Here some suggested organisations that offer expert advice on SN.

Please help. I have no idea what to do.

(22 Posts)
bletheringboys Sat 01-Oct-16 13:26:36

I have 3 sons, aged 7, 5 and 1.

The middle ds is, and has always been a difficult child. Painfully difficult.
His behaviour requires a LOT of patience daily and it is getting to the point where it's becoming more difficult to manage.
Dh and I are exhausted.

He was non-verbal until about the age of 3. It was found he'd had really bad hearing due to glue ear and had grommets inserted, which helped enormously.

Toilet training was extremely difficult. It didn't take him long, but he had real issues with sitting on the loo and refused point blank to sit on a potty. One day it just clicked completely for him and all of a sudden he used the toilet like he'd been using it his whole life - no accidents at night at all. It was odd, but good. We just kind of let that one go and put it down to daft toddler behaviour.

He had massive problems in drinking from the EXACT same cup all the time for about 2 years too when he was about 2. It was obsessive. We passed this off as strange toddler behaviour too. He eventually grew out of it (kind of).
He has always had massive problems going to bed at night. It's like he has no off-switch. He is fixated on his dad at the moment and obsesses about dad being there/upstairs if he is in bed and trying to go to sleep. It takes HOURS.
He will eventually go to sleep after much cajoling/threats/books/whatever he 'needs ' at that point in time to go to sleep, but it's usually about 11pm. His dad and I are exhausted. He then comes into our bed in the middle of the night, making for a really uncomfortable sleep for us too. He wakes at 7 am and is constantly needy from the moment his eyes open.
We have tried absolutely everything for his sleep - reward charts, the bloody hypnotising rabbit, bunk beds, seperate beds, staying in the room, prizes, stories, being nice, being the bad cop - EVERYTHING! I am at my wit's end with this one.

He loops on behaviour and fixates on stuff - if something is planned and doesn't meet his expectation, all hell breaks loose.

I have a lot of experience with kids and I know it's not 'bad' behaviour. He holds it all together at school and is the model pupil - it's like at home he relaxes and it all catches up with him.

He's social, he has good friends etc - I am not worried about him that way. He has real problems with reading and writing, despite being read to every day and from a very young age. I've questioned dyslexia with his teacher but because he is so young, they can't make any formal assessments.

I'm querying a high-functioning autism but I am so unsure. I am on the brink of taking him to the doctor, but keep thinking he may well grow out of all of this. Any challenges he has faced (cup, toilet etc) he has eventually grown out of, however frustrating/exhausting it has been for us at the time.

He is a sweet little boy, he is clever and very funny. He has an amazing personality generally.

We are however completely exhausted and I just know that his behaviour isn't completely normal. I don't know if I should put it off any further. He's getting older and the bedtime thing is seriously affecting his ability to function (and seriously killing us too - we have two other kids who thankfully go to bed no bother at all and sleep like angels!)

In your experienced opinions, is he just a really bloody difficult little kid, or do you reckon I might be on to something. Tbh, I have thought this for a while, but have been scared to deal with it sad

Usernamealreadyexists Sat 01-Oct-16 15:15:06

Based an n what you've written, I would consider ASD. Please don't put it off any longer. I have a 5 year old with ASD and he's been hellishly hard to deal with since going into Y1. I think it's because the demands in him have increased massively and he's not coping.

PolterGoose Sat 01-Oct-16 20:45:13

I think it's definitely worth exploring whether there's something 'more' going on. I did similar to you, had suspicions from when ds was teeny but big issues would resolve and nobody else ever verbalised concerns explicitly so I didn't request assessment until he was 5.

Average waiting times from referral to diagnosis are 3 years, better to be on the list now.

Good luck flowers

You might want to have a look at sensory OT strategies for sleep, 'The Out of Sync Child' is a good place to start.

FrayedHem Sun 02-Oct-16 00:58:16

I was back and forth on my DS3 (ds1 already dx with ASD). We went ahead and self-referred and I'm glad we did. His issues are pretty subtle but the SALT and Paed immediately picked up on them. There's still no clear consensus, but it has been valuable to get some professional insight and tbh a bit of relief that we're not just imagining it all.

The other thing is when DS1 was dx; the wait for assessment was under 12 weeks; 7 years on it's at least a 6 month wait. You can always cancel, but I'd get in the system asap.

imip Sun 02-Oct-16 06:59:02

Op, I would pursue assessment also.

Just a small suggestion also, which may or may not work. Dh and I were also really suffering with sleep deprivation (amongst other things - 4dc, one, poss two with ASD) due to middle-of-the-night wakings and dc in our bed. We put a cot mattress under our bed and pull it out when dcs come into our bed. Our ASD dd is frequently scared at night, this was a really easy way of at least getting some sleep so we were ready for the challenges of the next day!!

bletheringboys Sun 02-Oct-16 07:33:40

Oooh, that's a fab idea imip!

Thanks everyone - I think I will go to the docs. Do I need to take him with me or just my concerns?

I had a rummage around on the Autistic Society website and he really fits into Pathological Demand Avoidance like a glove.

www.autism.org.uk/about/what-is/pda.aspx
Thank you all so much - it's nice to know I can go with my gut on this one!

imip Sun 02-Oct-16 08:25:37

The only thing about PDA is that in many boroughs it is not a diagnosable condition because it's not recognised as a condition in the DSMV.

I also think my dd fitted a PDA diagnosis, but she has an autism diagnosis. And while I think our cahms is brilliant at getting girls and autism, they refused point blank to even talk about PDA. They call is demand avoidance and rigidity, well I guess it is that also. But you can try some of the PDA techniques mentioned in the literature. It was the first thing that helped us.

It might be useful to read up on ASD also and find where this fits when you talk to your gp.

As time goes on, and I can how my dd fits autism just as much as ASD, sometimes seeming more autistic than PDA, if that makes sense. our dd is extremely challenging and extremely remote from us. Behaves well at school, everything is a disaster at home. It took 2 years for us to get a diagnosis, because no one believed us, thought it was my parenting. It does show how important it is to go with your gut!

bletheringboys Mon 03-Oct-16 11:19:55

Thanks imip.

It's so worrying - I just don't know where to start. DH (who has lots of experience with sn through work) is reluctant because he reckons he may well grow out of a lot of the behaviours, but I know how important it is to get in early, so we are a bit at a crossroads.

I've questioned my parenting so often, but I know it can't be - he's always been like this. It can be hard to see something when you are so close to it though.

twinklejute Mon 03-Oct-16 22:38:23

Hi Blethering,

I think if you have three children it must be easier to spot the various traits and behaviours that Mark your DS out as different.
I too have 5 year old DS who I believe has Aspergers (he's on a CAMHS waiting list). I've had suspicions for over three years now and have had time to come to terms with it. I found the sinking realisation very worrying and upsetting so just wanted to offer some reassurance that my DS is still my lovely DS and honestly I think I love him even more for it. I'm learning to accept and go with the mantra that normal is boring. So good luck with everything and try and take it one step at a time. x

imip Tue 04-Oct-16 06:50:49

twinkle is right, when you have siblings to compare, it's really serves to confirm your suspicions. I sat on my feelings about dd until she was 5. I'd suspected ASD for about a year before and some type of ODD since 3 ( really wasn't sure, just the first thing that really described her, but not 100%, I wasn't aware of ASD then). Waiting can be detrimental, because you can have a long fight to actully get a referral/see the right people. This is more important when the behaviour is challenging.

For the record I have 4 dds all born within 5 years. I couldn't have had a better peer group to compare with. Though dd is clever and quick, articulate with speech, she was so 'behind' in so many developmental areas, and her 2 younger sisters quickly surpassed her. My only regret is not having been forceful enough soon enough. I know have a dd whose room is filthy, lots of OCD traits, will scream until Windows are shut, just so many sad elements that could have been solved if I went to the Drs sooner and if health professionals listen to me sooner.

2gorgeousboys Sat 08-Oct-16 08:28:04

I'm no expert as we are just going through the referral process with DS2 at the moment, but I would suggest speaking to the Dr now. DS2 sounds very similar to your son and I attributed all of his quirks to his personality. It's only now at 12 that we've asked for help as it's obvious he's not going to grow out of it. I just wish we'd started getting him (and us) help years ago.

Good luck!

bletheringboys Sun 09-Oct-16 05:26:27

I am definitely going to the Dr as soon as I can (another week to wait now, as school hols and have the other 2 ds at home too this week).

Yesterday was an extremely testing day.

DS1 had his birthday. DS2 fixates n celebrations and as his own birthday is in 2 weeks time also, he is already excited.

He's been okay in the run up to it this year - usual excitement, which is completely fair enough!

On the day though, he was verging on unmanageable.

Luckily, DS1 is so good with him - any other kid would have completely lost patience. He gave him presents to open and even allowed him to play with gifts he had received before he'd even had a chance to look at them.

He got a magic kit fr his birthday. DS2 was extremely excited about this and looped on it while guests were here, which everyone indulged at first, but as people kind of lost interest (as they do) and went back to chat he got louder and louder and more and more 'in your face' (which is another one of his 'things' - lack of social awareness in boundaries) I asked him nicely to stop and take the magic away until we had time to properly look at it, but he melted down in the worst possible way and ended up screaming and crying. He tried to manipulate the situation (and his brother) all day. It is completely all about control.
He was trying to manipulate the situation all the way until bedtime, where once again poor DH had to stay upstairs with him until he fell asleep (last thing you want to have to do after the long day we have had) and he finally went to sleep at about 9.30.

I have just woken up at 5am with an incredibly painful back, yet again, having unwittingly been perched on the edge of the bed because ds2 is once again in bed with us, despite us setting up a wee bed right next tot he bed for him (which he is refusing to use - apparently it is 'too far away' from dad (it's literally touching his side of the bed!!)

I give up. If I don't do something, I'm going to be a humpy-backed old lady by the time I'm 40.

I'm so worried about ds2. What if he never grows out of this?
He's so able in so many other ways, but this kind of stuff is life-debilitating.

EmmaGrundy Sun 09-Oct-16 06:01:27

flowersOP sounds very hard. Hope the visit to the doctor goes well. You are in the best position to be aware of difficulties. You may need to persist (and persist...)

knittingwithnettles Sun 09-Oct-16 10:41:15

Could you set up an extra adult bed in your bedroom so that at least the adults get a good night sleep?

Melatonin - needs to be given on prescription by paediatrician I think.

With sleep I know an awful lot of children (boys especiallly) who have slept in their parents beds until they were 8. It is far more common that you imagine, and it may be better to just accept that it where he sleeps best rather than fighting to put him to bed Mary Poppins style.

When ds was five I felt so embarassed when he was badly behaved fixated, ruined events etc, by the time he was 9 I PLANNED/ASSUMED he was going to find certain things difficult. I stopped going to some functions that would create fugue like behaviour or trigger tantrums and obsessions, I changed the way our family life was organised. So a party for the other children...I really planned how ds was going to fit in, and who was looking after him, and would was likely to set him off.

I also talked through things in advance, and tried to keep things very familiar; Transitions can be a very big deal, even if they enjoy activities or outings; the more familiar the activity or outing or format thereof the easier it became for him to cope.

Ds2 has a diagnosis of ASD, he is outgoing, enthusiastic, energetic and sleeps pretty well now. His sleep routine was very good, but he ALWAYS came into our bed until he was 8 in the middle of the night. Then he stopped! Like magic. We missed him at first. We had a very very big bed btw...enough for all three children to fit in with they were toddlers...(close in age) I suspect this why we didn't mind him sleeping with us

knittingwithnettles Sun 09-Oct-16 10:45:39

Sensory issues can mean it is much easier to sleep when you wedged in next to a warm body, or with a heavy weight on top of you...weighted blankets, teddies, small room with no space around you. Ds2 has a tiny boxroom and sleeps really well in it, he is wedged into the wall. He likes people sitting on him for example in daily life. Read Out of Synch Child for advice on sensory "diet" (nothing to do with food) really really useful information there..some things you will be doing already, some you won't have thought of, like wheelbarrows, carrying heavy shopping, knapsacks, digging, throwing balls into baskets.

bletheringboys Sun 09-Oct-16 21:52:35

Oooh, knitting, a weighted blanket is next on my hit list. It's one thing we haven't tried yet!

His going to bed issue got a little better when we gave him a wee cubby space a while ago (just a quirk of the room he shares with his brother fortunately meaning his bed fits in that space so that they have floor space to play).

I will get The Out of Synch Child next time I am at work - sure I've seen it on the shelf.

Told my mum tonight about us making a spare bed in our room and she was full of the old 'he's just winding you up/I would just have him told', which is what we are faced with every time we try to open up to others bout his behaviour. She has a very short fuse for this sort of thing, which stops us asking for babysitting etc - last time we asked DH's dad to sit, he got dh2 into trouble and made him cry, even after we told him what he would do (he doesn't babysit often and we won't be asking him to again).

CousinCharlotte Tue 11-Oct-16 00:01:55

You could also try a long bolster pillow for him to sleep up against, this worked for dd who has asd.

youarenotkiddingme Tue 11-Oct-16 07:20:14

It sounds like you are doing great.

Definitely worth persuing assessment as instinct is usually right.

And the growing out of behaviours is often a red herring - because as you've experienced they can grow into another one!

Social stories may be worth looking into with regards celebrations, personal space etc. Some skills need teaching because they won't naturally come to a child who has difficulties in social communication and interaction.

Best thing to do is take a list to go of your concerns, list how you've dealt with it and what has and hasn't worked.

And point out you have 2 other children raised the same way who don't experience the same difficulties.

bletheringboys Wed 12-Oct-16 11:15:38

When I think about it, he has been like this for a long time now.

Hates getting his hair washed (to the point where he screams and shouts), hates getting his hair cut, his nails cut, seeps better when with someone, loops on behaviour around special occassions, gets obsessively attached with particular people, is really funny with food textures, is terrified of the dentist, can't switch off at night, gets obsessive about objects, consistently puts on his clothes inside out/back to front and shoes on backwards...

I feel bad for not doing something sooner - I have been questioning it for years, but there's always been a red herring throwing me off.

knittingwithnettles Wed 12-Oct-16 15:07:50

If it is any comfort, ds2 HAD all these traits, and IS still HFA, BUT doesn't do any of those things any more...(in fact he especially loves washing his hair)

We still have to tackle the fingernail phobia, but I think he would do it himself (and who likes having their fingernails cut by someone else?) if he had the motor skills. He does do it himself, just quite badly.

At 14 he is much much easier. Just very disorganised in comparison to peers in some aspects. But politer I would say smile

knittingwithnettles Wed 12-Oct-16 15:10:02

We did hair washing like this at 5. Nice deep bath. Let him put on shampoo himself - dole out a portion so he can put it on, let him rinse by going down into the bath and floating. Better than a fight. He loved long baths.

youarenotkiddingme Wed 12-Oct-16 17:06:29

knitting is spot on there. They'll be a way he can tolerate stuff and you just have to go with it. And it's not always forever - you can build tolerance to things.

May be he'd start leaning over bath and holding shower over his own head?

Dry shampoo as an alternative may work for a hair washing alternative?

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