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

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

Behind the Scenes, Living day to day with Autism

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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

30/01/2017 · 13 Comments

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Comments

  1. Dawn Martin says

    04/04/2022 at 8:47 pm

    First time reader. Was looking for a gluten free recipe for licorice ice cream and found YOU. Your blog was brilliant! Like a breath of fresh air. I cannot wait to read more.

    Reply
    • Glutarama says

      05/04/2022 at 8:01 am

      This comment found me at just the right time Dawn. Thank you so much for taking the time to leave your thoughts it really means the world to me – Rebecca x

      Reply
  2. KIM says

    11/04/2019 at 12:23 pm

    Oh God – I relate to this post on so many levels.
    First of all – you are amazing.
    Genuinely.
    Coping with all of that requires superhuman effort, so please recognise how strong AND NOT NUTS you are.
    Secondly – you’re not alone. That feeling of “jesus h, what next?’ is one I recognise all too well. When my family tries to sympathise and they say “So why do you think he did that?” I want to scream. If I knew why, don’t you think I would prevent it or solve it or avoid it at all costs?
    Thirdly – you have an enormous heart.
    Through all my trials and tribulations with my son, I’ve realised it’s true that all you need is love. He’s my child and I love him. That’s it. Once I really understood this, a lot of the anxiety fell away, so I hope you recognise that in yourself too. Your love for your kids shines through every post.
    Big love from another mum WHO’S FINE
    ;)
    X

    Reply
    • Glutarama says

      12/04/2019 at 5:59 pm

      Oh Kim, I think I love you. Thank you so much for taking the time to comment. You’re awesome, I’m awesome….our boys are awesomer!!! Lewis would tell me off now saying that’s not a word. Keep being you and I’ll keep being me xxx

      Reply
  3. Jacq says

    10/02/2019 at 11:47 am

    Wow powerful read. Not much I can say of any help. But stick with sharing as and when. Your are writing is so positive I m sure it will help others. I’m not sure how you see yourself but I see someone who as more inner strength than me or anyone else I know

    Reply
    • Glutarama says

      10/02/2019 at 7:34 pm

      Oh Jacqui, that’s just sent an bolt to my heart, what a lovely thing to say. As with any mum in any situation there is always self doubt, shoulda, coulda, woulda and if only’s but my goodness these two are worth every second. You’ve just given me the strength I needed to face half term head on with love in my heart. xxx

      Reply
  4. Gaynor says

    10/02/2019 at 9:37 am

    Hi loved ready your post – i am diabetic and coeliac – I have had diabetes since i was 7 and diagnosed coeliac 5 years ago . Your read was positive and will inspire other mums. I think there is a lot of criticism about what is available – but a lot of these conditions are in the new discovery stages and i think things will get better – if i think back to when i was diagnosed diabetic in the early 80s we had glass syringes and steel needles – now its prefilled syringes and stem cell research – keep up the good work

    Reply
    • Glutarama says

      10/02/2019 at 9:54 am

      Bless you Gaynor thank you for taking the time to comment. I know someone who had to pee on a stick to get their blood sugars…from 30 mins before. It’s amazing how far we’ve come and I’m hopeful for what the future brings. The idea behind these posts is exactly that, take the stigma out of these issues/conditions/whatever you like to call them and add a little gentle humour at the same time, life is for living and while it can be really crappy there’s always the good times. All the very best xxx

      Reply
  5. Kate - Gluten Free Alchemist says

    30/01/2017 at 10:46 pm

    Loved this post Rebecca. It’s honest and real. It reflects life and the craziness that comes with it. I am really really lucky to have only Coeliac to deal with (and we thank our lucky stars every day). Even so, life here often feels like it is willing the straight-jacket…… So you are doing amazingly well….. Let that lid off the pressure cooker! It may result in sanity….. or at least a little less madness! x

    Reply
    • Glutarama says

      31/01/2017 at 2:27 pm

      Thank you Kate, I felt so much better for it afterwards. I had a big panic attack in the car in Sainsbury’s car park last week and thought enough is enough! Feel light as a feather and ready to rumble now! (maybe not quite that good but thinking positive ;-) )

      Reply
    • Lynne says

      25/04/2019 at 10:05 am

      Such an honest post thank you for sharing. Sometimes it feels like you are the only family with things to deal with. So it’s so refreshing to know others have difficulties too x

      Reply
      • Glutarama says

        27/04/2019 at 9:18 am

        Thank you Lynne, I’m sorry you’re going through difficulties too. I think we all are in our own little worlds. Never believe the harmonious Instagram and Facebook images you see…it’s all bollocks. Sending love.

        Reply

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Rebecca Smith - Glutarama, Delicious Gluten Free Recipes since 2015

Hi I'm Rebecca, slightly bonkers but can you blame me! Mum to two teens with additional needs and a great combination of dietary needs. With over 13 years experience of cooking gluten free from scratch. Welcome to my site you lovely person now learn how to make anything gluten free with me!

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