If you are the parent of a child diagnosed with Prader Willi Syndrome the word "meltdown" becomes one of the "most used" words in your vocabulary. In fact, the very purpose of your life becomes to try to avoid them altogether.
The hypothalamus is the area of the brain that malfunctions in PWS. This very small part of the brain plays a very large part in controlling emotion. Folks diagnosed with PWS can quickly spiral out of control, sometimes over seemingly trivial matters. My son Nicholas lacks the ability to put on his emotional brakes. He lacks the ability to control the severity of his reaction to upsetting situations. At first seemingly calm, Nicholas can turn to rage within seconds. Frustrated words and buckets of tears soon follow.
On the positive side, this missing emotional switch can turn off as quickly as it was turned on, making more than a few caregivers scratch their heads in disbelief. The objective then, of raising my children, becomes the important need to acquire the critical skill of distracting and diverting a potential on-coming event. Yesterday, was one of those moments...
Pete, Weston, Nicholas and I were enjoying the warm summer weather. Nicholas was swinging, Pete and Weston were exploring the leaves on the edge of the grass. When suddenly Nicholas starts to wail.....
"Mummy, I want to have a fire in the fireplace. I'm cold!" he announces out of nowhere. The tears are starting to pool. It is my cue that a potential meltdown is quickly approaching.
I believe I have mentioned, more than a few times now, Nicholas's obsession with fireplaces. He loves them. The warm glow of the embers, the crackling sound of the wood, it's all very soothing to Nicholas. During the winter months, we burn lots and lots of wood.
The only problem now is.......it's summer, and 90 degrees! Not a good time to enjoy any more heat. This concept is particularly difficult to explain to Nicholas, since for him, it is not about the temperature. He would prefer to sweat and sweat profusely then ignore his obsessive need for fire. Obsession is, of course, another symptom of a malfunctioning hypothalamus.
Not wanting to roast in my living room, and thinking rather quickly, I announce to my sniffling son...
"Nicholas, I have an idea!"
These five words have saved me, more than a few times, in preventing my son from reaching that mean menacing meltdown moment! For Nicholas these simple words work like magic.
He stops sniffling and listens intently to the "idea of the day".
"It's a little too hot for a fire.......but guess what?" I very quickly add. "How about YOU pick out some candles, lots of candles that we can put in the fireplace. Then we can light the candles and have a toasty fire! What do you think?"
Giving my son "options" and also the ability to "choose" during meltdown moments, has helped him to feel empowered during these spells and has also served me well in distracting his attention. I have also noticed that getting on the ground at his eye level and hugging him, gives him a tool that helps him to feel secure and fight off the desire to rage. Of course, the fact that candles are another one of his obsessions, is also a BIG help in diverting the brewing storm.
Don't get me wrong, I am not a saint....and no where near a perfect parent. These are just some tools I have discovered that work for my child with PWS. Trust me...there are times when nothing works......and it is only by giving Nicholas some time to cry and wear himself out...do the rages subside.
"Candles?" Nicholas asks.....his eyes becoming brighter.
"Yippie," he answers smiling through tears.
I take his hand and we go into the house where for the time being the meltdown is managed by the warm glow of a thousand scented candles burning in our fireplace.