I’m bobbing about in rather murky waters in this aftermath to Christmas. As usual, the holiday went by in a mass of stress and joyful moments carefully captured in my memory, but with little time to spend on such self indulgent pursuits as blogging!
The new year has swept in with a mass of crises needing my full attention to resolve and so, once again, I am pushed for time to spend sharing those thoughts and experiences that I would love to. I have two hopes here: that my mind be a little clarified by the process of writing, and that maybe someone who stumbles upon my Simple Tangles will find something here of value. Of course, none of this can happen if I do not write!
I have decided to sacrifice the “pretty” for the time being in favour of content. So I shall endeavour to write whenever I can, without worrying about finding appropriate and pretty photographs!
My lovely sister gave me two wonderful gifts this Christmas – a little diary full of inspiring prompts which I hope to use to fill these pages; and some beautiful knitting needles and yarn. So if I’m not too tired, I shall quickly post another little bit with some knitting I’ve kept my fingers busy with!
Tonight, though, I need a little more space than Facebook offers me, and I feel some need to keep those of you closest to me in the loop as to where life is pushing me! It’s a bit of a tornado at the moment, with an awful lot going on in many different directions. Today is pretty typical:
So! Today started off far more auspiciously than most do. Sweet Girl was in good spirits about going to school, having had a day off yesterday for an occupational therapy appointment. (She was diagnosed as having sensory processing problems, which will now be addressed – a good appointment, if draining.) Little Man is already tired at the beginning of term and was harder to get up, but off we went, leaving home at 8am. Tom zoomed ahead in his power chair as usual while Kesia and I followed on foot.
Upon arriving,Sweet Girl remembered that the seating plan of the class had changed and fell apart. Physically, she huddled on the floor under a table, shaking. No words. The teacher was called and came in very efficiently, and told her that she had not moved, and that she would be sitting next to a couple of girls that are well-chosen. Unfortunately, Sweet Girl’s brain translated “efficient” as “angry”, and the tears started flowing as the shaking got worse. I was able to calm her down remarkably quickly and left her. The teacher and I then had a chat. How difficult it is to explain the world of Asgerger’s, anxiety and sensory processing disorder to someone that has no real experience of it. Couple all that with high intelligence, and most people are flummoxed. Unsurprisingly, talk often turns to “are you sure she is not showing you what you want to see?”… and questions of this kind. It was a distressing conversation. I don’t yet know what the next few weeks will show.
I managed to get home by half past nine, rather too shaky for breakfast. Lucky, really, since I needed to get back to school by ten to pick up both Sweet Girl and Little Man for Riding. The timing is not ideal, but the benefit that each of them gleans from this is difficult to express in words. Tom’s muscle tone has improved beyond belief, as has his balance and confidence. He exudes happiness and self esteem after his lessons. Kesia is finally able to relax when on her pony. Her physical ability is very good, but the benefit is emotional for her. I’ve just read a few articles on the benefits of riding for children like her, and they are huge. I hope the school continue to allow the children to be out of school for this…
We got back to school for lunchtime, and Kesia came home with me. A quick lunch with a little television (Sweet Girl really enjoys programs such as Edwardian Farm, so we are learning while we eat!), and we then settled down to work. She was able to do her literacy work (yay! – a rare occurrence, and far more likely to happen after riding than after a morning at school) while I did some biology. Oh yes, I have started studying and am determined to manage 5 hours a week. Yesterday I joyfully built a couple of molecules of glucose with matchsticks and plasticine!
A couple of fairly lengthy phone calls interrupted me while I was teaching Sweet Girl to do long division, but I was at least able to touch base with Tom’s community nurse and make a call to a potential secondary school for him (highly unlikely, but I have to explore every possibility).
Quick, quick, get those coats and shoes back on, it’s time to go and pick Little Man up. Remember to post a letter to Eldest on the way! Bakery on the way back – Little Man had his usual marshmallow cone while Sweet Girl experimented with a florentine – and some reading when we got home in spite of Tom’s tiredness and grump.
Put some eggs on to boil for dippy eggs and soldiers, then the phone rings…
My darling boy, Eldest, in tears. Sobs, angry diatribe, contradiction after indictment after railing and ranting… and more sobs… “Please take me home, Mummy, please, I can’t bear it any more”
Oh my. That heart of mine that’s so patched up, is breaking in completely new places.
It took me over an hour to fix it. Needless to say, dippy eggs became hard boiled eggs, and I’m grateful that Darling Man arrived early enough to put some kind of dinner together for the Littles.
I needed to calm Eldest, if only a little. Try and make sense of his garbled version of events. Eventually talk to staff, and once again try to piece together the reality of the situation. They were lovely, and quickly realised (as I had) that the message they needed to get across to Zack had been very poorly phrased and the ensuing confusion had resulted in a fairly major reaction. Back to Eldest on the phone to reassure him and put the world back together for him. Then a little humour to bring him back to the world…
I struggle to convey the “bigness” of that hour. My body was clear about it – shaking, shivering, crying but trying not to. My mind was racing to try and find the solution – because there usually is a solution and I have to trust that I will find one. It was very difficult to take Eldest back to school this week – he was very distressed by changes that were happening. For this to happen so soon is hard for me. I am quite sure that school will manage things well, but I also need to be present for him in a way that I have not been since he started there (because it’s been important for me to be in the background. The change of gear is badly timed, and takes getting used to!).
Today wouldn’t be quite right without being rounded off by a panic attack from Sweet Girl…
Darling Man has gone up for a shower and we’re both hoping for an early night.
Tomorrow?
- School for Kesia
- Hydrotherapy for Tom
- School for Tom
- Psychotherapy for me (thank goodness!)
- Pick up Kesia
- Therapy for Kesia
- Phone call to try and find riding outside school time
- Phone call to OT regarding Sweet Girl
- Biology
- School pick up for Tom
- Tea for the kids
- Swimming for Kesia
And the weekend? Ghastly paperwork to try and sort Tom’s schooling out. The deadline is next Friday, so I need a few hours without interruption. I’m so grateful that Tom is at Cherry Trees on Sunday! If I get a little time, I’ll put a few links in…
Simple Tangles 