I’m a mum and carer to my lovely sunny lad who is 16 this year. It’s been a tough journey but very rewarding in all. Oddly, before I had my son who has a diagnosis of autism and learning delay I was volunteering at a unit with children with autism. I left when I got pregnant. In addition to caring for my son I’ve also volunteered in drama groups with adults with learning delay and even ran a group myself briefly. I now concentrate solely on my sons needs and I view this as my job. It’s a delightful job as he’s a warm, funny and sunny lad!
Welcome to the forum and thanks for introducing yourself.We hope that you will find useful info and a chance to comment and ask questions, share experiences and ideas with others on this forum.
Hope you have a good day with your son today.He sounds like a lovely young man.
It sounds as if you’ve got lots of stories you could tell about your journey. I hope to hear some of them. Has there been anything along the journey which has made your son’s life and/or your own easier? Has there been any particular support which has been important or good?
Looking forward to hearing more!
Hi, the biggest ‘help’ hadn’t been anything physical. It has been a internal recognition of the fact that when raising a child with multiple disabilities you have to go with the flow and enjoy what happens. You cannot be a prescriptive, uptight parent. Even though routine and structure are desirable the ability to have an immediate back up plan, or two - or three is vital!
I also try to learn from my child. Being a parent of a loving but challenged young man allows for many opportunities for personal growth. It will stretch you like a pot of gloop! (If you let it). At the end of each challenge you’re a much nicer person if you’ve dealt with the situation to the best of your ability (or behond) and with as much love as you can apply.
Having someone (even one person like a relative or a person you meet on a forum or a group etc) that you can share your breakthroughs and joys with also helps. If there is no person like that take photos and keep a photo diary (too exhausted for anything else!) Your diary will show you how much progress you are making and also remind you of all the effort you have put in over the past year and eventually years. It’s important to reward yourself for effort.
Hi, I recognise that having to go with the flow, you describe.I began to realise my behaviours affected whether the family had a good day or not and that it is easier to control your own reactions to challenges, than other peoples’ reactions.
I think that learning from your child is the essence of person-centred thinking.We have so much to learn from our children .I think the importance of having a network of support is so vital to your own well-being - there’s huge support to be had from other families going through similar things. I like the idea of capturing photo diaries when you have too little time to log what progress you are making.