Advice for bedtime PLEASE 😢

[Nodancingshoes]

My 10 year old ds is not diagnosed but strongly suspect asd, spd and possibly odd. Every day is a challenge but bedtime is where we are struggling the most. He needs one of us to sit with him until he is completely asleep. This is relatively new, in the last 4 months I would say, but getting longer each night. Once hes asleep, he doesnt wake till morning. We've swapped his room with his brothers (he was saying his bedroom was haunted..) bought mood lights, tried music, fiddle toys etc... at my wits end. What can we do to stop this??

Do you have anyone involved in your sons care who you can ask for a prescription of melatonin?

I sat with my son on his bedroom floor for hours every single night for about 4 years until we got this.

It’s not perfect for us now and ds still wakes in the night (he’s done 2 all nighters in the last 7 days 😕) but he does settle to sleep himself now. I lay him down put his bedtime music on and I can now leave his room (he’s 7 next month) which is great as I can get on with tidying up etc, he was initially on 2mg then upped to 4mg now 5mg and we are ok with 5mg, he’s not out like a light or anything but he’s chilled and knows his routine now, took ages to establish but think we are nearly there with him settling himself.

Has anything happened to spook your son / unsettle him? you say he thinks his bedroom is haunted? What made him think this? Ds said someone came out of his tv one night (it’s on his wall) so I covered it with a blanket and that settled him so he couldn’t see the tv.

OP

My daughter has ASD and due to severe anxiety, we have been in the same night time position for years also.

I have fought tooth and nail to help DD and commited to every strategy suggested - but still we are jumping through useless hoops, in the hope that one day the professionals will consider medication.

No solutions but I understand and send a huge hug!

Ds has been the master at hiding everything at school making it very difficult to get any help. He literally explodes at hometime. In the last few months he has been faking illness to get sent home and now we are all wise to this, he is crying everyday at school. The night time thing started around the same time. I rang the Young minds helpline in desperation at him getting sent home from school and they were incredibly helpful. Who can prescribe melatonin?

Your consultant will prescribe it.

In the meantime could you try magnesium liquid?

At the beginning of lockdown cahms prescribes melatonin. It was life changing for dd12. She then stopped taking it, but learnt you could get gummies online. Cahms told me to get them and again it was life changing - not perfect, but took away so much of her anxiety. She has ASD and OCD. I’m not sure if lockdown was what lead Cahms to being happy with us organising melatonin ourselves asI know it’s usually frowned on, but we were on the conduct disorder pathway at Cahms who wanted us to start medicating did (see sertraline) and melatonin seemed a much better option.

Sorry, thinking about what we did in the past. Colouring in at bedtime, and sleeping on a mattress in our room. Dd frequently went Through periods of not sleeping in a bed but on the ground. That was when she slept. I can’t believe the change in her in the past 10 months.

Do you think if school could be made less stressful, bedtime might go better? Are his teachers supportive of making it a less awful environment for him?

Hi all,
Our son 10 has been on these melatonin gummies for the last year and a half now. It has been life changing for us. He is severely autistic with complex behaviour problems and self harming behaviours night times were very very stressful for us looking back now I’m not sure how we actually made it through. Did the whole camhs process waited ages only to be denied the prescription. We took matters into our own hands went online and after doing extensive research etc ordered these
uk.iherb.com/pr/natrol-gummies-melatonin-strawberry-10-mg-90-count/81535
Yes they are from America but delivery is pretty quick. My son will not take many medicines including antibiotics (which is a real problem) and I have to further melt these down ( the gummies) into liquid form before he will take it (Luke warm water in a jar for a few hours melts it) then use a syringe to administer it. We recently had a therapist from the child disability team visit us for other issues including toileting and she could not believe that we were denied melatonin on prescription. But I would not entertain that process again and what we have in place now is working very well. I must also say that a good night time routine is also very important and would recommend researching this for ideas.

Thanks for your replies. Still terrible - I'm now sleeping on his floor until 1130/12pm when I can sneak out...tried to implement a new bedtime routine that includes reading, hopefully this will help in time. Have been to order the melatonin gummies online- is it safe to do this??

Yes, they are safe. We use them with cahms knowledge. Thing is, how many cahms practitioners have had a child with these sleep issues? Breaks from melatonin are recommended, as you the effectiveness can lessen.

I think doing this with a good routine is a good idea. Just giving melatonin without decent sleep hygiene is pretty pointless.

Currently sat on ds floor whilst he jumps on the bed, keeps throwing his duvet at me, whistling, saying that no-one loves him..I've followed the bedtime routine plus going out for a walk after tea for fresh air. I dont know how much more of this I can take. It goes without saying that homeschooling has been horrendous...

Hi nodancingshoes,
I know it’s very stressful for you at the moment but Your not alone and your putting things into place that will make a difference. One really good thing your doing that you mentioned is going for a walk, if it is at all possible I would recommend doing this every day. From experience our little guy thrives on this and really does sleep better after a walk or some form of exercise during the day. He also thrives on routine so he is now used to the order of events leading up to bedtime therefore he knows and gets used to the idea and no surprises. Also things that helped us: limit computer screen time at leased an hour before bed, try and have a dark room if possible, try to keep your routine the same every night, try to have a wind down hour before bed. There are many many more ideas and I would recommend looking online. You said you suspect ASD, try bedtime ideas and routines specifically for ASD. having a good understanding of asd is key - Looking at your original post one very good thing you mentioned is he stays asleep once asleep so really you need only crack the getting to sleep part which absolutely can be done. Where are you guys with getting a diagnosis? I ask because a diagnosis will open up huge amounts of support and help for you. Also just thinking about it after reading your posts again behaviour sounds very attention / reaction seeking - one thing I learned was not to partake in this with him but remain calm and limit communication with him once he has gone to bed just gently putting him back to bed every time ( I know it’s hard) reinforce the rules calmly but sternly. There are some great resources online regarding asd and sleep / behaviour etc and it’s well worth the time to research. Also have you mentioned to school you suspect asd, sensory issues etc? And how did the melatonin order go?
I notice that I herb are out of stock at the moment but let me know if you are having trouble...... look after yourself today and remember you are doing a great job.

Thank you @Busyhome for your kind post. Yes, school are aware although he has masked pretty well up to Sept just gone. I have asked for their help many times over the last 7 years but never got anything consistent. His year 6 teacher seems more on the ball though and, before this lockdown, was being very supportive. I have ordered Biovea gummies but they haven't arrived yet...I will keep on with the routine

Hi @Nodancingshoes no problem. Let us know when gummies arrive and how it went.

@Busyhome we tried the gummies last might for the first time. Worked amazingly. He read his book for a while with me sat in his room and then put it down himself and fell straight to sleep! He had a good 10 hours sleep and he's in a great mood today. Aiming to do this for a few weeks and then try without again to see whether we've broken the pattern.

@Nodancingshoes
Wow that’s really great news I’m so happy for you. It is really life changing. I remember that moment for us it was real progress and I can’t tell you how much it changed things for us.
That’s made my day
All the best