Another world
When I was small we lived in Cape Town in South Africa. At the weekends, we would often go to the beach to surf. This wasn't the stand on a malibou board kind of surfing but a much more modest endeavour. I loved the thrill of those exhilarating waves. It was a game that I played well, considering that I was not as streamlined as torpedo but bore a closer resemblance to a little beach ball. I need to revive those skills if we are to have any hope of reaching solid ground. The shifting plates we exist on are turning to quicksand.
With any medication, timing can be an important factor. Many medicines come with lengthy warnings. Focalin comes with a whole manual. For my son, if the pill hits an empty stomach, the result it torture, mental anguish with a body and mind possessed.
This, as my American pals would say, is a 'no brainer.' You choose. A monosyllabic happy discombobulated child, or a child with the power of speech that is tormented? We're biased of course. We're used to the monosyllabic happy. We are terrified by the torture. It's all too true, there is no such thing as a free lunch.
The glimpse of the possibilities is intoxicating, but the price is far too high.
He writhes on the sofa with chattering teeth. His fingernails pinch, scratch and rake his skin. Small electric currents spasm through his entire body. Spittle collects on his taught lips as he clenches his teeth. His jaw jerks to one side and then the other. His hands flutter over his face open palmed. He is incapable of speech. As he grinds his teeth the vibrations reverberate through my rib cage. His fingers clench and unclench without a pattern. His entire body is a whiplash to turn over, a writhing eel, landed and floundering. He roams the surface area of the sofa like a cat circling for just the right spot. I am beneath him, hopeless, helpless and useless. My only purpose is the somewhat dubious benefit of my physical presence.
Too many neurons are firing at the same time. All we can do is ride out the electric storm and hope that we land safely, eventually.
His brother appears at our side, “what it is?”
“It's the pill dear. He's not feeling very well.” I hope my understatement curbs his qualms as he watches he big brother squirm.
He quotes, of course, from a Pokemon reference. The eerie accuracy gives me the shivers but it's none the less valid -
“I fink…….he is in psychic island.”
I think, that we have no choice but to dive in and start heading back to the mainland, sharpish.
September 22nd, 2007 at 11:29 pm
my mum started life in cape town – i have pictures of her and her twin sitting on the sand. black and white pictures but you can still see they are pale and red-haired. these meds sound scary – i’m not sure we have them over here (or maybe they have another name? there are quite a few slow-release ritalin type things). you are right to choose the happy quite child – talking is vastly over-rated…
September 23rd, 2007 at 12:13 am
You have such a way with words.
You had me on the edge of my seat.
Hope you landed safely.
September 23rd, 2007 at 1:45 am
Maddy, those meds sound awfull. Hope everything works out for both of you.
September 23rd, 2007 at 3:53 am
What a painful situation. I hope all goes well for your child and that you find peace in whatever decision you make. God bless.
September 23rd, 2007 at 4:37 am
My Ped told us with the Risperdal that we would know if it was working and the side-effects immediately and if we had concerns we’d better be back by the end of the week. My Ped doesn’t “suffer fools gladly” and doesn’t have a great bedside manner, but he knows children and autism so I don’t mind the bluntness.
Our initial side effects were a lack of smoke out his ears (dual thoughts), limp sleep, he sat instead of standing for meals/colouring/playdough etc, huge decrease in head banging and afternoon naps. We did have an increase in anxiety but I think that was the headbanging now coming out in verbal form. Nothing we couldn’t live with and lots we could.
Hopefully, they’ll find something else that may help. I’m still debating pulling ours but I’m going to wait until next winter when we meet the new ped who’s taking our our ped’s practice.
S.
September 23rd, 2007 at 5:44 am
Oh my, that sounds incredibly frightening and heart wrenching. I’m sorry your son experienced that and I hope that things stabalize soon.
September 23rd, 2007 at 6:46 am
oh how very frightening for both you and your son! i am just looking into the idea of meds for my son and wow…i am really unsure.
i was wondering…do you have two blogs or sites? i think i would like to link to you through this one.
September 23rd, 2007 at 7:19 am
Yes, that was actually a couple of weeks ago – very grim, but we’re moving on, or rather back to square one.
Yes, I 4 blogs
View from a Broad – which I maintain for my daughter in Mozambique
Alien in a Foreign field – being a foreigner sort of thing
Whitterer on Autism [the black and white one] which is a duplicate of this
new on.
This one isn’t finished yet –
I can only post and comment
otherwise I can’t add anything
but sometime soon it will
be properly up and running.
Cheers dearies
September 23rd, 2007 at 7:51 am
What an awful experience for him and you!
I agree with the above post that said talking is over rated. I talk less than I blog sometimes except for all my talking to a 3 yr old with faulty reception.
September 23rd, 2007 at 8:54 am
Wow, that made me anxious. Best of luck to both of you. I, also, choose happy over most anything else.
September 23rd, 2007 at 10:07 am
Monosyllabic and happy or voluble and tormented in psychic island? Seems a terribly high price to pay for fluent speech. No wonder you don’t sound at all keen to prolong the experience. When in doubt, I too choose happy above all, especially if the price doesn’t seem right. Best of luck to both of you.
September 23rd, 2007 at 2:16 pm
Oh dear, I am sure it is hard to figure out what to do next.
Thinking of you
September 23rd, 2007 at 2:48 pm
It must be scary to even try a new drug since you can’t get it out of your child’s system right away. In my opinion, a happy child IS a symptom of a healthy balance. I think it means you are pointed in the right direction at least, whereas being whacked out and feeling crazy is a symptom of imbalance. Best of luck – we’re rowing in a similar boat.
September 23rd, 2007 at 3:58 pm
Drugs- sometimes people can’t live with them or without them.
“No brainer” makes it all sound too simple. It never is.
Suzy
September 23rd, 2007 at 4:57 pm
Maddy, I could feel the anxiety you BOTH must have been experiencing in the moment. Glad you’ve discontinued those meds; I hope you find something that strikes a healthy balance without the “psychic island” effect!
September 23rd, 2007 at 7:06 pm
I’m sorry–I hope you can both achieve that balance. I found myself squirming in my seat as well as I read your description.
September 24th, 2007 at 10:48 am
What an awful choice to be faced with, but I am sure you are doing the right thing and the fact that you are trying to balance it all just shows what a conscientous parent you are.