Let silent words be heard

My children live in a different world to me. They have autism. I don’t. They order the world, understand language and process sensory feedback in an entirely different way to me.But because they were diagnosed at just 3 years and nine months and 4 years and 10 months old they were unable to tell me much about their world. So I took it upon myself to learn about theirs.

I bought so many books about autism. And read them all. Around 99% of them were written by people like me who do not have autism but who felt they understood what my children may be experiencing. I went to training courses about autism. They were all run by people without autism too, trying to explain something they have never lived with. But I did find out something very early on: no two people with autism are the same. I already had that figured out with two very different children both with the same diagnosis!

I wanted to know what it was like for my own two children. I wanted to know how best to help them and teach them. I wanted to be part of their world.

So I watched them. I sat with them. I held them. I listened to them even when it seemed like to everyone else there was nothing to hear. And everyday I prayed that one day they would open up to me.

This week my six-year-old explained to me a little about why she never spoke a word in nursery for the two and a half years she attended. Speech and Language therapists diagnosed selective mutism. I had no idea why my daughter was speaking so fluently at home but not at all outside of the house.

It was relaxed, accidental, and natural. As I read a bed time story to her and read a line that said ”Hi Tony!’, called Topsy, but her voice came out not quite loud enough’ (Topsy and Tim start school by Jean and Gareth Adamson). Naomi suddenly opened up. She knew how Topsy felt. She went on to share how that happens to her all the time: She wants to talk but the words just won’t come out of her mouth, how it was like the words just stuck in her throat, and sometimes her mouth could not even open up. She was scared and worried that she would get a row. She was shaking because things were new and different and she seemed so small. Her voice was scared of new people and liked to hide and sometimes she was sure she was talking because she could hear herself but now she realises it was just her brain and not really her mouth. She was worried that once her voice did come out she may not be able to control it and it might never stop. It was like someone jumped into her mouth sometimes and just stole away all the words she was trying to say.

Here I was suddenly getting a glimpse into her world. We had read this story so many times yet tonight she suddenly realised she could identify with one of the characters. And more than any book, or course, or professional input, I got to learn so much more about my daughter, her anxiety, her selective mutism and her autism.

Naomi’s twin brother is totally non verbal. I may never ever get the privilege of a night like this with him. I may never know why he bites himself, insists on mashed potato and gravy at every meal, only ever wants to wear a red school jumper or what keeps him awake all night. So I will have to learn to listen to him some other way.

Last week there was a social media campaign to support and bring awareness of non verbal children, especially those with autism. You could say that for a long time that applied to both my children, but for very different reasons. When Naomi heard about it she was desperate to be part of it. For her brother. But also for all those other children who like her have struggled to communicate with selective mutism.

I struggled to write this week. Writers block? Maybe. Or maybe I just needed to be quiet for a while and let those silent words be heard.

My children live in a different world to me. Both of them want to tell me what it is like. Only one of them can now explain that with words. The other is silent.

But let us listen. Let us put our fingers over our mouths to keep them from speaking. And let those who are struggling have a change to tell us in whatever way they can. Let us hear from our own children. Let us hear from those who struggle:

Let silent words be heard.image

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What if he is still doing this when he is an adult?

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What if he is still doing this when he is an adult?

I think about the future a lot. In fact I think about the future too much. Everyday, at some point, I look at my six years old and wonder: what if he is still doing this when he is an adult?
And because of that, even though he has autism, even though his understanding is still very limited and he has no speech at all, even though he has Neurofibromatosis type 1, and even though he is mentally much younger than his age; I have to discipline him at times.

But before I use discipline I stop for a moment and ask myself that question…what if he is still doing this when he is an adult? Because the answer to that question is what helps me decide if I need to intervene or I need to understand more.

I think it is important to remember that underneath every diagnosis my son is just an ordinary child who at times¬†will push the boundaries and break the rules. Just like any other six-year-old he will react to being told ‘no’ and will want his own way at times. And I actually find myself getting excited when I see that. Seeing ‘normal’ in a child with such complex needs as my son is something to celebrate. But I must keep thinking of the future…

He is my son. He has special needs. And I could spend all day justifying his behaviour. He is lashing out due to frustration, he is licking the chair for sensory feedback, he is throwing things because he likes the noise, he is screaming at me because he can not talk, he is whining because he finds waiting hard…and so on.

But while it is tough dealing with some of his behaviours at six, how would I be able to cope with them at 16 or 26 when he is taller than me, stronger than me, and able to overpower me? How would I feel if he bit a support worker, or a teacher, or threw something of great value belonging to someone else? Could I stand up in court and argue his imagebehaviour is all due to his needs? Quite possibly. Because his needs are profound. But I would prefer to not have to do that.

So sometimes he finds himself on the naughty step…

Not for flapping, or spinning, or watching the same 10 second clip for the hundredth time. Not for endlessly eating mashed potato and gravy, not understanding when he needs changed or waking up through the night. Not even for wanting to go to the lifts when we are out, standing staring at the door frame when I am trying to get into the room, being unable to sit on a seat or any of the other behaviours he has relating to his conditions.

What if he is still doing those when he is an adult? Well those would just mean he still has autism and NF, which of course he will always have.

But scratching his sister in anger, throwing his iPad across the room in temper, biting, hitting, kicking, deliberate defiance, and deliberately destroying things his sister is playing with…well what if he was still doing these when he is an adult? I have to train him like I would any other six-year-old. He needs to control his temper like any child and find ways to communicate that are less violent. I need to lead the way and show him. It is a challenge for us both.

We sit together. Learn together. And when it is over we hug together and make amends.

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What if he is still doing this when he is an adult?

Well, I will be the proudest mother alive!

We have come so far…

January is often a time of reflection for me. A new year; a fresh start. As I approach the second anniversary of my blog at the end of this month I have also been reading back at my own journey. I never knew my own writing would make me so emotional. It has brought back memories and when every day seems the same as the next, it has been nice to see that my children have actually progressed, even if it seems we have been stuck at times. And I have come so far.

When I started this blog I never thought that two years later I would still be writing. But here I am.

And as if to prove a point to me, my son chose this very week to suddenly do something he has never let me do before (well not since he was less than a year old). At six years and two months old he let me read a book to him for the first time since he was a baby.

Sometimes pictures speak louder than words:

This was what my twins looked like when I was last able to ready to them both together:

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And this is what they looked like this week when instead of reading to just my daughter I had the privilege of sharing the moment with Isaac too:

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We have come so far!

I also came across an old note I wrote on my Facebook account this week. I wrote it back in October 2012, a month before the children had their fourth birthday and three months prior to me starting blogging. It is a poem I wrote for Isaac and I thought it might be good to share, as even though we are still dealing with nappies and we still have no speech, it shows how far I have come and the picture I posted back then shows how far Isaac has come on too.

I’m sorry son

Dear Isaac,

I’m sorry I reversed the car today
When I know it disturbs you and makes you cry
And instead of offering comfort
I got angry and screamed at you “Why?”

When I carried you into the house
heated your milk, sat in ‘your’ seat
But forgot you won’t drink from a bottle
Just because you had shoes on your feet!

I’m sorry you still can’t speak to me
and today that was driving me mad
Your frustrations at trying to communicate
at the moment are just making me sad

Your sister set up a train set
but you destroyed it and pulled it apart
As she cried in my arms at your actions
I cried with her and just broke my heart

I’m sorry I almost force-fed you
when you refused all the options I’d tried
You were staring into space when I dressed you
But I was still so annoyed when you cried

I’m sorry you can’t look at my face
or respond when I’m calling your name
You’d rather pull out DVD’s
over and over again

I’m sorry you’re still wearing nappies
I didn’t expect it aged 4
I’m sorry you wanted to escape
when the gas man came to the door

My son I need to say sorry
Tomorrow we will both start anew
With patience, understanding, forgiveness
And a promise that I will always love you.

With love,
Mummy x

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We have come so far!

And it isn’t just me. When your child receives a diagnosis of autism, neurofibromatosis type 1, global developmental delay, or anything else for that matter, the entire family has to learn to cope with it. And we don’t all cope in the same way.

I have struggled at times. My husband has struggled at times. But this week I caught a moment on camera that pictures the journey we have all made so well. Here is my precious baby boy in the arms of his daddy flapping and laughing with delight:

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It has been a difficult two years since I began blogging. It has been a challenging six years since the twins were born. But everyday we are making progress. And looking back helps me see that.

My first ever blog was called ‘The journey thus far…’ Now I can look back and say with confidence ‘we have come so far’. And one day I may even be able to sit down with my twins and share some of their own journey with them. I finally have hope that could happen.

I’d rather walk through the storm with you

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Winter in Scotland can be brutal sometimes. Yesterday morning was one of those mornings. Cold, wet, very windy and still pretty dark as the children needed to leave for school. So even though her school is, at most, ten minutes walk from our house, I offered my little six-year-old the chance to take the car.

‘No’ she insisted. ‘I’d rather walk through the storm with you.’

So we wrapped up, zipped up and headed outside.

There were times when she was almost blown away. But we held hands tightly and neither of us planned on letting go.

There were times we could hardly see where we were going. But we just kept walking, one step at a time, encouraging each other every step.

There were moments I thought we should turn back and climb into the warmth of the house or the dryness of the car. But we had a determination and a purpose and the destination was within reach. It may have only been a ten minute walk but there were moments it felt like eternity. The intensity of the wind, the driving rain in our faces and the cold taking our breath away. ‘Keep going’ she told me and keep going we did.

Of course we arrived. We were a little windswept, our clothes were wet and our faces red from the cold. But as I left her in the safety of her school and walked back home myself through that storm I realised the value of walking that day.

My little daughter was gaining strength, courage, determination, and the gift of encouragement this morning that going to school the easier way would not have taught her. And she chose to do that of her own free will. She wanted to go through the storm with me because she loves me.

I feel like I have been walking through a storm like that for years. When I found out my precious children were not like other children it felt like I was being beaten down by a gale force wind. Constant appointments, diagnosis and fighting for what they need feeling like cold, icy rain forever falling on top of me. The waking up every morning facing the same pressures of caring like the darkness of a cold winters morning that never seems to end. The not knowing the future like the freezing cold temperatures numbing you to the pain.

It is so much easier to get through the storm holding someone’s hand. There is strength that comes from the encouragement of another little voice saying ‘keep going’. There is a love that grows deeper, a bond that gets stronger and a determination that grows continually by facing the storms of life with another one.

Don’t go it alone.

I know that having you all alongside me is what is making this thing called life easier.

Everyone one of you means so much to me.

Don’t let go of my hand please…because I’d rather walk through the storm with you.

With us, but not with us

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Maybe the thought of new year made us brave. Maybe we didn’t want to offend the person who had bestowed a costly gift on us. Maybe the thought of getting out the house after a fortnight of the children being off school was just too enticing. Whatever it was that prompted us to take two six-year olds with autism to a Saturday afternoon pantomime in the middle of the city centre, we certainly must have been a little foolhardy. I packed a survival bag with all the essentials and climbed into the car.

Amazingly it wasn’t a disaster. Admittedly that was party due to iPad’s, doors in the bathrooms, hand dryers and taps in the bathrooms and an automatic front door, far more than it was to do with costumes, scripts and acting abilities. We lasted until part way through the second half. And as I told both my children just how proud I was of them for this major achievement it hit me:

They were both with me, but only one of them was actually ‘with’ me.

Only one of the children was even aware we went to a pantomime. The other had either played on his iPad, been enjoying the sensory excitement of the public bathrooms or exploring the mechanisms of the automatic door. To him it was just another building. He could not tell me (not that he can speak anyway) what the pantomime was about, any parts he liked or even what it was called. I am not sure he was even aware we were supposed to be watching anything.

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He just can’t seem to connect with our world at all. At least not in the way we want him to.

As both children prepare to go back to school in a few days time after having a fortnight holidays for Christmas and New Year, he is once again oblivious. We show him visuals and even a photo of his school. He won’t understand until his taxi comes up the driveway on Monday morning.

As usual I will print off some pictures of his time at home to share at news time with his class. But although he was with us throughout Christmas and New Year he wasn’t actually aware of any of it. After all he can’t even understand a day of the week let alone a year change. Christmas was just another day to him. Sometimes I wonder if I am sharing the photos with his school to prove to myself and them that we do things. Isaac would rather show them a video of him watching the lifts at a well-known high street shop. That, to him, was the highlight of his break from school.

Tomorrow I will once again take him to church. Church to him is a place with red seats that flap up and down, a place with fluorescent lights to follow at strange angles with your eyes, a place that you get a cake at the end. He can’t sing (but he does enjoy the music) and he has no idea of any of the Bible stories or concepts. He is in his own world.

He will be with me, but not with me.

He is now two-thirds of my height. Yet he still can’t utter a word. He still can’t use pictures to effectively communicate his wishes. And most of the time he is still trapped in his own little world. Taking him places is like taking someone from another country. He doesn’t understand the language, the culture, the things people do or any of the social nuances. So he copes whatever way he can.

I am getting used to his inability to talk and communicate. I can live with the fact he needs me to look after him like a young baby still. I accept he will need support for many years to come.

But one day it would be nice to get a connection with him.

One day it would be lovely to take him with us and actually have him with us in every sense of the word.

Until then you will find me at the doors in the public bathrooms. I will be with him, even if he isn’t with me.
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