Little blue cup

Some of you may know about a group that was set up to help people source things for kids with special needs. It all started when an autistic child needed a new blue sippy cup but they didn’t manufacture the exact one any more. There was a social media frenzy and he now has enough blue cups to last a lifetime.

Those of you who have never had a special needs kid will be saying “just use another cup then.” I may well have said the same thing a few years ago, pre Little Viking.

Tonight I gave Little Viking his bedtime formula in a new cup. We picked it out together. He pretty much refused to let go of it as we went around the rest of the shop. It had aliens on it so he could quote favourite lines from his current favourite TV show.

And of course he refused to drink his milk from it come bedtime.

We didn’t have tears or shouting; he even drank a little from it with a bit of persuasion. But it’s different and it clearly made him uncomfortable. So in the end I decanted the milk into the old blue bedtime cup and he immediately took it.

Change. Just like me and my BPD brain, my boy doesn’t like change. “Who does. Just get on with it” is the uneducated response.

I’m fairly confident I’ve dealt with this from a BPD point of view in past blogs. Or tried to anyway. It’s not easy to argue against change with a “just ‘cos, it makes me uncomfortable”. But with BPD and with Little Viking, uncomfortable leads to anxiety and unhappiness. For him, his behaviour over other things starts to unravel. ANY amount of extra stress leads to an out of proportion response, mostly negative.

If he is uncomfortable because his milk is in the wrong cup, he doesn’t drink as much (and his formula is vital as he doesn’t get enough calcium or vitamins from other sources of food and is intolerant to all the readily available/affordable supplements). He feels stressed so starts exhibiting sensory seeking behaviours in an attempt to calm down. So he’s bouncing, kicking and fidgeting away during the bedtime routine instead of relaxing. As I write this he’s 40 minutes into “sleepy time” and is chatting away to himself, quoting things, reciting lines etc which is his way of calming down (vocal stimming). All this from ONE WRONG BLUE CUP.

Now think over all the other things challenging him over the day. The noise in the shop as we bought the cup (he spent 5 minutes spinning in circles then sat down on the floor for a bit). The woman on the checkout taking the cup from him, however briefly. He’s also having a histamine reaction to the small amount of jam I put on his toast today, presumably because his system is overloaded from pollen plus that single plum I gave him on Thursday as a trial, and possibly the lamb jar he had for tea tonight (which I had to spoon feed into him as he refused to feed himself).

I can’t explain clearly WHY change affects us the way it does, but the results should speak for themselves. Of course, some change is necessary and I push myself and him through a level of discomfort because we need it. This week has, for example, been the battle of the pull up nappy. The first step towards maybe thinking about thinking about toilet training in the next year. The first one stayed on for about a minute. I took it off because his wobbly bottom lip and “I not think this mummy” alongside the anxiously fluttering fingers was too much for me to handle, let alone him. But we’ve persevered and, so long as I slip the pull up on him as he’s lying down (therefore pretty much defeating the purpose), he is OK with them. And definitely so long as I put his trousers on over the top, no matter how hot and sunny it is, because we wear trousers Mummy, obviously. Even if I was determined to tackle potty training this summer, the old adage of “just let them go bare bottomed” is clearly never going to be an option!

I’m sure some people have reached this point and are still thinking “just get him to do what’s expected of him. Use the new cup. Pull up the damned nappy and leave off the trousers”. And accompanying those thoughts is the “I’d never let my kid get away with that. It’s all down to poor parenting” thoughts. These are comments heard every day by special need/ASD/SPD mums all over the country. Sometimes even from medical “professionals” in the form of health visitors or GP’s.

We’re now an hour past bedtime and Little Viking is singing the alphabet song on an endless loop. Letter perfect I might add (he even knows which letters are vowels and breaks off singing every now and then to shout out “AEIOU are vowels. Gold star. Well done. You are awesome” as per the annoying YouTube video he likes watching). All because of the WRONG BLUE CUP.

 

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It’s been a while!

Ok…so my plan for a weekly blog about the Little Viking went somewhat awry, given I last posted at 4 weeks old and he’s turning 3 in 23 days. What can I say? Life definitely happened.

 

I’ve just been reading those 4 posts and all I can say is Mother’s Intuition is REAL. All my “paranoid” thoughts about food intolerances and even my comment on how much he hates getting dressed/undressed were 100% absolutely spot on.

 

As of today, Little Viking is intolerant to around 40 ingredients. From a lot of trial, error and Dr Google, I suspect he has genetic issues somewhere affecting his metabolic pathways meaning he reacts to some foods (dairy, wheat, gluten en, legumes) all the time, and others he reacts when a threshold is reached. He definitely doesn’t do well with any levels of histamine.

 

Tied in with this are his sensory issues (still doesn’t like getting dressed/undressed) and other behaviours pointing us towards something like autism/Aspergers. We had our first appointment with the paediatrician in May and have lots of follow up appointments over the year. Not looking forward to blood tests next week (checking thyroid levels, vitamins etc but also genetic testing).

 

The one that surprises people is the referral to Speech And Language (SALT) because the Little Viking rarely shuts up. But when you listen, he repeats himself, he repeats what we’ve just said and he repeats lines from TV shows and books. Yes he has spontaneous speech (once he’s repeated the sentence a few times to change the word order) but, as the paediatrician picked up, he quite often doesn’t fully understand what he’s saying or what he’s being asked. But he has an excellent (scary) memory so learns scripted answers that can fool you unless you recognise the tone of voice or source of the quote.

 

He is my beautiful, gorgeous, funny, demanding darling. His memory means that he has known all his letters, shapes, colours and numbers for a year now. Sometimes his number logic means that 13 is three-teen and 17 is one-ty seven (if we’ve been working on larger numbers like 138) but it is scarily logical. He likes drawing rainbows (in the correct order) but heaven help me if I try to explain that indigo and violet are two different shades of purple!!

 

Thankfully, unless he is having a bad time with a food trial, he sleeps well. He often takes an hour to settle himself off but generally he just sings the alphabet or nursery rhymes to himself. He doesn’t take the initiative often so has got out of bed only a handful of times in the 9 months or so since we changed his cot into a bed. The most recent unauthorised bed exit was today at nap time….because he took off his sock and was distraught over it. As you do.

 

The rest of life is a bit up and down. I haven’t written anything substantial since he was born, excluding this blog entry and dozens of frantic posts in various Facebook support groups asking “is this normal?”. Lovely Boyfriend’s work are being *censored* so everything is up in the air and has been for most of the year. My BPD doesn’t like all the uncertainty at all. There is virtually nothing I have control over in my life right now so it’s a bit stressful. My latest hobby keeps me going as much as the Little Viking does; fish! The wee man enjoyed looking at fish one afternoon when I was killing time in the local pet shop. We now have one small cold water tank of minnows (Porglet tank), one small tank of Boraras and an enormous tank of various tetra, gourami, cories etc (including our very own baby fish!).

And, as you might expect, the Little Viking ignores the lot!