I wrote this piece last year as therapy and to help me truly understand how I was feeling. I published it in my book, but after my interview on the radio yesterday, I wanted to add to it.
I met a wonderful Mum (Elaine), to 2 children with Autism and Intellectual Disabilities, she gave me so many new perspectives and real food for thought. She made a really important point about how us being there to talk about our children’s challenges, did not mean we love them any less or do not accept them.
In fact, it means we do love and accept them just the way they. Talking honestly about our children’s challenges means we simply want everyone else to love and accept them the way they are – accepting them As – They – Are.
So here is a slightly re-worked piece called Labour of Love. A piece that I am truly proud of. A piece that I hope will connect for so many parents in my situation. A piece that helped me get through a very dark time, it switched the light back on for me. Making me realise, that I accepted my son, but I also accepted myself.
Like all women, I love a good labour story. Whenever women get together for long periods of time, we inevitably swap stories of how bad it got. I was lucky enough to have three quick labours. Obviously, they were all tough and I deserved a medal or at least a bunch of flowers on each of them – I am still waiting on both items from my husband though! My friend, Lily definitely wins the best ‘hard labour’ story.
On her second son, she got up at 1am to go to the toilet. She felt a strange sensation, so on her way back to bed, she looked in her full-length mirror, only to see a tiny foot peeping out. After a horrifying ambulance ride to the hospital, she had enough breath left to make sure she was suitably covered so that the whole of A&E didn’t see her backside, after being knocked out for an emergency C section she woke up to her perfect little boy.
Labour is not easy; the clue is in the name! But we all know that the end result is worth every ounce of pain.
Once we get home with our bundles of joy the love grows every day. Sometimes as a parent we have bad days, bad moments and we feel we could gladly put our children up for sale on eBay, or at the very least re-locate them to the shed for a little while, but it soon passes.
What I have had to learn as a special needs parent, is that at times, the love for your child can show itself differently to your other children. You are and will always be the biggest advocate for your child. Unfortunately, as ‘the system’ is so stacked against people whose needs are in any way ‘different’, then you often to have to use up much of your valuable time and energy being that advocate.
The last 2 years, have definitely been our most challenging time. in 2018, at the end of the summer holidays, Patrick put a pillow over my face and tried to suffocate me, whilst I was asleep.
Although he is fully verbal, he could not find any other way to tell me how scared or upset he was about returning to school. This is not just September blues, this is severe, uncontrollable, painful anxiety. It is communication, I am not angry with him. I am sad that he feels this way and I scared of what it means.
After this incident, I found myself emotionally shutting down, making myself feel numb. Without doubt it is a defense mechanism, if I have to think too hard about it then I would crumble and couldn’t function for him or anyone else. Sadly, when we do this, there is only one emotional switch and you switch off the positive emotion with the negative.
Just like the endless reviews of the year that appear on our screens and magazine pages during the December, I have sat and contemplated the decade that recently came to end. I love to trawl through stories and pictures of things I had forgotten.
In all honesty though, both 2018 and 2019 are years that I pretty much want to forget. I had started 2019, feeling positive, hopeful. The Christmas break had been peaceful, even enjoyable.
Patrick’s new medication plan was working and things felt, calm. My hopes were smashed by 6pm on New Year’s Day. We had friends over for dinner and Patrick became overwhelmed. He had an unmerciful meltdown.
Then 5 year old, Erin finally hit a wall in the way she copes and also had some kind of little breakdown, she was hysterical and hyperventilating, every time she seemed to calm down, she would get upset again. I was in one room dealing with Erin, Mick in another dealing with Patrick. We had to swap every few minutes as they were both screaming for me. I don’t know why. Mick is a lot calmer than I am. But whenever Patrick gets really distressed, he only wants for me.
As for Erin, she has always struggled with separation anxiety from me and needed my attention too, and why not every distressed five-year-old just wants their Mummy. This was not an isolated day. The challenges continued pretty much every day of 2019.
Autism doesn’t know the date and on my birthday, Patrick tipped a full bin of rubbish over my head then hit me in the face with the bin. Not quite the gift I was hoping for, I’d asked for new boots!
My own mental health and ability to cope with these daily challenges often ebbs and flows and I do the best I can. Having peri-menopausal hormones really doesn’t help my ‘demons’, and there are days when I think Mick probably feels he may need to call a priest to do an exorcism on me.
One day last year, after the kids had gone to bed, I totally broke down and told Mick I really didn’t know just how much longer I could carry on doing this. Our family has been in crisis for two years now, with 5 years before that being very emotionally draining too. Fighting tooth and nail for the most basic support accounting for much of the struggle.
In reality, very few people truly understand what we are dealing with. If you haven’t lived it, you just can’t know. Through my tears, I told Mick truthfully that, I felt terrified, that I might not love Patrick enough to get us through. I didn’t know how much deeper I could dig, to get up every day and face our situation.
This was without a doubt one of my lowest points as a parent. To question the love you have for your child is devastating. I went to bed that night exhausted on every possible level, not knowing if I could even face getting out of bed the next morning. Feeling too exhausted by the shame.
I did get out of bed the morning after I hit rock bottom, and I have continued to do so. I went to see my GP about it and I will forever be grateful to her for not pulling a faux sympathetic face or giving me a hug, instead sitting and listening, talking to me like an adult.
She is a parent herself and asked me, “Is it harder to love Patrick than your girls?” The question took the wind right out of me! Not because I was horrified, but because with that question, she totally validated my feelings. She heard my voice, and I realised I wasn’t singing solo!
As a parent, you are supposed to love you child unconditionally, but you sometimes find that love harder to feel, because there are so many barriers you weren’t prepared for. That is no one’s fault but adapting takes time and effort, it isn’t immediate. It comes with a guilt that you continuously carry around like a crushing weight on your chest. The shame of that feeling is crippling. My GP told me she understood, that this was a natural feeling. Making me realise that I wasn’t a monster.
As kind as people are trying to be, when they tell you, “you do an amazing job” or query how they could do it, offering my least favourite platitude “God only give Special Needs kids to special people”, these words often make you feel worse. Because inside your head, you don’t feel special.
The pressure of being expected to act like a saint, when really that is the last thing in the world you feel like. Sometimes, I don’t even want to be anywhere near my children. I want to run away and hide, because parenting is nothing like it is in the magazines! For once, social media wisdom actually saved me from this particular guilt black hole, telling me that, ‘having children is the only time you can experience heaven and hell at the same time.’ That phrase nails it for me.
I’ve come to accept, no one’s parenting is anywhere resembling perfect. Does perfect parenting even exist? Much like ‘normal’, it is a concept that is constantly changing the goal posts. Being a parent is the hardest thing any of us will ever do and being a parent to a child with significant additional support needs brings new dimensions you never thought possible.
A lot of experts will tell you that you grieve the child you expected to have. I don’t know if that is what I am going through but I definitely know it hurts a lot. I think I’m grieving the Mum I wanted to be more than anything else. Some days it makes me feel physically sick and exhausted beyond anything I have ever experienced. I am worn out and worn down. So now I practice self care and every day, I aim for good enough, not picture perfect.
I have realised that some days, just getting up out of bed to face your challenges IS enough, and on some days, staying there is the right thing, just as long as you don’t stay there too long, and if you do, well then it may be time to consider getting professional support for yourself.
I’ve done a lot of soul searching over recent months, whilst attending much needed therapy, talking it over with the Psychologist and with Heidi the dog as we have walked. I have found a deeper understanding of what I am feeling. I know that I absolutely do love Patrick enough to get us through this. I do love him as much as my girls.
I have to accept; sometimes that love is in many ways, different. That love has changed as the years and challenges have gone by. It is not what I ever expected to feel in my daydreams. That IS ok, because different, is not less. Love does not have to have a particular look or feel to make it right, there really is no rule book.
Love can be strapping your child into a safe car-seat, that you gave up something you enjoyed, to be able to afford.
It can be singing the same song from the Trolls movie over and over for a year, even though it actually now hurts your ears.
It can be staying up and extra 10 minutes on a night you are so exhausted you can barely stand, to write pretty fairy notes to make your child happy the next morning.
It is spending endless hours, day and night, researching, learning, implementing the latest solutions to your child’s pain, and it can be calling everybody you can think of; politicians, government ministers, radio presenters, doctors, therapists, giving over every second of your free time, to make sure your child gets the support they so desperately need.
In all truth, many times this past year, my love for Patrick has sapped every piece of energy that I have. I often haven’t felt the joy I am ‘supposed’ to have, when I’m around him anymore, because if he isn’t angry, aggressive or distressed, then I am tense waiting for when he will be. Terrified of what he may do to my girls or to himself.
I finding myself so bitter that our situation, has robbed me of that joy I so desperately want to feel. Angry that Patrick is someone I often don’t recognise, someone I have no idea how to support and the services either don’t know or don’t care. That does not mean that I hate Patrick or that I don’t love or accept him. It’s just a normal reaction from a parent watching her children suffering and wishing they weren’t
Mick, my parents and I, do our very best every day to make things right for Patrick and his sisters, all 3 who are also the blameless victims of this situation, making life easier where possible. I know that in doing this, we will find a way to get Patrick’s joy back, to manage his fear and pain, even if it isn’t all the time.
Recently, I collected Patrick from my parents’ house. He came charging towards me as he always does, shouting my name, so excited to see me. For the first time in a long time, I really enjoyed this moment, letting down the barriers I had put up to protect myself, to suppress the pain I was feeling so I could care for my family without crumbling. I felt real emotion from his embrace, even though he nearly knocked me to the ground! I hope, that we are starting to heal.
I will always find a way to get out of bed for each of my children, even if it is not until tea-time some days. Love does conquer all, but it isn’t always easy, it doesn’t always look like the fairy tales we read, we don’t always looking be happily ever after, it’s about getting safely through the unhappy days and enjoying the happy days – recognising it does take fireworks to create happiness, the smallest of sparks is enough.
Parenting is giving yourself completely, finding more, even when you thought there was nothing left.
Labour doesn’t end when our children are born, we owe it them to continue to always push hard, to make sure they survive and thrive in this world, no matter what that looks like and I will never stop doing that. Because for me, that’s what love is!