Here are some suggested organisations that offer expert advice on SN.
ds2: some ADHD characteristics but may be sensory integration disorder?(4 Posts)
First of all, many apologies but this is a looong message. I hope you don't mind me using this forum to try to work out what I could do next about ds2 and how to help him, or help me to deal with him.
Some of you may remember that he started having epileptic seizures about a year and a half ago. We've been lucky in that his seizures are not caused by any tumour or other focal point and that they have been controlled by medication. However, we've had frequent problems with his behaviour since then and it's always hard to work out what is the cause and what we can do about it.
He had a lot of problems settling in to reception last Autumn. That may be better described as the reception staff had problems dealing with him, since he moved school after Christmas and he's doing a lot better in the new school. But I still find a lot of his behaviour at home 'challenging'. I would have previously classed it as ADHD and put it all down to side-effects of his anti-epileptic drugs. But I am now wondering if it sits better within the class of 'sensory integration disorder'. (This is partly because I've read of others on here with similar experiences - I had never heard of SID before.)
I've tried to pick out the main things I'm concerned about:
e.g. he plays with his baby brother very roughly and he is always hitting other children or playing roughly, even with no apparent trigger. He doesn't seem to be able to tell where the boundary is between acceptable rough play and something that is too rough and will hurt someone else. (In contrast, he's always complaining at us when we try to wash him, dress him, do his teeth etc. that we have hurt him. I'm sure my neighbours wonder what is going on some bedtimes because he is screaming at me so much.)
He seems to ignore us or doesn't answer questions, he's often saying 'what?', he will go off to follow instructions and then get distracted by something else or forget what he's supposed to be doing. One of our rooms was empty for a while and I found he was far better at getting dressed if I just put him in that room with his clothes, rather than expecting him to get dressed in his bedroom with loads of distractions. It didn't always work, though!
He gets very angry if we don't want to do things his way, or if we are expecting him to do something he doesn't want to do (like have his medicine - this happens twice a day...) and will scream at us, try to hurt us, threaten to do something awful and generally behave very unreasonably. he gets angry with other children and his brother too (although sometimes that's because his brother is needling him...)
Sensitivity to touch
I think I've covered this under the 'roughness' one, but strangely although he complains about things like getting washed or having his teeth brushed, he doesn't mind messy play and will happily dig around in mud, play with slime, try new tastes and textures etc.
From the sensory integration disorder checklist that I've found on the internet I really feel he has a lot of the ones under 'hyposensitivity to auditory input' like he does not seem to respond to verbal cues, makes noise for noises sake, seems to have difficulty understanding or remembering what was said. This might explain the apparent distraction or inattentiveness, although not all of it. He also has several of the 'internal regulation' ones too, e.g. he has difficulty going from one extreme temp to another, has mood swings during the day, goes from hyper to lethargic energy levels, varies from being constipated to having diarrhoea, does not appear to know when he needs to go to the toilet.
It's really hard to tell how much is down to his drugs, how much to the epilepsy and how much is just innate. And his current school teacher has implied that his behaviour is not much out of the ordinary. But nevertheless she does send him to a small 'nurture group' nearly every day rather than put him in the whole class situation. I'm worried what will happen to him next year in a new class, if he's not recognised as needing more help than most children in dealing with whatever goes on in the classroom. And whatever the 'cause' I do feel like I need help dealing with him, and that some professional help might help me to understand the situation.
We saw a clinical psychologist a couple of times but nothing much came of that. She was supposed to be helping him to deal with inattentiveness etc. but wanted to assess him before coming up with any strategies. And she asked some questions which seemed (to me) to imply she was thinking about autistic spectrum disorders and I really thought she'd got the wrong end of the stick. I've looked at autism checklists before and nothing really rings a bell. He definitely does not have problems with deviating from routine and he does not expect things to be done in a particular order. And he started talking early and appears very articulate. He does, however, appear to have better fine motor skills (cutting, playing with lego) than gross (he is very wobbly on his scooter and often appears clumsy). Anyway, I now suspect she probably had certain things she had to eliminate before investigating further. It hasn't been taken any further as he appeared to be doing fine in the new school. But I have patches of thinking he's fine and what on earth am I complaining about, and other patches of thinking he's definitely not NT and I find him really hard to deal with. And this sensory integration stuff seems to describe him better than anything else so far.
What would you suggest, in your wisdom? Who should I be talking to and who might be able to help? Of course I'm taking on board that you are not medical or health care professionals, and I'm not expecting a diagnosis based on my report above, but nevertheless, you are still experts given that you have to deal with similar situations day in day out.
Thanking you kindly
Quite a lot of the things you've mentioned remind me very much of my ds (5). I took him to the gp who then referred him to a paed who in turn told me he had HFA, which was the very last thing I'd considered. I thought he had tourettes cos he has a lot of tics and repetetive behaviours, aswell as the sensory things and the meltdowns etc, and quite a bit of what I thought was oppositional behaviour. I still look at the autism lists and think to myself that Tom doesn't quite fit the criteria, but I suppose the paed knows best?
If I were you, I'd go back to the gp, with a list of all the things that are worrying you, and ask for a referral to a paediatrician. I also stressed when I went that the main thing for me, and us as a family was to get some help and advice on how to deal with it all properly, as it's so disruptive on a day to day basis. I'm still waiting for support...
Good luck with it x
I don't know what's on the checklist for hyposensitivity to noise but just wanted to say that sometimes not appearing to hear anthing can actually be due to the hearing being too sensitive.
My very first concern about ds1 was that he might be hearing-impaired as he didn't seem to react to sound at all. He was oblivious to things like fireworks going off a few feet away or loud alarms. It turned out that he actually had such sensitive hearing that he was blocking absolutely everything out, including voices. Making noises himself was also a way for him to block out other sounds.
Thanks both of you.
I can understand that idea about blocking out all the sounds, coppertop. So I suppose it's best not to jump to conclusions about whether it's hyposensitivity or hypersensitivity.
We saw the neuro today and she seems to think lots of the behaviour is just down to his sodium valproate. It is an anti-epileptic drug which is known to cause behavioural problems (but is one of the oldest ones used to control epilepsy and I guess we chose this over the risk of him having seizures again).
But she suggested he could see an OT for other aspects of his behaviour. So I suppose the best thing is to go to the GP with my list and see what they will do, and if they will refer us to a paed or an OT. Sadly, in my experience with my NHS GPs, it takes absolutely ages before they will do a referral to a specialist, and I bet they will want to put everything down to the drug side-effects. But I'll try.
Hoping that you get your support sometime soon, othermother.
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