The road we’ve stumbled along to get here

This is a personal post, not about Alex, but rather about my own journey since he’s been in full-time care. Well, actually I guess it starts well and truly before that…

I have always been a full-time mum. We home educated for 15 years for various reasons, and even though I did a few stints of (very) casual employment or multi-level marketing gigs every so often, my focus has always been on being a mum and wife. I didn’t plan that to start with – I was quite a modern girl who was of course going to go back to work once I’d popped my first child out. Once she came into our lives however, I couldn’t bring myself to leave her to the care of someone else full-time. Not just because of the struggles she had just trying to get through life, but because I figured that if I wasn’t going to be committed to giving her the best, why would anyone else?

So we’ve always been a one-income family, and for most of that time, it’s been one part-time income, because our kids had needs beyond what I could meet on my own. Thank God for an awesome husband (you’re the best babe)! I learnt many new skills through my parenting journey – patience being one that I still struggle with today, as I’m NOT a naturally patient person. Another thing I learnt was having to ask for help just to keep myself from drowning. While I got better at asking for help, unfortunately our society didn’t get better at providing that help. We spent years going from one ‘professional’ to another, with no answers, only more questions and slurs on every single parenting technique we tried. And we tried many, believe me! We worked our way through “1, 2, 3 Parenting”, “Positive Parenting”, “Crystal Children”, “Attachment Parenting”, “Natural Parenting”, “Biblical” parenting and on and on.

What I learnt from each of those was that they all said they had ‘THE’ answer, yet none of them did. None of them accounted for the individual needs of my first born child, let alone those that came after, or the family dynamic as a whole. I kept what was useful (like “pick your battles”) and ditched the rest. What worked for one child didn’t work for the next. I’m sure you’ve been there! If you’re an Autism parent, you’ve probably also been in the rooms of yet another specialist who tells you to “just try this magic bullet” and you look at them in disbelief. By the time our eldest was 10, we’d accepted that she had a disability that just didn’t have a name, and nobody could help us with how to prepare her for life. We were on our own.

So we kept soldiering on – just a mum and a dad, trying to do the best they could for their kids. The same as everyone. Until we had Alex. His needs overwhelmed us completely. Things started to slide – we started to spend less and less time with the other kids because his needs were too great. We found out about Autism, and within the space of twelve months, four of our children had a diagnosis. I threw myself into research, we changed our diet completely, got lost in the world of Autism therapies and I stopped being a mum and wife. I was now an Autism parent.

  • Alex smiling at his mum on his first Christmas
  • Baby Alex looking at the camera
  • Alex being very cheeky and cute
  • Alex being so very happy
  • Alex eating birthday cake

The Autism parents I ‘hang out’ with, are Warriors. They research more than any PhD student ever does, learning how to analyse scientific studies for themselves and do their own meta analyses. They learn about diet, the gut microbiome, neuroplasticity, biochemical deficiencies, the latest on vagal nerve theories, and follow (read: stalk) researchers online and in real life. They network at seminars, swap notes from webinars, and organise speakers to present the latest research to other parents. They spend thousands of dollars every year just on health assessments – urine, faeces, blood, saliva and hair. If the body has a substance, they’ll know how to get it tested and will know how to interpret the test, as well as what actions you need to take as a result. They seriously rock.

They became my family – the ones who had my back when I was stuck or didn’t have the mental energy to keep going. They believed in me and helped in any way they could, even financial. If Alex was not eating, they had suggestions. If Alex was self-harming, they sent me supplements to try and positive vibes. When I needed a new practitioner, they gave me a list of who to contact. They even organised a cleaning service to come in and scrub our house down! If I hadn’t had their support, I would have gone under a long, long time ago. Our reality however, was that we still couldn’t keep our heads above water. We were barely functioning for a long time, and eventually we had to admit defeat. So Alex went into ‘respite’ and we officially relinquished.

We relinquished because we just couldn’t do it anymore. We couldn’t help Alex, we couldn’t look after our other children and we couldn’t look after ourselves. We had asked and asked and begged and pleaded, and there was nothing and nobody there to help us. We thought the unthinkable several times, and realised that relinquishment was actually the best option we had left.

The short story is that DHHS didn’t accept our relinquishment, and between them and the NDIA, funding was provided for Alex. He was sent to Irabina Autism Services for intensive, live in therapy for four months. That’s what the NDIA said, but due to their incompetence, he ended up being away for twenty months. I’ve posted about it before, but yes – I’m still bitter. During that time, we had monthly visits, very irregular video calls and sporadic reports as to his wellbeing. We were told he was ‘doing very well’ and had improved in a lot of areas. A few reports were written about how often he self-harmed, vocalised or attacked others – all of it clinical data taken in his clinical living environment. “All was going well” is what we were constantly told.

We didn’t want him in care. We wanted him at home, but with his needs and those of our other children, that was not an option. We felt guilty as hell for ‘giving up’ on our child. We know the increased risk of abuse and neglect for anybody who lives in care, and that the rates rise hugely for non-verbal, intellectually disabled children like Alex. We tried everything we could, beyond the point of what was sensible or reasonable. We sacrificed our other children and their needs, our own individual needs, and our marriage to try and make it work, but we still couldn’t do it. Some would say we gave up or didn’t try hard enough – and I was often thinking the same thing.

We know logically that we chose the best solution available to us at that time. I regret that we ever had to make that decision, it should never have gotten to that point, but it did. It still hurts.

Once the NDIA finally got around to bringing Alex home, there was the small matter of where he would live. We had concerns. A great many of them in fact. While we knew he’d made progress, we also knew that his Irabina home was vastly different from what his family home would be like. We were concerned over how he would handle other children in his face (literally) for hours on end. How would he cope with not having our undivided attention, when he was used to having between one and four people watching him every single second of the day? Given that he’d done so well with a strict routine and structure, what would happen when we invariably couldn’t provide him with that?

We were also worried about the rest of our family. We had gotten used to being able to spend time with the other kids and didn’t want to give that up again. We also enjoyed being able to leave a book, school project or jigsaw puzzle on the dining room table. With Alex at home, that would not be possible. Our kids all have anxiety, and two of them will not come out of their rooms if ‘strangers’ are in the house. ‘Strangers’ include friends and relatives, not just the endless stream of therapists and support workers we would need with Alex living at home. Two children in particular also tend to have very spirited (loud) discussions on a daily basis – something that would need to be avoided after Alex’s return. There were a lot of things that would need to change again with Alex back at home – and there was no indication that home would be in his best interests, either.

Thankfully we didn’t have to make that final decision, because we had to have home modifications done before Alex could safely re-enter our home. The planning process for that took a while (of course), and he had to relocate before it was finalised. Which is why he ended up living in what is basically his own house, with his own staff. A care organisation bought a house and sourced staff to work with him, and funding for all this is split between NDIS and DHHS.

Since he has been out of his clinical Irabina environment, we’ve seen a LOT of behaviours that we thought were ‘extinguished’. Behaviours which mean that he won’t be able to return to living in our home for quite some time, possibly ever. I promise that in the next post I write, I will go into more detail about those behaviours, as people have asked how Alex is doing.

  • Alex playing on his car
  • Easter egg collecting
  • Sharing his teddy bear
  • Alex the bear
  • MOrning snack
  • Caught on camera
  • Don't take my picture

Between planning for the move, and then having Alex back in Bendigo, we’ve come to some pretty stark realisations. We had naively thought that once Alex was back within easy driving distance, we’d be able to be parents again. That hasn’t really happened. We spent hours every day on ‘administrative’ tasks related to Alex’s care. Constant daily emails and phone calls plus meetings four to five times a week, meant we were struggling to fit in time to earn a living. We even did some care shifts, because there was an issue with getting enough staff in. So much for still spending time with our other children!

Up until a few weeks ago, every visit we had with Alex caused me to have a PTSD flare up. Not because of Alex’s behaviour, but because every time we came out to his house, we saw things being neglected, items missing, and Alex receiving less than ideal care. I ended up having to stop visiting for a while, as I started having heart problems from the stress. Even my hubby, who is one of the most chilled people I know, was so badly stressed that I was waiting for him to have a heart attack any second.

Unfortunately the organisation we work with is still trying to sort their procedures out, which is why a lot of things slipped through the cracks. Staff are constantly being ‘trained’, yet despite this there are an awful lot of issues with staff doing what they shouldn’t, and not doing what they should. I’m sorry if this offends any staff who may read this, but as we’ve said all along, “Not everyone is suitable for working with Alex”.

I’m sharing this because I am pretty sure I’m not the only one who has been through this. Over the last six months since we’ve had to work all this out, I’ve been feeling:

  • Relief at the thought of Alex coming home or at least being where we can see him more often.
  • Trepidation at how it’s all going to work out.
  • Shame at having a child living in full time care. Not just from having to say, “I can’t do it anymore”, but also because relinquishing a child is seen as giving up by those who haven’t been there.
  • Frustration over the incompetence of others who are supposed to be looking after my child.
  • Worry over his physical health and wellbeing, when simple things like making sure he’s eating and going to the toilet are just not important to carers.
  • Fighting those “middle of the night” thoughts that if he’s ever being abused, I won’t know about it.
  • Stress for any and all of the above, and the constant bureaucratic stuff ups we’ve run into. Issues like him not being given the medication he’s been prescribed – you know, the unimportant things (yes, that is sarcasm).
  • Grief. Grief at a disability that robs someone of so much. Grief for the siblings who won’t ever be able to have an argument or a shared laugh with Alex. Grief that we’ll possibly never know what he’s feeling or thinking. Grief that our twelve year old child can’t live with us. So. Much. Grief.
  • Burnt out. Feeling totally and utterly depleted from the daily fighting with care organisations (which should probably be an oxymoron), coordinating school and therapists, following up (read: nagging) of those therapists, filling in copious quantities of paperwork, and the many, many, many meetings we apparently need to have.
  • Pissed off that we are expected to stop gaining an income, stop spending time with our other children, and put everything else on hold so we can be there for meetings. Meetings that usually didn’t require us there, didn’t have anything new to say, and didn’t end up making any difference for Alex.
  • Angry and guilty because with all of the above, we still haven’t spent much time with Alex.
  • Even guiltier because we have far less time for our other children, and even less energy for them.
  • And I’m coming back to shame – because when you identify as an Autism Warrior Parent, having to send your child to care is just not something you do.

I don’t have an answer. I have not found a magic bullet. What I do know, is that sometimes you have to get to completely broken, before you can start putting any of those pieces back together.

Sometimes, you have to be prepared to let go. I had to let go of Alex. Not just once, but several times. I had to let go of my own ideals of parenting. I had to let go of feeling that “I should…”. I should be there for him. I should be able to visit him every day. I should be able to make his food when the carers can’t be bothered. I should be able to spend time with Alex, and his little brother. I should be available for the siblings still living at home, and those who aren’t. I should be able to stay on top of the children’s therapy needs and schedules. I should be involved in each of their therapy sessions. I should be able to run a business while managing disability needs and varying schedules, as well as being a wife, daughter and friend.

You know what?

I should be able to breathe.

I should be able to go to bed and not have to cry myself to sleep.

I should be able to laugh with my family.

I should be able to feel good about myself.

And so should you.

Alex with a sticker mat