I was recently approached by someone I feel very lucky to now call a friend and asked if I would like the opportunity to share my story, in hopes of raising awareness and perhaps reaching out, if only to one family letting them know “you are not alone”, help is available and asking for it is often the bravest thing you can do.
At this point I feel I should warn you, like many who read this, I’m a mom of three incredible young people with ASC, but I am also Autistic, which means when I do something, I do it all the way. This will be detailed and long but I implore you, please stick with it, sometimes in order to go forward we have to look back, the people involved here deserve detail, time and recognition.
Seventeen years ago I was lucky enough to meet my soul mate and life partner Kate. Although she wasn’t a biological parent Kate soon became mom to our three children Michael (now 25) Natalie (now 22) and mason (now 17).
Our life was much like any other, days out tailored to mine and the children various needs, family holidays, birthdays, Christmas and everything between.
Like most of you we had our share of consultant appointments and specialists too, we would late find out that both Natalie and Mason also had Tourette’s syndrome but we faced it like everything else, as a family.
We lived, unknowingly, in this bubble we had created. I had my roll and she had hers and between us and all the love our little family needed we raised our kids, fighting as we all do, for all of their needs.
Michael would do well in School and College then go on to University, gaining his Bachelor’s degree in Computer Science. Natalie struggled in school but worked very hard, she went to college and after four years gained a level 3 diploma in animal management, she is now a published artist. And the baby of the family Mason, who struggled more than his brother and sister and actually missed 2 years of secondary school, left Queensway north with the highest grades of his year, he is a talented musician and, currently at college studying Motor Vehicle Mechanics.
Our life wasn’t perfect but it was full and everything we faced; we faced as one. I faced serious health issues including two strokes and cancer but though it all Kate was at my side. Holding my hand and explaining (sometimes very abruptly) to medical staff. How and why, I needed things to be a certain way.
Five surgeries and she held my hand as I was anaesthetised and was still holding my hand when I woke, nothing was ever too much, we never needed or asked for help. In fact, we prided ourselves on our independence. It was never easy, but it was worth it. being alone never bothered us, in fact when the Covid Pandemic hit and panic broke out I clearly remember us being completely unphased. We never had visitors because we didn’t really like people and we never really visited busy places, we preferred being in the middle of nowhere with a picnic blanket and a kite or night time rides with a telescope and hot chocolate.
Our world was so small and complete, and we were so happy. I cant tell you how many times I’ve wished that was the end of are story, just sixteen months on and it already feels like a beautiful dream.
In September 2021 everything changed, that month Mason had started college, we had taken some trips to favourite places, life was
going well. The children and I came down with a stomach bug, it was nothing too serious and Kate jumped into action with home-made soup, cuddles and Disney movies of course.
A week later Kate started the day well but by evening she had the same symptoms we’d had, stomach upset and feeling unwell. I stayed up with her that night getting drinks and hot water bottle but by morning there was no improvement. The NHS were already turning people away and so even calling Shrop doc never occurred to us, why would it? not for a stomach bug. But upon helping Kate back to bed she fainted. At this point I called 999, she was obviously more dehydrated then either of us thought, and though she was upset at the thought of going to hospital she relented and I packed a bag with essentials in. The ambulance came and paramedics decided that her blood pressure was a bit low so they would take her to Shrewsbury.
I was advised to call in a few hours for an update and hopefully we could arrange transport to pick her up.
There are a million details that my autistic brain could write here, the music that was playing on the radio, the smell of coffee from the kitchen, what I was wearing but I cant tell you how long the call was, I cant even remember if it was a woman or a man. What I do remember is sentences.
“Condition is critical”
“Going into theatre”
The 24 hours that followed that call are and will always be the most difficult of my life and I hope you excuse the lack of detail, on Sept 24th, just 24 hours after Kate was admitted to hospital, she passed away in my arms. Cause of death, a blood clot causing septicaemia and organ failure.
Our world was torn away without warning, I had lost my best friend, my soul mate, my carer and our children had lost their mom.
What on earth were we going to do??
Kate had protected us so well from the world, but she was gone. I faced planning a funeral, and all of the legal matters involved, I hadn’t even been to Aldi alone in 17 years how was Mason going to get to college? Did we pay that water bill? I know that’s thready, but when you’re in shock and grieving, nothing makes sense, but add that to what I can only describe as the most intense, never ending sensory overload imaginable and it still won’t come close.
We were dropped into this ice-cold grief with absolutely no help in sight. I wonder still how we got through it, but the truth is we didn’t, we’ll be grieving for a long time to come.
I suppose that brings us to the point of this very drawn out essay, which goes something like this.
“I need help, we’re autistic and my carer just died”.
I’m not sure if thats word for word but its pretty close.
I had seen PODS on Facebook and I think Kate has asked another parent a question regarding an EHCP at some point but that was the extent of our involvement.
Elaine Pearce (PODS) was very quick to respond, I think she asked some questions but honestly I was so afraid at the time, its hard to recall, but i remember being extremely frightened. I thought that I’d be found unfit, all I could think was without Kate, I can’t do this. How can I take care of our children when I can’t take care of myself?
To add to this you can only imagine the anxiety and stress, for a family that didn’t cope well with change in an everyday situation, our whole world was changing around us at rapid speed, as a parent I
just wanted to protect my kids, but excepting that, meant brining strangers into our home, something we had never done.
I remember the first time I met Elaine Pearce, she had asked if she could visit us just a day or so after I contacted her, she arrived with her colleague, a man she introduced as Kubby PODS, Be Happy) I cried through most of that first visit, Elaine offering comfort and Kubby taking notes, they met the children and formulated a short-term care plan.
That visit was so incredibly vital. The impression we were left with was “yes they’re strangers, but they speak our language”.
And their message was clear “we can help! one step at a time, we can help”.
The weeks and months following that first visit gently developed trust and rapport. At every step mine and the children needs and best interests were first and foremost, a new routine was established, where everything we needed, from shopping to hospital appointments meant that we were supported.
The PODS team started to bring in other services, taking their time to explain the rolls these services could provide and of course get consent. Sally Moran from strengthening families, was (and I’m sure she wouldn’t mind my saying) a tough visit! Although accompanied by Elaine, I recall a reaction of “don’t bring her back” its funny now when I look back because Sally is absolutely amazing, but we had never encountered someone with such a no nonsense work ethic. That’s not to say she wasn’t sympathetic or caring, far from it.
But she was there to do a job, and her job was to ensure we had every kind of support needed available. PODS also helped contact student transport, Mason attend college but he couldn’t travel by bus and we no longer had a driver available.
Through strengthening families I had help with finances and very soon sally had outlined a plan and social services became involved.
For me personally social services were the most challenging, I found them very hard to work with but I needn’t have worried, they liaise with Sally, Elaine and Kubby and a care package was outlined for myself and the children.
It defiantly wasn’t as simple as an application, there were many meetings, lots of calls and an abundance of frustrations but at every point we were supported, when things became too much or felt completely overwhelming Elaine or Kubby were right there, reassuring me that “its going to be worth it”
Sixteen months on and our lives are very different, we have grief counselling, two lovely fulltime carers, new routine, no debt worries, Mason has transport to college and is doing well, Natalie has local voluntary work and is pursuing her art, Michael just moved in with his fiancés and the wonderful staff at PODS have become much loved friends, even Sally from strengthening families grew on us, she’s a wonderful woman and we wouldn’t have survived without her.
In a relatively short period of time and through that single Facebook cry for help we have been involved with more services than the entire seventeen years previously and I sincerely apologise if i haven’t named someone.
The pride we had in never asking for help was great, but ultimately it put us at risk because nothing in life is certain, we could never have foreseen losing Kate and never questioned the role she played and what that meant. The many services involved with my family now are vital.
Being dependent on them does not mean we are not independent; our choices and actions are still our own. We are doing things now that I never dreamt were possible. We’re fond of trips to Blists hill with PODS and thoroughly enjoyed the Queens Jubilee.
Our grief is still very raw and every day is a challenge, but we never face it alone. We now have a whole network of wonderful people supporting us, I don’t have to wonder or worry.
If there was a message I’d want to convey here and if you’ve braved this to the end, it would be this.
Ask for help, you are not alone. A single message from a desperate, devastating situation was just the start for us. The help really is out there.
Its sometimes hard to imagine when you’re traversing the ECHP process or fighting for the rights of your children, but I’ve been at rock bottom with no light or hope in sight. I promise you, help is out there!