RIGHT now, I should be making my way up one of the highest peaks in the world. Instead I’m making 25 school lunches a week, trying to find a pair of Penney’s comfy leggings that don’t have holes in them, and staring into space, mentally calculating the hours left until I flop into the bed.
The loud shrieks, YouTube clips on repeat, and nudging into the back of my knees to open some item or other, quickly snaps me out of my thoughts.
Life is chaotic — with six children it is bound to be. The return to school is slowly restoring some sense of order but the reality is the minute you think you have everything sorted, someone moves the goalposts and you are off again.
A house with five on the spectrum can be like juggling balls in the air, that are on fire, all while you are manning the phones, on hold to Sky, Eircom and Ryanair, with an open laptop trying to reply to five different school emails about online work, all while having six folders in front of you, each the size of the Golden Pages, and you jump from one to the next, thumbing through the pages to find the info you need at any given moment — while washing, cooking, organizing, making sure electrical items are charged, and one is at a relative safe distance from the other or it all has a domino effect on the rest of your day.
Six months of being housebound takes its toll. Covid presented its own challenges in some respects. Not being able to leave the house is a godsend to some anxiety-ridden children, with no sudden demands placed on them and not having to come up with some excuse about why they want to stay within their own comforts. If everyone has to stay put and there are no expectations. the pressure eases.
For others who had no comprehension about being sick or locked down, it meant having to keep the blinds down during the day as the words ‘social distancing’ had the same effect as me speaking Swahili. If they could see people then they didn’t understand why they couldn’t be amongst them.
I presented with symptoms in April and became very sick very fast. My GP advised I self- isolate, which meant my husband had to also and stay home from work to take over the running of things. Self-isolating in a busy house is no easy feat in general but when your autistic child is banging on your door with no clue as to why you are locked away from them, or your almost two-year-old is calling “Mommy” with her little hand knocking, it breaks you in two. Couple this with the fact my eldest had to celebrate her 18th birthday with me handing her presents out through my bedroom window to her. Lockdown was tough.
We were elated with the news that our son Bodhi, aged six, had been offered a place in a unit in our catchment area and would start primary school. After four long years of names on waiting lists, our boy got to go to school. The relief was something else.
He had no understanding of why he went to school one Friday last March and never returned, never got to say goodbye, and six months later would now be starting in a completely different one. He had a reunion with two of his school friends during the summer and the gallop that ensued when they caught eyes and shouted each other’s names was heart-warming. The inconsolable sobs when they had to part ways again was so hard. I had to make the tough decision of him not attending his graduation in his old school as it was three days before he started in primary school and would have been too confusing for him.
Our house had a Leaving Cert student who never got to sit her exams or leave school. A sixth class student who never got to finish primary or make her confirmation. A teenager who never got to have an 18th, have any Leaving Certificate celebrations, or go on any summer holiday with friends. The house was hit from all angles while my husband, who works in a pharmaceutical plant, continued his shift as normal as it was “essential”.
We were sitting in front of the television listening to the announcements of staying in your home, exchanging glances, trying to assure the kids that it wouldn’t be for long, when in all reality you were just as worried as they were.
The concern wasn’t about the virus but more about the restrictions and adherence to rules that made no sense. Our house exists on visual schedules and routine, I now had a non-verbal three-year-old I had to hide a school bag from, who tried to escape to the car every day as she wanted to go to back, who handed me her shoes as her indication of being ready to leave.
We didn’t even have the reliable McDonalds drive-thru to fall back on for a spin and had to make sure any route we did take if we did leave the house was nowhere near one as there was no understanding of it being closed.
As the restrictions lifted, ironically the anxieties heightened. I had one child who was physically sick at the thought of meeting back up with people again. Another hid behind a cushion when someone finally called to the door, it was like having to teach them to walk all over again.
The return to school and all the protocols that went with it were a little daunting. I never wore a mask around my children, they also were not out in public or around anyone and knew no different. The world to them was the same as it was when they left it in March. I am really impressed with how they handled it all.
We have a whole house of transition, someone starting in Sonas Junior Special School, an ASD unit in Primary School, another in First year and who just received her leaving cert results to determine her college applications.
The straw that broke the camel’s back was when two of our autistic children’s applications for transport were denied. After six months of tiptoeing on eggshells, with zero help, services, supports or respite, this tipped me over the proverbial edge. I am not looking for a hand out, just a hand.
With five all going to different schools and locations, unless I split myself into pieces I cannot physically be in different places at the same time. At present we have no decision made on our appeal but I am still fighting it. It just galls me that you don’t even get to appreciate any of their first days or be complacent in any of your little victories, for what you are given in one hand they take away with another.
The decision to postpone my fundraising climb, this September, up Kilimanjaro, was collectively made by all of us and we are now booked for February, 2021. I am under no illusions as to how difficult this is going to be, I am absolutely bricking it, I know it will be one of the biggest challenges of my life.
But I could easily be standing looking out the kitchen window this time again next year, thinking I really should do something to be proactive for my kids and autism. It is so easy to fall into the trap of putting things off or letting someone else do the fundraising. How we complain about all the things that aren’t available for us, but don’t push for and stand for the things that are.
We are hoping to raise as much as we can for three amazing causes (which I mention below) which have been instrumental in our family’s progress and helped us navigate our new normal.
I think the lockdown restrictions was a little insight into how families living with autism can be a lot of the time, having to stay home, not being able to go places, keeping your distance from people, being isolated which can lead to depression and start the cycle of more anxiety.
Here are the three charities Lenore is climbing Kilimanjaro for:
THE IRISH GUIDE DOGS
Ebbi, our assistance dog from the Irish Guide Dogs, will be with us a year next month. This amazing girl has been a blessing, she has made a huge impact on our family life. She is so tuned in to all of the kids needs although she was matched with Bodhi it was like she was made for us all.
Ian chats the ears off her on walks, she helps my daughter sleep in her own room, when I was very sick in April she woke Ian in the middle of the night when I had a fever and slept outside my bedroom door for two weeks.
She is my seventh child and has taught my children independence, confidence and empathy. I knew it would take a very special dog to come into a house to cater with so many needs and it is not lost on me that we were blessed, my thinking is doing the climb will possibly pay this forward for other families living with autism.
SHINE CENTRE FOR AUTISM
Shine Centre for Autism was our first port of call when our son was diagnosed in 2016. Since then two of our children, Bodhi and Indie, have attended the ELU there in Carrigaline and it laid the foundation for us to give them the best start and treated them as individuals.
It was also the first place where we could stand at the door and be surrounded by other families and staff, who didn’t bat an eyelid if your child had a meltdown as we were all in the same boat. My older children were able to attend SIBshops, I can pick up the phone and call any of the staff with any questions and their services are free, the advocacy is invaluable to families nationwide. It seems the word autism adds euros onto the price tag of fees nowadays and know that there are genuine experienced people out there who don’t gain anything from their offer of help is great.
SONAS JUNIOR SPECIAL SCHOOL
Sonas Junior Special School Carrigaline was the next stop on our road, Bodhi attended for two years and Indie has just started. To say they made a difference would be an understatement, I have been writing a blog for a few years and anyone who has followed me from the start will always comment or message me to say the transformation in Bodhi has been astonishing while there. It takes a village and the staff and families we met and who helped us due to the connection with Sonas, have and continue to be amazing. If you speak to any parent whose child has left they will immediately say “just take us back to Sonas”.
There are 42 children attending here and as they leave 42 more will continue to take their place every two or so years. It is imperative that funding is there to provide these children with the independent living skills they need at this young age.
What they learn here is crucial and it bridges the gap between parents and services such as OT, SLT and therapies such as music, the outings on the school bus, even going to the shop to buy ingredients to come back and make are things that parents sometimes cannot do as the child isn’t open to learning this within the walls of the home. They open our children up to experiences and activities that we never get a chance to or would never even realise our child likes to do as they can’t tell us.
It also means that as parents we get a few hours of peace of mind, knowing our children are in the hands of people who are excellent at what they do and do what they love.
Due to Covid restrictions, my fundraising plans have come to a standstill. I had some amazing school visits planned and we had two more big fundraisers that had to unfortunately be cancelled, so I am appealing for ANY help at all towards hitting our target for our big climb, even €2 would be hugely appreciated.
100% of all monies raised for our Kilimanjaro climb will be split between the three causes above. We are covering the costs of the trek ourselves.
We are just over €7,000 short of our target of €38,682 — the basis of this thought is Kilimanjaro is 19,341ft; the aim being we raise one euro for every foot up and every foot back down.
We will be on Kilimanjaro for 11 days in total, it is a mammoth task, a huge undertaking and Im not going to lie, I sometimes think ‘Woman, what are you doing?’
In this day and age, you have to go to the top of the highest mountain in Africa for a bloody break, although knowing my lot, one of mine will be at the top before me, asking me “Mom, what time will you be back?”
If you would like to make a donation please go to www.ifundraise.ie/20KforKilimanJ Check out my daily stories or follow me on Facebook for the latest updates Out in the Sticks with Six