I am determined this is going to be positive

Sometimes major breakthroughs in one area come with challenges in another area. This has been so true for us this week as one child has made a huge leap whist at the same time we have had to come to terms with yet another diagnosis for the other one. But whatever both children face I am determined to stay positive. They are both so young and we have the support of some great professionals and a great school for Isaac that I have every reason to be positive.

So I will start with the new diagnosis.

Isaac has always had a eye squint. He was born with it. All my family wear glasses and all my husbands family wear glasses too, so the kid had little chance of avoiding some sort of minor eye issues. Saying that, so far his twin sister has passed every eye test and has no trace of a squint so perhaps his squint could have self corrected given time.

Unfortunately his squint has been getting worse as he has aged. He has, and still does, attend the hospital eye clinic regularly. Then came his diagnosis of neurofibromatosis type 1 in Decemeber and more frequent visits to the dreaded eye clinic, more drops to be administered and more lights shone in his eyes. Neurofibromatosis is a tumour condition that can cause eye problems as tumours form on the back of the eyes. It has always been difficult to fully test Isaac’s eyes as he only focusses on the things he chooses to and so looking at boring pics of grey trains and houses was never high on his agenda. And his learning difficulties and global delay and inability to speak makes conventional testing inappropriate.

Back in mid March I mentioned in my blog ‘Sometimes I cry’ that specialists were now thinking Isaac only had vision in his left eye. One of those gorgeous brown eyes had not formed properly at birth and extensive retinal scarring meant that his vision was affected. Sometimes you could see only one eye was focussing but other times it was yet another ‘invisable’ disability.
eyes

This week we had a home visit by a vision impairment pupil support specialist. Now that Isaac is in full time education this specialist wanted to visit and talk to us about anything we could do at home or the school could do to support Isaac. Through detailed information from Isaac’s eye doctor, information from his nursery and from looking at home photos and videos of Isaac he was able to confirm what we had been hoping to avoid. In addition to having classic autism, neurofibromatosis type 1, global developmental delay, severe learning difficulties, pica and seizures our son also has a vision impairment. What a lot for a 4 year old to deal with! I was sad, I was heartbroken for my baby and frightened of what the future holds but I am determined this is going to be positive. My God can turn any negative to a positive.

Here are the positives:
He is right at the beginning of his education so full support can be put in place now.
He is still non verbal and his speech and language therapist was about to introduce pecs (picture exchange communication). We can now ensure the size and colour of pics helps him see these as well as possible.
His disability money has recently been reviewed and his award given indefinately so informing them of this new diagnosis would simply be a phone call rather than a re-submitting of pages and pages of forms.
His left eye shows great vision so he will not require glasses at present (which is fantastic as these would only get chewed and eaten!)
We now have a further explanation of why he likes to walk up and down beside bushes and walls. He has remarkably developed his own coping stategies by using these large visual markers to support his vision. This boy is inspiring!

Here is my beautiful brown eyed boy enjoying exploring his space blanket this weekend:
space blanket1

And his vision seems to make a remarkable recovery when food is involved. Yesterday I had to leave my soup for a minute to deal with his twin sister who was lying on the sofa unwell. By the time I returned to the kitchen a minute or so later here was Isaac helping himslelf to my lunch!
lunch

His first tooth fell out this week too. In true Isaac form…he ate it! I’m sure it would be a good form of calciun and it is certainly not the worst thing he has ever eaten I can assure you.

And now for something even more positive. Something remarkable. Naomi came home from nursery last week and told us the name of a friend! This girl has never spoken in nursery, although she has been going for two and a half years now. She is selective mute and has social anxiety and is on the autistic spectrum too. She tells us about everyone in nursery (staff and children) by describing what they are wearing, so to finally know a child’s name is such an answer to prayer. This little boy is in her group at nursery and she even said she plays with him! I thought I would push her further and ask ‘have you spoken to him?’ If you count a whisper then we have major progress indeed! My sweet little girl then asked me if we could write Ewan a letter and ask him to come and play with her.

So mummy wrote a little letter to a family she has never met inviting a strangers child to come for a play date. And this mummy was as excited as her daughter when Ewan’s mummy called to set up thier little date. I can’t wait to tell you all how it goes. However anxious or nervous my daughter feels on the day I am determined this is going to be positive. We will do a run to the house first, we will talk about what will happen and we will read stories about playing with other children and going to other people’s houses. And the nursery will support them both and encourage the friendship too. A first ever friend to play with.

Whatever else this coming week brings we have this to look forward to and whatever else we face I know I always have my family and my God.
And a determination next week is going to be positive as well.
Here is my wonderful daughter playing a boys game ready for her first ever play date:
cars

Advertisements

A Different Life

Sometimes life can carry on, every day pretty much the same routine with the same people around and the same places to go to. And then other times something major changes and your life can seem out of control, up in the air, just so unrecognisable from before. Events such as a baby being born, getting married, starting a new job, moving to a new country, or a relationship ending, death in the family or sudden change in career. How we all cope with these changes defines who we are and makes us stronger. We need to adapt to a different life, a different way of doing things. And that all takes time, patience and support.

We had one of those changes last week when one of the children starting full time education for the first time. My twins became seperated for the longest they have ever been and everything changed. And it feels like a different life.

For young Isaac it really is a different life. From the moment he was born he has always had mum, dad, and twin sister around. We have been his stability, his strength, his unmoving support when any change happened around him or anything occurred he wasn’t sure of. Like so many children his age he is incredible close to his sibling and parents and reliant on them for so much. But unlike other children his age, he is far more dependant, far more needy and much less independant. So to suddenly send him in a taxi to school without that life line of support and communication for six hours, 5 days a week is major. Such a different life for him. And such a different life for the rest of us too. He needs time, patience and support to help him adapt to that different life. We all do.

But he is coping remarkable well considering his life has changed so much. His diary on his first day at school read: ‘Isaac had a great first day at school. Very happy and laughing a lot of the day.’ He can’t tell us about his time away so that diary is a life line. We can only go by his behaviour, his body langauage and his reaction to things at home to judge how things are going in that different place where life is so so different and strange for him. At home he is exhausted, clingy and needy. And after just three days at school he has already caught an upper respiratory infection. Different life equals different germs.

But he loves his school jumper! In fact he loves those jumpers so much we had to hide them at the weekend. But he searched his wardrobe and pulled out every item until he found a red jumper! He doesn’t recognise the school logo so this was an old jumper from a previous nursery but it was red! And it was the only thing he was willing to wear on saturday.

Image
If this helps him cope and adapt to his different life then so be it. Good job he quite suits red.

Naomi now has a different life too. She has to travel to nursery without her brother sitting beside her. She has a new key worker at nursery and new children in her group. And now when she come home from nursery she has almost 4 hours on her own with mum and dad. And no longer any afternoon naps after nursery too. For the first day she got so upset when we didn’t make any lunch for Isaac. It was so hard for her to learn she could set up her train set and her brother would not come and take it apart and chew the track. She was so clingy and tearful. And asked after Isaac all the time. So emotionally exhausting for her to be apart from him for so long. She only agreed to watch her favourite dvd on agreement that we would put Peppa Pig on for her brother as soon as he came home. Sweet, but also very revealing.

This girl has had to live a very different life to other 4 year olds. She has had to learn to put her brothers needs before her own all too often. She has trained herself to cope with her games being broken and pulled apart and chewed by her twin brother and not get upset. She has leant how to go to sleep when he is still making so much noise in the room next door. She has adapted to his ways, grown to understand his attemps at communication and knows just when it is best to keep out of his way. But now she has a different life. Now she can really be a four year old girl for the first time. Now her needs can come first for once.

So for the first time ever she got to visit a museum this week. She wasn’t sure what to make of the statue:

Image
or of mum popping out of a makeshift cave:

Imagebut she loved writing on the blackboard:

Imagebuilding a 3D palace:

Imagebut most of all doing a magnetic jigsaw:

Imageshe still asked about her brother lots. And when we got in the car to come home she did tell us that it would not be a nice place for Isaac because there wasn’t enought straight lines!

The first thing she wants to know when Isaac gets home is what he has been doing in school. On Friday he spent some time in the schools multi-sensory room and in thier soft play room. This is what she thinks school will be like. Oh boy, she is in for such a different life this time next year when she starts the local mainstream school! Isaac will be going horse riding and swimming with his school too. So we will be doing fun things with Naomi at home.

We popped to the local shops with just Naomi one afternoon. It felt so strange just walking in without having a trolley with her brother in. It felt even stranger getting to walk around the ailes without hearing screams and cries and to walk out of those beloved automatic doors that I have spent so much time watching my boy flap and woop in amazement at for the last few years.

A very different life for mum and dad too. Why, we have even managed to enrol ourselves on courses with the national autistic society this week and enjoy a breakfast date together.

Soon this will become everyday life for us. Every day pretty much the same routine, with the same people around and the same places to go to. Until the next change happens and we start a different life again.

Change is hard for everyone. But with time, patience and support we can all adapt to a different life, wether that is without a loved one, a partner you once had, or adapting to a new baby, a new country or starting school.

A different life. But a good life. Because different might have it’s challenges but it also has it’s rewards. I am going to miss our old life. But I am determined to embrace this new, diffferent life too.

I need to trust him

The house has been quiet for 2 and a half hours now. My tears have been shed, my tea has been drunk and I am finally composed enough to record the significant event known as my baby boy starting school.

I have been tempted to call and see how he is doing. But I need to think back only to yesterday and the many signs that all will be ok. I need to trust my boy. I need to trust the school and his teacher. I need to trust God.

Yesterday the school called. I had truly hoped they would as I had left a message on thier answer machine. The teachers were in two days before the pupils started but they never called on Monday. I was beginning to doubt. The transition to school had not been good enough for my boy. They sent out pictures of his new teacher and assistants. His taxi driver and escort came to visit. His new speech therapist came to visit too. But none of this was concrete enough for Isaac and he wasn’t looking at the pictures. He wasn’t transferring the fact he had seen someone at home to seeing them in school. He really needed to meet his teacher, assistants and see his classroom. The same way other children need to try on thier new school uniform to make sure it fits.

I had left a message for the school but I had to trust them. And then they called. We could go and meet his techer and all the other staff in his room at the end of the last teacher training day. In a school that teaches children with a huge variety of complex medical and developmental issues thier training that very day had been on autsim! Once again God was going before us preparing the staff for my sons arrival.

Isaac loved the room. There were windows he could look out of, door frames to run under and look up at and plastic food to chew. The staff were fab with him and 15 minutes in the classroom was enough to settle my heart and settle his twin sisters heart too. And breathe…

Then the head teacher handed me a bag of brand new school uniform. “This is Isaac’s” she said. We told them there had been a mistake. We had ordered and paid for his uniform before the holidays. They checked thier records. No mistake. No confusion. Someone had ordered and paid for three school jumpers and three school polo shirts the exact size my boy needed. The school have no record of who did this. It was’t family or friends. I believe God was letting me know all would be OK. He was preparing the way for us. Over £50 of school uniform gifted to us by an anonomous donor. That is God!

We kept the kids busy yesterday. And by 8;30pm, by some miracle of God once again, they were both sound asleep. Bags ready, clothes prepared and prayers all said. One final goodnight kiss to my baby boy before he became a big school boy. One final goodnight kiss to my baby girl before she prepared to go to nursery without her brother.

Image

the bags all ready.

The kids woke up in plenty time. There was no crying, no grumping or arguing and Isaac even laid down himself to get his nappy changed and get dressed. We were all outside waiting by 8am. Thankful for a dry morning. The nursery bus was due first and we were concerned at how Isaac would react to the bus coming and he wasn’t getting on. Trust, Miriam, Trust.

The taxi came first! Followed just minutes later by the bus. My boy walked beside his daddy to the end of the street for the taxi.

Image

he climbed into the taxi like he had always done it, even though it was his first time.

Imageleaving his twin sister looking so sad.

Imageand lost on the bus. She just wanted that seat to have her twin brother on, not her nursery bag.

ImageWe waved goodbye to our children. Only one waved back. Then dad and mum jumped into the car. We knew God had brought both the taxi and the bus together for a reason. Our hearts desire was to see our boy walk into that school building like all mums and dads want to see when thier child starts school. The logistics of that seemed impossible for us though. His school was no less than 13 miles away! Would it even be possible to follow a taxi that far? As soon as the taxi arrived he was to be taken straight into the building and handed over to staff. We could drive all that way and miss him.

Trust Miriam, trust.

We never got more than 3 cars apart from his taxi all the way there. If the taxi had green traffic lights, so did we. And though it would have been very unsettling for Isaac to have seen us, I did manage to get a picture from a distance:

Imagethat little boy at the top of those stairs is my baby.

And I am trusting him. Trusting that he will enjoy his day. Trusting that he will cope with all the changes. Trusting he will enjoy his school dinner. Trusting that one day he will be able to share some of his day with me. He still can’t talk. But I trust he will.

Naomi is due home any minute. I can’t wait to see my baby girl again.

Another 4 hours to go until I get to see Isaac. Trust, Miriam, Trust.

God has it all under control.

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.

We went on holiday…and autism came too!

Ah, holiday time. Time to get away from all the stresses in life, chill out, relax and get away from it all. Ermmm…I am a parent carer of two children with autism so I went on holiday..and autism came too. Very few people would dream of taking thier full-time work on holiday with them but I had no choice. There is no respite breaks and no other family came with us to allow us time away from the 24 hour needs of the children. There was no holiday from sleepless nights, 4 am rises, sensory issues, communication difficulties and obsessions.

But we had a great time and made great memories. And I treasure time spent with my children however hard and challenging it is at times. And it really was a break from constant visits and appointments with professsionals, dealing with letters and daily phone calls and chasing up never ending referrals and such like. For 7 days we were not fighting for our childrens rights, not doing some sort of therapy or other with them, not preparing them for the next visit or appointment or filling in any paperwork about thier ever changing needs. For 7 days we were just mum and dad. And that was a holiday enough.

We had to choose our holiday carefully though. After all autism was coming too. No loud evening entertainment, no waiting on planes or trains, no visits to theme parks with loud noise and flashing lights to trigger seizures. No sailing or open seas for Isaac to dive into, no hotels full of people to complain about his sceaming. Nowhere too isolated in case of medical emergencies (Isaac has pica where everything goes into his mouth, seizures that could at any time requiring medical care and tumours, so we always google the nearest hospital anywhere we go) but nowhere too busy that crowds and noise would be an issue. Oh, and even for 7 days Isaac would still require his own bedroom. So we settled on a quiet caravan park…well, quiet until we arrived that is! It is one of lifes ironies that my children do not tolerate loud noise but yet their screams can be heard for miles around!

So what is the first thing you do when you arrive at the caravan? Put the kettel on? Unpack? Have a good nosey around? No when you have autsim you might do what Isaac did…lick the caravan!

Image

And as you can see he had flags with him too. His current fixation is things on sticks. Lollypops, icelollies, flags (especially flags!) and umbrellas. It all goes hand in hand with his utter fixation with straight lines. So you can only imagine his absolute excitement and joy when we drove up to the caravan to see it had decking…rows and rows of neat straight lines. Boy, he could have spend the entire week on that decking come rain or shine. It really is one of the delights of this child that something so simple, something we would hardly even notice can bring him such joy and amazement. It is one of the most enteering aspects of his autism/learning disabilities and neurofibromatosis type 1 that for all his difficulties, he can actually at times be so easily entertained.

He sat like this for hours, cuddling his favourite blanket and running his hands along those beautiful and fixating lines. Who needs kids clubs and expensive enterainment?

Image

He walked up and down that decking with flags:

ImageAnd with an umbrella:ImageWhile his sister read her books over and over and over:

Imageand played with her trains in the exact same way she always does:

ImageBecause you don’t get a holiday from autism. You go on holiday…and autism comes too!

But we went swimming, we ate out (ok so mcdonalds and pizza hut and a fish supper at the beach count right?), we went to soft play, we went shopping and we even went to the local police station!

Yes, my anxious and sensitive daughter got very upset when we went to a local swing park and found an abandoned cuddly toy dog. She creid bucket loads at the thought of this poor dog being left out in the wet and cold at night without a child to cuddle it and she was equally insistant that the ‘rules’ are you must never take anything that isn’t yours. So mum’s solution was a little trip to the local police station where a kind and perplexed policeman was happy to reasure my tearful daughter that they were well used to looking after dogs (I am pretty sure he meant real ones but don’t tell her that) and that lost little puppies were usually claimed very quickly. It might have been nothing for that policeman but boy have we heard the story of the lost puppy in the park over and over and over…mummy does it have a little girl or boy yet? mummy can you hear it barking? mummy how sad it would have been if I didn’t find it? 

Yip, autism came on holiday!

And autism came home with us too. And it screamed when we came in the door. It seams they preferred going back to the caravan than a house full of toys. Or maybe my boy missed that decking and it’s awesome straight lines? Or the life size plastic ice-creams outside shops that he screamed and strectched his hand out for everytime we passed them (perhaps the seaside has it’s diasadvantages after all!). Or maybe they just liked us being mum and dad for 7 days. But most of all I think they just miss being children and not being constantly talked about, dragged to appointments, watched and assessed and having to perform and work with people or thier agenda all the time. Sometimes it is nice to just sit down, cuddle your favourite blanket, suck a pacifier and watch a dvd. After all even autism needs a holiday! 

Image

(P.S. Don’t ask the kids about their holiday. Isaac is non verbal and Naomi will only tell you about the night she had a nose bleed, the nightmare she had about a cow coming into her room and that story about the lost puppy at the park! She might also tell you about the fact she was in a magazine too which is also true but she won’t belive you if you tell her you have seen it as she only thinks it was in a magazine at the seaside! For those of you in the UK her story appeared in take a break magazine this week)