Autism, Diabetes, Coeliac’s and Mental Health: catchy title eh?

Well this has been a difficult blog post to write, not because I will find it difficult to say what I want to say, no! once I start pouring out my soul it’s more of a deluge than a steady stream of words. My problem has actually been sitting down and writing the blessed thing in the first place! Honestly, you’d laugh I’ve been like a Jack-in-the-Box for three days now. I’ll sit to type and then my brain goes *PING* and I think of that book I need to return to Amazon, right, that’s sorted….make coffee, sit down, *PING* better book the cars MOT and Service. Okay, another cup of coffee, deep breaths…*PING* ooh, I’ll just get the chilli out of the freezer for tonight’s dinner.

Excuse my abbreviated expletives but WTF! I want to type this, I need to get it off my chest, do I care if anyone reads it (no) do I mind if people scroll by (no) will I be offended if I loose a few followers (not really) Two years ago I started a personal blog on Blogger. It was called You Gotta Larf, it was an idea born from a little seed my counsellor planted in my last session with her; write! So I came home and thought, where’s the harm…it worked, I wrote and a little escape valve released just enough pressure to balance me and allow me to carry on. That blog doesn’t exist now (deleted it) most of the early things I wrote can still be found on here, you just need to search for it. The blog You Gotta Larf began to morph into more recipes and Coeliac advice and tips so I then decided to create a second blog Gluten Free Mum Bakes Again! (also deleted now). Again, the majority of the content ended up here in it’s original form or I re-baked and photographed. 

Things didn’t feel right, it felt disjointed, I spent more time on one blog than the other; as I started to feel better I baked more and decided this was the path I would take. Glutarama was born in July 2015.

But sometimes, just sometimes, my little valve needs loosening to release a little pressure…

I need to talk; Autism

Lewis has recently been diagnosed with Autism Spectrum Disorder (ASD). It’s not a recognised diagnosis now, but more specifically he has High Functioning Asperger’s. In addition to this we firmly believe he has Sensory Processing Disorder (SPD) What does all this mean? It means he struggles to cope socially, he hates crowds, dislikes going out anywhere new, cannot cope at school, hates noise (unless he’s making it), is irritated by certain clothing and textures, has a limited food palette, struggles to sleep, finds talking about his emotions difficult, lacks empathy… I could go on but you get the point. Don’t get me wrong, Lewis is a gorgeous, loving, caring, gentle child with a quick witted sense of humour…he’s charismatic. 

Life with Lewis can mean that the family are walking on a knives edge, anything that takes Lewis out of his comfort zone can lead to a meltdown. Sadly, he has been excluded from his new school and temporarily placed in a unit that supports children like himself. He’s currently there 9-1pm as he cannot cope with a whole day. It’s not what we had planned for our darling son and the future is difficult to imagine, instead I try to just live in the moment and take each day as it comes. On a typical week I was getting 3-5 calls from Lewis’ school or was being asked to remove him from school premises (unless he’d taken it upon himself to walk home already!) Now I get maybe 1 call a week, like today, I picked Lewis up at 11:30, not a great morning which ended up with a bite mark on Lewis’ leg from another student. Last week, in fact, exactly a week ago, I got a call to go to the unit and ended up rolling around the floor of a corridor in the school with Lewis in a bear-grip. It took 40 minutes to get him to calm down after he refused to hand his little teddy into reception, like he had done, with no issue, every other day before that. No two days are the same here…

I need to talk; Diabetes

Many of you who follow me will know that as well as being Coeliac, Bethany is Type 1 Diabetic. Diagnosed at 3.5 years old, following a very traumatic catalogue of events, we are now 9 years in and life doesn’t get any easier. That’s not strictly true, we know what we’re talking about when it comes to diabetes care, we know how to carb count a plate of food in the blink of an eye, we’re experts in type 1 gadgets and gizmo’s and insulin delivery…what we are not in control of is Beth’s blood sugars. It’s cold outside (runs low blood sugars) It’s hot outside (runs low blood sugars) Beth’s having a growth spurt (high blood sugars) Beth’s excited (low blood sugars … which incidentally is the opposite to what she’s ‘supposed’ to do!) Beth is also a young lady now, if you catch my drift, and this too messes with her blood sugars every month. I get a call from Beth’s new school AT LEAST twice a week for me to come in and sort out her levels. No two days are the same here…

I need to talk; Coeliacs

Beth was diagnosed with Coeliac Disease at 5 years old, you could argue that she know’s no different and that is pretty much true. This is an area where Beth excels in, I’m very proud that she manages her CD maturely and is never tempted to stray from a gluten free diet. What is a pain in the bum is that she changed from being a beautifully weaned toddler into the fussiest fusspot when it comes to food! The child who cannot afford to limit her food options, limits her food options! Keeping up my enthusiasm when I bake, trial and create new recipes is … challenging … I’ve lost count how many plates of food have gone in the bin after Beth’s pushed it around her plate with the fork. Trouble is, she’ll have been given insulin for it…so mum had to go into the kitchen to knock something else up pronto! 

I need to talk; Mental Health

Basically, we’re all nuts! Lewis struggles with anxiety linked to his ASD. Before Christmas he was on fluoxetine for it but his psychiatrist recommended him coming off so he’s now drug free, developed a particularly violent tic, can’t sleep and has started hearing voices. It’s almost the state he spiralled into back in 2015 when he was fast-tracked to CAMHS for threatening suicide at the age of 8.

Bethany, not wanting to be left out, decided to allow her demons to catch up with her in what I can only describe as inevitable. Now under the care of a Psychologist, Beth receives Art Therapy once a week to express her feelings on Diabetes, Coeliacs, having a brother on the spectrum and her struggles with self harm and other dark thoughts.

Me? how am I doing? I’m the most nuts of all, but I’m the one who keeps the cogs turning, if I lose it, we all lose it. So if you ask me how I am ‘I’m fine’, if you ask me how Lewis is getting on in school ‘he’s doing really well thanks’ if you ask me what Beth’s up to ‘she’s doing great at school and she’s fine thanks’. WE’RE ALL FINE THANK YOU. 

It’s just occurred to me that people living with anxiety and mental health are really very talented actors! Sometimes we’ll let our guard down and you’ll see a peek of what’s inside but what we don’t want you to see is the tense muscles, pounding headache, pulsing scalp, cold hands, curled toes, thumping heartbeat, dry mouth, shallow breath, stiff neck, tense jaw, mile stares, dark thoughts, panic attacks, dizziness, lethargy, loss of appetite, sugar cravings……

Hey Rebecca! how are, not seen you in ages?

I’M FINE THANKS….

If you are affected by any of these issues you may find these links useful