Special needs parenting: Love, determination and fury

Special needs parenting: Love, determination and fury

The first time I held my eldest as a newborn, it hit me that my needs would never come first again. It may sound strange, but it hadn’t quite occurred to me in the previous nine months that the life chances afforded to this tiny human in my arms was up to us. In my exhausted, slightly befuddled state, after a 32-hour labour and emergency caesarean, I promised him unconditional love and that I would never let him down. 

Within hours of his birth, I could recognise his cry from the other babies. It was louder for a start, and quite indignant. He came out that way, the volume of his scream so ear-splitting even the doctors looked a bit shocked. Almost two weeks late, he’d clearly been quite happy where he was, until he was rudely grabbed by gloved hands and pulled from his place of comfort. Not quite so comfortable for me, I can tell you. 

All-consuming love

But my heart burst with love so intense it consumed me. My tiny human, whose future was in my hands. The thought guided everything I did, from being determined to breast-feed, despite no guidance from the too-busy midwife, to lovingly making, home-pureed baby food, frozen in ice-cube trays. I dedicated every waking moment to ensuring everything I did would have a positive impact. I was a mindful parent before mindfulness was invented, driven by a need to make up for the deficits in my own childhood.

His birth was the last time he was ever late for anything. He talked early, loved jigsaws and duplo, loved to “read” and rarely slept for long. The child was a whirlwind, walking at 9½ months, then a frequent-flyer at A&E for running into things, not noticing anyone or anything else. He was banned from toddler gym by age two for his Tasmanian Devil-style circuits of the gym equipment, knocking mere mortals out of his way or trampling them underfoot. Where had this kid come from?

I bet some of you are nodding your heads with recognition. The child with undiagnosed ADHD, “as if driven by a motor” as the assessment checklists say. 

Then he’d flop into a heap and be out cold for an hour before being ready to go again. 

A love multiplied

When his younger sibling arrived 19 months after him, I wondered how I could have as much love for another child. But as every parent with more than one child knows, you just do. Your heart is an infinite vessel filled to the brim with love. Loving a second, and subsequent children takes nothing from the first. I had to explain this to him when he worried he had to share a finite amount of love with his younger sibling. My love for him didn't have to be shared, it was all his and always would be.

The new baby was quiet, sleeping, barely crying—until prodded none too gently by their big brother. My husband and I looked at each other and said in wonderment, “Oh, a real baby!” How cute! 

But No2 was had an unstable hip that was slow to heal. Then they needed an operation at five months. At 13-months they started suddenly and terrifyingly turning grey and collapsing, not breathing, up to three times a day. A diagnosis of reflex anoxic seizures followed. 

As every parent knows, along with the love there is a band of fear and anxiety of anything bad ever happening to your child. It tightens a bit, or a lot, depending on the severity of a situation that's out of your control, sometimes making you feel like you can barely breathe. Every time a seizure occurred, it gripped me. I had to learn to be calm and breathe despite the tightness, so it didn’t reflect back to the children. Sometimes, I didn't succeed.

A new and worrying world

Our lives began to follow a pattern so many of you will recognise. A new world of medical appointments and tests and more diagnoses. Then, the world of education.

We’d hear from nursery that there’d been an incident, or something unusual had been noticed. That behaviour was out of the ordinary for some reason, but they’d grow out of it. That they were both very bright, but something was… different. Eldest exasperated them. Youngest’s cuteness was adored but emerging difficulties dismissed as being, “young in the year”. 

These were the early days of the internet at the turn of the century, but there was still enough online and in books that pointed to reasons. “Indigo children”, an early name for neurodiversity, perhaps. “Parenting your Spirited Child”, 1-2-3 Magic. Then on to Tony Attwood and Thomas Brown. 

Despite my mindful parenting, conversations with school staff revealed they suspected I was a “bad parent”, unable to instil discipline. As a mindful parent, this was horrifying and enraging. This was nothing to do with parenting, it was real! Being disbelieved by people in authority is incredibly disempowering.

You can buckle. Or you can fight back. For me, there was no alternative, because it wasn’t about me or my feelings. 

The fight-back

The overwhelming love for my children and my determination not to let them down, drove me on to find answers.

I did research, I asked questions, I sought advice from specialists half-thinking they might also think we were just rubbish parents. But our concerns were confirmed and investigations into what might be the cause began.

Vindication doesn’t make you feel triumphant. It makes you furious that your concerns and instincts were rejected. But again, it wasn’t about me. 

Fury can be great to fire you up, but if you don’t learn to manage it, its effects will destroy you. And this is a marathon, not a sprint. No one’s perfect, controlling anger isn’t always possible when you’re overwhelmed. But simply holding it in can cause more harm than good; suppressing it isn't the same as finding positive ways to manage it. Some run, some do yoga, others let off steam socially with other SEND parents.

I write.

SNJ has managed my anger. My jungle is filled with scary monsters and I am armed with a MacBook Pro, a well-known smart weapon with a laser-sharp aim…

ADD/ADHD: The same yet different

It made no sense. How could these two children have the same parents, the same environment, the same food, the same love and care? Yet they were total opposites. One independent and openly defiant, the other reliant, quiet and clinging.

But, eventually, they had the same core diagnoses: ADHD and Autism (then as Asperger’s) and, more lately, Ehlers Danlos syndrome (among other individual diagnoses). The big difference is that one has Attention Deficit Hyperactivity Disorder and the other, Attention Deficit without hyperactivity.

This is what many school practitioners fail to understand: that children with the same basic diagnosis can present completely differently and have wildly different needs. Even siblings. Diagnostic labels are very useful as a gateway to support, but beyond this, the support should be led by the needs of the individual child, not the label. 

Outcomes come after provision

Many years have passed. Statements obtained, then EHCPs. Specialist schooling obtained, attended, and graduated with bags of qualifications. They're now young adults and I’m no longer required to advocate for their educational outcomes. They’re now at their respective universities and out of my control. Dear reader, it’s terrifying.

It's hard, letting go of the handlebars so they can ride off into their adulthood, where mum isn’t there to stand between them and trouble. Hard, but necessary, according to their needs. One doesn’t need it. For the other, advocacy continues in other forms for other reasons; other battles for support and acceptance not yet won. But we will get there. 

But the love is the same.

Unwavering love for them has been my strength through everything and will continue to be. It’s been the one constant, and no matter their age, it will never change. The anxiety is still there too, and that must be quietly managed from afar, aided by WhatsApp and mutual Google tracking. 

Parenthood hasn’t been what I expected. How could I expect something like additional needs that I knew nothing about? I sometimes ask myself, if I knew then what would unfold, would I still do it? 

The answer is yes. Because despite everything, the love is worth it, many times over. It’s like nothing I’ve ever experienced; a daily, unconditional reward that reminds you why your determination to get them the support they need can never waver. It’s as involuntary as breathing. And now, as I await the arrival of my first grandchild, I look forward to the dazed look in eldest's eyes when he discovers all this for himself.

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Tania Tirraoro

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