Autism, Our lives and Autism

Is a carers life a luxury?

It was put to me yesterday that to be at home every weekend and to not work at all is a luxury.

I know many other additional needs parents receive comments like this too.

The truth is I have a job, my full time twenty four hours a day, seven days a week, 365 days a year job is firstly being a wife and mum to my husband and all three of my children and secondly I am Lachlan’s carer.

Additional needs parents do a job no one willingly applies for. A job they never signed up for. A job they wouldn’t wish on anyone else.

So when does a parent become a carer?

A difficult question to answer, the official definition is:

“A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

Anyone can become a carer; carers come from all walks of life, all cultures and can be of any age. Many feel they are doing what anyone else would in the same situation; looking after their mother, son, or best friend and just getting on with it.

Carers don’t choose to become carers: it just happens and they have to get on with it; if they did not do it, who would and what would happen to the person they care for?”

In terms of financial support the government view a carer as someone who cares for another at least 35 hours a week and earns less than £102 a week and does not study more than 21 hours a week. The person they care for must be in receipt of one of a list of disability benefits at a certain minimum rate. For a child to qualify for a disability benefit they must need more looking after than a child of the same age who doesn’t have a disability.

Here is piece of information most people don’t realise, carers allowance is currently £61.35 a week. Jobseeker’s Allowance is currently £72.40.

In my case I guess I became a carer the day Lachlan was born although only officially when Lachlan was two and a half.

Lachlan is now four and a half.

As a mother and carer to a little boy with autism and developmental delay, I fulfil many roles, I am a speech therapist, play specialist, OT, dietician, friend, teacher, protector and advocate, kind of all rolled into one.

I am going to tell you about a typical week day and weekend day with Lachlan.

Weekday:

Lachlan gets up at 7.45am, it is then nappy change, breakfast and along to nursery for 8.30am. Lachlan has 1:1 care at nursery to help him participate and to keep him safe. While Lachlan is at nursery I can spend time making phone calls, sometimes in meetings with professionals, catching up on the never ending house work and washing, or cooking Lachlan’s meals that meet his dietary requirements. Or I could be catching up on my studies or sometimes catching up on sleep! Most definitely every morning a trip to the toilet in peace!

I pick Lachlan up at 11.30am, we come home, I spend an hour battling with Lachlan to get lunch into him.

12.30pm I will grab myself some lunch while entertaining Lachlan with an activity at the table.

1.00pm Change and toilet Lachlan, if I am lucky it will just be a nappy change and not a full set of clothes change.

1.30pm Home visiting teacher, Speech therapist, OT arrive or we catch up with Lachlan’s friend.

3.30pm We collect Alex from school, come home, change nappy and or clothes and have a snack.

4.00pm Lachlan usually happily plays with his toys, iPad or watches TV.  Hamish comes home.

5.00pm The tea time battle begins, if I am lucky our home cooked offering will be eaten on a bad day it will all go in the bin.

6.00pm Change / toilet, get tea / feed everyone else. While keeping a close eye on Lachlan, did you know how much fun it is to cover yourself and everything in sight in poo?

7.00pm Clean up after tea and after Lachlan, usually another nappy change.

8.00pm bath time, you can’t leave Lachlan for a nano second.

8.30pm milk and melatonin.

9.30pm Lachlan asleep!

11.00pm Lachlan to bed. We go to bed.

1.00am Lachlan up, settled in our bed put back in own bed.

3.00am Lachlan up, full change needed everything is soaking, if we are lucky that doesn’t include our bed.

5.00am Lachlan finally goes back to sleep!

Weekend:

The same as through the week except there is no nursery or visiting professionals, from the minute Lachlan gets up it is non stop until bed time and beyond. To go out anywhere we need an extra pair of hands and a lot of time spent planning.

Did I mention I have a husband and two older children to add into the mix?

If you have read any of my other blog posts you will know Lachlan is a live wire, he is so full of energy it is non stop all day everyday. Lachlan has no safety awareness and loves to pursue climbing and other dangerous stunts, he has a frightening fascination with water and loves to chew things especially electric cables, in many ways he has a developmental age of around 2 years, which is 2.5 years behind. He really does need 1:1 and sometimes 1:2 supervision every waking second of every day.

At the moment the only breaks we get if you can call them breaks are when Lachlan is at nursery, we rely heavily on grand parents to help out when we need to be somewhere without Lachlan, usually appointments for the other children or meetings for Lachlan, in the last 3 years Ian and I have been out alone together for meals or the cinema less than five times! From the day Lachlan was born I have never had a full nights unbroken sleep, not once.
If I get time my hair gets cut once a year and I live in jeans and easy wash and dry tops, I can’t remember the last time I got dressed up, I am not even sure I own anything dressy anymore.

I tried to find a child minder or child care provider locally to look after Lachlan as I had hoped to get a job once Lachlan went to nursery and I even took steps towards setting up my own business but apart from one childminder no one was interested in the job, the childminder wanted three times her normal rate though as she felt that if looking after Lachlan she would be unable to look after other children at the same time. I had to give up my business idea and no job I am qualified for would pay enough to pay childcare.

You know though, at the end of the day none of it really matters, all that matters is that all three of my children are happy, thriving, well cared for and loved.

As far as I am concerned I may not have paid employment but I do a job far more important, I never signed up to be an additional needs parent but I am and it is the hardest of jobs out of any occupation, it is also the most rewarding, every little step Lachlan takes it is because we all try so hard to help him be the best he can be. I am proud of all we have achieved.

I don’t think it is a luxury that I am at home every weekend and don’t in some people’s eyes work at all, perhaps those so quick to judge would like to come and wear my shoes for a day?

Is a carers life a luxury?

I will let you decide.

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