Ignore, challenge, accept or embrace?

This trip was planned. The sat-nav was set, the kids in the car, the mobility buggy packed, and a toy train in my daughters hand. The long awaiting launch of a charity called Funny Lumps, supporting children with neurofibromatosis type 1, the tumour condition both dad and Isaac have. We were looking forward to it. A chance to meet other families coping with the same condition, the chance to hear information on the condition and a great opportunity for the children to explore the Riverside museum.
I never saw one exhibit. I never spoke to one other family with NF1, and we didn’t get any more information about the condition. What I did see though was a reflection on how the world sees my children. As I witnessed some ignoring them, others challenging them, some accepting them and a few precious strangers embracing them, it opened my eyes to the world outside my own.
Here is the story of the trip to the museum:

I’ve stood here almost 20 minutes now and you are just as excited and enthralled as you were the moment we arrived. Over 50 people must have passed you by now. One or two of whom have actually pushed you aside. An innocent, happy, excited child just engrossed in your own little world fascinated by the simple opening and closing of the doors others are just walking through and ignoring. Doors, two sets, one after the other. Automatically opening and closing as people enter and leave. A little piece of heaven to you.

You notice the exact spot that triggers the mechanism to work, you notice the tiny red flashing light above, you feel the breeze and the drops of rain and the difference in temperature as both doors open at once. You love the passing from one terrain to an other, the transition from inside to out and the change in flooring. You get excited as you see that an approaching stranger is going to cause something to happen that you can predict. And even though you knew what would happen it still brings you delight. Again and again and again. Over and over, time without number. Oblivious to others reactions, oblivious to the cold, or any danger, or even where you are.

I want to be like that. I want to embrace the wonder, the freedom, the awe of it all. I want to accept that this is what you love. Not the fascination of the old trains, buses, taxis and trams. Not the contents of an old campervan. Not the old noises of previous fire engines and police cars. But the opening and closing of automatic doors.

A elderly couple passes by. They ignore you. Families rushing in and out of the pouring rain ignore you too. Coach loads of strangers ignore you. Tall men and short women ignore you. Why pay attention to a flapping, vocalising, strangers child? Why bother with someone clearly different?
In life so many people will ignore us. But keep on going son. Keep on loving life. Don’t let the fact others are not paying attention affect how you are or what you do. It is better they ignore you than hurt you or laugh at you. Let them ignore you. Mummy isn’t ignoring you. God will never ignore you. As others carry on with their life you carry on with your love affair with your doors. And may we all get excited about something and find joy like you have.

A family with a young baby challenges you. You are in the way of their pram. Your world momentarily clashed with theirs. The same with those teenage girls. You just happened to be in front of them. With a little encouragement and physical prompting the challenge was resolved. Sometimes lives collide. People clash. People can get in our way. But patience and encouragement go a long way. Not everyone likes what you do my precious. Everyone is different. In those challenges we all learn though. You had to pop out your bubble for a bit. They all had to be more aware too. A little inconvenience perhaps but life goes on. Think of all those people that haven’t challenged you though. Because the world really is full of love. And there will always be people on your side. Life has many challenges but may we all learn to grow and be better for them. Move on, keep flapping and keep laughing son.

A mother smiles at me. That knowing smile from a weary stranger. The 15 or 16 year old with her is hooked under her arm, held close while he grunts. ‘Autism’, she whispers with love in her eyes. The look of a fellow special needs mum who has found herself in a similar place in the past. Acceptance that life isn’t always as you thought it would be. Acceptance of difference. Acceptance that life goes on and you make the best of it. She gives me hope that one day we might get further. We might get to show you those exhibitions after all, even if your arm is tucked in mine. I wouldn’t be standing here still if I didn’t accept your autism son. I’ve walked the embarrassment, the worry of what others think, the concerns for your safety, the feelings that this isn’t ‘normal’. Dad is walking around the museum worried about you. Concern and stress is eating at him. Because this isn’t how trips out ought to be. But it is what it is. And here we are. We accept you for who you are even when others don’t. Because God accepts you. Just like he accepts me.

A member of staff starts talking to me. She has been watching you and smiling. There to hand out maps of the museum and you are entertaining her. And she is embracing it. You stop as yet another stranger runs through the rain towards the door. Your laughter and excitement as the thing you predict happens once again. In all the noise of the crowds, through the splashing of the rain on the building, the chatter of hundreds of people, through the ding dong of announcements I heard her laugh with you. A little boy made her laugh. She embraced the wonder and love with you. Then she told me something amazing. ‘Did you know’ she said, ‘that these doors cost thousands of pounds? Many of these vehicles on display were donated, or found, at very little expense but these doors cost thousands.’ She paused. ‘It’s nice to see someone appreciate them. That’s all.’

You did more than appreciate them son. You embraced them.

You are priceless son. And we need to embrace that.

Some might ignore,some might challenge, some might accept, but the more people embrace you in life the better all our lives will be.

Maybe we should all try having fun with some automatic doors! And maybe we need to embrace those who are different more too. Because everyone who passed through those doors that day is special. And everyone is different. Wether we ignore it, challenge it, accept it or embrace it is up to us.

In the irony of the fact we never quite got to be part of a charity launch set to support you and others with nf1, you taught me more than any speaker could.
Thank you Isaac.

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.

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:

or of mum popping out of a makeshift cave:

but she loved writing on the blackboard:

building a 3D palace:

but most of all doing a magnetic jigsaw:

she 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.