I’m new to the forum… I live in North Ayrshire with my wonderful husband, and 19-month-old boy, Arizona
Arizona is profoundly physically disabled. He has multiple brain abnormalities and as a result, global developmental delay, central hypo- and hypertonia. So he’s not sitting up yet, crawling, standing etc. He relies on us for absolutely everything and because of his neurological differences, he doesn’t sleep much more than 4 hours per night. My husband cares for him full-time while I work full-time (from home), and we are perpetually exhausted/burned out. But Arizona is a wonderful, gorgeous, happy soul - and we are so grateful to have him.
That doesn’t mean it isn’t bl**dy tough, though! Are there any other special needs parents in North Ayrshire? Would love to connect with you and provide each other with some support - especially while COVID has it all in our clutches.
Outside of being a carer, for me - Deborah - life is made more fun by art, red wine, music, movies, the outdoors, my dog, and laughing myself silly with my amazing husband.
Look forward to hearing from others, and sending you all lots of sunshine.
Re finding other families - your local social services disability team should know what groups are available. They may also be able to offer him a place in a nursery or with a childminder who has special needs experience, which would give you both a short break.
You could also look at the Contact a family website; https://contact.org.uk - they have a section for specifically for Scotland.
Groups provide parents of disabled children with essential practical and emotional support. For details of local groups in Scotland or to receive our latest support group e-bulletin call us on 07458046071.
Is Arizona receiving physio and speech therapy to help him develop? Do you have exercises to do with him at home?