This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.
I feel your pain. As a retired RN, my career took every ounce of energy I could muster. Twenty years ago I had Luke who has severe autism. I worked up until he turned 18 and than had to quit because of a brain tumor. Life is not fair…But we must move forward. I am glad to see such good writing on wordpress. thank you.
And thank you for taking the time to share this x
Great Blog entry as ever, we are currently trying to navigate the German Education system with two Autistic children ,
Thanks. Good luck!
A very good post. Keep plugging away and a team approach certainly helps. I am very lucky that my wife has worked her way through all the referrals, chasing replies, chivying proffessionals and keeping at arms length intrusive/inappropriate inputs so i could focus on my job. You are right, it does get easier. I’ve just had a lovely day taking our 4 yr old with autism and his 9 yrs old brother out for a lovely walk and then a treat @ Burger King. He still gave us a busy night with a poo related episode in his bedroom though. Just about relaxed after a few glasses of wine and ready for tomorrow.It’s going to be a long journey.
A long journey, yes, but well worth the ride! Thanks for sharing.
We are at the end of the road you are travelling. Louise was diagnosed with severe autism back in 1995 and didn’t talk until she was 5. I have worked in a series of jobs from Matalan to supporting carers and it was great to be out of the house (being at home and broke is a lot worse than working I found out) but awful when Louise was poorly. She developed Crohn’s age 13. I didn’t have a strong idea of what I wanted to be when I got married – a mum I suppose. Tom has worked all his life and missed out on the major upheavals, meltdowns, parent’s evenings and hospital appointments. Louise didn’t mainstream her secondary education – she was expelled from her local special school for being too autistic?!? She ended up at a ASD boarding school in Dorset. I don’t go out to work now and neither does Tom. Both of our children have ASD so we spend our time supporting them. Not glamorous but it has its rewards… Our Louise has an interview to study animation at Lincoln University! If I could have seen this when she was 5 – I wouldn’t have believed it. I write now about my experiences in a fictionalised form. I don’t regret working, it paid for our holidays which the children really loved and for the trips to the cinema, play centres etc but I wish I’d had more sympathetic employers (the worst were our local council) and been able to stay longer than a few months x
Wow, well done Louise! Sarah, where can I find your writing?
I’ve got a book out on Kindle called There’s a Snake in my Boots – it’s a family saga with a twist as the family has a child with autism! I love reading but find it hard to find anything in common with the avarage family so I wrote a book for me and shared it with my friends. They all love it so I put it out there for other people to read.
Sorry I should also say that Louise did the front cover and the illustrations in the book – she is a brilliant artist and one to watch
Thank you very much for this one – I look forward to all your posts. Work life/ balance can be extremely hard to find. I have recently left my job of 10 years because I had had enough of the lack of support from my manager over issues like be expected to stay behind late for no pay and working extra hours at the drop of a hat. This week I have started a new job, again part time and have already been told it would be nice if I could work more days in the school holidays. I am dreading that conversation where I have to explain that my parents, whilst being totally amazing, at 70+ cannot physically manage my 6 1/2 yr old for more than a couple of 7 hour stretches a week. It’s hard to convince someone that you are 100 % committed to a job and being good at that job but ONLY FOR those 20 hrs a week. I too wonder if there will ever be a time that I will be able to get those qualifications/ promotions. Good luck and please keep writing.
I used to be a contender too :(. Daughter diagnosed 8 months ago and I am a special needs/resource teacher (which is another post) and currently in the pretender phase. Working extremely hard to be a contender again. This might be my aboriginal post EVER! Thanks
Damn it Favorite autocorrects to aboriginal because I add a ‘U’ because I am Canadian. 🙂
Was just googling ‘aboriginal’ for meanings I didn’t know! Thanks Shanell- I’ve just read, enjoyed and subscribed to your blog x
I just wanted to write and say how much I love your blog. I have three children and my oldest son has High Functioning Autisum. My youngest son has a rare genetic condition and we think he may also be on the spectrum. Life in our house is loud and mad and you never seem to ever get five minutes. Before I had my children I worked full time and had such a passion and desire to excel and achieve I always wanted to be the best at I what I did. Now I work part time and for me the dreams and job have come and gone. I spend a few hours a week getting paid for cleaning. It’s all I can manage now because we have so many medical appointments. I’m also fighting for my youngest child to be statemented and with the revolving door policy that seems to take place at his school. I never seem to have much time left. I put so much time into taking care of the children that I often wonder what happened to the old me. I’m now on an exciting journey of up’s and down’s with my children who I love dearly. Maybe one day I will find my back to my career and be able to manage both work and home life but for now I’m needed at home.
Keep up the good work on your blog. It often makes me smile and laugh.
Thank you. After saying things were looking up at work, I’m now off with Manflu and feeling pretty rotten! Your kind comments have cheered me up! You sound like a good mum- your children are lucky x
fantastic post. I have a 10 year old with ASD, and he is GREAT! Also two others…But it has taken a lot out of me (only beginning to realise this, as he was only diagnosed at 8 and I felt there was nothing wrong with him for a long time) and I am relieved not to be in paid employment atm. Tbh, life with ASD makes you doubt your professional skills in a strange eroding sort of way, as if somehow, somewhere you botched something or are botching something.
But I try not to think like that, and am just grateful at the moment not to be worrying about job as well as children. When I work outside home (mostly voluntary these days) I get this strange feeling that I am a different person than I am with son, not just A’s mum. And I think it makes me better at BEING A’s Mum to be someone else, occasionally. I am seeing ASD in fiction all the time now. Mr Darcy is a clearcut case…
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