's help with finding the games and commentators that I am happy with. I will do that.

He's also loving scouts and getting his place in the social hierarchy there, and in that respect I think it's really good that I don't help at meetings as it gives me downtime and lets him learn to be independent.

Maybe I need to learn to talk to the young man in him, rather than the little boy, at least some of the time anyway. I'll have to think about how to do that.

I feel much better today. I think that must have been a post-vaccine mood crash. It's never happened to me like that before. Weird!

Solved a lot of problems though. Thank you for listening.

It’s great to hear you’re feeling better today. I thought my son had PDA as he doesn’t respond well to instruction but today I found a link to a book called The Complete Guide to Aspergers and so much if it describes my son! I’m so glad the doctor used that term as it really makes sense now. There is loads of really helpful advice and resources in the book that I plan to use.

That's absolutely brilliant SuperSue77. :-) It does help to have a structure for understanding what's going on doesn't it?

I like that I understand myself better now too, from having the ASD diagnosis. I feel as though I no longer have to make excuses, or at least when I do, at least I have a plausible excuse. :-)

I think my bad day yesterday must have been down to vaccine side effects, as I am myself again today but now my legs and arms ache. Weird.

I solved ever so many problems yesterday though so it was good to thrash it all out and I'm really grateful for the discussion on here.