What holidays??

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This afternoon my children start the long summer break from education. My daughter will leave her nursery years behind and begin her formal education in August and my son will have completed his first year at school and will say goodbye to his teacher for the last time as she moves to another school. Except, unlike most children, neither of them have any idea what is going on.

For ten months Isaac’s life has been consistent. He has spent 6 hours a day at school wearing his beloved red jumper and being with the same four other children and staff. He has grasped the routine of swimming, sensory room visits, school dinners and outside playtime. He has become accustomed to going on a taxi journey every morning. He has no concept of holidays at all so seven weeks without this consistency and routine will really confuse him. He will still insist on wearing his red school jumper, because that is what he always does.

He might be on holiday from school but he won’t get a holiday from his autism, or his learning difficulties, or his neurofibromatosis, or his developmental delay. And we won’t get a holiday from them either.

By the time he has adjusted to any new routine of being at home, going trips out, or eating lunch at home, it will be time to start preparing him for his return to school.

While his teacher, speech therapist, support workers, and even his respite carers all get a summer break, we, his parents, have to become all of the above and more in order to keep his development on track and continue to encourage his communication. Except, unlike the professions, we don’t get a full nights sleep, or a wage, or have access to wonderful resources. We get to do it without training, support or a break. We do it out of love.

For three years now all Naomi has known is nursery life. We have read books about school, she has had a few visits, she has seen photos of what her brother has done at school, and we have her new uniform and school bag ready. But still she asked yesterday morning what would she do when she no longer goes to nursery! Because until the reality of starting school happens she can not ‘imagine’ herself doing anything different. Like all 5 year olds she lives in the moment. Seven weeks away is like years away to her. As she hears all the staff saying goodbye, as she hands them presents to say thanks, as she empties out her tray of all her art work and letters, she still hasn’t fully understood that she won’t be back there again. As adults it can be hard to think what any new routine will look like and it can take time to adapt to changes. It will seem strange for me not to hang her coat up on the peg we have used for years now, to put her slippers in her bag for the last time or to drive out the car park knowing I won’t be there again. I find it hard to imagine my tiny five-year old will be wearing a shirt and tie or school pinafore in just a few months time. This change is big for me, so it is huge for my daughter.

So we say goodby to her key worker, her learning support teacher, her speech therapist, her assistant Head and Head teacher. I look at their faces and realise just how many meetings we have attended together over the years, how many times we have discussed my daughters difficulties, how many strategies we have worked on together and how many forms we have all filled in. They now get a holiday from all this. And while we may get a break from meetings and discussions with all these professions, and many others beside, we will still have to work on communication strategies, self help skills, independence, gross motor development and toilet training throughout the summer. Once again we will be working on all these without training, support, sleep or access to the resources they have.

Naomi’s challenges won’t disappear for the summer. In actual fact they may become more pronounced as she struggles with the lack of structure, becomes more social isolated due to not being around her peers and becomes even more attached to me and therefore more anxious when she is apart from me. While she will be delighted to not be forced into social situations or have to join in with others, seven weeks of being allowed to play on her own, being restricted by the needs of her brother, never being away from me and not being challenged in her communication with others will have a big effect on her confidence socially and in her general development.

While I will do my utmost to keep my children entertained, stimulated and happy throughout the summer I also need to keep working on their communication and social skills and their physical and mental development. And we still have hospital and clinic visits throughout as well. Except now we have to take two children along to them all.

I know all the professional who have worked with my children this year deserve a break. I know it is good for my children to have a rest from formal education too. But while they all begin that break at 1pm today the batons gets passed to me and my husband.

Seven weeks of no speech therapy support; no breaks while the children are at school and nursery to get on with paperwork, housework or shopping; no respite; no school meals; no access to the support and resources his school has to offer; and no extra funding to provide any extra support the children need.

Holidays? What holidays??

june1       june2

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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.

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

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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…

She’ll be fine by August?

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I enrolled this girl at my local school today. For the second time. And for the second time I felt sick. 

This time last year I had to enrol both children. And I came home in tears. Is the school that bad you ask? Actually it is a fabulous little school with a good reputation. The staff were friendly and the building pretty modern. But I knew without question last year that neither of my children would be going. The emotions of having to enrol your baby for school are high for all parents but for parents of special children having to hear the other parents excitably chatting about how thier children will embark on this new adventure together and have such fun is shere torture. You don’t want reminded how different your child is to others thier age. You really don’t need it to be ‘in your face’ that your child does not fit in.

The school were geared up for the children last year giving them stickers and having them talk to staff. It was the same again this year. Wonderful for the children going. Heartbreaking for the families bound by law to enrol a child the school will never ever meet. I enrolled my son at that school last year. But he never made it through the gates. And probably never will. The children would never hear thier lessons if he did because he would scream so loud the janitor would be tempted to call the police. For all it is a wonderful school it is just not the right environment for Isaac. And 12 months later I am still not entirely convinced it is the right place for Naomi. But the law said I had to go down there yet again. Sometimes I really don’t like the law. 

But this time I thought I would call ahead. Maybe the Head might be sympathetic? Maybe this time I would be convinced this was the best place for my baby girl. After all we had deferred her from starting for a year so surely that has to have made a difference?

So off I went armed with all the necessary paperwork, including her diagnosis. The school were welcoming and allowed me to speak to the Head Teacher. As I was about to explain my concerns about wether mainstream education was right for my daughter the head began:

“Ok, can she count?” 

“Yes”

“Does she know any of her letters?”

“Yes”

“Can she write her name?”

“Well, yes she can.”

“Is she in mainstream nursery?”

“Yes she is.”

“Well, what are you worried about? School is almost 8 months away. She will be fine by August!”

And away she went…

But…But…But..

‘So what do I do about the fact she is still in full-time nappies? She has bladder and bowel issues and sensory and anxiety problems which is making toilet training a very real challenge. Will you change her? What about the fact she will not initiate any contact with her peers or members of staff so she could be in pain, not understand the work or be unable to do something and you will never know? What about the fact she will take everything you say literally? What about the fact she is coming to your school with a co-ordinated support plan in place (a legally binding support document detailing what support she requires and how often) and a long list of professionals who work with her? What about her inability to dress herself due to poor balance and co-ordination issues? What about the fact she can not climb, or run, or jump or catch a ball. How will you help her overcome her fear of other children? How will you support her autism? What about…’

It didn’t matter of course, because she had left.

They did agree to ‘enhanced transition’ and they did say they would attend any meeting before August to help with preparing her. 

But is mainstream the right place for a child with Naomi’s needs?

Her Educational Pychologist says she has no learning disability. Based mostly on the fact she drew this picture of herself:

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So clearly her social and communication difficulties don’t count. Her gross motor delay does not count. Her anxiety does not count. And the fact she is still in nappies?

She can talk (at home at least), she can write her name and count, and she drew a picture of herself.

So mainstream education is right?

She will be fine by August?

And here was me thinking autism was a lifelong condition? 

Why do I sense another fight on my hands yet again for my child’s education?

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Don’t you worry baby girl. Mummy will sort this out.

It will be fine by August…

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.

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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:

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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.

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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.

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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.

The preparation begins…

I think I blinked and missed some years somewhere! Because today I took the children to visit Isaac’s new school for the first time. School? Surely not! It hardly seems like anytime at all that I was breast feeding this boy, putting him down to sleep in a Moses basket, cradling him in my arms and promising him mummy would always be there for him. 

It didn’t feel like it at the time but looking back I can see that even those tender moments holding my newborn baby in my arms were times of preparation. Filling him full of nutrition, strength, adoration and a firm knowledge that he was loved, wanted and special. Those were precious times. Times when he was perfect and secure in my arms and I was there to protect him and hold him close and be there whenever he wanted. Times of preparing him for an uncertain future. Time of preparing him for a world way bigger than he could ever imagine. Times of preparing his heart with a tight bond of love that whatever he had to go through in life he would never forget that mum adored him and treasured him dearly. 

We have always been close. I pray we always will be.

4 and a half years have passed. Life hasn’t been easy for this precious baby of mine but we have faced it all together. He has faced house moves, hospital appointments, changes to nurseries, two EEG’s, lots of infections and illnesses and so many people working with him. We went through his diagnosis together. We go to every hospital appointment together. It is my hand he takes when he wants something. It was my hair he ruffles when he needs to calm down. It is ‘mum’ he cries when it all gets too much for him. It it mum he wants first thing every morning and last thing every night. Only mum can give him his warm milk bottle. Mum knows what he wants when noone else does.

But now all of a sudden mum can not be there any more.

All of a sudden we have school on the horizon.

And mum can not even walk him to school. Or pick him up when school is over. Or even be there on his first day. Mum won’t be there at lunchtime. Won’t be able to change his nappy during the day or hold him when he gets tired. Mum can only think about him, pray for him and wonder how he is doing over 10 miles away at home. 

The school that Isaac is starting in August is just perfect for him. God could not have prepared a better school for him in any way. It has a hydrotherapy pool, a soft play room, light room, and multi-sensory room. The classes are very small and the staff ratio is very high. There are onsite specialists to help and support him. It is an answer to prayer. 

But Isaac must do this journey alone. He will have to get used to being transported by taxi by strangers. He will have to get used to a much longer school day and having a meal without his twin sister and parents there. He will have to adapt to so many changes. His entire world and all that he knows will be changing so much. He will once again have to get used to not having his twin sister around. Or mum or dad. 

And we will all need to get used to not having Isaac around too.

So the preparation begins for us all. More visits to the school, buying uniform, lots of talking and reading books to Naomi, lots of tears for mum and lots of special hugs for Isaac.

How did he ever get from that baby in a Moses basket to this handsome energetic 4 year old? I must have blinked and missed it!