In my blog post where I shared the reasons why I left teaching and the impact of that decision, I explained how my income and self esteem are directly related and that I have always loved working both for my finances and my sanity.
My fiance Andrew laughs that even if we won the lottery I would find some sort of project to keep me busy and that’s very true. I enjoy the routine of working and the related income satisfies those vindictive voices in my head which tell me I am only as good as my latest pay cheque. I need to be busy.
On the day that life changed forever, my ex husband and I received the news that our son Harry had been born with a rare cranio facial condition (a diagnosis of autism also followed a couple of years later) I knew my life as a mother would never be the one I had imagined but I couldn’t have envisaged the impact on my career at that time.
Having a child with additional needs affects absolutely every aspect of the person you are and the life you live. In many ways, this is a positive impact but working and earning an income for you and your family has to be one of the biggest challenges for me and for many other parents whose children need extra care and attention. When I asked some other SEND (special educational needs and disability) parents if they struggled to work their answers broadly fell into these seven areas.
Appointments & Meetings
In September alone, I am taking Harry to Liverpool three times. Each visit is a full day out of school for him and a day away from any job I may have. I also need to meet with Occupational Health and the Educational Psychologist at some point. If you were my employer, how understanding would you be in giving me almost a week off work in one month for Harry’s appointments?
Therapies & Medical needs
I am fortunate that Harry doesn’t require daily therapies or medical intervention but many children have equipment that needs monitoring, exercises that must be performed for their health (such as physio stretches) and diets that must be carefully prepared. Parents are naturally the first people to support their child and will inevitably become the expert in everything that is required. Other professionals can help of course but no one professional will do it all and so the emotional, practical and time implications of these aspects of life make employment for parents incredibly difficult.
Unsuitable childcare provision.
This is a huge issue for parents of children with additional needs. Many child care providers are simply not trained or equipt to deal with the additional needs of children who require more than standard care. For Harry, he is now too old for the before and after school provision that my boys attended for over 8 years. This means that he is picked up from home around 8.20am and dropped back off again at 4pm. Any employment I have would have to be between these hours (on the days when hes not got appointments etc) which rules out the primary school teaching role that I held for many years as my hours at school were 7.45 – 4.45pm. The two days a week I do teach in high school works because I don’t have a form to register in the mornings and my casual contract means I am not obliged to stay late for training and meetings. Its a middle ground for me and its more than most parents have so I am grateful for that.
Own health considerations
I left teaching when my blood pressure rose so high that my doctor thought I may have had a stroke! Needing to work and earn money may be important to me but being healthy and around for my boys is the priority and so I had to make the changes I have written about before. Other parents have agreed that their duty to self care as a parent has to take priority over their need or desire to work.
Lorna said “I worked as a nurse for 15 years. I lost my nursing registration in March of this year. We simply have too many appointments for me to be able to work. The other factor was if I had pulled my back at work I would have been absolutely stuffed at home as we still don’t have hoists etc to lift my daughter. I spend my time now as a disability rights campaigner instead.
Donna said ” I used to be a medical secretary which has really helped with liaising with professionals and having some understanding of how the system works. We had always planned that I would give up work when I had Nathan because of my own cardiac condition. I did do a small amount of hours between the kids but haven’t formally worked since having Cerys. I have done various volunteering activities, but I get tired easily so have to manage that to enable me to be fit enough for the kids. I need to be available if any of the carers are unavailable.
Time off school
Aside from appointment, meetings and therapies children with additional needs can also require more time off school than typical children through related poor health or operations. My friend Miriam’s son Issac who has a range of additional needs has recently also been diagnosed with epilepsy and has had to have time off school as his daily seizures have meant its not safe for him to be at school and they have also left him exhausted. He needs his mum and she needs to know that he’s ok. Work is just not an option.
There are also behavioural issues that may occur in school related to conditions which schools cannot or will not support. This can mean meetings at short notice at best and temporary exclusions for children at worst. Kerry has touched on this in her post defending her position as a stay at home mum.
Few of the parents I spoke with had ever planned to work from home or be stay at home parents and the personal impact of this can be enormous. Time at home can lead to boredom, a loss of self and purpose, loneliness, depression and financial pressures.
However, it can also be a blessing in many ways. Staying at or working from home provides the flexibility that is essential in a life like ours. It also means of course that you are available for the fun things too like assemblies and school events. There is more time and energy for siblings who are the unsung heroes of our stories and can often get overlooked. It means that you do have time that you can give back to communities or causes and gives you an opportunity to channel your energies into things that you are passionate about! (Please check out the lovely Gemmas Autism AwareBears facebook page, spreading awareness of autism, one stuffed teddy at a time!). For me, it also means that I don’t have the guilt of letting colleagues down or passing on your own workload even just for a while which was a real source of anxiety for me.
Working is about so much more than just an income. Its having a purpose, being ‘you’ again, its having a tribe or company during the day, outside distractions from your own issues, something to discuss around the dinner table at the end of the day but what I have learned through my journey, and the wonderful SEND parents who have shared their own feelings below is that no one should ever judge another parent for their working decisions as we really don’t know whats going on behind the scenes. With some creative thinking around finding that purpose nothing is impossible. We just need to believe in and support our own dreams in the same way that we support our children’s. Where there’s a will there’s a way…or cheese and gin in my case!!
I’d love to know your experience of working if your child has additional needs.
Other parents experiences..
Laura ~ Before William was born I owned my own (successful) recruitment agency but I couldn’t possibly go back to doing that full time with him. He needs 24/7 care so during school hols there’s no one but me. Childcare for him doesn’t exist. He can’t go to any normal holiday clubs and the ones he can go are 3 days out of the whole 6 weeks summer hols and non existent any other hols. Plus his appointments are all term time as the therapists don’t work school holidays! He has approx 3 appointments a month and let’s not even mention the numerous sick days he has!! Instead, I have retrained and now work as a social media manager for small businesses.
Gemma ~ I worked for the careers service for 13 years within our local authority. I gave up my job after reducing my hours to just 11.5, I still couldn’t fit those few hours in around Islas appointments and school. Islas school (mainstream) were phoning me constantly. I was so stressed, owing work time I could never pay back. My boss and colleagues were amazing but I couldn’t juggle work anymore and I left.
I miss working, I miss the social side as most of my days I now spend on my own but I know whatever the kids need I can be there, all school things, appointments, I miss nothing and my husband is very supportive. I now have time to run my support group to help others, help places become more accessible and my blog. Every cloud and all that!
Miriam ~ I had a varied past employment including teaching, call centres and even cleaning! I did whatever I had to do to pay my own way basically. When I was pregnant I was running my own business with my husband. By aged 2 my son was on Disability Living Allowance and by 4 his twin sister was too so we ended up facing a life on benefits because as the children have aged, their disabilities and difficulties have become very consuming.
Giving up work to be a full time carer caused both my husband and myself to be depressed but I am more accepting now while my husband still struggles. Financially we struggle but the children can’t access out of school support and Isaac is often off school so we have no choice at present.
Marc ~ I used to run my own business, supporting charities to reduce their overheads so they could spend their precious income more effectively. It was too much to do with the kids so I decided to close it down.
I became their full time dad and carer but I soon got bored, so I setup a charity which generated half a million a year turnover! I struggled to balance work with family but the kids always came first, and Mandy was working full time as a nurse now so I couldn’t rely on her to take up the slack. I ended up working at 3am, weekends when Mandy was around, and any moments I had free. My relationship with Mandy suffered and I was getting resentful of the kids.
We decided to make a break for it and relocated to Devon. I didn’t work again but I set up LittleBlueCup.org, I became a Trustee for a local charity supporting parents with SEN kiddos, I was a governor for Bens school and I was an advisor for Devon CC children’s disability team and Devin CCG supporting their re-procurement of the contract currently held by Virgin Care.
Then we had an opportunity of a lifetime so moved to an amazing property in mid-Wales. This time I’m refusing to get involved with anything locally, I will concentrate on LittleBlueCup and my blogging. Mandy is exhausted and taking time out whilst deciding what her career path will look like. Our relationship has never been stronger and we get to spend time together when the kids are at school. I’ve basically proven that for a healthy relationship and happy kids and my own mental health I simply can’t work full time, I need flexible part time opportunities.
Helen ~ I was a Headhunter for a consultancy which helped European businesses in IT & Telecoms set up channels to UK. It was so hard and the executives I dealt with were HORRIBLE HUMANS but I loved it. I always planned to be a stay at home mum but with David never sleeping, severe 24 hour needs and appointments I don’t think I ever could work even if I wanted to (which I don’t, I feel it needs to be me by his side when he’s not at school). I feel like if anyone met “me” now they’d never in a billion years know that I was once so different, in appearance, attitude, everything. I don’t know how anyone goes to work with a child as severe as David I honestly don’t.
Julie ~ I was a nurse working 12-14hr shifts. l quit my career when Eliza was 2 as it was impossible to do the hours and be mum safely. I was exhausted and it was really hard to find someone to look after a then non verbal child with additional needs. I’d love to be working again, I don’t care what as but I need term time only work that sits inside school hours as I’m a single parent and Eliza’s carer. It’s impossible and even the job centre year their hair out when I go to my meetings because they know I’m classed as fairly unemployable. It’s added to my depression that I can’t find a job and it’s certainly not doing my anxiety any favours
Hana ~ Before Tilly I was a university drop out working in a hotel. I dabbled in being a housewife but my husband walked out when I was pregnant and doesn’t financially contribute. When I had kids I found a very laser sharp focus, trained as a breastfeeding peer supporter, became the project Lead for South Hampshire managing fifty volunteers, went back to College and now I’m just finishing my first year as a student Midwife. It’s very difficult but having a SEN child has made me very determined to achieve all that I can. I try to mainly do nights and have a nanny. I will never not work again, no matter how impossible it may seem.
Lisa ~ I worked at senior management level in market research prior to autism hitting our house. I hate not being able to provide for my family (and myself) more than anything. I’ve written about it a few times and even updated my CV to reflect life now ?. It will be the making of me…I am determined to set something up but need the smallest to be at school / nursery to be able to focus on it.
You are so very much more than your pay packet (but I get what you’re saying).
Great post – and thanks for adding the link to my post on being a SAHM xx
Thanks Kerry C x
Thank you! <3 I was an employednurse for twenty years but now I can't reliably hold a job. Childcare is unreliable. Depending on how my husband's bipolar is cycling, 3/4 of the time I won't leave mh son alone in his care, my son has therapies, surgeries, a dozen specialists we see all year round, med follow-ups with psychiatry, frequent ear infections that mean surprise trips to urgent care or pediatrician, occasional respiratory emergencies at school., aggressive behaviors to caregivers … . I just cannot keep to a set work schedule even part-time and trust me, I've tried. <3
Its so hard and I think what is so frustrating is that we are the parents who really want to work but can’t! C x