Struggling with ds

[magso]

Hi! I usually post in sn. Ds is 10 and has been with us for 8 years. He has learning disabilities, ASD and ADHD and is a whirlwind mixture of energy and fun and is our one and only. Ds disabilities were dxed late because his difficult start to life was thought to be the cause of his challenges. It is lack of cooperation and constant need to control and disrupt that I am struggling with. The last year has been particularly challenging - starting with me being seriously ill and missing (in ICU) and then not fully on the ball once at home.
Ds has always kept us on our toes and he is a big lad who needs constant help and supervision and very clear boundaries . Dh travels a lot for his job but manages far better than I now.
Ds has more and more started to reject my authority. He has perceived my physical weakness (I cannot run after him or escort him to TO) and taunts ('you can't make me'). He can be very devious and will make use of my less well times to get away with things like stealing biscuits or taking lost privalegdes.
I need to adapt my parenting to accommodate my low energy but still give the clear boundaries and consistancy.
I have developed some stratagies (remove the nintendo ds/tv control for instance and then myself if ds refuses).
Has anyone any ideas? Ds seems to have no self control. I feel like I am loosing the battle at the moment.

My son has adhd aspergers and is profoundly deaf. He is currently off his meds on a drugs holiday. Something that has been suggested for us but not used yet is a programme called "How does my engine work"
www.sensory-processing-disorder.com/how-does-your-engine-run.html
It might be something to think about.

Thanks Lottie. I will look at that. I am aware that ds has more of the SPD part of ASD than some others. We were using a sensory diet before I got ill, but I have been more lax since (it all takes soo much energy especially when ds does not want to cooperate)

I should know what SPD is but do remind me? I keep my ds off additives and colourings. He only drinks hi juice fruit juice and water. I gave him custard before christmas and he went nuts, totally hyper. I was very excited three weeks ago to find natural custard powder in of all places our local CO-OP. I thought i would have to hunt high and low and buy it in bulk but no. Enough to make 5 pints of custard for 99p!

Where are you based magso?

There is an organisation called PIP in the north west but it could be countrywide (or there will be something similar). They have checked volunteers who will supervise children with special needs during activities such as sports or social clubs. This gives parents a chance ro recharge a little and gives the child something to do that's constructive.
We found that we had to be careful about taking away priveledges because DD stopped caring about anything ( a defence mechanism).
We will now say no TV but will get crafty stuff out to play with. We very rarely stop her from going to sports clubs like swimming and gym though... unless she has done something really terrible (and that is usually down to being wrung out from being hyper-vigilant all the time).
We got into a vicious circle with sanctions and have decided that we must choose our battles really carefully.
It's incredibly draining I know, and if you've been ill too it must be awful.
I've also found that a daily dose of Barocca helps my engergy levels.
Good luck.

Meant to say... DD is 11 and has been with us for 8 years too.

Lottie - SPD is sensory processing disorder I think.Ds is very hyperactive and sensory seeking. He always has been so we have learnt stratagies but are always on the lookout for new. The deviousness and targeted behaviours (like deliberately wiping his dirty hands on my clean clothes, licking my face instead of a kiss - low level stuff but unacceptable - he is fully aware they are wrong) although not new are now much more troublesome especially for me! I fear for the future if I cannot reduce these things now.
Shockers we are in the home counties. Yes I struggle with removal of priveledges. Ds reacts badly to NO (2 choices suit him better)but needs a balance of incentives and immediate sanctions. Incentives alone do not work.
I am aware that some of the behaviours are for extra attention (he would like 24/7 and he would still need more!) I feel like I have lost the reigns of control somewhat, and feeling exhausted with a child who needs inexhaustable love and energy makes me fearful for the future!

I realised what it was after i had posted. I get the face licking, i also get BOO! a lot and he will throw himself on me (he's nearly 14) As my best friend said its endearing when they are three. Not when they are thirteen!!

Oh Lottie how is the med holiday going? Wondered about this too - but perhaps when DH is home. Ds jumps on me too - and he is nearly as tall as me (ds is from taller stock) - he has no preconception of the potential damage (my back went years ago)! Licking is better than bites I suppose.
So how do I use my limited energy to best effect? How do others cope when dc is too big to be picked up but still does dangerous things?

At school he is fine. At home he is harder for me to handle.......

We have just had a two year old boy placed with us who is really active and can't have our attention off him for a minute without attempting to break something or punch himself in the face, bang his head on the floor etc. We don't even like him at the moment, let alone love him. He also hits us and throw things all the time. We take him to the park for a run around twice a day and he can't concentrate on any activity for more than about half a minute. SWs keep saying it's early days (3 weeks) which it is but he was like this at foster carers for a year. Having read your initial post am now really worried he will go on to be diagnosed with ADHD. We found out just before panel that his birth mother binged drunk alcohol in pregnancy but there are no details. We really want to give up! Any advice?

Don't know what to advise Peona. Hopefully others are wiser. Alcohol binging does increase the risk of all sorts of disabilities. It is quite normal to feel overwhelmed and wonder if you are up to the job. The first few months with a very hyperactive/ hypervigilent/impulsive child who does not yet trust you are very hard but it does get better. Just the sheer physicality of it takes a while to adapt and you need to tune in to dcs needs and quirks. Its also very difficult if the dc rejects hugs and affection - but hurts instead. You are still in those very early days yet. Is there anything that calms him? Wrapping in a blanket ( deep pressure), bath, ( we had a breakthrough with a tiny paddling pool , but a large bucket worked fine too - sort of warm and confined). Finding what he enjoys and getting little moments of fun and true interaction are important.
Is he calmed by smell, or sounds/music?

Have you considered that he may have Foetal Alcohol Syndrome? I dont want to frighten you but it might be something to look at.
this may help

Peona would it help to bump your original thread (from 6 weeks ago)to get peoples ideas and support? Is the sw able to support you and are there likely to be good services in the future? How much support do you have close at hand? IMHO (which could well be out of date now) is that SW support (and post adoption support) tend to see everything as attachment and emotional trauma related and are less aware other conditions.

Thank you magso: you are quite right, SWs think behaviour is due to early experiences and anxiety. He is affectionate and funny and cute (and knows it) and only 2 so lots of reasons for his behaviour. He is quiet in new situations and shy with strangers so perhaps less likely ADHD, and too early to tell (as my bf a psychiatrist has pointed out). Will see how things go and start a new thread if I need more advice. Hope things go better for you with your ds.

Thanks Maryz. You have made a very good point! I have little doubt that putting my needs so low on the list is how I got so ill in the first place. Part of my plan is to redress this - and find others who can run off ds boundless energy or accompany him to clubs. We are just about to get DPs to help with this so I am looking at finding suitable carers. I think we are seeing the first rumbles of teenagerhood arriving! It is particularly important since parent-caring will be for life.
I do pick my battles - they would be endless otherwise!! I need ds to become more independent (starting with basic personal care - things he mostly can do) but the opposite seems to have happened. I realise that the change in me (nevermind being AWOL) may have triggared extra insucurity. Routinely by the time I get him fed/dress/cleaned up and in the school car I feel utterly exhausted and traumatised. Same at bed time.

Peona, if you are reading this, you might want to look at the AUK message boards. You'll probably find lots of advice there and there's a really useful section on what to do in the first year. Apologies if you've already dome this. Hope things have improved. J

Peona, you are right it is too early to tell. It sounds good that he is quiet in new surroundings and shy with strangers (ds even now is more hyper in these situations). Frankly I think it is usual to feel dislike of difficult behaviours (and the child behind them!). I think the older the small child the longer it takes to to get comfortable and settled together. But it will happen. Our first year as a family was quite tough (except for those earliest honeymoon days) and I worried wether I was up to the task and found it hard to like ds - I suspect many struggle. A few months in and ds was seriously ill in hospital. Suddenly I knew beyond doubt I loved this little lad and that I could and would find a way to reach him and do my best for him. I would not be without ds,dispite my worries at present.
Take what ever help you can get but most of all enjoy your smily little whirlwind. It will happen. Take care!