How to survive a meltdown without having one yourself.

A little something from my own personal experience that may be of use to you.

1. Keep absolutely calm and maintain a neutral expression. Resist the urge to shout back, difficult as that may be. You’ve had a hard day yourself, now here is Mummy’s Treasure fresh off the bus ranting about how you bought the wrong sort of pasta sauce for tea. Red Pepper Pesto instead of Red Pesto. HOW COULD YOU?

2. Remove their shoes. Your shins and good furniture will thank you. This will also stop them from hurling footwear at your head, the mirror, the dog/cat and any surprised handypersons in the house who are repairing the last thing that Mummy’s Treasure saw off during a meltdown.

3. Keep your voice as quiet as possible. This can often have the effect of stopping Mummy’s Treasure from yelling in that ear-splitting way they have; you know, the way that makes you wish you lived in the country so the whole street didn’t have to be party to your failings as a mother. Develop the habit of saying in a quiet voice, ‘if you calm down we can read a book/raid your father’s secret chocolate supply/watch The Land Before Time 24: Return Of The Great Franchise (what do you mean you’ve watched that a squillion times already? Think of your shins!)

4. Always utilise humour in a difficult situation. So when Mummy’s Treasure has their hands around your neck and is pushing you up against the wall, do remember to say ‘well, sweetheart, strangle me if you like but may I point out that you have no trousers on?’ Mummy’s Treasure can go from 0-60 in a heartbeat, but the opposite can also apply.

5. When the meltdown is over, always tell Mummy’s Treasure how proud you are that they calmed down. With any luck you’ll get a bear hug. Don’t let your anger fester. Always let it go. And NEVER forget the healing power of chocolate and wine. Good luck!

Life after Dude

So... (deep breath in), we had the funeral on December 19th. Terrible yet beautiful if you know what I mean. The coffin was decorated with scenes from my son's life and I'm pleased to say there were people there practically from every section of his life. It was a Humanist ceremony. Rather splendidly, several attendees have since said it was the best funeral they'd ever been to! The wake was fab. Lots of friends and family all comforting us and plenty of laughs. In fact I don't think I've experienced anything other than compassion and solidarity from everyone. The only sour note being the local LD department who, when I informed them earlier this summer wanted to know why they were not informed when Jordan died. This was not a deliberate omission on my part, mind. We had nothing to do with them or they with us. Not a hint of condolence or even compassion. Very odd. I can only hope I got them on a bad day. We had the inquest on March 20th, which confirmed that Jordan died from SUDEP (Sudden Unexpected Death from Epilepsy). You can read about it here. I used to fret about this when Jordan was younger and had absence seizures but the fear had gone to the back of my mind as he'd been seizure-free for ten years at the time of his death. Everyone was very sweet at the inquest itself. The doctor who performed the autopsy stopped by, and as he'd handled Jordan's brain and heart, I felt it only appropriate to thank him and shake his hand. It's fair to say that the shock is wearing off a bit. Yoga and walking take the edge off when I'm feeling grim. We went to Thailand for ten weeks (for work) which was the trip of a lifetime. Now we're back and I've just had the first summer without Jordan, but it was much easier than I thought. I love being here, even when it's silent. I also came across a very helpful book, which I recommend to you. Not easy reading by any means but plenty in there to resonate with anyone whose child has died.

Be not afear'd...

Now that we have collected Jordan's ashes, it occurs to me that I should shift the emphasis of this blog a little, to encompass the many processes of bereavement. If the last few weeks have shown me anything, it is that each individual has a unique response to the death of someone they love. For the record, I don't think there is an afterlife; Jordan is beyond my reach and I am beyond his. I don't think we will ever reunite. I daresay that comes across as very bleak. But it does make me see clearly that this life is not a rehearsal for anything, so it's time to carpe a little diem. If anyone has links to posts about bereavememnt, particularly if they relate to special needs, do get in touch. The title of this post is from Caliban's speech in 'The Tempest', one of Jordan's favourite Shakespearean plays and which was read out at Jordan's Humanist funeral.

Celebration of Jordan's life.

Jordan's funeral, and celebration of a life well-lived, will take place at Honor Oak Crematorium (also known as Camberwell New Cemetery) on Wednesday the 19th December at 2.30pm. We have engaged the services of a Humanist celebrant. Thereafter to The Old Nun's Head pub for the wake. All welcome but RSVP so I can let the pub know if more refreshments are required. Should you wish to, please make a donation to the The Meningitis Trust in Jordan's name. We'd be well chuffed.

Jordan Luke Perry-Smith 2/02/91 - 24/11/12

Well, here's a blog post I never thought I'd write. I'm sorry to tell you that my son died very suddenly and unexpectedly last Saturday. His final words to me were 'can you pass me the scissors?' as he wanted to open a packet of pasta for his lunch. Literally seconds later, he had a massive seizure and his heart stopped. The ambulance was there in a flash and a team of six fought to get his heart started again. We transferred to King's Hospital (who were brilliant) where they tried again but it was no good. They stopped resuscitation after an hour. His time of death was registered as 14.45 but I'm reasonably sure that he died at home. I think he wasn't in any pain. His sister, carer and I sat with him and I'm glad to tell you he looked very peaceful. His poor dad had to fly back from Thailand, where he'd been on business and saw him on Monday. The funeral's not for two weeks or so while they conduct post-mortem tests to confirm a seizure. Now I must away to tend to my family. If it seems like I'm coping, well, I am. Six months from now I'll be howling at the moon.

Blimey!

Has it really been more than a year than since I blogged? All going quite well, I think. Jordan has lost a lot of weight, which has improved his mobility. He really enjoys college and is trying out taster days for horticulture and art (with a view to pursuing further courses next year). Fixations to date include relatives (and visiting them), dressing up like Bill Sikes out of 'Oliver!' and the wearing of denim jeans as opposed to tracksuit bottoms. The absolute favourite though is our proposed holiday in Barmouth, Wales at a place called Twr Mynach. It really does have a tower, much to the boy's delight, as he thinks it's Hogwart's. A re-enactment of Rapunzel will take place.

Portrait

Jordan's dad knows the artist Marc Quinn and recently commissioned him to do this portrait of Jordan. It's a photo-realist picture that measures about 3 feet by 4. We're knocked out by it!