Long, long ago, before I was 'Special Needs Mum', I had a great career as a television journalist and news reader. I loved it - the job, the lifestyle, the image, everything. My last job was reading the bulletins that went out on NBC/CNBC Europe - I was famous in Sarajevo, for God's sake! (UK, not so much!) I may have gone much further if I had stuck with it.
So what happened? Why would I give all that up? The answer, my friends, came in the form of two very demanding sons, born close together and from whom I could not be parted.
I read the other day in the Sunday Times magazine about Natasha Kaplinsky combining motherhood with her high-flying career and not getting much sleep, despite the inevitable nanny/helper. Her career was much more high-flying than my own when I had a baby, but I could have gone down that route, getting a nanny who would help take the strain while I continued gracing the TV screens of far-flung places in Europe and receiving sticky fan mail written in green ink.
My baby however, was not, in retrospect, what you'd call average. He could hold his head up almost from birth. He would lie there awake at the most unkind hour of the night, his blue eyes glinting in the reflected streetlight from outside our Clapham flat. He didn't sleep through the night for eight months. When he cried, it was loud enough to wake the dead. He crawled early and walked at 9 1/2 months; he was always on the go. We thought he might actually be an alien.
He hated being bathed, dressed, put in his pushchair, changed, put down. He liked being fed and being entertained. As inexperienced parents we thought that perhaps this is what all babies were like. Early trips to the baby gym convinced us otherwise. There was nothing ordinary about him; he was super-bright and hyperactive and it was clear to my husband and I that we could not leave him in the care of anyone else. This meant I could not go back to work immediately.
By the time he was ten months old, I was expecting our second child so again, going back to work was unfeasible.
Our second son was born with a clicky hip, needing a splint and extra care. From the time he was six weeks old, our eldest would walk by him and smack him on the head. Every time. By now, our twenty month old could do jigsaws meant for five year olds and make complicated duplo models. We were convinced he was a genius!
When our youngest began to have Reflex Anoxic Seizures just after a year old (see www.stars.org.uk for help with this condition) it was clear again that a return to work was not on the cards. He could have up to three seizures in one day, usually triggered by his brother being mean to him.
I began to do voluntary work for the charity STARS, using my journalistic knowledge to help with their newsletters and press releases. This turned into helping them with a big heart rhythm campaign (see www.aaaw.org.uk) and then on to learning about how to update their web site.
Over the years this has developed into my own business at www.tirraoro.com. I work from home because now that both my boys have been diagnosed with Asperger Syndrome and we know how they need to be helped, I couldn't leave them in after school care or regular holiday play schemes.
Too many years have passed now for me to go back to where I was in TV and I'm too old and have too many responsibilities to compete with the young, thrusting twenty-somethings who can work all the hours they're asked to for not-too-great amounts of money. I'm not sure it would be as much fun either, as in the seat-of-the-pants days when I worked for the newly-created Meridian TV or with mad Croats and Australians in WTN's foreign TV News Agency, although maybe that's just the rose-tinted memory glasses.
I read with interest all the furious stay-at-home vs working mother debates and how one is better than the other or not, but for me, the debate is much more complicated than that. I do what web-sites, PR & design work I can from home for small businesses and charities; I've written two, as yet, unpublished novels; I've passed an OU course in Social Science and I've successfully researched and secured two statements of special needs for my sons. And then there's this blog, designed to help and entertain others like me.
I feel guilty for not bringing in as much money as I could if I worked full-time and sometimes I feel a little regretful at leaving a career I loved, especially when I see people I know still doing it. But I take comfort from knowing that if I had left my children to go back to my career, it would have been almost impossible to spot that they had complex and underlying special needs, nor done as much as I have to get them the help they need. Life is stressful enough as it is; with a full-time job as well, I would have been booking my stay in The Priory.
I know there are mothers of children with SEN who do work full time and their children have not missed out, but personally, I would have found it very difficult to do both, at the level I wanted without a nanny, which I also didn't want. Having a job like I had meant working shifts, long hours, being called in when a big news event broke and not being able to say no without it dentingyour career prospects. I loved my job so much I would have found it impossible to give as much to both it and to my children without something going pear-shaped. If someone reading this does both those things with autistic children and without considerable support, then hats off to you, I'd love to know how you do it so I can write about you with admiration!
But I'm sure I am not alone. How much talent is going to waste because mothers cannot return to the hours they used to do or find a job that will give them the flexibility they need to use their talents to the full? Maybe I should start a website for people like me who are good at what they do but can only work a few hours a day. If there is already one out there - let me know!
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I placed my Special Needs Son first too. Its the right thing to do. Your Boys are benifiting from you not going back to work yet. Putting Family first rather than money and oneself are the correct values. Yes the world is missing our talents , but our children need us more. Well done you!
I am in the same situation, my son was exactly as you described when he was a baby and beyond, I felt it was because I was not a very good mother. He was finally diagnosed last year when he was nearly 9 with ADHD and Autism. I was going to return to work but no one other than me could stop him crying, he needed constant attention day and night or he would screem blue murder. He needed less sleep than we did. I would have been too tired to hold down a job anyway! My old employer offered me a fantastic opportunity to train as a defence solicitor under him because he thought I had the skills but I had to turn him down because my son needed me more.
Only last month my Sister in Law (who I haddn’t seen for 10 years) and my mother in law spent a good hour attacking me verbally for my not working. I took it because my son was in the room and I couldn’t give my real reasons for not returning for work in front of him. None of our family understand that our kids need a certain level of care and familiarity to be happy and settled. Also the whole diagnosis and statementing prosess and making sure school do what they are supposed to seems to be a full time job in its self! I wouldn’t change it for the world most of the time but some days I do wish for the old me with a fulfilling job and my own identity rather than the stay at home mum of 3 – untill hometime. xx
I too gave up work for my two sons that have special needs! I sometimes yearn for the other life but can’t leave the boys with anyone ..only me!They have a heady mix of disabilities between them and every day is a different day! Its a full time job +++++ looking after them! but I love them both with all my heart!
Hi Amanda, yes I understand this. I don’t think outsiders recognise the mental and emotional pain that we go through as well!
I am a divorced parent with 2 S.N. children, one with Aspergers and one with a rare genetic condition. I was working part time, term time up until 2 years ago, I was taking my children to school and picking them up, but even those short days became too much for me, and I collapsed and ended up in hospital overnight. I am now entering my third year of Carers leave, and I still can’t see when I can return. My son has been out of school for 6 months and is starting (after a long battle) a specialist school on Friday, but as you know nothing is static with our children, and it is tempting to think of returning to work during a “quiet spell” only to be thankful you didn’t a couple of weeks later when all hell is breaking loose again!
Hi Cristina, thanks for commenting and I unrest and your situation only too well. I began a demanding role at the start of last year and thought I could do it all, only to fall ill and be diagnosed with EDS. I’m writing this from bed having had another day in excruciating pain. My boys’ grandma is bring them home any minute.
They too can seem to be fine but if you look away to do your own thing… You’ll soon wish you hadn’t!
So get this. Like you, I was the only one who could care for my son and so gave up any thought about returning to my PA job. Sometimes I wonder how far I would have got as opportunities were coming my way to train for more senior positions. But with an autistic son and an aspergers daughter and no end of challenges regarding their health and education there was no choice but to stay at home and care for them. I did have a go at working evenings when they were younger but I was so close to becoming ill that I had to give it up. Now a few years on I do a few hours of sessional work a week in adult ed whilst my OH and mum take over. This is hardly a career move but its nice to have a bit of a break particularly as my children are rarely in school these days. Sometimes though even this little job can cause havoc particularly when we’re having a difficult spell. At times like this I’m left wondering why I bother but then when things settle I’m pleased to have something for me.