Thursday, October 1, 2015

The Awfulness of Meltdowns

The other day my darling (adult) daughter had a huge meltdown.  She lives in residential care so I wasn't there to witness it first-hand, but I had the full works via phone.

It shakes me to the core whenever this happens and I just never really get used to it.  Things can go along so well for such a long time, then suddenly, something jumps out of line and no power on earth can stop the mountains being moved.  She phones me in order to play me off against the staff.  But the more I stand my ground and don't give in to the desperate cry for more food, a cigarette, or whatever, the worse it gets.  Whatever started this all will fall by the wayside and I become the focus of this powerful deluge of verbal abuse.  Apparently I simply don't love her, I don't understand and never have, I'm the worst possible parent, I'm useless and *%@^* so on.

 It hurts.

I feel useless, guilty, anxious, frightened, alarmed, and often really scared.  I just don't know what is going to happen next.  Sometimes, when the situation really escalates and she becomes a danger to herself or to others, the police are the only ones whose presence can calm her down.  I guess that's the authority hierarchy thing.

I shouldn't feel all these things because I know what happens in a meltdown; I know the pre-cursors to it, I know how one should handle these things, and I know they will blow over.  But I am unable to take off my parent 'hat' and disassociate myself from what is happening to my daughter.  I know for a fact that she is feeling "guilty, anxious, frightened, alarmed, and scared".  I know she is unsure of what is going to happen next, and I know that she tries to take control of the situation, but can't.

Having PWS must be one of the greatest stressors imaginable, not just for families, but for those who were born without that tiny little piece of the 15th chromosome.  So unfair.  Because if we don't take control of this situation, if we give in to that 'just one extra potato, or whatever' then we are promoting a life of constant battle.  As parents, we need to trust those who have studied PW and know what to do in these situations.  As parents, this is quite hard to do.

This picture of parents of a child with autism can be exactly how parents of children with PWS might feel as well.

Our IPWSO Famcare committee is about to start a study of de-escalation strategies or how to handle a major meltdown.  We want input from other parents, so if you are willing to share (we don't need your name or that of your son or daughter), we would love to hear from you.  Write to me separately and I will answer.

IPWSO is lucky to have such a strong team of clinical specialists who will answer our calls for help.  We are lucky to have a strong team of committed parents willing to share their knowledge and understand what others are going through.   So I would like to gather together what we as parents can teach others about what happens before, during, and after a meltdown and what we have learned to do that might help alleviate this, or sometimes even actually avoid the whole disaster.  When looking through the web for more information, I came across this from the Autism association.  I thought it was pretty much word-for-word something we might use as well!

Linda Thornton
Communication Coordinator, IPWSO

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