Update: Beth is now 12 and a beautiful young lady, old before her time bless her but it was inevitable given the responsibilities she has. Lewis is now 10 and has official diagnosis of Autistic Spectrum Disorder, Sensory Processing Disorder and Generalised Anxiety Disorder – BINGO!…or is that a hat-trick? I jest of course, but my God if you can’t laugh what on earth can you do?
For those of you coming to our site to find scrumptious gluten free bakes and recipes only, this blog entry may not be for you, I appreciate that but we’re not called Glutarama for nothing. If you’ve looked on the main page of our site you will have seen the page About Us giving you a brief introduction to the family. On that page I go into the basics of life with a 10yr old daughter with Type 1 Diabetes & Coeliac’s Disease, and an 8yr old son with a hole in the heart, General Anxiety Disorder and who is in the process of getting a diagnosis of Autistic Spectrum.
Before you tut and think ‘Oh here we go another one of those mums who isn’t happy until her kids have every diagnosis under the sun’. I didn’t look for any of these, they happened to us whether we liked it or not. Bethany’s were the hospital route with a Diabetic Ketoacidosis (DKA) emergency at 3 and her Coeliac diagnosis came 18mths later following a nasty anaemic episode and weight loss. Lewis’s issues have grown over time and they all seem to work in conjunction with one another. His anxiety seems to be historical and we have a hunch they originate from Bethany being diagnosed when he was only 18mths old. He worries about her all the time, hates the fact they are in separate schools and panics about things that might be. These anxieties have built up so gradually over time, that looking back I now see that we’ve adapted how we parent Lewis to accommodate his quirky ways and concerns. There are other times however, times when Lewis feels utterly out of control that he erupts in a collision of emotions; anger, sadness, worry, fear, love, hate, guilt. It’s the fight or flight we all have within us, only Lewis, like many others with Anxiety, is closer to door ready to do a runner.
Rapid heart beat
Difficulty breathing or getting a proper lung-full of air
Tensing legs, arms, neck
Unconscious wringing of hands, tapping or rubbing fingers together
Feeling of tight chest
Rapid eye movement
Hyper awareness of surroundings
Staying motionless for a long period of time – unknowingly in an awkward position (i.e. foot turned in, hands twisted)
How do I know all this? … those are my symptoms! I am the swan gliding across the water (feet paddling furiously beneath the surface) I am the mum who brushes herself off and says ‘you’ve gotta laugh’ and carries on, I am the mum who is immune to surprises or shocks anymore. WE are that mum, dad or carer, because if you’ve read this far and you’re holding your breath, YOU know exactly what I’m talking a about.
My daughter Bethany is already struggling with mother nature’s wave after wave of hormones and blood sugars of over 10mmol/180mg constantly (I’m ashamed to say they are more often 14mmol at the moment), she suffers terribly with a condition called Pica whereby she eats inedible things – such as her bedroom walls! Then of course there’s her Coeliacs Disease which can have a terrible knock-on effect with her blood sugars if contaminated.
My sons Lewis’s anxiety leads to very similar symptoms to those above and this in turn leads to uncomfortable, sometime painful skips of the heart beat, which, in true Catch22 style, leads to him getting more anxious and panicky. He speaks of hearing voices at his very low points and dare not go up stairs, downstairs or in the garden alone. He has night terrors, scary daydreams and for the past two weeks has insisted he stays inside, in his pyjamas, under a blanket, on the sofa, playing the XBox. It can take the slightest thing; a failed autosave, running out of his favourite cereal, the WiFi freaking out on us, and he breaks down into tears, then anger, then fury, then tears, then what I call ‘the ragdoll effect’ whereby he’s burnt himself out and flops!
It was the Pumpkin Pie blog earlier today (or yesterday it’s now 1am) where I said I’d been frantically cleaning the house and defrosting the freezer, that was my way of burning off my nervous energy. Here comes the science bit! Did you know that when you have anxiety you get unappreciated bursts of adrenaline, and adrenaline can’t be reabsorbed, you need to physically burn it off. We were supposed to have an appointment with Lewis’ child psychiatrist today, she phoned in sick! So you see I’d cleaned like a lunatic for nothing but on the plus side, we’ve eaten pumpkin pie, jam tarts and everyone is contented. Plus my apron came in the post so, as proven by today’s unscheduled baking session, Life IS a drama, but gluten free doesn’t have to be!