Double Rainbow

Note from 2025: I’ve left this post as it was—written during a time of deep fatigue and quiet disappointment. It marked a pause, not a full stop. Nine years on, I’m revisiting this space with fresh purpose and a clearer sense of what connection can look like. If you’ve found your way here, welcome. Blogging hasn't really helped me to cope, and hasn't really achieved anything (for example, despite a direct mention in the NDCS Families magazine, I have not been contacted by any other parents if children who have both ASD and ANSD). Bye bye. I'll probably just leave the blog to fade away, I won't actively delete it. You never know.

For various reasons, I had to take Andrew into the office briefly this week. My work colleagues all know about Andrew's disabilities, but they had recently expressed a desire to see how he was growing. Knowing that I wouldn't be able to keep hold of him all the time, I used his disability buggy. They immediately asked if he could climb out of the buggy to play with them and, given the size of the group, I let him sit on the floor with them. He played quietly and intently for a few minutes, firstly with an ID badge on a lanyard (a favourite) and then with a discarded birthday balloon. Seemingly before anybody could blink, he got to his feet and ran halfway across the huge open plan office.  Chasing after him, my colleagues quickly learnt three things: 1 - he is not physically disabled and can run very fast 2 - he doesn't care where he runs, and 3 - shouting after him to "Stop!" doesn't work because he's deaf. Their reaction was mixed. Some thought it ...

... I'm sorry that I haven't written for a while. (Sorry to all my blog readers too!) Life hasn't been brilliant during the last five weeks, and it has taken its toll on us. Andrew has calmed down a great deal since the madness of early September, but he has not returned to the "happy autistic" that we once knew. We see the old Andrew sometimes; and we see the new, quick-to-anger, distressed-for-no-obvious-reason Andrew sometimes. The furniture is surviving, probably thanks to the wall and door padding in his room. Hard plastic toys are now carefully rationed, and are removed once he falls asleep so that he cannot throw them when he wakes. Family outings haven't really resumed. School asked us to collect him one lunchtime after a particularly bad morning. I then had a mini-meltdown of my own - if a specialist ASD school were unable to cope, how on earth were we, as untrained parents, meant to know what to do? It transpired they sent him home due to his rai...

This will have to be a quick post, with apologies for not blogging sooner. We are still going through the mill with littl'un. Things are not as bad as in the previous blog, but he is still only sleeping fitfully and is awake from 4-5am onwards - which means we are not getting much sleep either. Daytimes are much calmer. But we think we know the cause - teeth! At the end of week one, he lost his first baby tooth, and an adult tooth is coming through. He now has a second wobbler. Because he is so sensory seeking and is used to banging toys onto his teeth for input, we think he's distressed at the sensations he is now feeling.

This isn't going to be a nice post. My original plan was to write a wonderful post towards the end of last week, regaling all the fun that we had on holiday in North Wales - caravan, the Rhyl air show, climbing castle walls. But I didn't get any time last week, and haven't stopped to breathe until today. Thursday - after the first day of term - our son came home and had a meltdown. Not a tantrum, a full-scale meltdown. Screaming, throwing things, scratching himself, banging furniture, banging doors. Fine you may think - many autistic children do this, even the most placid ones. However this meltdown has lasted from Thursday afternoon until Wednesday morning, even through the nights, and he is still only calming down, not out of it completely. Six days from hell that we never want to go through again. Was it school? We doubt it, he loves school, has no problem with transitions, and in fact school reported that he wasn't misbehaving terribly. Nothing had changed a...

Most of the posts so far have revolved around our son's Autism, as this (coupled with learning delay) affects most of his behaviour. Time to talk about his deafness ... Andrew has Auditory Neuropathy Spectrum Disorder. It means that the mechanics of his ears work, but his brain doesn't get the message. The breakdown can lie with the hairs of the cochlea, with the auditory nerve, and/or with the receptive areas of the brain; and in Andrew's case, it looks like the latter. When he was still a baby - and we didn't really understand his hearing loss - it was positively useful that he was deaf. We could clean and hoover the house around him, and it wouldn't wake him from his baby sleep. We could have normal level conversations without having to 'shush' people. He could go to sleep anywhere and everywhere. As he's grown up, it's become increasingly apparent that our son does have some hearing. He finds reassurance in listening to music, and is rarel...

Last Saturday Andrew had a trial ride with our local Riding for the Disabled Association at Wythenshawe Park Stables. I first came across the RDA when they were the recipients of a Blue Peter appeal back in 1987. At the time I was a young girl myself whose horse riding experience was one pony-trekking break, so I was intrigued by a charity that helped others to ride. I put our son on the local waiting list nearby two years ago - given his diminutive size, we figure he'll either be a jockey or a Formula 1 driver (Daddy's preference!) Andrew rode Stitch, their smallest pony, led by instructor Shaun and assisted by two volunteers who I suspect are girls from the Pony Club. And other than getting bored when stood still to receive group instruction, he really enjoyed the experience! He's now on the list as a casual rider (when regulars cancel) and will hopefully get a permanent ride soon. Whilst we were playing horsey, Daddy was busy constructing the new garden sw...