autism

A bittersweet day

First a warning – please don’t read this post if you’re feeling down. Pop back tomorrow for something a bit more upbeat. If however you have an interest in living with autism please read on…

Today is Toby’s birthday. Normally children’s birthdays are a busy affair; a party, lots of presents, friends and lots of excitement on the part of the birthday boy or girl. Not so with Toby. Toby’s birthdays come and go without him being any the wiser. He gets to eat more cake than usual (something he definitely appreciates), he gets some new stuff and he does quite like balloons but other than that he’s completely unaware of the significance. I on the other hand find this day one of the most significant in my year. It’s probably the hardest day for me and one I never manage to journey without tears.

It’s impossible for me to get through this day without reflecting on what might have been had he not been autistic, what it would be like to have a normal family life and to be able to do normal family things all together. I mourn for his lost future – you never realise how much you take your children’s future for granted (that they will grow, find a life-partner, have kids of their own and live mostly happy, fulfilling lives) until it’s gone. Toby does have a future but it’s a world away from what I would wish for him. It’s uncertain and dependent upon others. I hope to always be around to care for Toby but I’m mindful of the fact that I may not be here to look after him for as long as he needs me.

His birthday is also a marker, a measure if you like of his progress and development. Autistic children have characteristically spikey developmental profiles. Which means that whilst he has the physical abilities of any child his age, in some areas such as speech, play and social interaction he still scores at a 12-18 month old level. Only time will tell whether he will ever develop speech. He is making progress with communication using a picture exchange method (more of that another day) and so there is a hope that his speech development is just grossly delayed.

I carry my sadness deep inside and most of the year I genuinely feel mostly cheerful. I feel very lucky to be able to appreciate beauty and joy in small things such as the changing seasons, a beautiful sky, the song of a blackbird, Amy’s laughter and Toby’s hugs. This is the one day a year when it spills over and I let it. You need one day a year of self-indulgent melancholy – it’s not good for the soul to bottle up any strong emotion. So forgive me my wallowing and please don’t be put off visiting here again. I don’t usually talk about how I feel like this but somehow it seems easier and a bit theraputic to write it down, a bit like making a paper boat and launching your troubles down a river on it – or maybe it’s because the delete key is only a click away and so I can erase all this if I chicken out!

As Amy will tell you, one of my favourite sayings is “you have a choice in life…” something which I strongly believe. Today I am choosing to allow myself to feel sad, tomorrow I will be choosing to feel happy. So on a happy note here are some pics of Toby enjoying his summer…

autism · crafts & knitting

knitting in funny places!

One of the things about having an autistic child is that you end up doing things at the oddest times. Part of the reason that I started making small items rather than people-sized jumpers is that when Toby is around I can usually only get a few rows done at any one time. He is very demanding and constantly pulls both Huw and myself around the house. I carry my knitting bag with me (usually with an odd assortment of things inside – I always look in there when I can’t find the T.V. remote control) and end up being a knitting nomad. I knit in the bathroom (when he’s having his bath I usually manage to knit the bottom of a cake or a sleeve for a rabbit jumper),ย  I knit sitting on his bedroom floor, halfway up the stairs, on the wall in the garden, in the playhouse halfway up the climbing frame, in fact the only place I draw the line at is the loo – I do have some limits!

I love Baby Einstein videos because Toby adores them and so for the 28 minutes of running time I’m usually free to sit and can knit up a rabbit head. Autistic children often have difficulty making the distinction between day and night and Toby is no exception. Most nights he’s awake for at least an hour – sometimes as long as 4! This is all good knitting time as he’s tired and content to stack his pyramid or watch videos until the need for sleep overcomes him. I often get my biggest chunk of uninterrupted knitting time in the wee small hours – this is why knitting keeps me sane – it distracts me from focusing too deeply on the fact I’d much rather be in my bed!

Have taken some pics of jumpers that I made for the kids when Toby was still little – just to prove I can knit big!

autism · crafts & knitting

autism insights and knitted stockings

Poor old Toby’s been a bit under the weather this weekend. I think it’s just a cold but it’s not always that easy to tell. Sometimes it’s hard to tell even if he is unwell and even when you establish that he is, it’s usually impossible to say for certain whether he has a headache, earache, sore throat or all of the above because he just can’t tell me where it hurts. There is a theory about autism known as mindblindness which sums all this up pretty well: autistic people assume that everyone knows what they are thinking so they don’t understand the need to communicate that they’re hungry, cold, in pain etc. Toby has never pointed at anything (a common autistic trait) nor has he ever drawn my attention to anything he is interested in. It is exactly like he just assumes I already know. One time I found him just standing in his room, all tangled up with the cord on his roman blind – he’d been upstairs for 20 minutes and I’d assumed he was playing quietly – goodness knows how long he’d been stuck but the point is he didn’t utter a sound to get my attention, just stood there waiting for me. I felt like such a bad mummy and needless to say I don’t really let him out of my sight anymore. Anyway, after 3 nights of little sleep because he was so snuffly, he’s seeming a little better today and he’s gone back to school.

I have written up the pattern for the stockings – hopefully in some kind of understandable knitting jargon. I’ve added some photos to show certain steps and will be improving on these and adding some pattern design suggestions shortly. If you are feeling adventurous and fancy giving it a go please drop me a note and let me know how you got on (this is my first foray into pattern writing – I usually work off scribbled notes and memory!) Similarly if you try it and get stuck just contact me and I’ll try to help. Good luck!!!

Pattern is here on Ravelry: Mini Christmas Stocking Ornaments