What do you want?

After last week’s paediatrician appointment, the idea of it being another 6 months at least before we have any answers has dawned on me. Another 6 months of not knowing how to deal with what we don’t actually know, that living in limbo feeling.

Feeling the pain this week as the build up of Luca’s, what seems to be constant, frustration of not being able to tell me what he wants is getting to me. Meal times used to a chance for me to have time out while my three monkey’s ate, the twins have been amazing at eating since they were little, everything and anything! All three of the boys did baby led weaning and took meal times into their own hands (literally).

But for the past couple of weeks now Luca has become very touchy. Throwing tantrums, hissy fits, sometimes even full blown exorcist take over! The thing is I don’t know why, so what do I do to resume the situation, to calm him down? And yes I’m aware this could be normal toddler behaviour, but a normal toddler would be able to communicate to an extent. The boys don’t point to anything, they will drag you places and you could go through the whole kitchen before you actually find out what it is they want! Also if he’s happy eating and you try to straighten out his hair, wipe his face, that’s it, meal times over.

So what do you do when you don’t know what they want? Treat them like a naughty kid? Comfort them? Leave them to cool down? Let them get away with murder?

Tonight, we sit down to have a homemade chicken teriyaki stir fry with rice noodles and lots of veg, one of our favourites and on his 2nd bite that’s it, plate on the floor, why? No idea! What do you want? God knows! What do I do? I felt angry about the waste and mess and frustrated to how I couldn’t  understand and lost that I couldn’t make it better. So I carried on eating my food and let him scream it out till he calmed down a bit, attempted to give him a few pieces individually, that also went on the floor. More tears and cries, once he’d calmed down I attempted to spoon feed him and he ate a fair bit. It feels like a massive leap backwards and who knows if this will be a problem forever but at least he’s got some food in him.

Luca definitely struggles more than Jude currently, but he has his frustrations too. Wish I could see inside their tiny brain and understand. I’ll do whatever it takes to communicate with you boys ❤

Here we go again…

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It’s been around 4 months since we had our initial speech therapist assessment for the twins  after our health visitor expressed concerns on their delayed speech, which I explained more about in my previous blog/video.

Yesterday, was our long awaited paediatrics appointment, we were given two separate slots 9.30 & 10.30 one for each twin, myself, the boys dad and also my sister came along to watch one of the twins while we were in the appointment with the other. We must have been the first appointment of the day as the place was pretty much completely empty and luckily didn’t have to wait long before the Doctor came out and called for both of the twins, I asked which one she wanted first and she just said to bring them both, I found this a bit odd, why give them separate times if you’re going to see them together?

Anyway, she had the 30 page forms, that I had filled in for both twins, along with some paper work and there were toys and things for the boys to do. Verifying lots of questions and updating on how the twins had been doing since I filled in the paperwork 4 months prior and couldn’t help but think “here we go again…” the same story just different people.

I explained about the speech therapy and she was surprised that we were having to go private and that we weren’t offered any through the NHS. We talked about their different personalities and how we felt that they were beginning to progress and show more signs of communicating, but at a slow pace.

The ‘assessment’ then began, I was told that it would be really in depth and to prepare for the appointment to take a while, but to be honest I was rather disappointed by the lack of depth. She had a case with games in and we sat the boys at the little table, Jude began with putting shapes in to the right places and Luca had to put pins into holes on a board (I have no idea of the correct term for this game!) Luca was much more interested in putting them in a cup than he was the board, although he did attempt to do a few. Jude did well and managed to get a couple of the shapes in after trial and error but both got easily bored.

They then swapped, Jude straight away understood what he had to do but I don’t feel like Luca got enough time with the shapes to give it a real go. After that apart from playing with a few toys I don’t feel as if she assessed them physically or interacted with them much after that. We went back to answering more questions and then doing their height, weight and checking over their bodies.

The conclusion of the appointment began with her saying “well my full assessment has been limited due to the lack of communication”…I’m sorry, did you miss the memo, as that’s the whole reason we’re here!? Don’t get me wrong she was a lovely Doctor, but her choice of phrase was completely wrong. She continued to talk about the fact that in some areas they are around a 12 month age but she can clearly see they are physically able for their age.

Where do we go from here? Well we are starting with blood tests which can be done ASAP, to see if its genetic. Then the twins will be getting a full week assessment to see various different therapists in 6 months time.

I purposely didn’t get my hopes up as I thought this would be the case, back to the waiting game, here we go again…TBC.