We are lucky

So Elsa and I went to see Jude yesterday and to take him out for lunch.

It went amazingly well, no issues with him leaving the house, no real anxiety and a fun time had by all. A few hours later, I returned a very happy boy back to his beloved house with his lovely support staff and his cosy bedroom, a few treats and a huge kiss and a hug and off we went.

 

In a nutshell that’s how our visit went. I had mild worries the whole time we were out that it would all suddenly take a turn for the worst. Jude would freak out and throw his plate across the restaurant (as he did at school this week), that he’d have a melt down and I’d have to try and carry him back out to the car. In reality, I know I couldn’t now do this alone so I kept watching the waiting staff and wondered who would possibly be the best ally in my (hypothetical) Jude carrying moment of need. But it didn’t happen. I’m attuned to mentally cater for every possible situation these days, it’s pretty funny really. I’m sure all SEN parents are the same!  Yesterday, Jude was in a really good place and even ate his lunch without insisting on having a take away box (this is a first in AGES!)

 

We decided not to bring Jude home for the weekend as he’s had a very up and down week.  I feel quite bad about having these choices. Like it should be me dealing with Jude’s challenges and not the house support team. Why should they be the ones being kicked and why should they have to be the one’s learning what calms Jude in his moments of need? Isn’t that my job? Oh no, I couldn’t cope so sent him to residential school. At times, I feel like a bit of a failure when I turn up to visit Jude and wonder what everyone makes of me. I think in the past it’s just been drummed into me to always think the worst of my abilities and it’s really hard to turn that around.

 

I regularly read tales from exhausted parents in Facebook groups and hear from people who email me about their struggles and emotional deteriorations because life is such a nightmare with their child at home and I feel bad because I’m not sure I’m really one of them anymore. We have been given this wonderful opportunity for Jude to attend a school that really cares, to be looked after 24/7 by staff he adores and sleep each night in a bedroom that is cosy and warm. He’s content, life is now as rosy as rosy gets for a Jude. And similarly, we now live at home with the girls and experience life like “normal” people!

 

But I do still live their life. It’s funny because for the first week of Jude being at residential school I was ecstatic. I wanted to do all the things we couldn’t previously manage; have people over, go out with the girls, sit down with a cup of tea! And now, a month or so on and Jude is constantly on my mind. It doesn’t help that I know he’s been pretty awful at times this week for his house support staff and I feel like I should be able to magic his anxiety away but obviously can’t.

 

I sound like I’m whinging as normal but I’m not, I just struggle to process all the thoughts and feelings I have as a mother with a child not living at home and who struggles very much with day to day life.

 

We are one of the lucky ones; one of the tiny percentage of families with a special needs child who receive the support they need and I thank my lucky stars each day that I can breath and that that constant knot of stress isn’t squeezing tighter and tighter at my chest any more. I worry all the time but that’s normal for any parent I guess. I think because I don’t understand how Jude thinks, it makes it all the harder. Why do certain situations freak him out? Is he happy? I doubt I’ll ever know. Wouldn’t it be amazing to read a child like Jude’s mind, just for one day?

 

 

Anyway, I took some pictures from our lunch yesterday. It was really lovely. Even Elsa enjoyed seeing Jude and when I realised I’d forgotten to get a parking ticket for the carpark so left them for two minutes, I returned to see them chatting and laughing about something which was so beautiful. I stood back for a minute just to watch and reflect. THIS is why we chose Jude’s school because now we have fantastic quality time with Jude rather than that vacuous, almost antagonistic constant that we were previously living in. I need to get over the guilt…

 

Activity book arrived! Elsa’s first statement was “ooooh coding!” She loves a bit of maths fun…

 

 

Still coding…even Jude thinks she’s weird

 

 

“Sit next to each other and smile guys!” Such love!

 

 

Jude playing his windscreen wiper game!

 

 

Jude’s dinner arrived and there was that moment of dread when I saw that they had “garnished” it with green stuff. What are you doing to me!!!?  I waited for his reaction but it never arrived and amazingly, he ate it. Even without picking the green bits off.

 

Elsa had sweetcorn in her dinner which is one of the things Jude is phobic about. She had one tiny bit left on her plate which Jude kept flicking his eyes towards and nervously asking her to “eat that last one Elsa.” This was her response.

 

 

We chose possibly the crappest place in the world for vegetarians but they seemed ok with it in the end. Elsa wasn’t very impressed with the menu but was happy to just go with it as Jude had chosen something he loves (and rarely gets given!) and once he’s sat and appears content, I’m reluctant to rock the boat…

 

 

 

 

 

 

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