Head Banging not just for heavy metal fans- the autism aspect
One of the very real and very scary side effects of autism for some families is self injurious behaviour. It is thought that 50% of children on the spectrum exhibit some form of mild self injurious behaviour, from biting themselves, to excessive rubbing at a spot, or scratching or pinching themselves. Serious self injurious behaviour is exhibited in about 10-15 % of children with autism and includes actions such as head banging, hitting and punching oneself and intentionally hurting themselves to the point that serious injuries such as broken bones, bleeding or brain damage may result.
It is devastating to watch your child hurt themselves and not be able to do anything to stop it, our first instinct as a parent is to protect our children so how exactly do you protect your child when the danger comes from within themselves. You learn how to read your child for signs of stress and survey your environment for any and all triggers that may possibly cause them to want to hurt themselves, but as hard as you try sometimes it is not enough and sometimes you just can’t avoid that awful moment when your child slams their head into the wall or the floor or takes their own fist and punches themselves in the head, or slams their knee into their face. The pain that you feel over the pain they are causing themselves is only matched by the dismay at not being able to help them.
Our oldest son used to have self injurious behaviour, he would slam his head into the wall or floor and a few times he would slam his entire body into the wall or anouther object, but his behaviour was always triggered when he was in a full meltdown and was much much easier to predict as you knew melt down = head bang and we were able to restrain him in order to stop him from hurting himself, luckily as he got older and his ability to speak and communicate got better his self injurious behaviour stopped as well as almost all major melt downs. A few months ago when Ben slammed his head into the floor for the first time my chest got tight, and I felt like I was going to be sick to my stomach, and when he countinued to hurt himself on an almost daily basis my heart broke, you see his behaviour is not brought on by a melt down, no his behaviour is spontanious and unpredictable and more often then not I don’t know what is going to cause him to hurt himself, I know that he does it sometimes after being told he can not have something or to stop doing something, I know that he sometimes does it when he is upset or frustrated for instance when I have to leave him with someone but it is sparadic and sometimes I don’t know what causes it for instance he may be set off by a sensory trigger or someone may accidently bump into him. What I do know though is that the frequency in which he is hurting himself is increasing to the point where he bangs his head at least three or four times a day sometimes more. two weeks ago he slammed his head so hard into a cinder block wall after coming out of occupational therapy that he stunned himself and had a group of doctors and nurses rushing to our side in total shock and fear. ( we had to walk through their lunch room as the parking lot is under construction so we had to go a new way out) The sound that his head made when it slammed into that wall sent shivers down my spine and I literally almost dropped my littlest man while trying to get to him. The best way to describe it so you can somewhat understand, moms that have had a child fall down the stairs or fall off of a play structure, that tight chest and instant fear, that is how I feel every time I hear the crack that his head makes when it hits the floor. Just before Christmas he slammed his face so hard into our t.v stand that he knocked a tooth out brought on by a sensory trigger to a sudden noise.
This is two incidents in just as many months that have resulted in a serious injury. I am terrified, our workers are worried and concerned and we need to figure out how to get it to stop. They sent a letter through to our doctors office advising they wanted a referral sent through to a neurologist.
Severe self injurious behaviour can be caused by any number of things ranging from, seizures or illnesses such as Lesch Nyhan, Fragile X and Retts syndrome, to attention seeking or frustration. It may also be caused by issues with ear pain or head pain or the inability to communicate all three of which Ben has. In order to stop the behaviour you must first figure out what is causing the behaviour and to be on the safe side you want to ensure that it is not a medical or genetic issue. So today I went into the doctors office to start the process and to have her put through the referral for a neurological assessment, an assessment that will inevitably be hell on both Ben and I as they try desperately to get him to co operate long enough to be able to get an accurate reading and which is more than likely going to result in a sleep deprived EEG which will have us both tired and stressed because it basically means that I wake him up some time around 11pm and keep him awake until our appointment the next morning around 9 or 10am, doesn’t that just sound like the best of times sleep deprived mom and lil man, fun all around for sure.
Our doctor’s office called this morning with a cancellation, I jumped all over it as the next available appointment was not for another three weeks, calling our other appointment for the day I bumped it back in order to be able to fit both in. I showed up at the doctors office and we sat and we waited they were apparently running behind so we waited for fifty minutes, a very very long fifty minutes with Ben starting to get very agitated and starting to stim and at one point throwing himself onto the floor, I was on edge, not wanting him to hurt himself and knowing that it was quite possible in his already agitated and stressed state, I tried redirecting his bad behaviour as he tried to stand on the chairs, flashed the lights on and off and tried to run from the room, I was trying very hard not to say something to the very rude receptionist that kept flashing me dirty looks and bit my tongue instead of yelling at the “perfectly manicured mother” when she gave me the lady control your kid look. Finally I couldn’t handle it anymore and I told the receptionist in no uncertain terms that we would not be waiting any longer and that the doctor had better see us now as we had another appointment that we needed to get to, She took us in right away, but my frustration and anger only grew as she advised that she wanted to do some other tests before putting the referral through and that since he was not a real danger to himself or others then we could do those tests when we came back in three weeks, I needed to leave I was already pushing it for time and was going to be getting home to meet our other appointment with minutes to spare, so I did the only thing I could do at the time without completely losing it on the doctor, I got up and walked out of the room, saying over my shoulder, I will remember that the next time he slams his head into the floor that he is not a danger to himself. She followed me out of the room and down the hall and through the waiting room saying I can see you are upset, I will call you and we can discuss this further when you have more time and have had time to think about it more rationally, by the time I hit the waiting room I was bawling my eyes out, as I hit the outside door I turned and said to her when you have witnessed your child slam his head into the floor hard enough that you can hear the crack made from skull hitting floor then maybe you will understand. I did not wait for a response, I turned and hurried to my van and raced home, crying the whole way. Until you have witnessed it you can not describe to someone what it is like. Our natural instinct is to ensure our own safety, we can not fathom why someone would voluntarily hurt them self.
I am sending this blog post to the doctors office, and I may even print it to keep in my purse so the next time I am somewhere where someone is giving me that look like control your child, I can hand it to them and say I choose to not risk this behaviour, you can choose to not judge me on something you know nothing about. So tomorrow I will call the doctors office again and advise them of exactly how it is going to be and after a night to collect myself there will be no tears on my end.
That’s me for today just trying to live life one puzzle piece at a time and frustrated at the fact that some doctors really just don’t understand the severity and danger of severe autism.
J.
