Autism is

I was asked to write a poem to mark world autism awareness month on April 2nd. There are so many misconceptions about autism and I wanted to show people how vast the spectrum can be. So here is my poem.

Autism is

Unable to speak, or maybe speaking too much
Hugging everyone, or disliking touch
Escaping outside,
Or trying to hide
Excitedly flapping
Inappropriate clapping
Autism varies so much

Won’t wear a coat, or wears one all year round
Fussy eater, or would eat dirt from the ground
Screaming or humming
Annoyingly drumming
Toys in a line
The same way every time
Autism varies so much

Struggling to learn, or has wonderful gifts
Obsessions of numbers, trains, films or lifts
Spinning around
Throws things on the ground
Constantly spitting
Aggressively hitting
Autism varies so much

Alone without friends, or controls every game
Always looks different, always dresses the same
Swinging on doors
Head banging on floors
Freaks at the dryer
Keeps climbing higher
Autism varies so much.

Can’t answer questions, won’t do as their told
In their own world or bossy and bold
Over prepared
Anxious and scared
A spectrum so wide
But they all bring us pride
When autism touches our lives.

And here is what autism looks like in my life:

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.

 

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.

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.

        

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.

  

 

So she’s going to the mainstream

This time last year I was eagerly awaiting news on where my son would be going to school. We had no fight to get his name forward to the council as a child who would not be suitable for mainstream school, but we later had to fight to secure the right school placement. This week we had his second parents evening and he has settled well and is achieving within the right environment. We chose to defer twin sister Naomi from starting school as she was not yet diagnosed and a year could make so much difference to her development.

So here we are a year later. Naomi has grown in confidence, cognitive skills and comprehension and has much more understanding and awareness than last year. But she is still struggling (and always will) in areas affected by her autism diagnosis and also in her physical and independence skills. She is also doubly incontinent too. I have fought unsuccessfully for her name to be taken forward to the council as a child who would benefit from specialist education. Places are so limited and more and more children with autism are expected to attend mainstream schools.

At this present time the only advantage to this is that transition to school can start early. And that is very much a positive for a child with huge anxiety like Naomi. So last week it all began.

The Head Teacher, alongside the home/school link worker came to visit at home and gifted Naomi a school bag and a sticker book.

And as a thank you Naomi made a card in return:

I walked Naomi to the school to give them the card and we were able to talk to the office staff and the janitor. Naomi took a book with her and the staff took time to look through this with her. I have to give the school credit for this. And while I have reservations about wether the school can really meet Naomi’s needs, as her mum I will endeavour not to pass these concerns onto Naomi. She needs me to be excited for her in this new adventure. She needs me to support and encourage her and to help her understand this big change.

It’s a bit like one of her favourite bedtime stories ‘we are going on a bear hunt’ where it all becomes a big adventure yet the whole family still feel scared when they finally meet the bear. Only we won’t be running away. We will be facing this together, praying that this really exceeds my expectations and she excels there the same way her brother is excelling in his own way in his specialist school.

Talking of the bear hunt…here is my thoughts on her going to mainstream to the song of ‘we are going on a bear hunt’

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared look at all those children!

Oh yes! A visit from the Head Teacher
She could have brought a pencil, she could have brought a tie
She bought her a school bag!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared, she has an IEP?

Oh no! The IEP from nursery doesn’t count in school!
We call another meeting, lots of people talking
The school will write a new one

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared my daughter still wears nappies!

Oh no! They haven’t got a changing room
She won’t get 1-1, but she’s gonna need assistance
I can see some problems!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared there’ll be plenty of transition?

Oh no! She’ll be treated like the others!
We won’t know who’s her teacher, they’ll be no-one from her nursery
And they wonder why she’s anxious!

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared, she has asd!

Oh yes! Another visit next week
I’ll need to work with them, we’ve secured a csp now
They know my name already!

She’s going to the mainstream
It’s gonna be a big thing
I’m not scared it is just around the corner

What? The uniforms are in the shops? Quick! Let’s look at the photos of the staff again, let’s reread every book on starting school ever written for kids, try on the new jumper, pack the school bag, get the packed lunch ready….oh it’s only March!

Why do I still get scared at her going to mainstream?

Let’s hope my concerns are all proved wrong.

Hopefully this time next year I will look back on this blog and wonder what all the fear was about…

The power of a friend

To have a friend. To share laughter, smiles, dreams, moments in time. To have someone to hug. Someone who understands. Someone who wants to be with you. Someone who looks out for you, seeks out your company. Talks about you. To see a smile on someone’s face when your name is mentioned. To know someone cares and loves you.

This.

Well what can I say? My daughter has found the magic that we know as a friend.

I have spent hours reading her a social story written by her speech therapist. To the point both Naomi and myself have it memorised. “I can say ‘hi’ to someone and take their hand. We can have fun playing together.” How simple does that sound? But when you can’t get that little word ‘hi’ out because you are so frightened, so anxious and overwhelmed. When you see so many faces of children that you can’t work out who the ‘someone’ could be. When you don’t have the courage to touch another child let alone take their hand. So we read the social story, we talked about it and we even tried to act it out. But we still had a child coming home from nursery with hands on her hips complaining ‘mummy, they want me to talk to other children. Why would I want to do that?’.

How do you explain the beauty of friendship to a child who loves their own company more than anything else? Friendship has to be experienced to see the true wonder of it. The healing that can come through having someone want to be with you. The joy that comes from sharing life with someone else.

And then Sarita started nursery.

Naomi couldn’t say ‘hi’ like her story said she should. So she smiled instead. And Sarita smiled back. That was 9 weeks ago. Now one three year old child has changed my daughters life. She started talking to Sarita on the bus. And then began to talk to her in the nursery room. And one day her nursery teacher asked Naomi a question. And because she had broken her silence by talking to her friend, with Sarita right by her side, my daughter found the strength to answer the teacher in a voice that could be heard.

With Sarita sitting beside her, Naomi has started taking part in snack time. Her little voice can now be heard at singing time mingled beside the sweetest voice of her friend. Naomi is choosing to play beside her friend rather than hiding in a corner looking at books. Where before Naomi would watch on while others participated, she is now following the lead of her friend and joining activities she has never touched in almost two years in the nursery room.

The girls have photos of each other in their homes. I can’t begin to explain just how much Sarita and her siblings and parents mean to me in the short time I have known them. I can not even explain the amount we all have in common. The girls could not have found a more perfect friend in each other.

And my heart rejoices. My 5 year old is experiencing the power of friendship. And in doing so she is linking two families, helping two mothers walk together and help each other, encouraging many and bringing healing.

The power of a friend.

The battles and the breakthroughs

“I thank God for the mountains
and I thank God for the valleys
I thank him for the storms he brought me through
For if I’d never had a problem
I wouldn’t know that God could solve them
I wouldn’t know what faith in God could do”
Andre Crouch song ‘Through it all’

Can I really thank God when I see my 5 year old son self harming? Seeing him bite his own hand as easily as he bites into a piece of fruit? Seeing his tears of sadness at the pain but yet having no understanding that he himself is causing it. Can I thank God for the intensity of crying and upset he displays every time I start to cook a meal because he has no concept of waiting or cooking? Or seeing the bruises and the seizures and the scars from his constant falls? Can I thank God as I watch his frustration at being unable to communicate or understand?

               

There is no easy answers sometimes. But I know that without these moments of struggle, of battle in our lives, we really don’t appreciate the breakthroughs when they come. If your child has never self harmed you don’t thank God that they went four hours without biting themselves. If your child has fluent speech you take new words for granted. Because that isn’t a breakthrough for you. But for me these would be a miracles.

So I pray. And hold my son. And believe for breakthrough even when it seems impossible. I can’t give up hope. I can’t stop believing.

And to keep my focus I look for moments of peace. Moments of progress in both children that keep that hope and faith alive. Treasured moments in time that make me think about the future and the fact that there will always be tomorrow no matter how hard today seems.

Moments just like this:

When Naomi had a visit from the Head Teacher of our local school to gift her a school bag in preparation for her starting in August. Oh be still my beating heart. Because this baby is growing up. Unlike her twin brother she has some understanding of what lies ahead. And we can ‘play’ school, read books about it, and even visit. To see her excitement rekindles that faith again. This little one does not think for a minute how her very existence is a miracle. She does not dwell on the support networks that will need to be in place to ensure she is fully supported in school. She sees a new bag, new clothes, new adventures. And I need some of that innocent faith of hers.

As I travel with these two little miracles there will always be battles, and bumps and moments when things look impossible. But their very existence was birthed on the belief in the God of the impossible. And so I thank God for every valley we travel through because it is in the valleys my faith is grown. And having been through many valleys I can testify that God is a God of miracles. and faith in God will carry us through…

This week I made my first ever film. In yet another week of heavy meetings, intense moments of holding my hurting son, yet beautiful moments of seeing excitement twinkle in the eyes of my daughter, I truly thank God for every battle and every breakthrough and for bringing me to this moment in time:
This is how we got to where we are now:

Please continue to travel with us in this journey and experience the mountains and valleys we have yet to come.
Faithmummy x

You have no idea how much I needed that!

It has been a week of all the usual stresses, appointments and lack of sleep that comes with have two special needs children. But right this minute both children are asleep and I have just finished an entire cup of HOT tea. Very much a non event when the children are awake. You have no idea how much I needed that tonight!

This time last week my daughter was still distraught at the ongoing toilet training her nursery were doing. She was crying the second you looked at her, waking in the night with nightmares of being taken to the toilet and believing she was a failure at everything, at the tender age of just 5. I was the one listening to her cries for help, wiping the tears away and trying to give her self esteem the needed boost whist in the background fighting with professionals to support me in realising what this was doing to her. Of course I want my daughter out of nappies but she has to be emotionally, physically and mentally ready for it. And she wasn’t. Finally on the Friday afternoon, after two very long and stressful weeks, I received the phone call that brought the answers to my prayers. It had been decided that she needed a break from toilet training and the programme was now changing from enforcing her to be toilet trained in time for starting mainstream school in 5 months time to ensuring any supports would be in place within the school to support her in this area. When you feel like you are banging your head off a brick wall and getting nowhere it is so emotional to finally know that someone has listened and is implementing change immediately. You have no idea how much I needed that phone call! It was like finally hitting gold when you have been digging in the dark for weeks getting nowhere.

This last week has been the usual leaving soft play early because Isaac is lying on the floor screaming and banging his head because he no longer wants to be there for any 101 reasons he can’t communicate. The usual being pulled away from your dinner that you have just sat down to because he has finished his and wants to drag you to the freezer that he is perfectly able to open on his own but won’t. The usual stripping off, only wearing his red school jumper every day of the week, the high pitched screams because he wants you to type something into google images but you have no idea what. The usual meltdowns whenever you go out because the car went somewhere other than school. The daily eating with his fingers and having food all over his face, clothes and table at 5 years old. The general lack of comprehension, inflexibility, inability to communicate, lack of speech and exhaustion due to lack of sleep. But then I took him to church with me. Just me and him. His sister was ill with an ear infection and dad stayed at home to look after her. This was an invitation for chaos if you ever expected it. Change of car, change of parking space, no mobility buggy as usual, different seats. Was I crazy? Well sometimes you just HAVE to try! He held me hand, walked into church, sat down beside me on a chair like everyone else, and he sat quietly playing his iPad throughout the entire worship until just before the children were dismissed from the service. Granted he thought he should exit via the stage, but I grabbed him in time and he held my hand and walked into creche and stayed without me being called out once. It has taken 5 and a half years to get to this stage. With all the challenges of the week Isaac had no idea how much I needed him to do that that day. Being in church for a service was like having steak for your dinner when you have lived on bread and water for years.

This last week the fridge broke too. While dad set about cleaning, fixing and generally defrosting it all, it meant the entire contents (these things always happen when you have just done a full grocery shop) had to be taken out. While Isaac saw this as an open invitation to ‘help out’ by systematically eating it all, Naomi saw it as a opportunity to line all the food up in lines for us and give me a running commentary on her dads endeavours at fixing the fridge. The unplanned trip to the electrical store of course meant the children needing to open and close every door of every fridge and freezer in sight, only for Naomi to say that none were suitable as not one had any food in for her brother! With medication that needed to remain refrigerated and the constant alert needed to ensure the entire contents was not devoured by Isaac in one sitting, getting a new fridge was somewhat urgent for us. The sales person said he had only two choices of delivery days available left…and one was the very next morning! You have no idea how much I needed to hear that! It was like running a marathon and finally seeing the finish line in sight!

Yesterday we had two hospital appointments in one day. The first brought new information regarding a rare genetic disorder than is in my family. Over twenty years since first hearing of the disorder the gene has now been found and so my blood was taken. Now the wait for more results and very likely genetic testing for both children too. Not the best thing to hear at 9:30am on a Monday morning. The second appointment of the day was a tumour check up for Isaac. His clinic was running over half an hour late. With a severely autistic 5 year old who has just had his routine interrupted by being collected from school early, who is tired, hungry, thirsty and confused as to why he has not been taken home, you know the wait will be a challenge. But we got through it thanks to fluorescent strip lights in the waiting room that he paced up and down staring at and then a short play on his iPad. Then the dreaded transition from the waiting room into the doctors room. But Isaac sat in his buggy and continued on with his game. In the years this doctor has been seeing Isaac regularly she has yet to see him not screaming and self harming. For the first time yesterday she saw him settled, despite the obvious self harming bite marks all over the back of his hands. And even better, his height, weight and general health showed that at present there is no need to be concerned about any of his tumours. Oh doctor, you have no idea how much I needed to hear that. It was like carrying around a heavy backpack for years and suddenly someone lifts it from you. Please let him stay healthy God.

This weekend the twins have respite for a few hours. They love it and the staff love them. You have no idea how much we ALL need this!
I am choosing to dwell on the break from toilet training, the one time Isaac sat in church, the fact we have a new fridge and there was still food here left to go into it when it came, the current stable health of Isaac and the fact he finally saw a doctor without screaming and biting himself. All the other stuff could get me down and I refuse to go there. So I cling onto the positive at all cost…you have no idea how much I need to do that. It is like seeing a rainbow after days of solid rain and realising that finally spring is just around the corner.

“Whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things” Phil 3:8