Never Underestimate Anyone, However Much They Struggle

2020 has been a year most want to forget but even more so for my family. Even before any virus was in the news my family faced difficulties. Back in January my elderly mum fell and broke her femur.

After an operation and a stay in hospital I went from full time caring for two disabled children and carer for my husband to also being full time carer for my mum.

At 75 her recovery has been long and painful and my children have had to adapt to granny not being able to do many of the things she did before, which hasn’t been easy for them as their own struggles and autism make adapting to change hard.

For my 11 year old son it’s been especially hard. He is non verbal with significantly high care needs himself. Unable to read or write, severely autistic with learning disabilities, epileptic and with a large mass on his brain, coupled with vision impairment and a progressive genetic condition, he very much lives in the moment and, so everyone thought, is pretty much unable to imagine the difficulties of another person.

But one day he showed us all why we should never underestimate anyone, regardless how much they appear to struggle.

I had my mum with me as I was taking Isaac to the park. He ran ahead, as always, giggling and flapping with excitement. He didn’t look back once as he headed for the gate, pulled it open and headed for the familiar frames and slides. Seeing him ahead and knowing he was safe I supported my elderly mum so she could see her grandson playing.

Isaac did his familiar (and very rigid) routine, climbing up the smaller easier equipment and sliding down the slide built for children half his age. He then moved to another area, circling the equipment as he always does and flapping. Eager to enjoy her grandson at play my mum ventured down to where Isaac was.

But then Isaac decided his rituals were complete and he began to make his way back up and towards the gate as I watched from nearby. I was torn now between helping my elderly mum with mobility difficulties or chasing my vulnerable non verbal son who has no sense of danger.

But just then my mum called to her grandson:

‘Isaac wait for gran! I need help. Gran has a sore leg.’

As I waited to stop my son escaping so I could help my mum I watched in astonishment as my son stopped, turned and paused. What happened next blew me away and has taught me a lesson I will never forget.

My son, the most unlikely helper, a child still fully dependent on help himself, unable to verbally communicate, not able to read or write at 11, processed the pain and need for help of another person and responded perfectly. He turned and headed right back to his own elderly gran, reached out and took her hand, and guided her safely back through the park.

As I ran down planning to step in and help I found I wasn’t needed so I just took my phone out and snapped this beautiful picture to always remind myself to never ever limit my child again.

Yes my 11 year old is autistic. Yes he’s non verbal. He absolutely has significant and high care needs and always will. He’ll always need 24/7 care.

But that’s not all he is. He’s also a compassionate, loving, wonderful boy who can show the world that we should never limit anyone, regardless what difficulties or struggles they face in life.

Everyone has potential, even the ones who appear to struggle the most.

Would you swap your hand?

Some years ago I was giving a friend a lift home in my car when she shared some words of wisdom, quite unplanned. She was going through some difficult times but reflected that if life was like a game of cards and we were able to fully see the cards everyone else had in their hands we would always choose to keep our own hand we had been dealt with.

There have been times I have felt unsure about that thought, feeling hard done by or feeling I have been given a raw deal in life and the idea of swapping with someone else, whose hand seems so much easier, appealed greatly. We all have times when the grass always looks greener on the other side. We look at the smile on others faces and assume the hand they have is easy and they are going to win. We read status after status on social media and assume everyone has a wonderful life because this is how they choose to paint it. Many have mastered their poker face. Years of playing the game has convinced them there is advantages to hiding their pain and smiling through difficult times. But what if you had the ability to see the full hand they had been dealt with? The chances are you would look at your own hand with a new perspective and appreciation.

There have been times I have wanted to lay my hand down and quit. As my children received diagnosis after diagnosis, my home got repossessed, appointments mounted up and nights were never-ending, quitting seemed so much easier than playing on. My ‘losing’ appearing so much worse by seeing others ‘winning’. But the fact is while you still have cards in your hand you have everything to play for. For a season I just needed to concentrate on the hands I had: the beautiful children I got to kiss each night, the roof above my head, the food on my table. A few special cards can mean so much more than a pile of insignificant ones. Used strategically and carefully any hand can be amazing for the right player.

There have been times my hand has seemed huge. I have felt blessed by friends around me, my marriage has seemed strong and my cupboards have overflowed with abundance . Many have looked at me with respect or jealousy thinking I have it altogether. They have wanted to swap hands with me thinking life must be easy for me. They have looked at things from the surface seeing only what looks like blessings. They see a new car in my drive, they see children’s toys in my garden and they see my children with expensive technology. It all looks fantastic. They think my life must be effortless. They perhaps don’t know about the times I looked on them the same way with those similar feelings. Because they are not able to see my full hand they may not know that the car is leased through a scheme for the disabled because of my child’s complex medical and developmental needs. They may not know that my son carries an iPad around with him as it is his only form of communication because he is totally non-verbal.They wonder how I can afford to stay at home instead of ‘working’ without realising my job as a carer may be unseen but it is extremely intense both day and night.

Other times it can all seem quite equal. The dealer deals the same amount of cards to everyone and the game is anyone’s call. But as each player sees the hand they have been given and does their best to turn it into a winning hand it is important to always look at your own hand as important, beautiful and worthy. Even the humble ‘2’ can become a winner to the right player. It is all about how it is played that counts.

Wether you are playing the hand of a single parent, raising children with disabilities, wrestling with health issues or struggling with huge responsibilities of caring or debt, always remember that if you had the ability to fully see the hand that others are carrying you would realise that, in fact, the hand you have is the very one you can handle. You have that hand for a reason.

I don’t know your hand in life. I don’t know your struggles or you talents and gifts. But I have faith in every one of you. I have faith you can take that hand you have and win the game. You can become a gifted player in life no matter what hand you have been dealt. Just keep playing.

Do you fancy swapping your hand? Just remember everyone is fighting battles we do not know. The other hands may not be all they seem. And if you had the ability to see everyone’s hands the chances are you would always take your own back. So keep your hand and use it to win. However long you get to play, play it well.

 

I walked beside you

I recently had the privilege of going on a walk with my son’s school. He attends a school for children with severe and complex needs. There was nearly as many adults on the walk as there were children. There were wheelchairs, crutches, walkers and a high percentage of children who have no speech. It was truly one of the most beautiful walks I have had the honour of being on.
I was holding my own son’s hand and here is how our walk went:

I walked beside you on the school trip one day
Holding your hand all of the way
You don’t see danger in the way that I do
You don’t know the way but trust that I do
I see the hedges, you pull the thorns
I watch for traffic, you laugh at horns.
I point out the library, you yearn for the doors
You pull to get in there and drop to all fours
The walk has now halted, a child is down
The teacher shows you photos and we keep walking through town

I walked beside you on the school trip one day
You held onto my hand for all of the way
You don’t see life in the way that I do
The innocence of childhood embodied in you
I see the challenges, you just see play
I worry for the future, you just live for the day
I point out the park, you just see the stream
As I pull you away you just let out a scream
Teachers come running with photos in hand
They knew this might happen, so they had it all planned

I walked beside you on the school trip one day
You taught me so much as we went on our way
Your mind is years younger than the body it uses
You keep falling over, legs covered in bruises
But you keep getting up and you keep going on
You may not have words but you sing your own song
You laugh at the birds and you flap at a fence
The joy that these bring you is pure and immense
I need more of your joy, I need more of your zest
We could walk so much further, but today let us rest.

I walked beside you like I always do
You needing me and me needing you.

It’s not about me

When I was young it was all about me. And then one day I got married. And it became about me and my husband. It stayed like that for far longer than it ever should have been, but then we became parents. And life no longer became about us but about two little children. For five years life has now been all about them. Even more so than many other parents as both my children have additional needs. They both have autism. One also has seizures, global developmental delay, neurofibromatosis type 1 and is vision impaired. No-one would judge us for it being all about them. Hospital appointments, school and nursery events to attend, therapists to liaise with, courses to attend, medications to be administered, nappies to be changed and so on. It could so easily be us four and no more.

But life is bigger than that.

So I open my life up to others. I am on social media outlets, I attend groups and courses and meet other families going through some of the same things we are. I take the children to clubs for other children with autism. I blog.

Why?

Because I care about others. I can learn so much from the road that others have walked before me. As a family we have negotiated some tricky terrain that has only been possible through the help and advice that others have given. Together we are stronger. Our breakthroughs become others breakthroughs and give others hope. Hearing other families achieve in areas we are still struggling with gives me hope that all things are possible. Even if I can not directly identify with thier issue or offer advice I can cheer them on, celebrate with them, encourage them. We can pray for each other, stand beside each other, link arms.

Because it isn’t about me.

Or my children really.

I could easily close my social medai accounts, stay at home with my children, not answer the telephone, stop blogging. But I would suffer. And I believe others would too. Not because I think I am someone special. But because there is something powerful and stronger about supporting others, praying for other people, looking out for someone other than yourself.

I am a people person. I comment on social media because I care. I listen to your struggles because I care. I blog because I care that someone might no longer feel alone after reading my blog. That someone may be helped by a strategy or therapy that helped one of my children. That some other family might identify with what we are going through and be encouraged.

It’s not about me.

So I am happy for the National Autistic Society to use us on their website (http://www.autism.org.uk/) The boy with the bubbles is Isaac.

And I am happy for our story to be used in their Christmas marketing:

It’s not about me.

It’s about how many other families that will be able to access the help we did as a result of campaigns like this.

It’s about someone else knowing they are not alone in this journey.

It’s about encouraging others that progress can and will come in time.

Sharing your story is not about you. It’s about humility and vulnerability. It’s about giving of yourself, even when emotions are raw, knowing you are not alone. It’s about real life and daily struggles. It’s the public recording of a journey. A journey that others can adopt as thier own, identify with, run with, be encouraged by. It’s about awareness.

It’s about helping just one person.

The sleepless nights, the endless screaming, the loss of the one word he took over 4 years to say, the yearning to see my babies walk, the pain of seeing my son have seizures, the broken heartedness of getting diagnosis after diagnosis, the fighting for thier educational needs, the public comments that crush my Spirit, the constant appointments.

It’s all worth it.

Because these two are worth it:

You are worth it.

Your children are worth it.

If one person is encouraged by this blog it is worth it.

We don’t all have to live our lives in public to help someone else. We don’t even have to be on social media. But someone somewhere can benefit from the journey you have walked. Someone can benefit from your friendship, your encouragement, your prayers. Someone can feel less alone just by knowing you care. Someone’s life can be changed by you.

It’s not about me.

It’s not really about autism.

It’s about parenting.

It’s about others helping me and me helping others and being there for each other.

It’s about awareness.

It’s about not feeling alone or isolated anymore.

It’s about rejoicing with others as they rejoice with me.

It’s about walking beside each other hand in hand.

It started with two little children but now it’s about hundreds of others.

It’s about so many other things. But it’s definitely not about ME!

“not looking to your own interests, but each of you to the interests of others” Phil 2:14

“rejoice with those who rejoice, mourn with those who mourn” Rom 12:15

“But encourage one another daily, as long as it is called ‘today’…Heb 3:13