Struggling to cope with DS's ADHD. How do people do it?

[shandywan]

Presumably that's what it is

He was diagnosed with autism at the age of 2.

His special school sent the school nurse found before he starts to see him and talk to me. Within 10 mins she asked if I'd heard of adhd

He can't speak and can't understand very basic instructions. He is unable to communicate basic needs unless he were to drag you to the fridge at home for example for a drink. Otherwise he's no other way of expressing this

He is on the highest dose of melatonin and falls asleep eventually around midnight. Up for 3am

However, he never stops. He can't concentrate clearly. Everything is 10000 miles an hour. He likes 0 toys. Not interested. Can't engage with them. I think his mind is too busy

He is constantly running and jumping and into everything.

For example - enters living room, within throw all of the throws covering the sofas onto the floor (20 seconds max to do both). Will then throw them into the air maybe, but usually just walks away. Then he will try and stand on his baby sisters bouncer. When removed will then run to the wall, slap the wall, do a semi handstand on the wall

In the garden he just plays with the dirt and puts it into little containers. Then easily board. He has a slide and a trampoline. He will not use either.

He just goes up to them and pushes them over. The stands on it upside down, jumps off and walks away

We go to parks and he doesn't really want to go anyway as he doesn't like equipment, but he likes the mud. Fine. If he sees another child they're going to get bitten if I'm not careful, so I have to be so watchful and fast

You have to be ready to bolt at any moment. Any time. Safest of course in his pushchair or with reins but some independence is nice to try out. Again, you better bring your A game and be able to run

He just can't focus. Nothing interests him other than swimming. We do that 5/6 times a week as it is though. My daughter can't even be put on the floor when he's around. Her toys are in a box. You'd never be able to leave them there. He would run up, throw them all out, jump on the box to break or disfigure it, then throw the box too. So you can't leave anything at all out like that

The autism side of things has always been obviously and profound but my goodness, this level of hyperactivity is something that just seems to get worse

Where is the bloody energy coming from!

He won't use a bloody tablet either. Doesn't know how to work it, throws it. He will not engage and let you show him

How do people cope with this?

Apologies for the terrible spelling and grammar in this typing it whilst DD is still sleeping but DS is obviously up!

Sorry just to add - I'm not sure where to turn to because a lot of the advice surrounding ADHD doesn't work for my son

He can't follow sticker charts

He doesn't get a feeling of control with compromise or two choices, or picking what you offer. He doesn't have that mental capacity

He isn't able to understand reasoning and rationale because he is not there (yet) with that

My son's development for social, emotional and communication skills are at age 0-11 months

This sounds really tough. Does he see a Paediatrician for reviews? Do you get any respite from friends and family or social services? You may be entitled to a social worker due to his disabilities x

@Ilikecheeseontoast thank you for replying

He gets respite 10 hours a week but there often isn't enough staff to cover and his usual carer thinks he needs 2-1 provision so going forward it'll be even harder

We do have a disability social worker too

Family can't cope! So I'm very isolated as a result really

None of that is good for ADHD, that’s some shit advice! Throw in ASD too, even less likely to work; then throw in that he’s at 0-11 months and not his actual age, zero chance.

It sounds to me like he’s sensory seeking - running, throwing, biting, fidgeting - I was a Bitey McBastard as a toddler (as was middle DD who is also AuDHD like me!).

TV? Tablets? Nope. Boring. Who wants to sit still? Can’t focus on the bright screen and noise anyway - too stimulating.

DD is now 11, was diagnosed around 4. I’m 36 and was diagnosed not long after DD.

Some suggestions that worked for DD

• Gym ball
• Ball pit
• Biting necklace and bracelet
• Lots of running outdoors in fields away from main roads as zero sense of danger
• Swing
• Hammock

I’m in the middle of unpacking my house but I’ll pop back later and catch up

Firstly big hugs to you. Life sounds very tough indeed.

How old is he? Other than Melatonin is he on any other medication for his ADHD?

My son is on Intuniv and it's changed ours and his life. His paediatrician also recommended him taking high strength Omega 3 table to help him with his concentration. We use Equazen from Boots.

Equazen

@YellowPlumbob thank you hope your unpacking goes well

Gym ball might be worth a try. I can see him just throwing it against the wall though

I've tried taking him to places where it's just fields but there aren't many, usually dog walkers there and he goes up and gets people. It's just awful. Plus he's zero response to his name so I can never get him back for ages

He's got biting necklaces and things - doesn't like anything around his neck so won't wear it. He just throws them and then they're hidden behind my sofa he also has something called a chew buddy. But he's not responsive to diversion so won't use it instead of biting if that makes sense

He just doesn't cooperate with anything (it isn't a choice, he's profoundly disabled). It's driving me insane as he's just getting stronger

Is he medicated for the adhd? With his other issues from autism , it might be worth exploring medication, it would calm his brain a bit.

I am very keen for him to be on medication, I know it can take a while for one to work for him

Problem is he hasn't actually been diagnosed with adhd, he just has an autism diagnosis that he got at age 2.

But, he starts special school in September and I've been told by the school nurse (who visited and said she would be shocked if he didn't have that diagnosis before the year was out), that they have a Paediatrician there who will review anyway

We have also been referred back to the child development centre by the GP but it's a huge wait so school will probably be quicker

He's almost 5

I don’t have any advice but did just want to wish you lots of luck. This sounds so tough (and you’re doing brilliantly trying to find the best solutions for DS).

It sounds like you understand and predict him well and you’re doing everything you can to manage him and his environments. Until he has his diagnosis and further treatment, is there anyway you and your dh can timetable shifts sometimes to enable you both to rest and spend time with your dd as well?

Are you under Portage? It sounds like an OT referral may be useful as well.

It's not much help for today, but I expect that you will see a big difference when he starts school. They will also be able to share the strategies they are using successfully and discuss how they might be implemented at home.

Hugs for you though as it is so tough trying to manage such high needs

I agree with PP that he sounds like a sensory seeker, and as though he needs big muscle feedback. Could he also be overwhelmed? Depending on how big your garden or house is, there are sensory things you can do at home, if you google 'heavy work' for toddlers you may find some things that help. My kids all have varied sensory needs, my youngest in particular is a sensory seeker especially when overstimulated or understimulated.

Things we have done at home with our limited space include:

• Making an obstacle course in the garden with paving slabs/ lengths of decking/ leading to a bridge to a small trampoline/ leading to the slide etc.


• Putting an old mattress on the bedroom floor when we replaced them, so the bedroom floor was bouncy.


• Balancing a wooden cot base (the slatted bits) between two single beds and encouraging the kids to crawl or balance across it.


• Piles of pillows on our bed and then they jump off the pillows onto the bed.


• Sofa cushions on the floor to jump onto or climb on (4 sofa cushions makes quite a tall wobbly sensory tower for a small child!)


• A wobble board to use as a slide off the sofa/ a place to lie down with a pillow and rock/ a climbing step/ something to push around the room


• Allowing them to spin on an office chair until they are dizzy


• Having an assortment of slime/ kinetic sand/ playdoh available in an easy-to-clean space so that there's that option to squeeze stuff


• Having soft squidgy toys like squishmallows for sensory play


• Large toy vehicles for pushing around, ideally ones you can fill to add more weight/ for sensory input of loading and unloading


• Packets of tissues for tearing- child removes tissues from box and shreds the tissues, this was my 'oh crap I need a break and I'd rather clean up shredded tissue than thrown food' solution in amoment of desperation and surprisingly it helped.

If he wants to throw things, can you clear his room so there is a safe space to throw things- soft foam balls and those small squishaboo toys can be good for that as they don't break things but are also light and easy to throw, they also double as sensory toys and the soft squishy cuddlies dont break easily either.

It is exhausting at times keeping an eye on them, stopping them from hurting themselves or other people. The key I have found is having my own rest time, do you have people who can watch him for you while you take a break every now and then? Recharging your own batteries is key to being able to keep patience and calm- you can't pour from an empty cup.

We've had OT here. They helped a lot with regards to how to keep the house safer (so special locks). But weren't very helpful with regards to toys as it was very clear how unbelievably destructive DS was with things you'd consider helpful for sensory seekers - he just breaks it, throws it and hides it. Then he's onto the next thing and you can't divert his attention

An example from this morning -

DS loves filling buckets with water. But he wont get that every single bloody bucket I've bought him is low cracked so leaks water everywhere (because when he's playing, he gets a sensory hit from launching them across the garden, and they break)

He was so upset because he couldn't get why I can't keep putting water into broken buckets. I had a big can that would've worked but he just chucks it

He loves water play but one of the biggest issues outside is he likes to tip it onto the floor. So you'll fill something up and he emptied it, and wants you to continue filling constantly which you can't keep doing

Sounds very like my DS at the same age. At 5 he had some very limited speech, which I think helped, but the rest sounds very similar. Autism diagnosis as a toddler and ADHD at 6. Medication was a godsend for him and the whole family. We ended up getting a private diagnosis because the waiting list was 2 years. If you can scratch up the money it was the best £3k we’ve ever spent. Our GP managed to fast track his NHS diagnosis after we’d had the private report through. I would focus your energy on getting the diagnosis and medication rather than trying to solve your son’s behaviours. From what you’ve written you already know the style of parenting that helps, but in my experience with severe ADHD, it really does only take the edge off. It’s a medical problem and a medical solution really, really helps. Solidarity, OP. It is a hard, exhausting and lonely road, but there’s hope for things to be better.

That sounds very tough. I have little to add except that you are doing a phenominal job. Please don't take this the wrong way but there are such things as enclosed dog walking fields. Usually around £5 to £10 for half hour to an hour sole usage. Owners are supposed to pick up after their dogs and the ones we have used have been clear. Strikes me that it would be a safe place for him to bomb about, hurl balls, ect without the threat of meeting other people and being enclosed means you have a chance to getting him back, particularly if it is a relatively small field or bit of woodland. Thinking about it, it is a shame that such places don't exist for people only use.

I hope you get the diagnosis asap and can get him on to medication as that sounds like one of the few things that will help.