Please stop praying for my son with autism to be healed

img_0035

So many people have told me over the years they are praying for my son. I am incredible grateful for that and the kindness they show but what are they praying about?
Are they asking God for my 8 year old to finally speak? Are they asking for his seizures to stop? Are they praying he learns to communicate or to read and write? Or are they praying for him to be healed of his autism?

Let me be very clear..I want people to pray for my son. My entire family needs prayers and needs God more than we ever have. We need love and support. But please please could you not pray for my son with autism to be healed?

Here is why.

There are many occasions when Jesus healed individual people in the Bible. These include people who were blind, deaf, paralysed, had leprosy, fevers, seizures and even those who had died. Despite studying all of these incidences I could not find any occasions when Jesus prayed for anyone who had learning difficulties or communication difficulties like my son’s autism to be healed.

Then there were mass healing events that Jesus did. Again although many were healed there is no direct reference to children or adults who struggled socially or had repetitive behaviours like my son.

The Bible says that Jesus welcomed the little children. Although I have no proof I am certain there were children in Bible times who displayed similar difficulties to my child. I know they were every bit as welcome to Jesus.

The Bible says that my child is fearfully and wonderfully made. (Psalm 139:14).
The Bible says my son was knitted together in my womb (Psalm 139: 13)
The Bible says my son is created in God’s likeness (Ephesians 4:24)
The Bible says my son is the apple of God’s eye. (Psalm 17:8)
The Bible says my son is God’s workmanship created to do good works. (Ephesians 2:10)
The Bible says God has plans to prosper my son and not to harm him, to give him a hope and a future. (Jeremiah 29:11-13)

God sees no difference between my son and anyone else. He does not view my son as less than or inadequate in any way. Could God heal my son of his seizures and his genetic condition that causes tumours in his body? Yes, without a doubt. Could God open my son’s mouth to give him clear speech? Yes, I believe that with all my heart. Could God cause him to be more settled and display less challenging behaviour and agitation? Without a seconds doubt of course he could. These are things I pray over him daily.

IMG_0440I pray for peace for him. I pray for joy and laughter. I pray for people to understand him and show him love. I pray safety as he travels so far back and forth in country roads to school each day. I pray for a receptive mind and open heart. I pray strength to his body and ease from pain. I pray for him to sleep (I am human so this is something I need too).

I pray for strength for myself as I care for him. I pray for wisdom and unity for those who work with me to meet his needs. I pray for his sister as she deals and lives with some events that could traumatise her. I pray her tender heart is not broken too often. I pray for friends she can trust. I pray she knows she is loved when her brother consumes so much of my time.

There is so many things I pray for and so many things others can pray for too. There are things you CAN pray for for my son to be healed of, but autism is not one of them. Autism is a neurological difference in his mind that causes him to see the world a bit differently. Autism is a part of the way God made him and it makes him beautiful and perfect.

God made each one of us part of a body. My son is every bit as much a part of the body of Christ as the next person even if he has severe learning difficulties, is vision impaired, has global delay and has autism. It does not matter to God that he flaps, spins, screams and is unable to speak. Man looks at all that but as the Bible says “The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.” I Samuel 16:7

I pray that the world looks at my son’s heart too.

IMG_0263

Advertisements

Why I am proud my daughter won’t be in this year’s Christmas play


Maybe I am getting old but it does seem talk of Christmas seems to start earlier every year! We are only just over Halloween and already the shops have festive music, selection boxes and wrapping paper in prominent places!

 
As a trained teacher though there is one place I totally understand preparing early for Christmas and that is schools.There is a presumption that schools and churches will put on an annual nativity play or concert of some sort and the organisation involved in these is tremendous. It takes months of preparation to teach children songs, practice words and prepare costumes. For many children and parents it is the highlight of their year.

 
This year my just turned 8 year old daughter has asked not to be in the Christmas play. 
At first I was bitterly disappointed as Christmas is one of my favourite times of year and both my church and her school put on wonderful shows. But when she told me why she didn’t want to be included I actually cried.

 
I don’t enjoy it at all“, was what she told me.

 
It is my duty as a parent to listen to my children and support them. She has a right to choose. My daughter has selective mutism, anxiety and autism. Being on a stage in front of others, remembering stage directions, song words and wearing itchy costumes is something she finds so stressful. She finds the change of routine difficult and the nose frightening. The thought that everyone is looking at her makes her feel physically sick.

 
I realised I wanted her to be part of it all for all the wrong reasons. I wanted it for me, not for her. I didn’t want her feeling excluded or feeling like she was missing out. In actual fact I was putting her in a situation that made her so uncomfortable and stressed.

 
This year I will watch the church play and her school play and no doubt I will still cry at ‘away in a manger’and beam with pride at little children remembering lines. Instead of watching my little girl perform I will have the beauty of holding her hand as she sits next to me and cheers for her friends. She will sing the songs happily and for the first time I will manage to hear every word as her beautiful voice is right next to my ears. We will laugh together at the fun parts and share the experience in a way she finds relaxing and enjoyable. It will be magical but in a very different way than I imagined. 

 
It took courage for her to be able to tell me something she knew I would find difficult to hear. She knows how much I love watching her do things and she knows how proud I am of her. This year she knows I am extra proud though at the fact she felt she could tell me she doesn’t enjoy being part of the Christmas play.

 
I will never forget her smile and the sparkle in her eyes the night I told her how proud I am of her for not being in the Christmas play this year.

 
It is ok to be different. It is ok to say no sometimes too.

This is my ‘normal’

This is my ‘normal’

The intense sadness is beginning to ease now. Waves of heaviness still creep up on me at times but I cry, wipes my tears away and face another day with a smile.
Maybe I am getting to that point of acceptance?
Maybe I am realising it isn’t the end of the world and I still have two beautiful, amazing children?
Or maybe it has all just become ‘normal’?

I looked back on some old videos and photos this week. There were happy moments of my children playing, flapping moments at lifts, lovely memories of my daughter singing, and too many photos of my children eating! Reminders of how things were and a stark reminder that in many ways things are just the same.image

My son still has his chubby cheeks, big brown eyes and cheeky smile. My daughter has stunning golden hair, piercing blue eyes and beautiful petite features.
And my son is still not speaking…

This is my ‘normal’.

Since my children were months old I have been trailing them regularly to hospitals and clinics. We have so many professionals involved they have to add extra chairs at every meeting. If we decide to change something, if my children have medical issues arise or don’t eat their dinner for a couple of nights I feel I have to call everyone to keep them up-to-date. I have phone calls from schools, people dealing with our children, and others who have just received referrals about them on an everyday basis. We have to take our mobiles everywhere and be available to pick our children up at short notice at any time. Every week I have to discuss with transport about times my child will not be at school due to appointments.

This is my ‘normal’.

I have visuals in every room of my house, we have regimented routines, I read the same bedtime story every single night. I make the same dinners, in the same way, at the same time every week. I buy my children the exact same shoes in the next size hoping they won’t notice I have changed them as their feet grow. We visit the same places we have been to before. I use google street map to show places before we go there and I have become an expert at knowing where every single lift is in every shopping centre within travelling distance of my house. I spend hours watching hand dryers with my son because it keeps him happy.

This is my ‘normal’.image

I can’t tell you if, or when, my son may speak. I can not tell you if, or when, my daughter may overcome her severe anxiety or be able to speak in school. I can not say if, or when, my son will ever stop wearing nappies. I do know my son is unlikely to ever attend mainstream school in any capacity. I have no idea if he will ever learn to read or write. I have no idea if his tumours will grow anywhere else in his body or if his seizures will remain stable.
I live with uncertainty. But I also live with intense gratitude.

This is my ‘normal’.

I am thankful for everything. I celebrate the mundane. I kiss and hug my children in private and in public without caring what anyone thinks. I smile because I have a thousand reasons and more to cause me to. I laugh with my children. I treasure life and find enjoyment in everyday moments. I take pictures of my children like tomorrow is not guaranteed. I love with all my heart because my children have taught me too.

This is my ‘normal’. And normal is good.

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:
image

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.

image
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.

image

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…

image

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.

image
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.

image

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…

image

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…

image

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.

image

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

My best friends…the beautiful flowers

image

Sometimes I just don’t want to know about my daughters day at school. It seems contrary to all good parenting advice but when I asked my six-year-old whether she had any friends the other day she told me she spends her outside social time at school talking to and looking at the “beautiful flowers”. I just can’t bear to hear any more.

I know the school well. I know the names of every single child in her class. I even volunteer within the school for several hours a week. I talk to the Head on first name terms.

My daughter is not being bullied. She is just unable to play with the other children. Her social skills are limited. She takes what the other children say in a very literal way. She is vulnerable. Her interests are far different to the others of her age and ability. She is socially isolated and happy in her own world. She is surrounded by children who know and understand popular culture, current television characters and have physical skills she has yet to even attempt. She has only one current interest which not one other child in the class have even heard of. She is a little girl with autism in a world of mainstream children.

Her perception of what goes on in school is so different from the other children. Where others listen to a story she will home in on that one child who is biting their nails and tell me at home how biting your nails is not good and that child should have been told to stop. It is only when I deduce that the children were sitting on the carpet that I figure she was perhaps having a class story. Her tales of school are all about what children did to break the rules, whose name was taken down the tree today (a behavioural chart used in the class) and who touched her and when (she hates being touched!).

Try as I may she can not grasp that the world can be seen another way. Her autism prevents her from seeing things from other people’s viewpoints. And this is impacting on so much now. Even in the simplest tasks like reading. When I asked her the other night why she still had the same few words home to practice when I was confident in her ability to know those words she said, “I read them to you mummy so why do I have to read them to the teacher too?” It was a genuine question. In her mind she knows them. She knows that and I know that so why would her teacher not know the same thing? She is genuinely ‘blind’ to the fact the teacher will not know she knows them without her reading them to the teacher. The same way she thinks I know exactly what goes on in school because she does so why would I not too?

This is happening to so many children. ‘Inclusion’ is the way to go apparently. It is a very delicate balance between what is right for my child (and many like her) academically whilst balancing the child’s social and emotional wellbeing. School is like a mini real world where she will be misunderstood, become confused at things others find easy and just interpret everything in a different way.

She is the proverbial round peg in a square hole. It is about allowing her to be her, allowing her to be autistic but balancing that against her mental wellbeing and self-esteem when she seems so different. It is a very difficult balance and one that needs very careful monitoring.

So today as I walked my beautiful daughter home from school, with trepidation, I once again asked her how her day had been. “Oh mummy, wait until I tell you what happened to my friends today…” It was beautiful to hear her happy, animated and excited and talking about that elusive thing we call ‘friends’.

Has someone lost a tooth, had a birthday, had a new baby brother or sister, or even asked her to play I silently wondered.

“My friends, the beautiful flowers, opened up for the first time today and now they look even more beautiful!”

Maybe I have it all wrong. There is an area in her playground full of greenery, shrubs and flowers. But the one flower my daughter noticed was the one that was different. Because it was more beautiful, more noticeable and something very special indeed.

I think today she just told me the most beautiful thing about school I ever heard.

Do I just accept this?

image Do I just accept this?

Do I change my children or do I change the world?

As my daughter sat beside me in bed and read from her reading book I wanted to freeze frame the moment. This is awesome. That any child learns to decipher scribbles on a page and decode them to understand words and meanings is amazing. This is the wonder of learning to read. It made me want to cry. Partly with pride in my daughter but partly with sadness for her twin.

Will her brother ever understand sentences and grammar and spellings? Will he ever be able to speak or read a book to me? Does that really matter?

And once again I am faced with the autism dilemma that I try to bury every single day:
Do I force my children to conform to social norms and mainstream curriculum, do I carry out therapy after therapy with them, alter their diets and ‘treat’ their autism, or do I accept their differences and embrace all that they are and instead spend my time educating and encouraging society in awareness and love for all people?

In other words, do I just accept this? Do I try to change my children or try to change the world?
image
The longer I am in the autism community the more I am pressurised to join a different ‘camp’. People want to know if I am in the ‘acceptance’ camp, the ‘genetics’ camp, the ‘vaccine blaming’ camp, or the ‘healing camp’. And it is so complex an issue I just can’t decide.

The problem for me is I have two very different children both of whom have a diagnosis of autism spectrum disorder (or should that be condition?). One is non verbal, one very verbal. One has severe learning difficulties and global developmental delay, the other is academically able and only displays delay in gross motor skills. One attends a school for children with severe leaning needs (a special needs school), whilst his twin sister goes to the local mainstream. I have the honour and privilege (some would argue stress and difficulties) of seeing so much of the spectrum. I hear talk about which end is the most ‘difficult’ or the most ‘challenging’ and I truly can’t answer that.

On the days my son is biting me, screaming for hours in distress and I have no idea what the cause is, or I can not pull him away from the lifts in the shop in order to buy a simple item, I would agree with those who argue the more ‘severe’ end is harder. Then on the days when my daughter takes panic attacks and can barely breathe, when she talks about how sad and confused she is, when I look at her and see a child so vulnerable and socially struggling, I can identify with those who feel the more able end of the spectrum have it harder. I love that my children won’t bow to peer pressure and see the world in a very unique way. I love that something so simple as a lift door closing brings my son to the height of ecstasy. I love that my daughter can focus so intently on her obsession and memorize huge chunks of script. I can see benefits to their basic understanding of the world, how things are black and white to them and their love of order. Of course I love them for who they are, irrespective of autism. I don’t ‘hate’ any part of them even in my toughest moments.

But on the other hand I fight strongly for speech and language, and occupation therapy, and support in school. I would do anything to hear my son’s voice. I push for respite even though I love them. So I feel so torn between the different camps.

While I didn’t see much change in my children after their vaccines I know families for whom the change was both real and devastating. If I truly thought vaccines had an effect on my child would I want the world to know and prevent their child or family going through what I had to? Of course I would. So while that anti-vaccine camp may not apply to me I do understand people’s passion.

While I really want to know and understand if there is any genetic reason for my children’s autism I feel very uncomfortable with the thought that if a full genetic explanation can be found this could lead to couples choosing to not give birth to babies believed to be on the spectrum. And it does seem like every other day there is another article giving some bizarre reason why there is an increase in ASD. There is enough guilt on families already and for a huge proportion of families this can lead to parents taking antidepressants. And with massive funding in research there seems to be ever decreasing funding for support.

As a believer in God I have also been asked about my views on whether I believe God could heal my children. I firmly believe he could. Do I believe they need healed? That is another question altogether. So I pray for strength, wisdom, and knowledge to know what paths and camps to seek advice from and when. I pray for healing. I pray for their teachers and therapists and I also pray that as a society we become more tolerant and understanding.

As with everything in life there is rarely a simple answer.

Do I just accept this?

Well I clearly want the best for my children so I will continue to pursue any avenue I feel is right for them to help and support them.

Do I change my children or change the world?

Right now I think it is a bit of both. In fact I would even say my children are possible changing the world in so many wonderful ways.

They are starting by changing me.
image   image

Things could have been so different

Every so often you get a moment in time when you realise that things could have been so different. A photo, a sound, an item you find, or maybe even something you read. For me it was seeing my children playing together. Because with the vastness of difference of ability, despite being exactly the same age, moments of true interacting together do not happen as often as they should. Naomi wants to play established games with rules, or imaginary games enacting various things she has read or watched, or colouring in and practicing writing. Isaac is still at sensory play, chewing toys or throwing them about the room. And with one talking in full sentences and the other twin still not able to say one word, it makes playing together a very real challenge.

So when they both just wanted to post food cards into a greedy gorilla game it was lovely.

20140325-211603.jpg

 

But that moment did make me wonder…

I wonder what it would have been like if neither of them had autism. I wonder what it would be like if Isaac did not have his complex needs. What would they talk about if they were both fluent speakers? What would it be like to have the moments of quality time reading bedtime stories to two children rather than just one? What if I could ask them both what they would like for dinner rather than only asking one and having screaming from the other? What if they could dress themselves, were both independent in going to the toilet, were going to school together like siblings should, had friends round to play? What if I could take them both in the garden and watch them kick a ball together without fear of one of them running away?

Things could have been so different.

Today Naomi’s nursery asked the children to dress as a character from a book as part of literacy week. There was never any doubt in my mind who Naomi would want to dress up as due to her love of all things ‘Topsy and Tim’. And as my daughter left for nursery dressed in school uniform the same as Topsy in her favourite book, ‘Topsy and Tim start school’, I could not help but once again feel things could have been so different. You see Topsy and Tim are five year old twins, just like Isaac and Naomi. Like almost all twins they share all their experiences together. Even Naomi could not help herself this morning in commenting that it would have been nice if her brother had gone with her dressed as Tim. She wasn’t just referring to today at nursery either, as she is now realising that when she starts school in August her brother will not be there. Up until now ‘school’ to her was where her brother went. Now ‘school’ is becoming two different places as she processes the fact her brothers life will never be the same as hers.

20140326-084812.jpg

Things could have been so different.

I could have walked to school with both my children. I could have been washing jumpers with the same logos on. They could have done their homework together, went on school trips together, played with each other in the playground, had the same holidays, had school photos together.

Instead we have different days off, the inequality of one child experiencing horse riding, swimming, sensory rooms, soft play and interactive tv’s while the other will have homework, reading and writing. We have challenges of one child using language to get what they want while the other lies frustrated on the floor, unable to tell us what is wrong. We have the balancing of needs of two very different children who are the exact same age. We have the pride of watching the smaller, younger twin teach her brother simple life skills like brushing teeth and holding a fork. We have five year olds still getting pushed in swings designed for babies. We have five year olds still in nappies.

20140325-212445.jpg  20140325-212258.jpg  20140325-212016.jpg  20140325-212027.jpg  20140325-212036.jpg

Yes things could have been so different.

But then we would never learn to celebrate the simple, everyday events. We would take for granted the wonderful moments in time when they break through all their challenges and play together. We would never experience pride in seeing them achieve things that other children achieve easily. We would never have met some truly inspirational and encouraging people walking similar journeys. And we would never have compassion for others like we do now.

‘What if’ will always be there but it is better to let go, mourn and release the fear and embrace the ‘what is’ of all the wonderful things your child is. All children achieve. All children develop. And all children love. All children bring joy.

Things could have been different maybe, but things are wonderful just the way they are.

20140325-212445.jpg  20140325-212435.jpg