I have no idea how to make this blog look pretty, my technology skills are that of a 5 year old. No, scratch that, a five year old could probably build a lovely blog, with pictures and all sorts. Maybe even some little videos, or tiktoks, or some other genius intraweb tricks. Sorry, these are not part of my skillset
But I do have some things I have learnt, and some things I need to say. I have been through some times in my life that I wasn’t sure I would survive, and right now I’m in the thick of one of them. A while ago I decided to give up writing for a bit. You get kind of bored of your own self harping on about your own problems. I do still get requests for my book, and more importantly I get messages from people who genuinely feel that it helped them through their own hard times. That’s gotta be worth something, right?
And what I’m going through right now I suspect may resonate with a few.
Right from birth, right from diagnosis, right from the minute it’s apparent there’s a problem of sorts with your child, it becomes all consuming. For those of you who’ve been there, I don’t need to go into too much detail. The different therapists, the invasive testing, the MRI’s, the CT scans, the EEG’s, the home programmes, the ABA therapy, it’s fucking endless. It wears you down, especially when you realise that nobody has all the answers. A neurodivergent brain is a very unique thing. As one of the last professionals I consulted said “If you’ve met one child on the autism spectrum, you’ve met one child on the autism spectrum.” So the lack of manual, for yourself and any of the professionals, is alarming and devastating. So you just kind of muddle your way through, doing the very best you can, and pray for a good outcome, for your child, and for your family.
It’s tough on your marriage, and it’s tough on your family. They call them glass children, you know? The siblings of the one with special needs. Not because they are fragile, but quite the opposite. They feel invisible, not seen, as all your attention and focus is literally drained from you. They become withdrawn, and kinda retreat from the family, and just get on with their lives as best they can. And you try, you really try, to distribute your attention better, but often it’s just not possible. Not physically, not mentally, not emotionally. It’s. Just. Not. Possible.
So there’s a nice little bit of mom guilt right, which sits like stone in the pit of your stomach.
And then there’s the opinions and judgements of others. As moms, we often feel judged. As special needs moms especially, I’m sorry to break it to you, but it’s not your imagination. Firstly there’s the judgement of what you must have done or not done or done terribly incorrectly to cause this condition. And you kinda want to wear a t-shirt that says “He’s Autistic. They checked, okay? The did all the fucking tests and it’s not my fault.” In fact, I may start to produce these t-shirts. Could be a lucrative side-hustle.
And ,if they’re not judging you on the cause, they certainly judge you on how you deal with it. “It’s because they give it too much attention/ not enough attention.” “They are putting too much pressure on that child/ they are not pushing the child hard enough.” Oh, honey, I’ve seen and heard it all. Not said to you directly, mostly, because who would do that? But my journey with special needs has been a long one, and I have heard a million different versions, on a million different days.
And you take things day by day, and you try and ignore it, and you continue to love your children as much as you can, and do the best for them. But sometimes, and hence this particular blog, you just don’t know what that is.
It’s not been a picnic, that’s for sure. But at 16 years I had managed to raise a happy child. Well-mannered, much loved, a healthy sense of self esteem, an interest in the world around him, and empathy for the people in it.
And then. There it was. The fuckening.
Meltdowns are part of ASD parenting that few can understand. A handy thing to remember if you are a mom of typical children, is that this is not the same as a tantrum. It is like comparing a sore toe to a foot being amputated without anesthetic. They cannot control it, and once they are in it, you cannot reach your child. You cannot reason with them, bribe them, punish them, cajole them out of it. It is often impossible to identify the triggers, no matter how hard you try. If you identify them, you could try and avoid them, right? But it’s often a really complex mix of factors.
We’d learnt all the tricks, been to all the training, done all the reading and all the research. And we are damn good parents, who understand how to calm, how to distract, how to redirect, how to soothe. We fed the right food, we followed a good routine, and we gave all the right supplements. As we learnt more, we kept trying harder. We have a local team of experts, a traditional medical doctor who specialises in ASD, a psychologist and a holistic doctor.
And suddenly, it felt like overnight, nothing worked. When meltdowns came, they were so severe that it became impossible to live a normal life, to have any sort of home normality, to hang onto the teeny tiny bit of sanity you have. When that time came, our regular professionals all said the same thing….this is beyond my professional scope of expertise, you need Psychiatric intervention.
For 16 years, I had never chosen to medicate my child. I still don’t choose it. I am deeply and desperately conflicted about it every single day.
But it feels like it was no longer a choice. We were a family in complete crisis. And as my husband (lifelong non-believer in the medical profession, total rebel against big Pharma) wisely said “I guess that’s why they don’t have Homeopaths Beyond Borders”. Sometimes, you have to make a big scary choice.
We went a facility for 2 weeks, Boy 1 and I. It was a hellish time. When your child’s brain short-circuits it is a really scary, really heartbreaking thing to witness. Most facilities don’t accept the parent with the child, as it’s so traumatic.
But we found one which did, both a blessing (how could I leave him to deal with this alone) and a curse (man, did I fight with those doctors. I questioned their every decision. I wept and I wailed and at times I raised holy hell. I educated myself as well as I could on the medicines, their benefits, their side effects. Doctors LOVE it when they get a mom like that, they really do. One whose google research reveals all kinds of possibilities, all kinds of theories. They just love it. Suffice to say, I was not winning awards as most loved mother in the place. But at some stage, if you decide that this is something that you need to try now, you HAVE to trust the professionals, you have to trust the process. You have to. You have to stop fighting. But, man, is it hard.}
So that’s where I find myself now. I love my children (including my glass one) with every fibre of my being, I would do anything, anything for them, for their happiness.
But right now, with Boy 1, I sometimes find myself with a strange teenager living in my house, a total stranger who is often not even likeable, much less lovable. I give him all the pills I’ve been told to. And when things are good I get so excited and every part of me wants to believe we’ve turned a corner. And suddenly, when they are bad, I feel entirely bereft and hopeless. Utterly, utterly hopeless. And the doctors say trust the process, it will take time. And my brain says “You have to listen to them” and my heart says “What if they’re wrong? What if this path is making everything worse?”
And you watch so closely, it’s constant and exhausting, the monitoring, the worrying. And it gets so confusing, because my child ain’t no fool, and he’s realised that certain behaviours get a kind of “all eyes on me” attention. So which of these behaviours are involuntary, and which are of them are attention seeking? So which behaviours need patient love, and which require consequences?
There is not an expert in the world who can help you with that. And so your family has to go it alone, and figure it out.
Only those of us who have been there, in the trenches, will ever fully understand. And I guess that’s my point. I need to reach out to other moms who have been there. I need your advice, I need your support. Most days I feel like I’m losing my mind. Do you hear me? Because we need to help each other. My heart is breaking. Every. Damn. Day.
If you’ve been in this situation, please reach out. You can comment, or you can send me a mail to jkyeats13@gmail.com
I can’t promise I’ll respond. I can’t even promise I’ll get to reading it right away. But damn, special needs sisters, surely SOMEONE out there has some answers?
In the meantime, I continue to pray. I continue to remember to breathe. And I continue to love as hard as I can.
Sending you all love, and above all, strength. Lord knows, we need it.
Love Jami, desperate and exhausted mom.
xxxx
crazybutterflylady 