Rock pool therapy

Clammy wet sand underfoot, blustery salty air, the roar of the ocean and a warm blanket of sunlight seeping through the early morning sea mist. Hallmarks of a North Cornish beach in Spring. Comforting and invigorating, the seaside is a wonderful tonic. All senses sated, most of us come away from a day at the beach feeling calmer, happier, centred. 

For Orange, a North Cornish beach is about as close to perfect sensory therapy as it gets. Mashing a handful of wet sand granules between his little fingers, the constant roll and rumble of the waves on the shoreline ringing in his ears, the visual spectacle of marbled rock formations and steep, dark cliffs all around. He was particularly taken with this little rock pool. We splished and splashed in the warm sea water for at least half an hour. For a boy who cannot bear the feeling of anything at all on his feet, his willingness to let his little toes dangle in the water and dig into the wet sand was a sight to behold.

Calm and happy, it was wonderful to see him so at ease with himself. Orange often struggles to identify with where bits of his body are in space. This is a very hard concept to understand if you don’t suffer from it yourself, but that grounded feeling we get from gravity just isn’t the same for Orange. He feels unsteady, unsure of where his limbs are in relation to the rest of himself. But on the beach that day, toes squirming about in the salt water, bottom firmly planted on a rock, he felt steadier, with a stillness and confidence I haven’t seen anywhere else.

There isn’t much documented about the power of ‘beach therapy’ but given that it feels so darn good to be on one, I’m going to spend as much time as I can with the kids doing just what you see us doing here in this photos. Sitting, splashing, singing, squelching, sunbathing.

Generations of my family have played on this particular beach as young children. As fate would have it, it is one of the few beaches in the South West that you can actually just drive straight onto, park on the sand and walk across miles of flat, firm sand. Unlike many places, this beach will be accessible to Orange his whole life, whether he is in a buggy, walking frame or a wheelchair, I will be able to bring him here as often as we like. This is one of Orange’s therapies that we can all benefit from. It often feels like very hard work indeed, helping Orange with his daily needs, but this? I feel lucky to have an excuse to make ‘beach therapy’ a regular part of our lives. The Beep is pretty happy about it too…

 

Food unglorious food

Don’t get me wrong, Orange loves a good meal. Just like his parents 😉 But I often get asked by The Professionals how his feeding is going. And I don’t really know what to say.

When we first started weaning Orange, he enjoyed chewing on a banana and was very happy being spoonfed all manner of mashed vegetables, fruit (and quite a few Ella’s Kitchen pouches when I just couldn’t be bothered).

But it was always different feeding Orange than it had been with The Beep. It still is. He likes to hold a spoon while I feed him and, if I load it for him, he will usually get it somewhere in the direction of his mouth. But he’s very far indeed from feeding himself. He should be doing this by now but he’s just not bothered.

Finger food? Well. That might as well just not be there as far as he’s concerned. His little hand might, on a good day, reach out for something I’m holding, but it’s usually soon lost and forgotten, squashed and warm in the depths of his high chair.

I feel under huge pressure to get Orange feeding himself. Every mealtime my heart sinks as he just sits there like a baby bird opening and closing his mouth, waiting for me to spoon in pasta or casserole. Or not, as the case may be. He’s been rather difficult recently as his tastes have started to develop. I need to up my game on the cooking front. He’s a discerning diner, is Orange.

It’s extra hard, given he can still barely sit in a high chair and he struggles to chew and swallow. If I rush him even just a little too much, he chokes and vomits.

I know I should feel grateful, at this point, that he doesn’t need to be tube fed. There is always that possibility in his future. But instead I spend most mealtimes wishing he’s just participate a little bit more, or that I could hand him a piece of toast and he’d plough on in. It’s heartbreaking to watch him just dropping bits of food down next to him and, seemingly, not caring. The less he responds to finger food, the less opportunity I give him to get the hang of it. I just can’t bear watching him fail. Again.

I have a new plan, which is to offer him some finger food with one of his meals per day, for the next two weeks, without fail, and just to not care what he does with it. It is 12.05. Caribbean Chicken then Orange, followed by, er, corn snacks. Gotta start somewhere…

So we made an offer…

Friday was an interesting day indeed. To Cornwall and back in one day, a total of 10 hours driving with an Orange in the back. Eating, drinking and napping on the run. He was so good. Not even a hint of grizzle until we were an hour away from home on our return journey. Eating dinner propped up in his car seat in a rank Little Chef on the A303 was a particular lowlight. But he took it all in his stride.

It was worth the effort. House number one that we saw was absolute heaven. We offered, it was accepted, all on the drive home.

Oh how I so desperately hope that this all goes to plan. Orange needs to be in Cornwall. We need to be in Cornwall. Everything crossed please…

Orange turns one and Cornwall is one step closer

We have just returned from a week’s househunting in Cornwall. It was pretty intense. We saw a lot of houses and rode a bit of an emotional rollercoaster as we could see our dream within touching distance but still a long journey away. We have two more houses to see at the end of this week (cue an emergency trip there and back in a day, which I am dreading) and then I think we will make an offer on something. I don’t want to jinx it all by talking about it too much. So watch this space.

Orange had his first birthday while we were down there. It was a lovely day, mostly enjoyed by his sister who opened all his presents and ate all his cake. Orange was none the wiser but has done some absolutely brilliant play with two of the toys he got. One is a brightly coloured stacking ring set, which he got stuck in with straight away, taking each ring off the stack individually and waving them about, with no coaching from mummy . He also got a percussion play mat thing which he has been doing tummy time on to strengthen his arms. He has started actually pushing weight through his hands. This is nothing short of a miracle. Honestly, the tiniest things for him are huge.

And… I have come across the most wonderful guide written by Cornwall County Council for families of disabled children. It has absolutely every piece of information I could ever need for sorting out Orange’s community care, therapies and future schooling. I am now totally confident in making things work for him when we move west. It can’t come soon enough. When it all gets too much, this is where I will go…

 

Diet and child development

I have been thinking a lot of late about the effect of diet on child development, in particular about what specific nutrients can do for the brain. We all grew up knowing that sunset yellow food colouring = hellish behavioural meltdown and fish = brain food. It’s the good oils you see.

And today I was reminded of this subject again when reading this story on BBC about a family whose two sons are affected by a rare genetic disorder that attacks the brain and nervous system, called adrenoleukodystrophy.  This condition was made famous by the film Lorenzo’s Oil about sufferer Lorenzo Odone whose symptoms were eased by taking a combination of rapeseed and olive oils daily.

Because Orange is so small for his age, and allergic to dairy, I always add either rapeseed or olive oil to every meal that he eats. And I have a strange sort of gut instinct that these good fats will also help his brain development in some way. I am trying to find out more about it. Orange has something called delayed myelination which basically means that the fatty sheaths in his brain pathways aren’t quite what they should be and as a result they struggle to send messages the right way. Everything takes a bit longer.

What I really want to know is whether I can help Orange in some way with his myelin development, and general cognitive abilities via his diet.  There is much reading to be done. I am pretty sure there isn’t a dietitian in the land who has the knowledge I need. I am going to try and seek out a progressive medical school somehow that may be doing, or want to do, a study. Orange is a good little eater and I am sure will be a very willing little guinea pig.