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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The day I first heard the word Neurofibromatosis

 

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Diary entry December 2012:
I have just moved house with my newly turned 4 year old twins this week. We are living out of boxes and working our way through a garage full of our belongings and now we need to take time out today for yet another hospital appointment.

I am tired, stressed and hoping to simply receive the results of my son’s most recent 24 hour EEG. I already know he has classic autism and delayed development and last month marked a year since he took his first steps. He has yet to speak. He has yet to be potty trained. I have been reading. I know autism and epilepsy can be linked and I am praying if this is the cause of my baby’s seizures we can get this sorted today.

We arrive at the hospital. We wait.

Then they call his name.

I carry my baby boy into that doctor’s room kicking and screaming. There are two doctors in the room and I feel uneasy that something seems’off’ just looking at the thick notes the specialist has in front of her about my son. This is my baby; my longed for child. I ought to see a pile that thick of photos of him eating and playing and having fun, not a pile of medical reports about him. My son won’t stop screaming.

So we wait.

The doctor starts with asking about any updates. Have we noticed any further seizures? How is his general health? She then gently and carefully explains how my son’s EEG has come back ‘abnormal’ and that there was a lot of seizure activity noted. I don’t understand the technical reasons behind it but I do hear her saying ‘not epilepsy’. I start getting the children prepared to go home.

But she just sat there.

Somwe wait.

‘Are you aware your son has an abnormally large head?’

Well, yes I was very aware of this, especially compared to his twin sister.
‘Have you noticed any birth marks on him at all?

Well, yes doctor, but I would not worry about them as his dad has them too.
‘Would it be ok to have a look at them?’

I look at my son happily sitting on the bed pulling at the blue roll covering it for hygiene reasons and playing with it between his fingers. He would happily strip naked so he is never going to object to having his clothes taken off.

I sit there watching on as two medical professionals look in detail at my son’s body.

There is a way medical people look at each other when something isn’t right: a knowing look, a silent ‘are you thinking what I am thinking’ look, a look that says ‘will you tell them or me?’ We had seen that look just six months prior at the autism diagnosis. I never want to see ‘that’ look again. I am scared. I am curious. I am confused.

We wait.

And I am even more confused now the doctor isnasking if she can see my husbands birth marks too. He is 55. He can drive, live independently, has a job and no medical issues. It was just some marks and spots on his skin. What is the deal here? She asks my husband a few questions and then sits back down at her seat. My son returns to tearing up the blue roll and his sister sits on my knee quietly.

And then she says it:

‘Your son is presenting with autism, learning difficulties, seizures, a large head and, most importantly for us, over 8 prominent cafe au lait marks on his skin. Given the family history (what family history I wonder?), we both strongly suspect your son has a condition called Neurofibromatosis type 1. You will be referred to genetics and I will arrange for a nurse to come and do a home visit as soon as possible. Like your sons’s autism this is lifelong and there is no cure. Your son has simply inherited this from his father. I will see you again in six months time. Thank you for coming.’

At that we leave.

So that is it. At least she wrote it down for me.

From that day on we have waited. We wait to see if his health remains stable. We wait to see if any more tumours grow. We wait to see if his sight is affected.

On 3rd December 2012 I found out my child had neurofibromatosis type 1. All I can do now is wait. It is unpredictable and no-one can say how my son might be affected. All we can do is wait.