Autistic, Non verbal pain
How I know my dismissed child is in pain
I’ve not posted much lately at all. I’m so stressed, I feel like I can barely function. I’ve had little to no sleep this past 2 weeks. I finally tapped out yesterday and got my mum to come take my son for a few hours so I could sleep. My son Leon is non verbal, and he’s in pain. I’ve convinced myself of this. He is a non verbal autistic child experiencing pain somewhere, sometimes and can’t tell anyone (me included). I’ve learned to read Leon’s cues. Compare it to how he normally is. For me and many other parents of autistic children, there’s always a “normal” even though they are completely unpredictable and behave nothing like a typical child they sure love their routines. Leons routine this week has gone to complete shit. Here’s a few examples of the notable differences.
Normally – Leon attends school, has typical meltdowns (kicking the floor / upset) but is consolable – these rarely occur, often distraction stops them before they become a meltdown.
Lately – Leon has been sent home for a meltdown lasting hours, he even went as far as biting one of the teachers.
Normally – Leon attends an autism friend club on the weekends – he will normally run around a big gym hall and like hearing the noise of his feet running on the floor and the echo.
Lately – Sitting in the sensory room the whole time wanting a cuddle – kicking off when I’m not there.
Normally – Leon is on Melatonin medication to help settle him down enough to sleep – this works 99% of the time. It calms him enough to sleep (doesn’t last if he wakes up through the night though.)
Lately – For the last 2 weeks, Leon has barely slept more than 2 hours each night. The nights he has slept (for a couple of hours at best) it has been in my bed and he has been on melatonin as well as painkilling medicine.
Attachment & Personality
Normally – Leon is a very cheery boy normally, content in his own company. Plays in his room by himself on his gym ball, or in front of mirrors. A Very non touchy feely boy who would often avoid a lot of human contact in favour of playing / stimming by himself.
Lately – Demands to sit with me and cuddle on the sofa, gets hysterical if I go do errands (laundry etc) Needs constantly reassured that I’m coming to sit beside him. Seeking comfort and being aggressive.
Normally – Meltdowns usually lasted 1/2 – 10 minutes at their worst, they’d involve lying on the floor, shouting and banging arms / legs on whatever was in reach. He’d never hit people he loved though – often if gran put her leg in front of him kicking he would stop and consider going elsewhere.
Lately – Meltdowns have lasted hours (2-3 hours) he only stops when he is exhausted – when stopping he seems to stare into nothing as though he’s not there. Thinks nothing of hitting or biting loved ones. He has bit his brother, gran and myself a few times. He bit his brother very badly on his leg.
Normally – Leon is usually pulling many facial expressions, happy / angry / laughing / sad in hope that you will mimic the facial expression to him.
Lately – Leon seems to be vacant, and not there at all – daydreams often and winces his eyes, burrows his brows when in pain. Looks very tired and skin is very off colour.
Self harming behaviours
Normally – Leon rarely showed self harming behaviours other than kicking his leg too hard on a floor occasionally head bumping. He’d often only do this during a meltdown or to feel pressure.
Lately – Leon has bit his brother, his teacher, his own hand has a bruise on it near to his wrists, which I think have been caused by him biting them – I’ve witnessed the biting of his wrists just can’t see the teeth marks to say it has definitely been that. He’s also been banging his hands and feet of things much harder and aggressively than he normally does – glass fish tanks, his metal bed frame & ladders, the floor, coffee table at grans.
We thought it may be dental pain – and booked him in to see the dentist for today. Dentist confirmed he had a bit of decay on the outer surface of the back tooth, and a bit too much overcrowding in his teeth so they want to remove some. However none of this would be causing him any discomfort.
We decided to book into the GP as an emergency appointment and after explaining all of the above, the GP simply checked his ears, his throat, listened to his chest and decided he might be “a little bit” constipated.
His toileting is no different to what it normally is. As an ASD child, most ASD children have very limited palettes so their food intake is very restricted – I’m quite lucky with Leon as he loves his vegetables (admittedly mostly peas and carrots) Everytime I take Leon to the doctor they state constipation is the problem. Now, the thing is it very well might be! But I have asked for allergy tests. I’ve asked for a dietician to consider a better diet for him to reduce his bowel issues. I’ve asked for a scan to check for obstructions before his pain is dismissed, but they all fall upon deaf ears.
They give you the “sympathising but not listening” glare of a GP who assumes that you are in fact a looney toon and worry wart of a mother. Then again that’s GPs for you. My son never attends his GP for this very reason. We always, always go to his own doctor who may not give us the answers we want but at least they have some knowledge on treating non verbal children. Unfortunately for us, she was off today.
Tomorrow we’ll try again.
Leon is still attending school, albeit they are very aware of how unpredictable he is at the moment. He is in a special school with a lot of support staff. Hopefully tomorrow I’ll be able to call up and get a quick appointment with his Doctor. Preferably one for tomorrow but I highly doubt that happening.
I want them to consider
sinus infection : He appears stuffy, but hasnt had a cold – may just be because of the extra screaming and crying.
Gastro problems: His father had really bad health issues related to his stomach, wondering if it may be repeating itself in my son.
Groin issues : He seems to be sore when cleaning / drying around that area – possibly a urine infection?
Constipation: If it is constipation, why is he constipated. Is it his diet. Can it be amended, can something be given to help loosen his stools. Can we get a scan just to make sure there isnt an obstruction. (Leon was terrible for eating non food items before. He might have gone back into his old ways when I’ve not had my eyes on him)
Legs / Spine : Doesn’t appear to have pain in his leg. Might be worth getting them checked over as he has been really hurting them with his kicking.
Head : The wincing eyes leads me to believe he may be experiencing headaches. Is it simply sensory overload? It could be! Is this causing him migraines, can these be medicated if so? I don’t want him to experience any more discomfort than he has to. Currently he cannot function at all as he is.
I used to wish my child would one day say mummy, or mummy I love you. But now I would cut of my right arm, and probably a leg to have him tell me why he’s upset, what it is that’s hurting him, or how I can make it better. There is nothing more heartbreaking than knowing your child is in pain and you can’t do anything to fix it. Nothing more frustrating than a GP fobbing you of with another “constipation” diagnosis.
No one has all the answers – especially when a child has complex needs. But to dismiss him is unacceptable. I’m going to have a battle on my hands in order for them to fully assess my non verbal child.
He cannot tell us what’s wrong, so we’re just going to have to find it for ourselves.