“SIX children? Jesus you have your hands full.” That’s the general consensus by people who don’t really know me.
They peer into your shopping trolley and exclaim your food bill must cost you a fortune as they ask what car you drive. They assume you are on benefits, claiming this, that and the other (I’m not) and you either get the sympathetic glance or the roll of the eyes as they have made up their mind about your situation, without ever setting foot inside your door or knowing you well enough to have your phone number.
You become “that” mother, the one with “the” kids.
People fail to understand that we are a single income family; how I gave up being self-employed to stay at home with a then 18-month-old son who we were told had hearing loss and would need at least one hearing aid. My husband and I had to have the conversation about who would work and who would stay at home, it made sense that Ian stayed in his job as it was secure, the wages were stable and he had an opportunity to work his way up the ladder.
The next few years that were to follow were probably the most challenging as a couple and as parents.
I think, for a husband, having to watch his wife be told not once but twice that her baby had died but her body had not recognised the loss, was hard, but even harder was watching me have to give birth while I suffered tremendous blood loss while the doctors came running from all over while he could do nothing.
I remember vividly the next morning how a wave of calm washed over me as I asked the nurse for our tiny baby to be brought into the room in a little white box, a baby whose details were so identifiable, although so small, is something that will never leave us. I studied her intricately as I had somehow prepared myself mentally, having gone through the physical loss. I don’t think I will ever forget Ian’s devastated face, it was as if someone had just told him what happened and it suddenly registered what just occurred.
I think, if you ask him, he will say watching me carry a white box out of the hospital while people stared, the realisation of what they were witnessing suddenly dawning on them, will be something that will stay with him for life. That and the morning we went together to the crematorium, while they played nursery songs and we placed that white box in the hands of a man who didn’t have any words for us.
The loss and that experience together will always be raw, I still have the white baby blanket our baby was wrapped in, I still take it out to smell it and I am transported back in time. When times get particularly tough, I pick it up and hold it to my face, inhale the scent and am reminded of a time where I thought I could not physically or mentally go on.
In the back of my mind, though, I didn’t want that traumatic experience to be my last pregnancy and in 2016 I gave birth to our rainbow baby, Indie. Bodhi was not yet diagnosed and we were elated. We could finally exhale after nine long, anxious months, we had our perfectly healthy baby who passed her hearing test, which was the only concern for us at the time.
Those of you following my journey will know that since Indie’s birth in 2016, four of my children have been diagnosed and are on the spectrum. People on the outside looking in will assume this puts a huge strain on our relationship and I would be lying if I said it wasn’t tough, but Ian and I are a team.
If you ask any parents who have children with additional or special needs, they will tell you, there is no-one else in the world who understands what the other goes through better, as they live it too. People assume that just because you have a blog and are autistic, that you know every other person linked to autism as well, and that you all skip happily through the meadow in some sort of commune. A concept that couldn’t be further from the truth.
My version of autism and the next person’s can vary tremendously, not to say one of us is more entitled to our feelings than the other, more that we all have a story that should be told and can be learned from.
In reality, people begin to judge you for sharing your journey, for being open, for putting a ‘label’ on your child, for apparently having a child who is cute, as autism isn’t cute. For not having a child that is deemed severe, for not being autistic enough. You are drained from giving your all to your family and then you put yourself out there to try and give others permission to do the same and you are shunned by the same people who shout about inclusion, awareness and acceptance.
You have a partner who is trying to support your dreams, your writing, your goals of climbing Kilimanjaro, to be proactive and to do something instead of sitting on your arse scrolling through social media, giving out about all that is wrong with the system.
In times like these, if you didn’t have a partner to hold you up and together you wouldn’t be able to go on, that and the fact that no-one else could do what you do for your family and you don’t want your children remembering you as weak.
You are battling depression and anxiety and feel like you are the menu at an all-you-can-eat buffet. People claim that there was none of this autism when they were growing up, you compare it like being at an auditorium with crowds watching and you are the one people are pushing forward into the spotlight front and centre on the stage.
You want to scream that people are failing to grasp the concept that many like, me who are diagnosed later in life, would probably have been seen as a little odd in centuries past. I can pass for neurotypical if I work really hard at it, but am prone to sensory overload, which basically means I may turn up to an event but I will need about four days of not having anything on the calendar after to compensate, which obviously in turn affects my family life.
People need to understand, life now is louder, brighter, more intense and confusing than ever. I live in the countryside and I rarely go to town as it’s too overwhelming. If I went back in time and lived on a remote farm somewhere, would anyone notice anything odd about me? I doubt it. No traffic to contend with, no crowded streets, no flickery electric lights or buzzing, no loud noises, no overwhelming smells. A farm has a set routine, I;d be an unreal butter churner as the endless repetition would be soothing other than boring.
I’m not trying to romanticise the past, I’m saying disability exists in the context of the environment. Our environment isn’t making people autistic in the sense of some chemical causing mass brain damage, but we have created a modern environment which is hostile to autistic people in so many ways, which effectively makes us more disabled.
You start to see more people struggling, failing at school because the system is outdated and they are overwhelmed, freaking out at the sound of electric hand dryers and so on. So suddenly, it just looks like there are millions more autistic people than existed before.
People need to understand that, as parents and as a couple, instead of wondering what sport our child will play, we are faced with the decision of who will look after them when we are gone, if there is not even help there when we are alive?
Where will they go to school when you are being told there is no room at the inn for them?
What will we spend money on therapy wise for five out of six of them, who need help but for whom there are no services?
Are we doing enough, do our children think we spend more time with one over another, do they resent the fact we don’t get to to go on family outings as a unit or do things together as much as their peers’ families do?
How do you deal with people who tell you it is probably best you don’t bring your child to their event, but yet your other children are more than welcome?.
How hard is it to watch other children the same age go to events and be included, but stand by as yours are cut?
How excruciatingly painful is it to witness people stare at your child when you are in public, as it may have taken you the best part of a week to pluck up the courage to go out or prepare your child for this outing?
You worry will people still accept your child when they aren’t the cute three or five year olds they are now, but are ten, eleven or twelve, and maybe their differences are even more obvious. Will their cousins be embarrassed when they are with their friends and pretend not to know them, will they have friends of their own?
How people you thought were friends suddenly distance themselves from you as soon as autism enters your world and you are so isolated you may not see one adult from one end of the week to the next?
Who will watch them, even just for an hour, so we can just be Lenore and Ian and touch base instead of passing one another in the house with instructions on how to take over?
How do you deal with a child screaming as they don’t want you to speak to one another, which sets off another child and has a domino effect on the house for the rest of the day?
One on one time is paramount to the survival of your relationship, time as a couple and also time on your own to just recharge.
Most importantly, supporting each other through the low times even a little bit more than the good ones is what adds another bolt to the tight unit that is your bond, and as you come home one day from an eye exam with a child, and four of you walk in now wearing reading glasses as your husband exclaims dryly; “Jesus, if we were a band we would be called Ian and the ailments,” you are hysterical laughing and realise, in the midst of your belly laugh, you are thankful that humour is the glue that holds us together.
Follow ‘Out in the Sticks with Six’ on Facebook and Instagram to see Lenore’s journey.
Lenore will climb Kilimanjaro this September, in aid of Sonas Junior School, Shine Centre for Autism and also Irish Guide Dogs for the Blind. To donate see https://www.ifundraise.ie/4888_20kforkilimanj.html
See Lenore’s other columns on EchoLive.ie
To celebrate International Women's Day on March 8, a fundraiser takes place at the Crawford and Co for a screening of Sex and the City. Enjoy a Mimosa/Prosecco reception on arrival at 3pm sharp before the movie at 4pm Finger food provided. 80's and 90's tunes will follow the movie.
Ticket price includes entry into a draw to win a trip for two to the Big Apple, NEW YORK CITY including flights & hotel.
Some amazing spot prizes will be up for grabs on the day including one for Best Dressed.
All in aid of #20KforKilimanJ.
Tickets from eventbrite, €26.83.