Four things my severely autistic son has taught me


Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge but I would learn and gain so much.

 
Then one day my baby was diagnosed with severe autism.

 
Everything I had ever known about parenting suddenly changed.

 
I went from being the teacher to becoming the student and despite my son having no ability to speak he has taught me more than any speaker, any book or any course every could.

 
Here are five things my severely autistic son has taught me about life:

 
1. If you enjoy something, repeat it! 
All too often in life we are told to ‘move on’ or ‘grow up’ or ‘you are too young for that!’ My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on you tube over and over. He presses the same button of the same toy repeatedly and still laughs.

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Isaac has taught me that if something fills your heart with joy never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life over and over again.

 

 

2. Stop worrying about other people!
Isaac has no awareness of others. He is not afraid to get on a roundabout even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or wether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd. Instead he is blissfully content being who he is, exactly how he wants to be.

 

I want to be more like that.

 

Life is not about doing what everyone else is or pleasing others. He is different, and happy to be so, and there is a lesson there for all of us.

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3. There is other ways to communicate without using words.
I talk far too much. Most of us do. Isaac can not talk at all so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, he screams if he is unhappy or scared, he takes my hand to lead me, he finds photographs of things he wants.

 

To most his communication is too basic, too rudimentary, to learn anything from. They are wrong. Speech is not a ‘higher’ level of communication but rather a way to communicate that is actually too easily misunderstood. We can say we are happy yet our body language says otherwise. We can say we love when we actually don’t. My son simply shows me in beautiful and simple ways. They say actions speak louder than words and perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more?

 
4. Don’t worry about the future, just enjoy today!
Isaac has no concept of ‘future’. He lives in the here and now and at 8 is just about coping with the basic idea of ‘first and then’. He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism.

 

He lives in the moment.

 

He eats food and enjoys every item with no consideration for cost or sell by dates. He is as content to eat an out of shape vegetable from a low cost supermarket as he is eating out in an expensive restaurant. As long as he gets to eat he does not care! He never stresses about money or where it will come from neither does he desire anything of any real value. He will play with a coat hanger flapping it for hours without any idea that most would view it as trash. While we may not be quite as able to ‘live for the moment’ as he is we certainly could learn from his care free lifestyle and worry much more about today than the future. First today, then tomorrow could be a motto for us all.

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Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same you tube clip that he laughed at yesterday, and the day before, and the day before that too! He drags me to the cupboard for food and is neither brand aware nor cost aware.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him.

 

He brings me delight every day. He has so much to teach us.

 

He may be severely autistic and non verbal but the world is a better place for having him in it. 

 
People tell me he needs to be more like us. I disagree. We need to be much more like him. 

 

IMG_1466A version of this blog first appeared here

Let them play

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Let them play!

My heart is happy. My son is sitting on the living room floor with a large canvas bag and a pile of teddies. He fills the bag full of teddies, takes them out one by one and then refills the bag once again. It may seem very different to what other seven year old boys do but he is playing.

So I let him play.

Sometimes I get right down on that floor beside him and name those teddies. ‘This is Elmo’ and ‘This one is a panda’ and so on. I almost feel pressured to turn his play into a learning experience or a speech and language therapy session. When your child has significant disabilities and delays the pressure to use anything to ‘bring them on’ is overwhelming. But sometimes they just need to be children. Sometimes we need to allow them to explore and learn and enjoy being in their own world.

So let them play.

When the weather is more favourable we like to go to parks. Sometimes we walk about, or have a swing or venture down a little slide. I have to be so careful that any places are fully enclosed and have equipment that can take the weight of an older child still using frames build for younger, much lighter, children. But mostly our biggest problems is the general public who see my child licking the equipment, or flapping or running around in circles and they mock. And while he knows no different, I do. So he loves the baby swings, so what? He takes a whole lot longer than other just to climb up a few steps and manoeuvre his body down a slide. So what? He is enjoying the park, the fresh air, and learning from others.

He is playing.

I can’t let him be in the garden alone. He can’t join a football team or a drama club. He can barely balance enough to run never mind ice skate or dance. But boy does he love a good tickle! Or some rough and tumble play on the bed. He loves nursery rhymes with actions even if he can’t do any of them himself yet. He loves stories and videos and Peppa Pig. He loves sensory activities like lights and repeating sounds. He likes buttons to press, tummies to squeeze, toys that pour out and anything with water. His toy collection is all things for under three year olds. I am totally fine with that because they make him happy.

And they enable him to play.

We haven’t reached the imaginative play stage yet. Or the social play. He can’t read or write or even speak. He can’t kick a ball or throw and catch. Cars are just something he puts in his mouth to chew on. But fill a ball pull full of toy plastic food and he will sit there for ages exploring, looking and rummaging. He loves his iPad. He loves a DVD player. But most of all he loves his mummy.

So before he gets bored of those teddies I am off to play with him. It is one of the most important and most beautiful things a child can do.

However they do it…let them play!

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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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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

imageAs 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.

When the carer needs care

Wake up, eat, go out, come back, eat, play, sleep. Simple really.

And then mum went and fell down the stairs.

Kiss it better, put a plaster on it, don’t think about it and it will go away. Simple really.

Stop! Yes, you read that right: mum went and fell down the stairs. This isn’t a kiss it better situation. or a simple plaster affair. This is serious. This involved accident and emergency departments, a splint, bruising, pain killers and crutches. But it could have been so much more serious. And for that I am eternally thankful, despite the pain.

So what happens when the carer needs care?

By defination of a carer you are supporting and looking after and seeing to the constant needs of another. You are the lifeline, the advocate, the stronger one. The carer sacrificially puts the needs of the other person before their needs daily, whether this is in a paid capacity or not. And for many, like me, this is a 24 hour a day, 7 days a week job. There isn’t sick pay, or holidays, or even lunch breaks. Training is in your ‘spare’ time and has to be juggled around appointments and therapies and the care needs of the person you support. Parent carers like myself work behind closed doors, silently doing all that needs to be done to ensure the welfare of your disabled child or children is put first. We carry out therapies because there are not enough hours of speech therapy or physio or nursing care available. We administer medication as efficiantly as any nurse and our patients date of birth, allergies and personal information rolls off our tongues as easily as our own does. We fill in forms and specialise in the day to day care of conditions we have had no previous education in. We are nurses, therapists, entertainers, interpreters, cleaners, cooks and drivers on a daily basis.

But every carer is human. Accidents happen. We have emotions and feelings and sometimes, actually more often than we realise or want to admit, carers need care too.

So for me that has meant a period of rest and reflection. And allowing others to love and support me. And that is something I have found hard. Not only because I am used to being the strong one but because my beautiful children have found it very challenging too. It may sound a cliche but seriously my heart was often in more pain than my pysical body at times.

While I dealth with this:

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my boy reacted like this:

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Because he has autism and can’t cope with change. Because he is at the stage of requesting things by taking mum’s hand and leading her to what he wants and he can’t transfer that skill to anyone else. Because he has global developmental delay and can’t understand that mum is injured. Because he can not tell us what he wants or what is going on as he has no speech. Because he is just a child after all. And he gets the care, not mum. It’s hard to realise that person who does your washing and ironing, keeps your house clean, puts food on the table for you, changes your nappy and works the television is, after all, just like you and has feelings and pain and needs help at times. Gosh, many a teenager still struggles with that concept so no wonder a four year old can’t grasp it overnight!

So when he went to his room we found he had smeared. All over walls, bedding, toys, himself..well everywhere really. The mess, the smell and urgency to get him away before anything was ingested would be overbearing for anyone, but when you become soul carer to two disabled children and an injured wife, well it must have felt like the whole world was against him. In my eyes my husband is a hero. My admiration for a man who can face all that and still smile has just got so much stronger. But you would never known he had dealt with that behind closed doors. Because that doesn’t make news. It is just daily life. It is love in action.

And when we took him to a hospital appointment Isaac screamed. That ear piercing, get me out of here, all consuming scream. Continually. Because he was in his disability buggy, mum was on crutches and his sister was trailing behind. Because it wasn’t possible for one of us to supervise his urge to walk up and down in straight lines gazing at the ceiling lights. Because he was at a hospital and clinic he had never attended before and he hates change. Because we had picked him up early from school in order to go. Well, in reality for any number of reasons really. But the fact was he screamed. Continually. Even while we were trying to speak with the paediatrician. Hey, we are carers and parents and we are human too. It hurt our ears as much as it did everyone else. We needed headache relief like everyone else.

Do you ever stop and think that someone you know could be going through something like this behind closed doors?

He does sleep (albiet with the help of a supplement), and most weeks are not this bad. Thankfully.

But when I started blogging I said it would be an honest account. So this is life.

And then he does this:

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He used a point for the first time EVER and actually tapped the ipad in the right place for the first time. His smile and the achievement and the love of his twin sister sharing the moment. Well, that is worth the screaming hospital appointments, and the smearing and the pain in my knee. That is why we care.

Injured knees mend, headaches from screaming ease, poo can be cleaned. Seeing a child reach a milestone is worth it. Hearing that first word makes it worth it. Knowing your child is breathing, eating and growing makes it worth it. It really is incredible to be a full time carer.

But the emotions and the intensity and the fact accidents happen and carers are human mean that no matter how big a smile a carer has, never forget that carers need care too. And that isn’t just because they are injured.

You never really know what is going on behind closed doors. Let someone know you care please. Hug, smile, do something nice for them, and don’t judge. It could be you they care for one day after all. Or you could find yourself being a carer.

Today has been a good day. There has been no extra cleaning, or extra high pitched screaming. No pain killers needed and the knee is improving. We all woke up, ate, went out, came back, played and went to sleep. Simple really.

But the week the carer needed care taught me that we are all human. And it’s ok to need help sometimes.

Isaac’s journey

I was so ill in hospital the day I was told I was pregnant. Seriosly ill with ovarian hyperstimulation syndrome, hooked up to a drip with a catherter and unable to do much without a lot of pain. But nothing could surpress my delight at finding out I was finally pregnant. The elation and excitement at the news spurred me on to recover and 5 days later I was home and able to enjoy the rest of my pregnancy. 2 weeks and two days after getting home I was back at hospital for an early scan and this was what we saw:
7 week scan
TWINS!
The frst 16 weeks I vomitted so much I lost a stone in weight, despite having two growing babies inside me. But things settled and I continued to work whilst having regular scans and check ups. I actually thought I was busy back then, working full time, keeping house and buying all the beautiful things that babies require. Ha! Try doing those things whilst actually having to look after two children and then you realy know what busy is!
Then on 7th Nov 2008 my world changed as Isaac Gabriel Joshua Gwynne entered the world weighing 6lb, 4 oz followed a minute later by Naomi Miracle Grace Gwynne weighing a petite 4lb 11oz. Beautiful and both so perfect.
9 months pregnant Before.
new family 24 Hours later.

And so the baby years, toddler years and pre-school years began. And this week those wonderful, exhausting, precious years come to an end as my baby boy begins full time education. I get to keep his twin sister at home another year and this time next year I will write a similar post marveling at all that she has achieved and enjoyed in those amazing years before school starts. But this one is in honour of my baby boy as he begins his adventure in full time education. So journey with me through the last 4 years and nine months and see how that tiny baby has grown to become a young boy full of character and energy and how he has faced so many challenges along the way. As I journeyed with this boy my life changed so dramatically that I will honestly never look at anyone the same ever again. He is being seperated from not only his mum and dad but his precious twin sister. But they will always be as close as this:
moses basket
looking
and this.

Isaac was a great eater and such a content baby. But a sicky baby too. He brought up a lot of milk but never cried. Eye contact was an issue even as a tiny baby but did improve a little as he approached his first birthday. Isaac was struggling to keep up with other babies and meet his milestones but I was told it was common with multiple births and not to worry. He was gaining weight and was progressing slowly. Here he is at 6 and a half months with his sister by his side helping to support him:
6 months
By 11 months he was catching up and now crawling and by a year he was sitting up unaided. Within a few months he mastered the art of pulling himself to stand:
1st birthday
pulling up
But then we hit a developmental block. We had no speech, only a few sounds and it was getting more obvious he had a significant eye squint. By 18 months referrals started to get made to a developmental peadiatrician. And everything changed. By the time he saw the paediatrician at 22 months we were still no further forward. He didn’t respond to his name, he had no words, eye contact was very poor and he was entrenched in his own world. Dependent heavily on routine and still not walking. Our house had just been repossessed and our world was turning uside down. We had moved miles away from friends, my mum was about to emigrate and then we heard that word for the first time: autism.
We felt lost. He looked lost.
lost
But things started to happen so quickly. Meetings, more meetings, people coming to the house to see the children, courses, professions I had only ever heard of at university suddenly start getting involved. I suddenly needed a diary, a filing system for paperwork and a crash course in a disability that seemed alien to the delights and cuddles my toddler was giving me daily.
He started nursery. Only a few hours at first. Then a few days. He was fast approaching 3 but still in the baby room at nursery. And still not walking or talking yet. And getting further behind by the day. It was all so scary. I had to trust God so much more, lean on my husband more and keep going when my heart was breaking. We applied for disability money and recieved word back in just 4 weeks. I didn’t want to read the reports that helped them make such a quick decision. I wasn’t ready.
He started scanning objects across his eyeline:
scanning
He cried so much:
crying

He refused to wear socks and showed no interest in toys. His only interest was food and sensory play:
space blanket
He started a specialist nursery and enjoyed going for a few hours 5 days a week. But progress was still incredibly slow. Just weeks before starting the specialist placement he took his first steps. But he was still very shaky and unbalanced and a few months later we recieved a mobility buggy. He was sent for more checks after having seizures. In July 2012 he was formally diagnosed as having classic autism, global developmental delay, severe learning difficulties and pica. Before we even had chance to digest this he was called a few months later for a 24 hour EEG to find out more about his seizures:
eeg
In the Decemeber of that same year we found out he has neurofibromatosis type 1. He has tumours on his brain causing his seizures. Tumours that could grow anywhere and at any time on any nerves in his body. But God has his hand on this boy and his story is touching so many people.
That month we moved house again and sadly he had to cope with yet another change of nursery. But this time he got to go with his twin sister even if they didn’t get to play in the same rooms. He had mastered the walking by now but still no speech and still behind in so many ways. Still in nappies. But growing, smiling, laughing and loving life.
As the nursery bus would pull up outside the house he would flap, almost fall out of the front steps in his hurry to get there and grab his beloved toy or book from us as he went. Never once a wave, not even a look at us..but happy in his own routine, doing what he loves.
But now he has finished and a new adventure awaits. Yesterday was the last time my babies got on that nursery bus together. He had no idea why I wanted to take his picture but I had to:
nursery bus
This was his last journey to nursery. The end of his pre-school years. The end of his stay-at-home-with-mum years.
This Wednesday he starts a new journey. A new season. He has came so far, been through so much, and even though he does not understand it, he hasn’t done any of that journey alone. I have went with him, dad has went with him and his twin sister has been to every appointment, been at every home visit and held his hand every day.
Now he has to journey alone…except he will never be alone as God is going with him. And so will mummy’s prayers.
Isaac’s journey just got more exciting…
please keep journeying with him as he starts his school for the first time this coming week.