Tied up in knots ..

Dear Chroniclers,

you would think tying a pair of shoes is a pretty easy thing to do, but take a break for a second and have a go.

So now, could you describe how to carry out this apparently simple task to a young boy with learning disabilities who struggles with each and every fine-motor movement ... time and time again ... with endless patience?

That's exactly what one Sea-Scout leader did for our son, reallyfried, over a period of some years. This weekend, reallyfried and I revisited together the place where it all happened and here's his story, or at least part of it. Want to join the two of us as we retrace our steps back in time?

We Heard the News Today ... Oh Boy

We first learned our son was mentally handicapped (as it was called in those less politically correct days) when he was six months old. Dr Phlegm and his wife called round to the House one fateful Saturday evening to break the news.

They told us to sit down and take a deep breath, then we listened as the good doctor told us, as clearly and calmly as he could, there was no guarantee reallyfried would ever walk or talk. A pretty difficult thing for anyone to have to do, and even more so for the Phlegms, who are both our closest friends and reallyfried's God-parents.

I rang the head of the horology factory to tell him why I wouldn't be in for a week, and we sat down to plan. Mondays, Wednesdays and Fridays were to be mrs electrofried's - Tuesdays, Thursdays and Saturdays were mine. And then, come Sunday, we would both cry.

A Smiling Face

There are many things we remember so vividly from that first week as we began the grieving process for the son who never was. We went shopping, determined to keep life as normal as possible, and ended up in Laura Ashley choosing some new wallpaper for reallyfried's room.

An elderly couple came up to us and bent down to peer at reallyfried in his buggie.

"Isn't he beautiful!" said the old lady.

Fortunately, it was my day. I got to leave the shop and sob my heart out. Poor mrs electrofried got to choose the wallpaper - a refreshing shade of blue, as I am reminded by my dear wife.

It's in the Eyes

One of the hardest things we had to do early on was to establish eye-contact with reallyfried. He had some autistic tendencies, but we knew these must be overcome if he was to make any progress.

The Health Visitor brought it round one day - it looked, to all intents and purposes, like a miniature electric chair, complete with padding and straps. She showed us how to secure him safely within this strange and threatening contraption and then how to hold his head so he had no choice but to look at us. The young man was having none of this. My, how he howled and screamed and struggled! But we persevered and, bit by bit, there was progress.

One fleeting and precious second of eye-contact eventually turned into two, then three. And after a while reallyfried could look us in the eyes without flinching. He discovered eye-contact, while mrs electrofried and I discovered the profound power of"tough love".

One Small Step

Our next task was to work on the walking.

Reallyfried had the most amazing footwear, courtesy of the National Health Service. They built him "Piedro Boots", leather-tooled and hand-sewn in the coolest shade of blue. Were it not for the fact he could barely manage a single step without falling down, he cut a fine picture in the Piedro's - a kind of up-market Doc Martens with a twist.

Watching him struggle to his feet, long after all his contemporaries had passed him by, was a salutary experience. I remember in particular one bright summer's day, sitting in the shade of a cherry tree in the middle of some Botanical Gardens, as reallyfried made his way, slowly and painfully to the bottom of a long lawn where a brass-band had just set up to play. He was accompanied on his journey by maximouse, our eldest daughter, and two years his senior.

Reallyfried left the safety of the shade and struck out in his own inimitable fashion. With much effort he got to his feet, took but one step, wobbled then collapsed in a heap. And again he rose, and again and again ... until. There was a group of young boys gathered by the bandstand who had spotted his faltering passage. As reallyfried neared them we could hear their taunts.

It has to be said, maximouse has not always seen eye-to-eye with reallyfried in the intervening years, but this day she made a stand for him we shall never forget. Summoning up the full height of her five year old frame she marched across to the group of jeering boys, planted her hands on her hips and yelled,

"He's MY brother ... what do you think you're laughing at???"

It would have been easy at any time during reallyfried's perilous journey to the bandstand to have walked over, scooped him up in our arms and carried him back to the safety of the cherry tree. But then he wouldn't have learned how far he could really travel. He wouldn't have experienced the feeling of success after so many falls, bumps and bruises. He wouldn't have lived to his full potential.

Just maybe, we could all celebrate our own falls, bumps and bruises as we pass by this way ...

Enter "Blue"

Back to the walking, and watching reallyfried, we'd spotted that if a dog came into the room he would track it intently. We reasoned that where his eyes went, his feet might follow - so enter, "Blue" the Retriever, conceivably the densest dog ever to have padded the lanes of Little Wittering. He arrived as a not inconsiderable bundle of white puppy fluff and was to leave his mark indelibly on our family.

Whilst Blue was undoubtedly toward the back end of the queue when the brains were being handed out, he had many qualities in his favour. Steadfast loyalty, patience and focused determination were amongst them; if there was the slightest crumb of discarded food within a half-mile radius he would set-off in search of it, usually with reallyfried in tow.

Over the years, Blue tolerated much at the hands of his small friend. In his time, he was used as a canine step-ladder, a hot-water bottle and, most bizarrely of all, as a canvas for a piece of experimental art. Reallyfried had discovered a free sample of lipstick attached to one of mrs electrofried's magazines, and whilst her back was turned, had decided to apply a series of dazzling pink stripes to the side of his white-coated chum.

By the end of his ordeal poor Blue looked, for all the world, as if he had been beaten to within an inch of his life. Commendably, he bore his new found make-up with much stoic dignity, even though the lipstick in question was of the water-proof variety and proved impossible to remove. We had no choice but to wait for it to fade. In the meantime we were reduced to taking Blue for his daily constitutional during the hours of darkness for fear of a dawn-raid by the massed ranks of the RSPCA.

Sadly, Blue passed away some years ago, but not before his young charge had grown tall and confident enough to take him out for walks around the block. The circle had come full turn as we watched reallyfried disappear proudly onto the streets of Little Wittering, Blue padding patiently behind. He who once had followed, now took the lead.

The School of Life

At long last reallyfried was up and on his feet, so our thoughts turned to schooling. We had decided early on to do whatever we could to help our son make his own way in the mainstream of life, to attain as much independence as possible. With this in mind we approached the well-respected CofE school attended by maximouse to see if they would accept him, despite his pronounced learning difficulties.

At first, he was received with a warm welcome into the Infants Class, but increasingly it became clear this was not the right place for reallyfried. The school was fine for academic high-fliers like maximouse, but not for those who lagged behind. And our son fell, with increasing frustration for both the school and he, further and further behind.

Christmas Tears

The low-point came during the performance of the school Christmas play. Tea-towel secured firmly in place about his head, reallyfried was so much looking forward to taking part. As the audience assembled, a teacher chose foolishly to seat him at the very front of the stage with the other "extras". We watched, horrified, as the inevitable happened. Reallyfried lost his balance and went head over heels, crashing onto the hard wooden floor beneath.

The Headmistress took charge immediately. She leapt to her feet, swept him up firmly in her arms, placed a hand across his mouth so no-one could hear him crying and took him back-stage. Reallyfried was to take no further part in the proceedings. Whilst the Headmistress made sure no-one else would see his tears, we could feel them.

Everyone's Special Here!

The next few months were spent scouring the area for another school that would take reallyfried, and we found it at last, right under our very noses!

What a contrast. At his first school it was all well-to-do, high-flying families in an affluent and largely middle-class area, and now we were stepping through the gates of an iron-railed comprehensive-feeder in the middle of a Council estate. Only this time there was something rather special that shone out - the love of a dedicated teaching staff and the support of families who really wanted to make a difference for their children.

Reallyfried fitted in perfectly from day one, because at this school every child was special, no matter what their circumstances or background. He, and we, were welcomed in with a warm embrace and a healthy dose of reality. We have so many stories of joy to illustrate the difference, and here's just one.

The Crowd Cheers!

It was another blisteringly hot summer-afternoon, the perfect setting for school Sports Day, and reallyfried, like all the other children was going to be taking part.

The time came for his race and he took his position in the middle of the starting line, along with nine others from his class. The objective was to negotiate the length of a short grass-track whilst propelling a soft-ball with a hockey stick.

The starter's gun went off and the race began. Unsurprisingly, reallyfried was left stranded as the others set off in hot pursuit of the finishing tape. But then a strange thing happened. The girl leading the race suddenly slowed, then came to a halt. The boy next to her did likewise, and one by one all the others followed suit.

It was like the parting of the Red Sea. Slowly but surely, reallyfried made his way along the course, through the line of waiting children and towards the finish. The parents got to their feet as one and cheered him on to victory. I doubt there was a dry eye in the school that afternoon.

Mrs electrofried spoke to one of reallyfried's class-mates after the race was over. She told her it had all been their idea. They wanted reallyfried to win something for once in his life, and they were determined to help him do it. Just one small example of why this school shone out like a beacon to those around.

A Cub Begins

So now you know some more of reallyfried, where does a Scout-troup and the tying of shoe-laces fit into all this?

We need to trace our steps back again to his early childhood and the desire to give our son as many normal experiences of life as we could. Reallyfried joined his local troup as a cub, just in time to take part in the annual Scout Gang-Show. Like all the others in his pack, he donned the grease-paint and a spotted outfit to take to the stage as part of the "Ugly Bugs' Ball", but this time accompanied by one of the cub-leaders. There was to be no repeat fall from grace!

Seated comfortably in the audience, we watched the cubs twirl and dance to the music, reallyfried doing his very best to keep in time. As the song came to an end the cubs headed for the wings and the curtain drew behind, leaving reallyfried and his leader alone on stage. He looked out into the spotlights, a tiny dot surveying an unfamiliar crowd. And then a big beam came across his face and he raised a hand to wave.

"Aaah!!!", went the audience, and we knew instantly that once again reallyfried had found his place.

The Adventures of a Lifetime

Over the years, reallyfried learned so much from his experiences with the Scout-troup. They taught him the value of exercise, gave him a love of the outdoors, built his confidence, and more than anything else, valued him for who he was.

They weren't afraid to take chances with him, either. I remember vividly collecting reallyfried from his first Scout-camp away from home and being told all about his exploits chopping wood with an axe. Given his difficulties with fine-motor movement, that was one mighty act of courage by a nameless Scout-leader - but reallyfried repaid the trust and showed he could do it just like all the others!

That wasn't the only skill he learned. Reallyfried mastered the art of marching and took part in the Annual Scout Parade, he learned to paddle a canoe and steer a boat, he cooked and bird-spotted, and with each fresh victory another scout-badge was sewn onto the sleeve of his shirt. In his last term with them, he won the Scout of the Year trophy, awarded on the votes of all the troup. A fantastic end to his time there.

There was, however, one thing he struggled with throughout. At the time he enrolled we'd nearly given up hope of reallyfried wearing anything but shoes with Velcroe fastening. But we continued to work on it, now with the able of assistance of a lovely Scout leader who had taken a particular shine to reallyfried. Evening after evening the two of them sat together in the Scout-hall practicing knots.

A Celebration

If you care to return to the photograph that introduces this meandering tale, you will see a young man having his shoe-laces tied. That young boy is .... not reallyfried! Our son is the one doing the tying.

This year reallyfried celebrated his twenty-first birthday and organised his own party with the help of his support-workers, one of whom brought his three year old along with him. When the boy's shoe-lace came loose, it was reallyfried who sprang into action and I couldn't resist the opportunity to take a quick snap as he bent down to tie it tight. All those years practicing had finally paid off!

So this is where we came in. Reallyfried has just attended a 60th birthday party for one of his old Scout-leaders at the Hall where all this took place. His knot-tying friend was there, and how proud he was to learn just how far reallyfried has travelled since the Gang-Show all those years ago!

There is much more still to tell, but for now I leave you with the picture of a young man leaning down to tie a simple knot. What price this memory!

yours as ever,

electrofried (mr)