Behaviour, meltdowns and tantrums....

I've wrote the title to the post a million times and resorted to writing the post and then the title. Challenging behaviour. Meltdowns. Tantrums. All words that evoke a mixture of emotions in a parents mind. Just over a year ago, M went on the ketogenic diet to control his uncontrolled seizures. It has done its magic and he has coped exceptionally well. We are now weaning the last of his AEDs. As a result, he more awake. The real M is awake. It saddens me to realise how much of M has been locked in by either seizures or the AEDs to control them.Its not all sweet smelling roses though. His behaviour has changed massively.

Meltdowns or tantrums?

There is a difference and perhaps only those who experience both can understand that. I need to remind myself of that fact when I hear mainstream refer to a tantrum as a meltdown. Meltdowns cannot be controlled. Sometimes distraction can work if caught early enough but the majority...they're going to happen. And they are going to hurt... if no one physically, at very least a mum heart feels that bit more broken. M can have both. The former has become more frequent. Some causing physical injury to myself including bruising and concussion, and without a doubt all hurt the heart that little bit more each time. I cannot begin to describe how they are for M. He is still the same beautiful child with the most gorgeous eyelashes. When they happen, his face is very sad, angry, glazed, pale and upset all the same time. If he grew some devil horns and the face of an unknown, would they be easier to watch and experience? Could I pretend by some illusion its not my boy being taken over by a mist? professionals would refer to it as challenging behaviour. In reality it is the world that has become too challenging for M. For M's world more specifically. Triggers vary. Some can be because he cannot do something. What starts as a tantrum can manifest into a meltdown. Some are because there is a sensory overload. We have many new words.. one is payback. (Stolen from very good friends) A good experience will result in payback. Sensory overload can build up or down. A pressure cooker effect can occur. The fizzzz pop happens when safe at home.A change in routine is a massive trigger, common in soto and autism and all the other labels M has acquired.
So how does this make me feel apart from broken from the heart outwards? At the time I just want it to stop. Not just for M, but for me. I never ever would hurt him but I totally understand the limit to which caregivers can be pushed. Even on non meltdown days I can understand how easy it seems if it would just stop (usually induced by exhaustion) and for that reason i never judge steps other caregivers take, though I don't condone them either, if that makes sense...i just get why. I then worry if I am pushed to the limit, how does that make me capable and qualified to help others in the future in my chosen career path. Simply, because I am human and will never pretend to be any other. I will empathise as far as my profession will allow.
After I am drained emotionally yes I may have a headache or a dead arm from trying to keep him safe but the total drain on emotion, mind and body is sometimes overwhelming. M after a period of calm will continue his business as usual. For him, at least, its over. his mindset of living in the here and now does have its blessings. I just have to learn not to dwell, to not get grumpy and to focus on the breaks and respite..and the good times.

An introduction (ish)

I have kept a blog before which has been focused on M, my son. Quite rightly. He is my world. He is now 15 and I am thinking of his future. His needs have changed, as have my capabilities surrounding those needs. I have tentatively made decisions which I struggle with day by day. When he reaches adulthood, the best environment for him is to be with his peers in a residential or supported living arrangement with a 52 week placement. I will write more about it as the blog develops. In turn I aim to offer my experience to a complete career change.
This blog is in the main to provide a platform for how I feel about things, good or bad. I need that forum as head and heart are constantly battling. It is the right decision, but it is killing me inside. In turn it may or may not help others following a similar journey. I make no apologies for the feelings i convey though. I can promise honesty throughout, the good, the bad and the downright raw ugly. But needs must.

See here for our story