So I’m a Carer…What Happened to Being Just a Mum?

I don’t think we ever plan to take on the role of ‘carer’. When my Son was born, I became his Mum, his care provider, the feeder and the security blanket. I thought nothing of cuddling him to sleep as that was his preference and with everything he’d been through, he deserved to feel safe.

I can’t remember when it changed, maybe around five years old came the question. ‘Are you his main carer?’ I am an unpaid carer who looks after my son who has additional needs, I am not alone in this as my husband is his main carer now. Being a carer full time, part time, occasionally puts great pressure on our lives as individuals, as a couple and as parents. I personally carry around a great deal of guilt, should I be at home more, should I be working more, should I be spending more time helping him with his needs, should I be attending every course, workshop and coffee morning just to feel like I’m not alone because the one thing I’ve learnt it’s lonely being a carer or a caring team. You rely on each other a lot and only keep it within the family unit extended or otherwise. Honestly, who wants to spend any time with us! Yes, a day at the beach sounds amazing until Thomas decides to have a meltdown, eat sand, not want to stay still for five minutes and that day suddenly becomes an hour or he decides that he’s not quite in the mood for the zoo so throws his body to the floor in front of the gorilla enclosure. It’s not that we don’t want Thomas to experience these things, but our lives are so much different. It’s also hard to watch your friends child running around a park, doing normal things. We shouldn’t judge on the ‘normal’ but we all do it. As much as friends or family say they get it. It’s hard unless you live it!

What’s a Night Out? 

I can’t remember the last night out I had! Like honestly, I think it was some time back in 2018 (I’m not even joking), 61% of carers have suffered ill health physical or mentally due to their caring responsibilities. I still shrug when people ask ‘but you get help right?’ I’m not exactly sure what people expect me to say ‘that I have a full time paid nanny’ that we get thousands of pounds a year to fund the non-existent respite spaces. This post is by no means a whinge or self-pity but how many people take for granted that their grandparent does sleepovers, that holiday clubs are around the corner. We get four-holiday sessions! Yes, four whole days that have to be spread across six weeks! That’s on a first come basis and when your child relies on the routine of school, the six weeks holidays are a battle at times.

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Hints and Tips

If you are a carer yourself, are new to the responsibility or you have been doing it for years without noticing I wanted to share a few tips on how to cope, whether you look after your own child, a family member or it’s part of your job.

  1. Stress & Worry – Everyone is guilty of stressing and worrying its part of human nature, but it can triple with caring responsibilities. My phone is constantly within my sight just in case school phone. You may find it difficult to switch off from your caring role especially at night. It can be easier said than done but take time for you, even if just five minutes you sit down and do something you enjoy whether it be catching up on your favourite programme or reading the new bestseller if you zone out for just five minutes it can have a positive impact on your health.
  2. Money – The financial burden of caring for someone is sometimes a cross between putting petrol in your car to get to work or feeding your family! I have had cereal for dinner on many occasions. As a family, I work 27.5 hours a week across five days. My husband is full-time carer first and a self-employed designer but we still earn way under the lower earning limit of £16k so we rely on working and child tax credits and carers benefits. We are in debt and have been for many years, maxed out credit cards, loans, overdrafts. We are slowly getting ourselves back on track. My suggestion would you draw up a monthly budget, if you are in the red, try and see if you could lower any outgoings. I spend my life on websites like Turn2us and Entitledto to see if we could be entitled to more it is also helpful to see how Universal Credit will affect you. Then there are helpful sites like Money Saving Expert and The Money Advice Service who can help save you money.
  3. Physical Health Problems – We’ve all been there. Even as parents our needs come after the rest of the family but what happens if due to your avoidance that you suddenly couldn’t care for your loved ones. My back has been playing up for years and I avoided it until it was so bad last year that I could barely move! I remember at the time just feeling down, tired and with no energy. Please don’t suffer alone, approach your GP for the support!
  4. Anxiety & Depression – It’s not like you wake up one morning and feel down or low or depressed. From personal experience, it sneaks up on you. I remember having a bad day and just wanting to stay at home under my duvet, so I did. That was when I realised the low days were pretty constant. I suffered alone for a long time, I didn’t want to ‘bother’ anyone with my feelings or problems. Then one day, it felt like hitting a wall. I didn’t want to live my life anymore. Now, I’m not saying I wanted to commit suicide (that’s not me) however I hated my life. I wanted to run away, get on an aeroplane and not be me for a while. Thankfully I didn’t, instead, I spoke to my GP who took it all very seriously. I still get moments of extreme anxiety, over silly things like attending job interviews, I’ll be honest and say last year I cancelled three interviews due to my anxiety. Never feel alone, there are professionals out there, who don’t judge, don’t make you feel stupid, it is their job to give you what you need! It’s hitting the news so often these days of teenagers as young as 13 taking their own lives because no one is listening! I was very good at masking how I was feeling, chatty little me was so used to doing it that it was second nature but hitting that wall was a wake-up call. Please don’t suffer in silence!
  5. Social Isolation – I have always been a sociable person, coffee date, shopping, anything to get me out of the house. But there is the other side of being a carer when you feel guilty for having a life. My husband isn’t a great one for ‘going’ out. So I often feel guilty when I do. However, I have learnt that my anxiety and depression was at its peak when I wasn’t going out and I wasn’t enjoying work. But I’ve learnt in the last year to say ‘yes’ to experiences. My son is at a special school, a group of parents, I can connect with as we all have the same level of sleepEvery year, one in four of us will experience a mental health problem. But hundreds of thousands of people are still struggling. deprivation, the same issues of doing normal things. Suddenly, a group I could have a coffee with and not feel like I was alone. I guess the point I’m trying to make is…when was the last time you checked to see if your friend was okay? Asked them out for a coffee? I’m not just talking about friends who are carers! This counts for everyone!

This post today was inspired by the charity Mind. They are a charity who believe no-one should have to face a mental health problem alone. If you would like to know more about the charity and how it could help you or a loved one, please click on the link above.

So…I’m still a Mum who just happens to care for a hyperactive eight-year-old with cerebral palsy, epilepsy and learning difficulties.

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Juggling Work with a Special Needs Child

I came across an article recently where a parent/Mum spoke about her constant juggle with her home and work life balance. It got me thinking about my own work/life juggle. If you would like to check out the article written by Tania Tirraoro please check it out here at Special Needs Jungle.

I’m not going to lie, I wanted a career! It was important to me, it was one of my life goals. Happy and content mum means equally happy and satisfied children! I wanted it all… excellent career while juggling childcare and home life. For the most part, it worked, after having my eldest (11) I had no choice but to return to full-time work. Unfortunately, mortgages don’t pay themselves! I was lucky my Mum worked afternoons, so she had my daughter all day on a Monday and every morning. It was a life saver, as my employer was far from flexible. Childcare was one of our most substantial expenses and even with my mum’s help, it was still over £800 a month!

For three years, I worked up the career ladder, moved companies and continued to juggle family life. After having my son (8) things were going to be very different, he was born with Strep B and developed meningitis at three days old, please see my other post ‘My Son was Born with Strep B’.

Suddenly I had a baby that needed physio, occupational therapy, consultants, tests, scans, hospital appointments and needs beyond an average child. I was ever hopeful that my employer would understand my need to work part-time, it wasn’t your average circumstances. I didn’t return to my old job, it was no longer suitable and for a year I muddle along. I quickly realised how I saw flexible working, wasn’t how my employer did. I was continually taking holiday to attend appointments, having unpaid leave because nursery called as he had a temperature and the push came when I had to cancel three of his appointments. Appointments that once cancelled take three months to get booked in. I was having an emotional week, I walked into work and almost instantly nursery called and he’d been sick (he had reflux). I felt guilty for not giving work my 100% attention and I felt more guilty that my son’s needs were now suffering. He wasn’t doing well at nursery, he was struggling with his development and I went home that afternoon and wrote my resignation letter. The relief I felt was one of the best feelings. I never wanted to leave, but it wasn’t about me. Thomas needed his Mummy and nursery wasn’t going to fill the hole.

It was a decision that I have never regretted. It gave me time with Thomas to attend his appointments, plan for his future and spend the time that I just wasn’t getting while I worked. I worked part-time for a hotel, working a couple of evenings around my husband. It worked for us at the time.

Call me naive, but at this point, Thomas was still a toddler and developing averagely on time if not a little behind. He attended nursery two days a week, as I felt he still needed the social side of it and secretly I was hoping that once he was settled, I could get a part-time job and give up the evenings! Having taken the financial drop in pay, reducing the nursery costs, we lost most of our child tax credits. We muddled on for a few months until I cut nursery down to one day a week, it was pointless, but still, I wanted him to be like his sister and learn from others.

It just didn’t work, so I resided to the fact that it was best to remove him altogether. Fast forward two years, I thought the answer was return to education and get a ‘proper’ degree. He was young, at a nursery and it would work around it and for the most part it did but suddenly he wasn’t hitting his milestones, nursery kept calling me asking me to collect him for various reasons and then the file straw, I was two days late paying an invoice due to them undercharging, and they told me that they felt it best that he left.

CrayonsI guess back then, I still had this idealistic view that I wanted him to have a healthy life. Like most parents with special needs children, we want what is best for them and them to feel included. My dreams of a mainstream school were quickly fading when his epilepsy was diagnosed. He attended a special needs nursery, who were terrific!

Six years on, I was still working evenings having struggled to find a part-time job that contained the flexibility of hospitality. Degree under my belt, but for what it’s worth it hasn’t advanced my career, but it made me feel better.

How it Works for Us…

Three years ago, during my degree my husband came home from work one morning,  told me he couldn’t do it anymore. We’d had a tough night with Thomas, neither of us slept well, and it made a decision we’d been struggling to make more comfortable. He would give up full-time work, become Thomas’ full-time carer and I’d continue my degree. He now works part-time from home, around Thomas’ school drop-offs and pickups.

I tried last year to return to full-time work, financially one of us needs to work full time. It wasn’t, however, that easy. I wanted something locally so I could be at home within 15 minutes, but it was impossible. Most of the commutes were at least 30-40 minutes each way and as a family, it would never work. I realised very quickly that part-time hours would be our only option,

School HolidaysOur biggest struggle is the school holidays, we have one or two decent child care providers in our area who can caterer for disabled children and as you can imagine they fill up quickly and limit the sessions that a child can attend. Unfortunately, we don’t have parents who are able to offer their services for a variety of reasons we rely on school, holiday clubs and a playscheme one or two a month on a Saturday. We are still lucky in that respect, but I do panic with all the government’s budget cuts concerning disabled funding that within a few years they will be closed.

I like to call these types of posts ‘the get to know me’. No real reason but to share a little bit about our lives and our world. Do you struggle with work/life balance? Have you had to make changes to your working life to adapt to the balance? Please share your own stories or blog posts below.

Thanks for reading…

My Son was Born With Strep B…

There has been a lot in the news lately concerning Strep B. I am very much an advocate for educating and share a lot of news from The Group Strep B Support website. There is a whole host of information and Jane Plumb MBE, is the founder alongside her husband, Robert. Please have a read. Their campaign to improve awareness is fantastic.

I find writing about my son, Thomas the hardest. Not because I don’t want to but because unless you’ve lived it or you live it, it’s hard to understand. And if I’m honest, I’m not sure if I’ve ever come to terms with it. Thomas was four days old in the photo and at the height of the infection.

However, I am currently sat on Thomas’ bedroom floor while he sleeps, I will try to sneak out again in five minutes, but this is where you will find me between 8.30pm and 10.00pm most evenings.

I want to share Thomas’ and our story because as a Mum, we read all the books, we listened to what Doctors, Midwives and what everyone else said and none of it mattered.

Thomas is our youngest child, he has an elder sister called Alana. Both straight forward and relativity uncomplicated pregnancies. Both born naturally and healthy, I guess you could say. Thomas wasn’t right from when we arrived home, call it gut instinct.

At three days old Thomas was back in the hospital fighting for his life after being diagnosed as having Group B Strep, it’s a bacteria that usually is quite harmless lives in the gut or vagina however on birth it was transferred to Thomas. He went on to develop early-onset Strep B meningitis and spent three weeks in the hospital. Looking back, three weeks was nothing really, but at the time I was 40 miles from home, it was hard for visitors due to the distance and Thomas was extremely ill.

What shocked me was that I had no awareness of Group Strep B or anything related, there had been no leaflet in my maternity pack, no posters on the wall. It never hit my radar, until the Doctor uttered the words I will always remember. ‘Your son, has meningitis…have you ever heard of the Strep B infection?’ That sentence changed our lives. Ironically, I sat in the Doctors waiting room three months after his birth opposite a Group Strep B poster!

Thomas was a little fighter and the photo above was taken last year celebrating his eighth birthday! A day that has now become a big deal in our house as it reminds us of how far we’ve come. I don’t want to dwell too much longer on the past. I can be honest and say that Thomas has a multitude of problems ranging from epilepsy, cerebral palsy, learning difficulties, speech and language delay and social disorders but he’s Thomas and a daily challenge but he’s our miracle.

I will talk more about Thomas, epilepsy, cerebral palsy and other related things over the next few months. If you have any questions, please feel free to contact me. If any of you have been affected by any of this, please share any thoughts and feelings. I do have a facebook group ‘Group B Strep Awareness’.

Thanks for reading…

*All opinions are my own, I have not been sponsored, paid or gifted any items in respect of my views and opinions. I also apologise if you found any of the images upsetting*.