Can't cope any more :(

[lisa35]

Finlay's autism is getting worse he is 3 now. He's not sleeping on a night he's running around his bedroom until all hours keeping me awake. He is on 10ml of melatonin but doctors only give me a small bottle and I run out before I know it and fed up of ordering it again. It doesn't help him sleep much any way.

The last few days he has been so whingy all day that I can't cope and feeling like putting him in care I just feel so isolated in what I can do, he won't walk out the buggy without wanting to go where he wants to go, if he doesn't get to go his own way he throws himself on floor and I struggle to get him back up. He has no sense of danger runs on road given half a chance, doesn't respond to my voice very well. My relationship with his dad has ended and now am a single parent.

Anyone else in same boat? Got any advice? Thanks

 

[crayoncrittle]

I can't say I'm in your situation at all, but I worked in disability support and childcare for a while, and my husband is Autistic so these are some things we've discussed. I guess this is where I'm coming from. But I am in no way a professional.

Because he's got a limited sense of danger, if might be best to keep him in his buggy or stroller while around roads or in crowds until he grows a bit more aware of his surroundings. If you want him to be out of the buggy, as humiliating as some parents think it is, the backpack restraints (some people call it a "leash") are actually really helpful. It means he can walk freely and be independent, but he can't get away from you. My mum used one with my adventurous older sister when my other sister was still in a pram. Some parents might stare, but it is completely for his safety and it's nothing to be ashamed of if you chose to use it.

With the running around his room at night, I used to work with a boy about 5 years old and he would do the same. Bed time was a huge struggle for his parents until they decided to change their approach. Maybe try giving him some quiet toys or a book to look at for if he wakes up, you could also try a projector that will cast stars around his room to keep him interested in something (and hopefully stay on his bed). It din't work immediately but it did work eventually. They also had quiet relaxing music playing if he was stressed. It encouraged him to stay on his bed and after a while he was sleeping through the night. You could also see if there are any natural remedies. I find lavender and peppermint help me get drowsy.

Just my ideas and things I've been told can work or at least help. If you're starting to stress out you might need some respite. Don't be afraid to seek help from others if you need it.

All the best xx

 

[hellbaby]

I can totally empathise, my dd is 3 and very similar in behaviour to your little man. I too go through stages where I really feel I can't cope. Although I'm not a single parent, we live pretty separate lives due to her sleeping habits, I spent most of last year sleeping (or trying to) on the lounge floor while she ran wild. We did find the melatonin made a big difference in terms of getting her to sleep (the conditions have to be right though, bedtime routine, dark room etc) although it doesn't necessarily make her sleep all night so she sleeps in with me while dh sleeps in the kid's room. This is the only way that ds gets a night's sleep! Starting nursery has helped a lot as it wears her our and gives me a break plus some time with ds- she has one-to-one support there. I rarely venture out with the 2 of them- it's just too stressful :wacko
BUT...on the positive side in the last month or so she has come on a lot, trying to say the odd word, responding to her name, better eye contact...things I thought would never happen (she is 3y 8m).
I know it's really hard to stay positive some days, just remember you are doing an amazing job and things will improve I know I couldn't do it alone

 

[lisa35]

Thanks for replies . I don't have dark curtains in his room but going to invest in some soon. He is waking early hours in the morning when it's pitch black outside so not sure it will make much difference but worth a try. I will get him a little stereo and some relaxing music cd's see if that works as he does love his music, I have a weighted blanket that he just kicks off his bed as soon as he get's in, although he will keep it on when I put it back on after an hour of so of running around his room

I have taken him off his melatonin he was gipping and been a little sick, also noticed he was very croaky and pale the next day after taking it. Do you find this with your girl?

He has been at nursery since he were 2 yr old, he is now 3 and 4 mths old and just started 3 days at a special school which he is really enjoying. He gets a taxi there and back as it's 45 mins drive away. They let him have 30 mins sleep if he's really tired then wake him, I have noticed the time he has awaken on a night has reduced to 1 hour since starting on Monday. PHEW!!

I have noticed a difference too, his eye contact much better, he says words on his terms but always says daddy, always has done.He has just started shaking his head for yes and no, this is a great help as before if I got something wrong he would just scream at me, he's just started using toilet got one of them 2 in 1 seats, he takes his pants down and shouts wee wee, still a long way off but great start He's ok going out in buggy so long as we stick to same routines if not he throws a right paddy and almost breaks out of his buggy. Yes they are hard work and get us down at times but honestly wouldn't change him for the world. He is funny, entertaining and it's damn right rewarding when they achieve something new .

 

[Menelly]

I know when my son was that little (he's now almost 15!) he had a hard time sleeping too. And it got awful stressful. We effectively made his room as safe as we could get it and then set an alarm. When it went off at night, it was time to be quiet in the room. When it went off in the morning, he could get out of bed. Between the two, he could play in his room if he wanted to, but he wasn't allowed out of bed except to pee. It really worked.

Is there anything that could be keeping him up at night? I'm Autistic and I have a horrible time sleeping if there's anything outside the ordinary at all. Too hot/cold/weird noise/song in my head/blanket itches/jammies itch/someone else is making weird noises/funny lights coming thru window/hell... anything but pitch black room with quiet and I'm not likely to sleep. I've started being able to sleep with white noise, but it only took 33 years for me to do it. (A standard room fan is what's working for me.)

And I have the discipline to know I'll do better if I stay in bed even if Sensory Hell is invading my sleep. Your kiddos probably don't. My husband will be the first to tell you my Autistic symptoms are significantly worse the worse I'm sleeping, and I know many others who are the same, so it's vital to get sleep under control. Make the room as dark and quiet as you humanly can, and *then* try the melatonin. And then maybe the alarm clocks with when they're allowed out of bed.

My son was completely non-verbal at the age of 5. He started talking echolalia until age 7. He has conversations now. Your kiddos will probably get there. Just be patient!

Edit: Comments on eye contact. Eye contact is actually physically painful for many (including me) on the spectrum. If you must have some semblance of it, teach them to cheat. Looking at an eyebrow or an ear is close to eye contact enough to fool people without being painful.

 

[sun]

I hope things are getting a little more manageable for you. I've had days where I just wanted to curl up in a ball and let the kids fend for themselves. I try hard to make sure that when I go to bed at night, I leave my frustration there so when I wake up I'm not still aggravated or have negative expectations. Easier said than done lots of the time, but it does help. People think I'm too lenient with my son, but he does not understand traditional discipline at all. I pick my battles, and have learned what sets him off and what could be a possible trigger. With me, lots of the frustration is that he doesn't listen very well - he is very distracted and often he will answer my questions with a totally unrelated thought that just popped into his head. So sometimes it feels like he has no idea that I'm actually talking to him, even though I'm right there and he's looking at me.

 

[vixforever]

Hugs hun, I have no advice unfortunately but totally sympathise with you as my 4 year old is the same and just wont switch off with his autism x

 

[Tiff]

I had that curl up in a ball day yesterday. All before 10am my DD had smashed her tablet to smithereens, stuffed our cat into a dresser drawer and then managed to get out of the house while I was talking to someone who came up to the door. She took off (she's always been a flight risk) and nearly got hit by a car.

Felt like a total failure. I definitely feel its part of the process to have those days where you just don't know if what you are doing is even getting through, but then they have breakthrough days and it makes up for the rough ones.

 

[lisa35]

Thanks all. Since my last post I have someone coming in to do a home safety check and make the home more secure he is doing much better and shutting off at around 9.30 and sleeping through again. However he did resort one day to climbing on top of his set of drawers near the window good gob he didn't fall back. Now he's getting older he's getting worse with the climbing and climbing stair gates, covered in bruises across his belly from doing this. It just seems one thing after another but am coping much better now. Finally got indefinate top DLA and getting my set of wheels thankfully which will be a HUGE help

 

[suzib76]

my 10 yo has melatonin, we give it an hour before bedtime although he takes 6 mg bio melatonin pills not liquid

we also use a weighted blanket for him, so by the time the melatonin is kicking in properly we get him up to bed and tuck him in with his weighted blanket on top, the combination of both thinsg seem to work really well for him