When our worlds collide

I fell in love with my children long before they were born. I will never ever forget that moment I first held them skin to skin. There was a bond that I felt could never ever be broken. I felt they were a part of me from the moment I found out I was pregnant. I loved feeling them move and kick and hearing their little hearts beat at every check up. I was connected to them. Our worlds were one and we would always be close.

Then autism entered my family.

That is not my sons fault in any way. I don’t resent him or blame him but I, as his mother, need to work so much harder to connect with him.

He lives in another world to me and I admit I have,at times, cried over that. I want that bond we had when I first held him. I want that special connection of looking at his eyes and seeing into his soul. I want to hear his voice, cuddle him, stroke his hair and share life with him.

imageHe prefers to look out windows, flap at lift doors and laugh at hand dryers.

Some days we are like strangers living in the same house. I meet his needs, he does what he wants. I create a routine and he follows along just because it is what we do here. Eye contact is fleeting, often non-existent. Words are never used. Body contact is on his terms and never conventional. When we try to understand each other it is like we speak in different languages or live in different planets. I try my way, he tries his way and often we both end up upset.

So when moments come along I throw caution to the wind and go for it in any way I can.

Today while on a train journey he sat beside me and we had some physical contact that did not mean climbing on my head or hitting me. We just sat beside each other. That was it. I felt like I was right back there the day he was born looking down at him filled with love and wonder and pride. A short moment in time when our worlds met and our hearts collided. Unity.

Later on as we got off that train and headed back to the car he did something so rare it took my breath away. He reached out and held my hand. Touch brings healing, restoration and love. He sought me out. He knew who I was and he wanted to know I was there. He did something other parents take for granted but something that is rare in my world. A short moment; two worlds coming together, no words needed.

Tonight as I bathed him, dried him, and met his physical needs I knew our bond was different yet still strong. Unlike his sister who spends bath time chatting, sharing and playing, he spends it simply splashing and retreating into his own world.

I read him his story, the same one I always do, but tonight there was no vocalising, or flapping, or pointing. Those little moments of coming into my world today had tired his mind and his emotions.

The irony is he is so fiercely independent yet completely dependent at the same time. He wants to be left alone yet he can never be left alone. He wants to live in his own world and I am the one continually trying to change that. It’s like the more he gives to me the more he has to be back in that bubble again for safety. He had had enough tonight. But I hadn’t. He was ready to be put down in that baby crib in the hospital to sleep and I was longing to hold him that little bit longer all over again.

I kissed him. I tucked him in and then I went to leave the room. Except I couldn’t.

So I broke my own rule and climbed in beside him. I expected him to scream, to push me away and wrap himself in his cover like he always does.

Instead he wrapped his chunky arms around me, snuggled in and smiled at me. He fell asleep right there in my arms, just like he did the day he was born seven years and five months previously.

I may never hear his thoughts and worries. I may never truly understand his sensory needs or fascinations. I can’t be autistic like he is.

But tonight I was right back there hearing his little heart beat and promising him the world.

Today, for brief moments in time, our worlds collided.

A moment is all it takes to connect.

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Is your other kid normal?

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‘Is your other kid normal?’

How would you feel if someone asked you that?

Before I let you know how I reacted to that I want to start by looking at the dictionary definition of ‘normal’.

According to The Oxford English Dictionary the word ‘normal’ means: conforming to a standard; usual, typical, or expected.

In other words this stranger was implying my son is not standard, or usual, or what was expected. He does not fit societies stereotypical idea of a seven year old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love that he is different. I love that he does things in his own way, at his own time and he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yoghurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee at watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all ‘normal’ things that seven year old boys do!

He has brown hair, Hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my sons disability. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child and craving a child without any such challenges. Maybe I should be sad I have to see to his every need at seven? Maybe I should be broken hearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

Now I see my son differently. I see him as beautiful. I see him as wonderful.

He IS normal. His sister is normal too.

Normal according to the dictionary is conforming to a standard. If you see the standard as being human then there really is no such thing as not being normal.

So do you want to know how I replied?

I simply smiled and said softly ‘Yes. I am blessed with two amazing children. Thanks!’

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Sometimes a simple yes or no is enough

imageMy son doesn’t speak. But ever single day I speak to him. And I hope.
I tell him what we are doing, where we are going and who we will meet. He may have difficulties communicating but his understanding is improving all the time.
He is 7 and about 7 months ago he developed a very precious skill of being able to shake his head to communicate ‘no’. It was a moment of breakthrough. Prior to this we had screaming which could mean anything from yes, no or leave me alone. You could take you pick but if you were wrong the screaming just intensified.

He was so frustrated. And so was I.

Sometimes we just need a simple yes or no answer. That is often just enough.

I have mastered the art of understanding my precious son. I have had the privilege of seven years of learning his ways, his body language and his expressions. I can see his tears before the first drop falls from his eyes and I know what will make him laugh before any sound emits from his mouth. With patience we taught him to tap our hands to make a choice but we still could not get a consistent yes or no for simple questions. He could choose between two things. Would you like mashed potato or chips? Would you like to go to the park or swimming? But when faced with him fussing we could never get a clear answer to something as simple as would you like something to eat? Are you in pain?

Those were the times when just a simple yes or no would help us all so much.

This weekend as we went about our business I looked back at my children in the car and reminded them both we were on our way to the hairdressers to get their hair cuts. As I turned again to face the front I heard something that made me jump. I had just heard a voice I never ever dreamed I would ever hear! It was loud, unexpected and forceful. It was beautiful, perfect and simple. My son shouted at us! He shouted ‘no’! Thank God I wasn’t driving or we may have crashed. As I turned to look at my wonderful boy my heart missed a beat. I was smiling, yet crying. Rejoicing, yet weeping.

He just said NO! It was enough!

No doubt I should have not put him through the stress of that hair cut having clearly heard him voice his objection. But believe me when I say it badly needed done. I needed to see his stunning big brown eyes and he needed to have better vision without seeing nothing but his long brown locks. He hated it. But he survived.

Back home I longed to be able to share that moment with so many of you who follow his journey. So I tried to get him to say it again. I asked that poor boy so many questions willing him to prove he could do it again. He didn’t.

He actually went one better!

Dressed in only his pyjamas I asked him if he liked the rain. (He hates it!) and he made a sound. It was indistinguishable. I asked if he wanted his coat on (he hates his coat!) and again he made a noise but it was more of a grunt. I was determined! I asked him one final question: would you like to go out? And clear as anything he stood up, headed to the door and said ‘yeah’.

He said ‘yeah’!!!

Sometimes a simple yes or no is enough.

Do you know how long I have wanted to hear just yes or no? With Isaac that has been seven years. But with so many other things in life it has taken even longer. When I struggled with infertility for 9 years all I wanted was a yes or no answer to the question, would I have children? When I was told my children had autism I wanted a yes or no answer to questions like will they ever get a job?, will they live independently? When my boy was diagnosed with neurofibromatosis I needed a yes or no answer to will be need medical treatment and be ok? Now I want to ask professionals things like will my son ever be toilet trained? Will he ever be able to have a conversation with me? Will he ever have friends? Some days I want to ask God, are you listening?

I want to know so much. I long for so much. I am believing for so much.

But sometimes just a simple yes or no is enough to keep me going for a very long time.

He played with a toy!!

imageThe teachers had a training day and here I was with an entire day with just one of my children. I thought it would be lovely to take him to one of his favourite places to go to…the city centre! This little six year old boy just beams with delight at the very mention of going on a train. How could I resist that smile?

He had it all planned. He has me trained.This is the routine he always does and nothing changes in his wonderful world of classic autism. We go by train to one particular station, we get off and enjoy the escalators and then turn and go into an indoor shopping centre. From there we press every button for every lift, flapping wildly in delight at the thought the doors will open any minute and we visit every floor that every lift has before finally ending up at the food court where he has me knowing to purchase the same meal he always has and sits in the same seating area he always likes. He then spends an inordinate amount of time laughing and clapping at the hand dryers in the bathrooms before running with gusto to the most expensive, prestigious toy shop in town. imageHe knows exactly what he is looking for and I know exactly where he is headed. He bypasses without even a second glance the high prices teddy bears and Lego sets and remote control cars. He hurries past the jigsaws and dolls and the toy animals. He has one place in mind and one place only…he is heading for the lift!

I never have worked out quite what is so wonderful about this particular lift. After watching it for hours at a time you really would think I would have figured this out but I just can’t. But this lift gives me him so much pleasure, more than any toy in the entire shops ever could. He watches the numbers, gets excited at the doors opening and finds great amusement in just looking at it. The total highlight of his trip. In fact until today I wasn’t even sure if he even realised he was in a toy shop.

Can you imagine a six year old not realising they were in a toy shop? Can you imagine a six year old surrounded by more toys than Santa’s grotto and not begging their parents with those four words every parent usually dreads: image‘mummy can I have…’. It is just days until this boy’s seventh birthday and yet he has never once said those words. He has never asked for anything in a shop or even really played with toys. He has no concept of Lego or toy cars and has no ability to read a book. He can not kick a ball and has no understanding what dress up pretend play is. For almost seven years he has been caught up entirely in his own world of sensory play preferring a bowl of water, pressing a hand dryer to turn it on or endlessly watching lifts either in real life or on you tube.

So can you imagine my shock, my amazement, and my emotions when all of a sudden my almost seven year old turned away from the lift for the very first time and looked over at a display of toys! As if the looking wasn’t enough he casually wandered over and decided to ‘play’ with the toys!

Did you hear me…HE PLAYED WITH A TOY! This is epic! This is breakthrough! He suddenly woke to the fact there was a world besides lifts! And he touched a toy in a toy shop!

I scooped him up and kissed him and gave him a high five! I stood there and watched with tears in my eyes! Then without looking so much at a single price tag I grabbed every single toy he had touched and took my son and his array of newly found interests to the cash register!

imageOn the train home something just as amazing happened. It was like all his disabilities left my baby for a few hours and disappeared. It was beautiful. He put his hand inside the bag (he remembered those toys were in the bag!) and he handed me a bag of toy plastic food to open!!
I did not care if that whole carriage got covered in plastic bananas that bag was getting opened! He requested! HE WANTED TO PLAY.

It is so easy to become weary of playing with children. It is so hard to stay patient when they endlessly beg for toys in a toy shop. It is so easy to take speech and play for granted at any age.

Moments like this don’t come to me often. My son has no speech and he has never played with toys. So yes I spent money on plastic toys that were over priced. But you can’t put a price on the miracle I had this week. The miracle that is the simple fact:

HE PLAYED WITH A TOY!

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Grieving for a child I haven’t lost

*Preface: I feel it is important to say that while I stand by every word of this blog I do not always feel this same intense grief at all times. If you can relate to this blog I want you to know two things: you are not alone, and it does get better. With love, Miriam *

As I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.

It has been building for a while.

The night before last it was anger and hurt as a friend shared how her 14 month old was defiantly talking back when they were trying to get her to bed. I wanted to scream and say ‘but she understands! But she talks!’ Instead I mourned silently.

The world goes on while I grieve for a child I haven’t lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost.

But how do you explain you are grieving a child you have not lost?

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to push him on the swings at the park. He goes to school. He will watch a video sometimes. And yet he is lost.

I have yet to hear his voice. I grieve for the conversations we will never have. I grieve the fact I will never hear him sing or shout or chat with friends like those little ones in the park. I grieve for the fact I will never hear him tell me a joke or talk to me about his day at school. I grieve for the loss of never hearing him whisper ‘I love you’. I can only dream about what his little voice may sound like, how it might have grown in depth and tone as he aged, what sort of accent he may have had or how he would pronounce names of people he knew. A part of him will never be. And I feel the loss and pain of that.

I grieve for all the milestones I have missed and may never have with him. As I watched a mum bend down to hold her son’s hand today to help him walk I thought about how much she takes for granted. Her little one was not much over a year old and yet he confidently held her hand to take some steps. By the time my child did anything like this he was tall enough that I had no need to bend and his hands were nothing like as tiny as her son’s. I have skipped the toilet training, the bike riding, the learning to read and write, the school plays, the attending clubs and the having friends. I have been robbed of things others take for granted and that should be part of normal childhood. There is a loss and a sadness for times that might have been but will never be.

There is sadness that I can not walk him to school or that he can not go to school with his twin sister. There is pain relying on others to tell me about his day when I should hear it from him. There is heartbreak watching the neighbours child of the same age jump on a trampoline and my son can not balance on one leg let alone jump. There is a lump in my throat when people ask what my child wants for Christmas and he still plays with baby toys at almost seven. We have never experienced the tooth fairy with him, he has no concept of Santa Claws and neither chooses his own clothes nor has the ability to dress himself. He has never said ‘mummy can I have’ or gone in a strop because he can not go out to play. He has no friends his own age and doesn’t get invited to parties.

He is here but to many he isn’t.

I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about.

As I sat on a bench in a public park the tears came easily; tears of heartache and anger, tears of frustration and pain.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

But sometimes those tears are needed. Bear with me as I grieve for a child I haven’t lost.

We came to an understanding…

I had plans for this summer. My son also had plans. The difficulty was our plans were very different.

Isaac is six. He has autism and global delay. He has neurofibromatosis. He also has huge sensory issues, rigid thinking and a massive love of lifts and hand dryers. He has no spoken language.

So when school finished for seven and a half weeks his plans involved food (mostly mashed potato and gravy), lifts, hand dryers, food, hand dryers and more lifts…and maybe the occasional ride on a train.

I, on the other hand, wanted day trips, parks, picnics, garden play, road trips, time seeing family and shared adventures with him and his twin sister.

Someone had to give….

We came to an understanding and it went a bit like this:
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I took him to a park…and then we went to a local supermarket where he could see the hand dryers.

I got what I wanted. He got what he wanted.

We were both happy.

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I took him to soft play. He climbed about and even came back for a huge tight cuddle…which was his way of really saying ‘let’s go to the toilets now and see the wonderful hand dryers mum!’

So that is what we did.

He would play for a bit and then watch those dryers a bit more.

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I took him to pottery painting. He humoured me by putting on the apron (with support) and putting a tiny amount of paint on his model…and then he tore that apron right off and found the toilets to look for a hand dryer!

He has no problem communicating what he wants when it comes to his agenda…

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I took him took him on a train ride to a big city. His favourite place there was the lift at the train station! Nothing else mattered.

We traveled for an hour by train just to see a lift! But you have never seen a happier boy than Isaac was at that lift!

By now we were coming to an understanding.

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I decided to try to have a day without lifts or hand dryers…

I took him to the park again. This time all he wanted was the bushes at the side of the path! He felt them, watched them, heard them and even licked them. Well, what else did I think he would do at the play park?

This is life with Isaac. He had no idea others were staring at him.

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We had an invite to a family event at a local restaurant. Isaac made me so proud sitting at a large table and eating his meal (mostly using cutlery) and even having some pudding. But that was followed by an full 20 minutes in the toilets at the…well I think you probably know by now where he wanted to go to.

It wasn’t like I was hoping to speak to those relatives anyway…

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A charity invited us for a day trip to the safari park. Isaac showed not one second of interest in any animal. In fact he never even glanced at them.

But when he saw a sign for toilets he smiled, ran, and flapped with excitement.

I don’t expect he will go into veterinary care when he is older…

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I took him and his sister on a steam train ride. He did enjoy looking out the window at the passing scenery and he did enjoy eating in the cafe. But if he could talk I am pretty sure his highlight would have been that the toilets had his favourite hand dryers in…the ones with buttons to press.

It is what it is. He sees the world in a very different way. And sometimes just having him with me is a bonus.

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By the end I just decided to run with it. I only had to look at the excitement in his eyes and the happiness on his face to know that lifts and hand dryers are the most important things in his life. And if I want to get anything achieved these are the motivating factors to use.

I still would have preferred to have spent summer building sand castles, eating ice-cream, visiting castles and museums and time together as a family building memories. Hand dryers are loud, functional things that I would use only to…well dry my hands really! Lifts are convenient and quick ways to change levels…and that is when my interest ends.

But love takes you to places and has you do things in life you don’t expect.

And so I have spent an insubordinate amount of time this summer listening to hand dryers and watching lifts. And in his own way we have had fun. I had my day trips, parks, picnics and quality time with my son. And he had his fixations.

Life is about compromise. Love is amount accepting someone,however different to you they are, and not always wanting to change them. Making things work is about coming to an understanding.

I have had a lovely summer. Isaac has had a magical time. We just spent our quality time in places I never really imagined.

Even his twin sister seems to have come to an understanding…image

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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