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

 

I get it!

This week marked one of those milestone moments..Oh yes it was my twins fifth birthday but it was also the moment of me realising that after 5 years I finally ‘get it’. I am finally understanding, even embracing my children’s autism.

Let me show you what I mean in pictures. Because pictures say so much more than words…

November 2009 – my longed for, hoped for, prayed for twins have their very first birthday. Like all parents we want to spoil them and buy them all we can. But they had only just mastered sitting, neither of them were self feeding and neither of them had any words. Nothing to worry about. They were born a little early, there is two of them to care for and all children are different. So we bought them musical toys, activity centres, wonderful books and little cars to sit on.

They both screamed to sit and play with the hanging beads in the kitchen:

Image

 

All children are like that at that age, right?

November 2010 – I long for sleep, I hope for my babies to look at me and talk to me, I pray I will one day see them walk. But I am worried. One can’t even pull herself to stand yet. So I buy them push along toys, brightly coloured building bricks and sorting toys and a ball pool to explore. 8 weeks prior we had first heard that word mentioned. You know, that ‘A’ word that would go on and define our lives. That six letter word that brings fear and tears in equal measure. One child was terrified of the ball pool and cried at all the noisy toys. The other just screamed. And screamed. And screamed. That day was the lowest I have ever been. Because something had stolen my children and I could no longer be in denial. Yes one was looking at books and babbling. But the other was lost. There are no pictures to depict that day. It is a lost day. Because my son was lost by then. And his twin sister damaged by the ‘A’ word I just couldn’t bring myself to utter. Just 7 weeks before Christmas and things were so bad we cancelled Christmas. No tree, no decorations, no presents. My children, especially my son, could not cope and therefore neither could we. Drastic? yes. Necessary? yes! 

It made headline news:

http://www.dailyrecord.co.uk/news/real-life/the-child-who-is-terrified-of-christmas—1089403

It took a year for us to face the press but it was our lowest moment and everyone read about it the year later. The cuteness of playing with the kitchen beads was now a frighteneing reality. A year later when that article was printed our boy had only just started walking. And there was still no words. Curse those kitchen beads!

November 2011 – I’m still longing for sleep, hoping to hear my sons voice and praying for those first steps from him. But I am learning much more. My faith is stronger. I listen to others who have walked this path before me. The children are in nursery. But still neither asks for anything for thier birthday. But in the 365 days since the previous birthday I have watched them and I have read book after book. I have cried on the phone to the National Autistic Society. And I have an idea. It might just work…anything is worth a try. So wrapping paper is banned. Singing happy birthday is banned. Banners and balloons and anything out of the ordinary is forbidden. I buy the kids imaginative toys and games and dvd’s and books. But instead of wrapping it all I actually take everything out it’s packaging. And each child has one plastic box of toys. The boxes get hidden under the coffee table. If Isaac can’t cope it will just be like any other day. But if I can just slide that box out a little…then a little more…well who knows?

And it worked! By the end of the day he was scanning his new bus across his eyeline like it was a toy he had always had. 

Image 

and Naomi finally showed some imagination with her new toy till:

Image

I’m beginning to get it! I’m starting to live the autism life. And finally the screaming is beginning to settle. And shortly after this event I swallowed that ‘pill’ and embraced the fact my son was leaving mainstream nursery, where at 3 he was still in a baby room, and about to attend a special needs nursery. Maybe if I had taken them away from those beads two years ago…or maybe it was always there and I just wasn’t willing to see it yet?

November 2012 – Still longing for my son to talk, and my daughter to speak outside the house. Hoping that one day they might be out of nappies. Praying the world is kind to them. It is getting more obvious they are ‘different’ now they are 4. Finally both walking. Finally feeding themselves and using spoons. But still needing so much help. Both still using baby bottles and dummies. Isaac’s seizures are at an all time high. But it is time to celebrate again. And the boxes worked. So if it works we repeat it. And for the first time ever we are actually get asked for a toy. The obsessions have begun. Isaac loved the idea of the box this year. But a year has passed. And he has forgotten he has to take the toys out of the box. So he stood at that box and smiled and flapped and walked around it:

Image

barefoot. Oh yes, barefoot. Always. I wasn’t even sure what shoe size he was. He was diagnosed by now and I began to choose my battles. So barefoot he was. But I still wasn’t quite getting it. Some of those toys were given away just weeks later. No straight lines. Not sensory enough. I should have stuck to his beloved sensory toys. But there was still a part of me wanting to fight that autism.

And at 4 the train obsession started with his twin sister:

Image

and the lining up:

Image

I think it might have started with those straight lines of those kitchen beads you know!

November 2013 – longing for others to understand my beautiful children. Hoping there is more awareness and acceptance of autism as each year passes. Praying for those amazing people who are doing wonderful things working with my children and others like them. I have watched the children so much. I have interacted with them. I have read the books again. And attended courses. And got so many professionals on board there wasn’t enough room to list them on thier disability living allowance forms. I actually fought to get Isaac into a special needs school. I was willing to blog about it. I was happy to admit his needs were severe and complex if it ensured those needs were met in the right environment. I get it. I accept Isaac might not speak. I have covered my kitchen cupboards in photographs of his favourite snacks. And he brings those pictures to me. I have limitted my language. I wait for him to process what I am saying. I use sensory toys to motivate. We allow him to wear nothing but red jumpers because that is what he wants to wear. Autism is no longer something to be feared. It is something I embrace. I accept he needs a little melatonin to help him sleep. I admit Naomi needs medicine to help her poo. I still change nappies. And use bottles and dummies. But I know things are progressing. And if birthdays are still a box each with all the toys out of packaging then so be it. We can now sing happy birthday quietly. We are happy to buy the children what they want however different that may be.

So Naomi asked for a cuddly number 5 and a train house. So we searched and we found them for her. And number 5 has never left her hands since:

Image

and Isaac got a Peppa Pig annual from two years ago and even takes it to bed. He doesn’t know it isn’t up-to-date. But he knows it is his…and that is progress.

Image

 

We had a very contented 5th birthday. I sat with Isaac. We had one-to-one interaction and he learnt how to put the marble in his new marble run much to his delight. I coloured in with Naomi. And played trains with her. And watched numberjacks over and over. I wasn’t sad to purchase toddler toys for a 5 year old, or embarrased that my son loved the feel of his sisters barbie dolls dresses. And it didn’t surprise me when Naomi gave me one of her toys back and told me she couldn’t have it yet. Because she had been working for that £5 toy for three weeks sitting on the potty having stories and she still had 2 squares of track to move her trains before they all got home. And the rules are you don’t get the toy until you have completed the reward chart. Oh yeah. The rules of autism. How could I forget? 

The kids have moved on so much in 5 years. But so have I. And you know what? I am actually thinking of buying the kids some wooden hanging beads just like the ones they loved back on thier first birthday. They might sit under them and play. They would certainly enjoy the noise of them and the straight lines and the shadows each little bit makes and the way they move, the feel of the shapes, the way they hang. There is no eye contact involved. No social interaction needed. No words needed. Just them being them.

It is autism.

And I finally get it.

 

 

Ignore, challenge, accept or embrace?

This trip was planned. The sat-nav was set, the kids in the car, the mobility buggy packed, and a toy train in my daughters hand. The long awaiting launch of a charity called Funny Lumps, supporting children with neurofibromatosis type 1, the tumour condition both dad and Isaac have. We were looking forward to it. A chance to meet other families coping with the same condition, the chance to hear information on the condition and a great opportunity for the children to explore the Riverside museum.
I never saw one exhibit. I never spoke to one other family with NF1, and we didn’t get any more information about the condition. What I did see though was a reflection on how the world sees my children. As I witnessed some ignoring them, others challenging them, some accepting them and a few precious strangers embracing them, it opened my eyes to the world outside my own.
Here is the story of the trip to the museum:

I’ve stood here almost 20 minutes now and you are just as excited and enthralled as you were the moment we arrived. Over 50 people must have passed you by now. One or two of whom have actually pushed you aside. An innocent, happy, excited child just engrossed in your own little world fascinated by the simple opening and closing of the doors others are just walking through and ignoring. Doors, two sets, one after the other. Automatically opening and closing as people enter and leave. A little piece of heaven to you.

You notice the exact spot that triggers the mechanism to work, you notice the tiny red flashing light above, you feel the breeze and the drops of rain and the difference in temperature as both doors open at once. You love the passing from one terrain to an other, the transition from inside to out and the change in flooring. You get excited as you see that an approaching stranger is going to cause something to happen that you can predict. And even though you knew what would happen it still brings you delight. Again and again and again. Over and over, time without number. Oblivious to others reactions, oblivious to the cold, or any danger, or even where you are.

I want to be like that. I want to embrace the wonder, the freedom, the awe of it all. I want to accept that this is what you love. Not the fascination of the old trains, buses, taxis and trams. Not the contents of an old campervan. Not the old noises of previous fire engines and police cars. But the opening and closing of automatic doors.

A elderly couple passes by. They ignore you. Families rushing in and out of the pouring rain ignore you too. Coach loads of strangers ignore you. Tall men and short women ignore you. Why pay attention to a flapping, vocalising, strangers child? Why bother with someone clearly different?
In life so many people will ignore us. But keep on going son. Keep on loving life. Don’t let the fact others are not paying attention affect how you are or what you do. It is better they ignore you than hurt you or laugh at you. Let them ignore you. Mummy isn’t ignoring you. God will never ignore you. As others carry on with their life you carry on with your love affair with your doors. And may we all get excited about something and find joy like you have.

A family with a young baby challenges you. You are in the way of their pram. Your world momentarily clashed with theirs. The same with those teenage girls. You just happened to be in front of them. With a little encouragement and physical prompting the challenge was resolved. Sometimes lives collide. People clash. People can get in our way. But patience and encouragement go a long way. Not everyone likes what you do my precious. Everyone is different. In those challenges we all learn though. You had to pop out your bubble for a bit. They all had to be more aware too. A little inconvenience perhaps but life goes on. Think of all those people that haven’t challenged you though. Because the world really is full of love. And there will always be people on your side. Life has many challenges but may we all learn to grow and be better for them. Move on, keep flapping and keep laughing son.

A mother smiles at me. That knowing smile from a weary stranger. The 15 or 16 year old with her is hooked under her arm, held close while he grunts. ‘Autism’, she whispers with love in her eyes. The look of a fellow special needs mum who has found herself in a similar place in the past. Acceptance that life isn’t always as you thought it would be. Acceptance of difference. Acceptance that life goes on and you make the best of it. She gives me hope that one day we might get further. We might get to show you those exhibitions after all, even if your arm is tucked in mine. I wouldn’t be standing here still if I didn’t accept your autism son. I’ve walked the embarrassment, the worry of what others think, the concerns for your safety, the feelings that this isn’t ‘normal’. Dad is walking around the museum worried about you. Concern and stress is eating at him. Because this isn’t how trips out ought to be. But it is what it is. And here we are. We accept you for who you are even when others don’t. Because God accepts you. Just like he accepts me.

A member of staff starts talking to me. She has been watching you and smiling. There to hand out maps of the museum and you are entertaining her. And she is embracing it. You stop as yet another stranger runs through the rain towards the door. Your laughter and excitement as the thing you predict happens once again. In all the noise of the crowds, through the splashing of the rain on the building, the chatter of hundreds of people, through the ding dong of announcements I heard her laugh with you. A little boy made her laugh. She embraced the wonder and love with you. Then she told me something amazing. ‘Did you know’ she said, ‘that these doors cost thousands of pounds? Many of these vehicles on display were donated, or found, at very little expense but these doors cost thousands.’ She paused. ‘It’s nice to see someone appreciate them. That’s all.’

You did more than appreciate them son. You embraced them.

You are priceless son. And we need to embrace that.

Some might ignore,some might challenge, some might accept, but the more people embrace you in life the better all our lives will be.

Maybe we should all try having fun with some automatic doors! And maybe we need to embrace those who are different more too. Because everyone who passed through those doors that day is special. And everyone is different. Wether we ignore it, challenge it, accept it or embrace it is up to us.

In the irony of the fact we never quite got to be part of a charity launch set to support you and others with nf1, you taught me more than any speaker could.
Thank you Isaac.

20131022-151023.jpg