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!

I blogged, you shared and together we won!

Over 1200 read about my boy being denied a school placement to meet his needs. So it is only right that the same people get to hear what happened today.

We won!

And here’s the details:

We had the letter arrive to say our placing request for a local special needs school had been declined on the legal grounds that the school would need to employ another teacher. To you and I that means the school is full.

We had also asked for the original decision to place him in a unit within a very busy mainstream to be reviewed. The review also came back as the original decision being upheld.

So here we were with the following options:

1. Take the council to tribunal through the summer. We were very very unlikely to win a tribunal if the school is full. 

2. Consider a late deferral and hope to find a suitable school next year. there are only two special needs schools for our whole area. We would have had to go through the whole process next year again with no guarantee of getting it right again.

3. Home school.

4. Do something totally radical and ask strangers to help.

5. Send him to the school they wanted (Not a chance!)

I must be crazy but options 1-3 (let’s rule out option 5 straight away) did not appeal and as we had nothing to lose I wrote my usual weekly blog. And put it on my usual social media outlets. Except this time I begged people to share it. And ask others to share it. Get it out there. Make it public. 

So I blogged. And you shared.

And I emailed the press. Then I called the council. And they got worried. So I sent them the blog too. 

And a few hours later they called to say they wanted to talk. Great. I was delighted to listen. And an arrangement was formed. We could still not have a place in our local special needs school but we COULD have a place in the other school. In other words: WE WON!!!!!

So can I say THANK YOU!

Thank you for playing your part in changing a decision that would have been detrimental to the health and welfare of my son. Thank you for being part of our miracle. Thank you for reading, sharing, talking about it and praying. Thank you for caring enough about a little 4 year old boy you didn’t know. 

Thank you for changing this boy’s future.

I blogged, you shared and together we won! Please feel free to celebrate with me. He has his first induction this Wednesday!!!

Hallelujah.

 

Special child denied special school

I can just see the headline now on the national newspaper. 4 year old boy with tumours has no school to go to. Disabled boy denied the education he deserves. However it reads it will be a riveting story. A story of a young boy who can not talk and is completely incontinent with medical and developmental needs denied the education he deserves by his local council. Shocking. Appalling. Outrageous. But true.

Far too true and way too close to home.

Because this is the child I am talking about:

This is my son!

Isaac has severe and complex needs. He has a diagnosis of classic autism, global developmental delay, learning difficulties and a medical diagnosis of neurofibromatosis type 1. He has no speech and he still wears nappies. He did not learn to walk until he was 3. He is still being tested for a number of genetic conditions. And the law says he has to go to school at a certain age.

Isaac is due to start school in August this year. The law says he has to be enrolled in his local mainstream school which although heartbreaking, I did in January this year along with every other parent of pre-school children in Scotland. I knew he would never attend that school but had to go through the motions of producing all the necessary documents and signing all the necessary forms. But Isaac had already been put forward to the ‘forum’ back at the beginning of December the year before for the council to make a decision on where best he should be educated.

This ‘forum’ did not meet until March/April and at the end of April we were allocated a place in a very busy mainstream school with a unit attached.

We went to view it but it was very unsuitable for Isaac’s needs so we appealed and also put in a placing request for our local special school. We waited a long and agonising two months to find out today that our appeal AND our placing request have both been refused.

So we are expected to send our precious baby to a school with stairs when he can only ascend stairs with one to one support or else he crawls up. We are expected to send him to a school where he would not be getting one-to-one support. We are expected to send him to a school where he would be expected to have his lunch with almost 300 mainstream children and share a playground with the same children. Where there is no on-site nurse to be there in the event of his medical needs requiring attention. Where he would be one of 6 children with only one qualified teacher and perhaps one member of support staff.

As hard as it is for me to write, this is a boy I adore and treasure more than life itself after all, I know within my heart that my sons needs are profound. He self harms and harms others. He can escape within seconds, he eats and chews everything so presents a choking hazard at all times, he has challenging behaviour, he self stimulates, he eats his clothes, he is non-verbal and can not use sign language or pictures to communicate yet. He is completely incontinent and needs changed regularly. He has sight problems and balance problems. He has very little awareness of his surroundings. He can not call or ask for help. He can only use a spoon and his fingers to eat. He can not hold a pencil. He can only understand a few key words. He has no sense of danger.

He is a special boy and all the professionals agree he requires special education. But a group of people who hold the power within the education department, who only know about this boy through written reports, feel it is ok to deny him the education he deserves.

Could you deny this baby boy a special school? I couldn’t!

“It’s ok, I’ve got you”

It was a dry and mild spring evening, the sort you want to make the most of and get out of the house. So we packed the kids in the car, the changing bag, a few little toys and grabbed the leftover loaf of bread on the way out to feed the ducks at Lanark Loch. The park at the Loch has recently been rebuilt and we thought the kids might enjoy some time on the swings, climbing frame and slides after feeding the ducks and swans. We ‘thought’ it would be a relaxing evening. We ‘thought’ we could enjoy some quality family time together. We thought it would be ok. I never for a minute thought I would be writing about that evening days later with the emotions of it all still raw in my mind.

Naomi loved feeding the various animals and was so excited as they approached her eager to enjoy the food she was providing them. Isaac had other plans. So we did what we so often have to do in these situations and resorted to our tried and tested method of parenting these days “divide and conquer”. One parent takes the daughter and the other the son. A simple smile and nod to my ever understanding husband and he recognised the cue that I was heading off with Isaac, hopefully to the swing park. Never try and second guess someone with autism! Unpredictability should be their middle name!

It never occurred to me to check I had the essentials all special needs parents must carry at all times. In our case a watch, the car keys and a mobile phone! As I chased after my flapping, wobbling, vocal four year old who has an absolute love of water my first thoughts were along the lines of ‘will he keep his clothes on today’, ‘how deep is that water?’ and ‘even the swans have got the right idea to get out of his way!’.

But he never headed for the water. He was setting off around the loch following the path of so many dog walkers, romantic couples and runners before him. His eyes were squinted at the edge of the bushes tracking their path as they steered right around the waters edge. Totally in his own world. Totally oblivious to anyone around him. Just engrossed in an imaginary line that only he seemed able to see. I could certainly benefit from the exercise and had no choice but to follow this fascinating child who was off exploring.

He was looking at the bushes. Mum was looking out for obstacles at his feet, uneven tracks that he would never notice with eyes fixated on a peripheral imaginary line only seen by him. I was apologising to fellow walkers approaching in the opposite direction assuming this little one would move out of the way of their dog, pram or running path. But Isaac wasn’t even aware of them as he half walked, half ran in his trance like state. I was saying polite hellos to strangers. My little one more interested in the shrubbery than in people.

As he continued along and I got into his groove my thoughts began to wander as much as he was: ‘Will dad and Naomi have any idea where we are?’ ‘Are they having as much ‘fun’ as me?’ ‘Maybe after all this walking Isaac might actually sleep tonight!’ ‘wow, this place is beautiful. I’m so glad I am getting to see so much more of this place tonight.’

And then he suddenly stopped dead in his tracks! Why, I have no idea. And he screamed this ear piercing scream, a broken-hearted, confused, disorientated look on his face. And real tears. He can’t talk but his face said it all. He finally knew I was there. And he needed me. He had just walked half a mile (.75 km) in an absolute trance and suddenly reality hit and he had no clue where he was and how he got there.

“It’s ok, I’ve got you”

Half a mile is easy to walk in the cool of an evening with only the weight of your own burdens upon you. But with the weight of a 4 and a half year old, a heavy heart and all his disorientated frustrated burdens as well as your own, it is a very long way indeed. And it was right around that time that I suddenly realised I had no phone, no car keys and no watch on. Oh dear. We were alone. But we weren’t.

“It’s ok, I’ve got you”

I kept reassuring him as God was reassuring me of the same thing.

“It’s going to be ok my precious child”

He was hearing me through his tears. And I was listening through my tears too.

“We’ll get through this together.”

He needed to know he wasn’t alone. So did I.

“Look at that duck Isaac! Can you hear that dog bark?”

Sometimes we need to be distracted from our own worries.

We made it back safe and well together. I learnt that night that sometimes we can walk alone in life but at other times we just need held and carried and told by someone “It’s ok. I’ve got you.”

Not finished yet…

“I’m not finished yet mummy” says my 4 year old daughter for the third time within an hour. This girl really does not like being interrupted and everything must be completed before moving on.

“Dinner’s ready”
“I’m not finished yet”
“Bath time”
“I’m not finished yet”
“time for mummy to wash your hair”
“But, I’m not finished yet”

And so it goes on. Even when she has time out on the naughty step and I go to her to give her a hug and encourage her to apologise we still hear “But I’m not finished yet”.
Some parents might see it as cheek, or disobedience or plain bad behaviour. I see it as something we need to work on and help her with. She is 4. She is busy doing her own thing, playing her own game or watching something on a dvd. She is making sense of the world and learning new things. She is sorting out her thoughts and singing her own songs. So we show her patience, teach her using timers that prepare her for the change of activity, and encourage obedience. And we recognise the importance of what she is doing by leaving her line of toys untouched and respecting her space. And she comes to join us for dinner or bath time or gets her coat for going out. And she enjoys it. She is learning to consider others, that sometimes we have to do things in other peoples time frames rather than ours and that there is times when playing needs to stop. Meanwhile I am learning patience, respect and gentleness in my approach. I may be her parent but she can teach me so much too.

“I’m calling to enquire about my sons education. We are still waiting on the results of your recent review regarding his school placement.”
“I’m sorry. We are not finished yet”

Ouch. If I thought my daughter was teaching me patience I really had no idea how much patience I would need in dealing with the local authority! My son has severe and complex needs. He is unable to attend mainstream schooling so we are left with no option but to go through the education system for placing such children in our local authority. It is proving to be a very long and tedious process. His report was first submitted in late November last year. The people responsible for making decisions (the forum) didn’t meet until April. The placement given wasn’t suitable. So we appealed. With just 7 weeks left before term finishes they still haven’t finished the appeal process. Should we be unhappy with the placement allocated after appeal we can either take the council to tribunal or opt for a late deferral. We also filed a placing request for the school of our choice. The council has two months to get back to us on this. Our school saga is definitely not finished yet.

We applied for a co-ordinated support plan for Isaac. This is a legal document recognising all his needs formally and outlining how these needs will be met and by who. It is updated regularly. We had our initial meeting this last week and all of the professionals attending agreed unanimously for this process to start. This should make a difference to the level of care my baby boy receives. He is finally going to be assessed for occupational therapy and physiotherapy. Wherever he attends school, wether this year or next, we can have a peace that legally his needs will have to be met at any cost.
We are still fighting for respite. Naomi has her school deferment finally in writing but we are still fighting to get her speech and language support for her selective mutism and anxiety. We are still waiting on her formal diagnosis. The fight for all that these children require to support them is not finished yet..

“God, thank you for the miracles you are doing in these children. Thank you for all you are teaching me through them. Thank you for the lives being touched by our story…”
“My precious child, I’m not finished yet…..”

“being confident of this, that he who began a good work in you will carry it on to completion…” Phil 1:6

Whatever trial you are facing, whatever difficulties you face today, remember God isn’t finished working yet. And there are so many wonderful things ahead.

Lining up the telletubbies before coming for dinner.

Living in miracle land

What an amazing week! It has literally been one of the most amazing 7 days ever. I feel like I am living in miracle land. Both my children have experienced breakthroughs so significant that I am emotional even thinking about them let alone sharing them. You may not see my tears of happiness and joy but I hope I can convey some of the emotion and incredibleness of this week with you through my words.

Isaac:

Well anyone who has read any of my previous blogs will know how special this little boy is. His daily struggles to communicate, not become overwhelmed with the world and everything around him and to experience all that life has humble me on a daily basis. Isaac is 4 years and 6 months old. But he has only ever said one word. I shared the magic of that wonderful moment a while back in my blog “I just heard him say ‘mum'”. What I haven’t shared is that that was it. He said it on 6th March but never again. Can you imagine how much my heart has yearned to once again hear my child call me mum? Can you imagine my excitement that this word could have been the start of many more to come? But then the disappointment of living daily with only unrecognisable noises and little eye contact coming from your beloved boy. Boy, my patience and faith has been tested as I have longed with all my heart to hear his tender voice once more.

And then yesterday morning, Tuesday 30th April, 55 long days later, he said it again! I went to wake him up and carry him downstairs for breakfast as per his usual morning routine and he threw his arms around me, looked right in my eyes and said mum. Words are inadequate to even begin to explain what that moment did for me. The pain, the heartache, the sheer disappointment of every minute of those last 55 days instantly washed away in a single embrace from my profoundly autistic son. My hope restored. My faith renewed. All in an instant. He knows who I am. He loves me!

Then there’s the moment he went into the kitchen cupboard and brought me out a plastic tumbler. He is asking for a drink. I count this as major progress but he was about to go above and beyond what I thought he could do once again. When I said “juice” he turned and walked back to the cupboard, looked directly at two different flavours of diluting juice bottles and handed me the blackcurrant one! So now he can make a choice. His receptive language has increased exponentially. And he delighted in showing me exactly what he wanted. Mum was listening. Who needs words? His flapping, smiling, excitable demeanor showing me he knew just how amazing he was. I am living in miracle land!

Look out for more miracle updates on this boy. God has started a work and he will carry it on to completion. This boy has destiny.

Naomi:

My beautiful, caring, happy but anxious little girl who has such a hunger for knowledge and a love of life even in the midst of her social struggles and anxieties. But one thing she really struggles with is a fear of animals. But this week she too has lived in miracle land and overcame her fears beyond anything I could expect. At one of our weekly kids clubs this week we had a visit from the animal man. While I had prepared Naomi all week for this event I was realistic in my approach and prepared for her to panic and become upset at the sight of not one animal but an entire room full. But she proved to me we should never underestimate anyone. On Monday night she stroked a rabbit, a bearded dragon, a guinea pig, a hen and a snake! She smiled, she talked and she laughed at her mum who overcame her own fears to prove that there is nothing to fear. Yes I even had a snake around my neck! The things you do for your children! I can not explain how proud I am of my little girl.

Then, (and this one actually deserves a blog all of it’s own it is so fantastic) the same night when in the bath this precious child started to talk about the children in her nursery class. In particular she spoke about two little girls, one who uses sticks to be able to walk and the other who uses a walker. I have no idea what difficulties these girls face and was thankful my daughter never asked. What she did ask was “Mummy, can God make these girls legs better?” What do you say to that? I could only answer as my faith allowed. “Yes, honey. Of course he can.” So that night my 4 year old daughter, with her tender heart, prayed with me for these little girls.You never know how powerful a childs prayer is.

The very next morning Naomi came home from nursery beaming with excitement and joy. “Guess what mummy. It was Shannon’s special day today. We had a party at nursery. Shannon walked for the first time ever today without her sticks.” I am living in miracle land. I defy that not to affect you.

There is something utterly amazing about answered prayer. Even when tomorrow comes with all it’s new challenges and struggles and the memory of miracle land seems long ago I can think back on these amazing breakthroughs and remind myself of the power of prayer and the awesomeness of my God.

Look for the miracles today. Some days they are much easier to find than others. But I believe you will find them. And be encouraged by the faith of a four year old girl. Can God heal? Just ask Naomi!

Holding a snake: