When You Still Get Flashbacks To Diagnosis Day

img_0034Some days stay in your memory for a long time; the day you gave birth, your wedding day perhaps, or even the day you graduated from high school or university. Unfortunately for me one of the days that is stuck in my mind is the day my precious son was diagnosed with autism. I am not alone in that either.

I put it to the back of my head most days. I rarely read the report I was sent as it always brings me to tears. Time passes. My child grows and develops, but still some days I look at him and I am right back there in that waiting room when he was at just three years old waiting on his final assessment for a life long diagnosis. I knew before they said the words. I thought my heart and my mind were prepared. It turns out I was wrong.

I was utterly devastated to hear my son had autism.

People tell me I should not have felt like that. I have been told that he would pick up on my feelings and feel rejected, that autism is just a different way of processing things and that my son is still the wonderful boy he was before that day.

I still cried.

I cried for the child I thought I would have. I cried out of fear and worry. I cried at the thought my son would struggle more than I ever wanted him to. I cried that my instincts as a mother had been right all along. I cried not for my son..I cried for me.

Autism was something that would stay with my son all his life. That can be difficult to comprehend when your child is not even at school yet.

When he was diagnosed he was only just walking. He had no language and little awareness of the world around him. He didn’t know his own name. I had no idea if or when any of that would change. He was diagnosed and then we went home. No-one offered me hope.

It was a dark day.

I could take you to that building even now despite four years and five months having passed since we were there. I still see the waiting room in my mind, I can smell the sterilised toys and the wiped down plastic seats, I can hear the voice calling my sons name. It was like time stood still that day.

As my beautiful boy sat in yet another waiting room last week, on yet another plastic chair, I had a moment of flashback to diagnosis day again. Except this time I didn’t cry at the memory, it was more of a shadow in the background.

It has truthfully taken me many years to get to that point. Some days I hate even being referred to as ‘am autism mum’ as that just makes me think back to that defining day when they mentioned autism for the first time.

My son has autism. I can say that now.

Today I say that with pride and a smile. My son is still non verbal, still not potty trained and still requires round the clock care. He has no idea of what happened the day he was diagnosed and probably never will. That day in 2012 never affected him in any way, but it defined me as a parent.

Wether you have fought for the day for a long time, or came away from the appointment in total shock, diagnosis day is huge.

I know I am not the only parent who has taken years to process my sons diagnosis. I am not the only person to have flashbacks to the day they told me my son had a life long condition with no cure.

So what helped me the most to stop those flashbacks and memories from taking over? Hearing this brown eyes boys laugh, watching him smile and realising that he may have autism but autism in no way defines him.

We are doing ok. We are a team. I help him and he helps me too. He is replacing the memory of that day with better memories every single day of his life. I hope I get flashbacks to his hugs for many years to come.

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To the child at the awards ceremony who knows their name will never be called.

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Ah, end of term.

Sports days, shows, school trips, report cards and of course the all important end of year award ceremony. Proud parents just as excited as their children, relieved teachers glad to show that someone really loved their teaching and halls full of eager little ones hoping and praying their name will be called.

You already know social media and family gatherings will be all about little Jane who had a distinction in maths, or young Brian who scored the most goals for the school football team this year…but what about all those children sitting through the ceremony year after year longing for their name to be called yet never hearing it?

What about the children who have found the school year exhausting, who have struggled to master ten new spelling words a month and who have needed support every single term? What about the child whose parents have separated this year meaning she has had huge difficulty focussing and has slipped down the ability chart as a result? What about the child for whom just getting through a single day with the noise, bright lights and confusing smells is a huge achievement? What about the child whose health issues mean that getting to school is an achievement in itself?

What about the children like mine?

Each year they become more and more disappointed. Each year their self worth and excitement gets less. They will never be top of the class, or excel at sports or get the starring role in the school play.

More and more children with special needs are being educated in mainstream schools. It has huge advantages but at this time of year of competition and recognising achievement it can be so demoralising for a child who has tried their best day in and day out and still never hears their name at the award ceremony.

I wish I could speak to every one of those children. I wish could hug everyone of their parents. I know the heartache of seeing your child feel left out. I know how hard it can be to clap and cheer every achievement announced knowing your child can never compete or be in for a chance of winning something.

Stay strong children. Stay strong parents. In cheering on others and noting their success you are developing character and if that was ever measured you would both win without a doubt.
If there were awards for perseverance, for strength, tenacity and determination YOU would be the winner. If there were awards for fighting spirit, purity and trying they would be calling out your name loudly.

One day the world will realise stars are much more that the best achievers.

Until that day, if your name is never called at that award ceremony: stay strong. Your self worth is not measured by certificates. Your importance is not measured by how many people cheer.

You are important. You are worthy and you are special. You are the best at being you and that is better than any award that any school can offer.

I’m not sure if you can hear it little one but I am cheering you on! Keep up the great work!

This piece originally appearedĀ here

Why does my brother have to ruin everything?

The nativity was done, the presents bought and the food all ready. When your twins are six they ought to be excited about Christmas Day. One of mine was. The other was totally oblivious to it all.

But we bought him gifts regardless.

The day started badly. Pretty badly to be honest. Isaac refused to come downstairs even though we had changed and dressed him (in his school t-shirt and jumper as he still refuses to wear anything else). So while Naomi was embracing the magic of it all and loving the fact she had received the very toy she wanted, there was a noticeable absence in the room. I should have suspected something. But I didn’t want to miss that magic of seeing my daughters face when she opened her gifts. Plus she wanted me there.
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It was all too late. Isaac was busy upstairs, in my bed by now, having a party of his own. His ‘gift’ was of his own making and the smell was overpowering. The bedding, his clothes, his body from head to toe, and anything else nearby needed urgent attention. So while I attended to a screaming, fighting child, a filthy room, and smelly clothes, I was missing out on my daughter’s special moments. Moments I will never get back. And her happiness at getting presents was tarred by the fact her mum was not in the room to share it with her.

‘Mummy, why does he do that?’

Stress, lack of attention, sensory seeking? Who knows really. He can’t say and I can’t mind read. It wasn’t a good start though.

He came down and saw her new toys and tried to attack her. Despite him having plenty of his own he showed no interest in any of it and started screaming again. Naomi wanted to defend her toys but having sustained quite an injury from her twin less than a fortnight ago (which still has yet to fully heal) she was scared. So she started crying.

‘Mummy, why won’t he leave my things alone?’

Jealously, lack of understanding, curiosity? Who knows. He can’t say and I can’t mind read. How do you support siblings when a child can be so unpredictable and violent?

Later on we went out to grans for dinner. He ate a bit then climbed on a bed in a room, as he always does. He was extreme sensory seeking (use your imagination here) and was not going to be stopped for anything. Finally he returned to us covered in sweat and pulled me to the kitchen. By process of illumination we found he wanted a pineapple. As he pulled the leaves off and played with them, despite having lovely new toys there to play with, his twin sister once again was curious.
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‘Mummy, why can’t he like toys like I do?’

Lack of imagination, developmental delay, sensory issues? Who knows. I can’t always answer as eloquently as I should.

We returned home and I prepared a light tea for everyone. Lots of snack foods and treats. But no meal is complete for Isaac without mashed potato and gravy. And I had not made any of that. And because it was laid out as a buffet his plate was sitting empty (so to him he wasn’t getting any. Why did I not think about that?). He went crazy! Cue screaming, crying, food flying, crockery smashing and a huge amount of stress. So maybe I should have made mash and gravy but he had already had it twice that day and it was all food he usually loves. Surely we can have one mealtime without mash and gravy? I was exhausted, angry, stressed and frustrated. I walked away.
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The son screamed and lashed out more. The daughter cried. The husband’s stress levels were at boiling point.

I returned to comfort my daughter. Through tears she snuffled,

‘Why does my brother have to ruin everything?’

I met that question with silence.

We tried. We failed. I’ve came to the conclusion tonight that Christmas may be best done in private with my daughter in her room. It isn’t fair on her, on us, or on her brother. I have 365 days to work out how to make it better for her.

It starts with the tree coming down tomorrow.