Who Will Fight For The Rights Of Less Able Autistics Like My Son?

This week the autistic community achieved something quite incredible. News began spreading earlier this week that a large government body had changed the wording on their site that said that anyone diagnosed autistic was now forced to inform the driving and vehicle licensing agency about their diagnosis potentially risking their driver’s licence.

The autistic community responded to this and rallied together defending their rights incredible well. They tweeted MP’s who battled for them, they started petitions and shared them everywhere, they made sure the leading charities supported them and they even looked into the law on the matter. As the wife of an autistic man who drives daily, and who I even taught to drive, I found it heartening and wonderful to watch a community come together and demand action. Days later the wording was changed back to its original wording that means autistic drivers, like those with any other condition or disability which could potentially impact on driving, only need to inform the agency if they feel their autism would affect their driving. Brilliant news indeed and a massive win for the rights of autistic drivers.

However, despite having an autistic husband who has been driving over 11 years I was very quiet online about the campaign even though I fully supported it. (I did sign the petition obviously.)

There was one simple reason for my silence and that was this:

It was great to see the autistic community defending themselves, and rightly so, but would the same autistic community, and society in general, be so outraged and campaign so valiantly if the violation was against the less able autistic community like my son?

I can’t help but think who will fight for my son’s rights?

Will his fellow autistics or those in society defend him, write petitions to ensure he is protected and contact members of parliaments about things that affect him? Will the public be so outraged and vocal about things that affect his rights? Would campaigns for the less able autistics get as much media coverage?

One thing is certain: my son will never be able to advocate for himself. He has no ability to speak, diagnosed with co-morbid learning difficulties and epilepsy and developmentally a young baby. Yet still every bit as worthy as a human being.

This week autistic drivers defended themselves. The very fact this group passed the drivers test, many having had to also pass a theory test too, proves a level of cognitive understanding and ability that makes them capable of self advocacy and defending their own rights well. I’m not a huge fan of ‘functioning labels’ but the very ability to drive means the group targeted have a level of awareness and understanding that my son will never reach. This in turn meant they could rally so much public support.

My son won’t ever be able to vocally speak up for himself.

He won’t be able to tweet anyone to come to his aid.

He won’t be able to start or even sign a petition. He likely won’t even know what one is.

He won’t be able to lobby for change.

I 100% stand by and support what was achieved this week but I also can’t help but wonder would we be so outraged as a country, as a community, if an agency violated my son’s rights like happened this week?

You only need to look at campaigns and petitions for things like making sure the police are trained in autism to help protect the most vulnerable autistics, campaigns against autistics being held in assessment and treatment units for mental health patients, campaigns to stop unnecessary force when dealing with autistic children and young people with learning difficulties and/or challenging behaviour, and even campaigns for the dignity of autistic children like my son to have suitable ‘Changing Places’ bathrooms with a hoist and a bench, to see that such campaigns need more support both from self advocates and society in general. What are the charities, celebrities, members of parliament and media doing to support campaigns such as these which are and do affect less able autistics like my son?

I advocate on my son’s behalf but many in the autistic community find that offensive saying my son needs to be enabled to advocate himself. The fact is he won’t ever be capable of that level of awareness or understanding. I have to be his voice. Until the day I can no longer do so I will fight for my son’s rights as a human being, child and eventually an adult. I will do everything in my power to see him respected, treated with dignity and be understood.

I just hope that if the time ever comes when his rights need defended that others within the autism community, and in society as a whole, will come together and stand up for him in the same way they stood up for themselves this week.

He’s autistic too, even if he won’t ever work, pay tax, raise a family or even drive.

He’s still every bit as worthy, valuable and he should have just as much rights.

If we say we support the rights of autistics are we fighting for the rights of the less able as much as for those who can advocate well themselves?

Will you stand with the less able autistics like my son?

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My Ten Year Old Son Doesn’t Know What Christmas Even Is

As his twin sister races downstairs eager to open another door on her advent calendar, excitedly counting down the days to Christmas Day, you watch TV flapping like any other day.

As your twin sister practices Christmas songs after school in preparations for her Christmas show in two weeks time you watch the same ten seconds of lifts on you tube and rock in your seat as you always do.

Christmas means nothing to you.

No letters to Santa, and definitely no visits to any grottos.

No decorating a tree with the family or even any concept of what tinsel is.

No singing Christmas carols or dancing to seasonal pop songs as they play in the shops.

It all means nothing to you.

Your world is oblivious to the hype, the busyness, the traditions that consume society at this time of year.

You would eat turkey and all the trimmings if it’s put in front of you, but you would equally eat any other meal presented too. It’s just food to you, nothing more, nothing less.

My autistic ten year old has no understanding or interest in Christmas. He is still consumed by his own world, dependent entirely on routine, not communicating verbally at all.

Honestly, some days that breaks my heart. I know we should not compare children as each child is unique and individual but at Christmas you want your child to be excited, happy, expectant. Instead my son is uninterested, unconcerned and unaware.

Christmas isn’t his ‘thing’. Neither is Easter, his birthday, the tooth fairy or any other number of occasions you can think of. None of it enters his world.

He won’t write any Christmas cards (he can’t write any letters let alone his name) and he likely won’t receive any either, family events and get togethers are too much for him so I stay home with him. The only Christmas event he will come to is the church service but even then he gets very upset because it’s different to how he perceives church to be. He doesn’t know Christmas carols and he wants the usual songs he is used to back.

He doesn’t like the changes.

He doesn’t like new stuff.

He doesn’t like Christmas.

I can’t change that. It’s who he is and how he is. I could cry my eyes out every day for years but it won’t change things. I’ve had a decade of crying and wishing things were different. I have accepted that Christmas just isn’t something my ten year old understands nor does he wish to partake in it.

Even if I bought him presents he would never open them. He’s never opened a birthday or Christmas present in his life.

I could pretend it’s all ok. I could move a tree near where he is and take a picture and pretend he’s part of it all. I could put seasonal clothes on him and imagine he chose them. I could buy and wrap stuff for him and dream that somehow the magic of Christmas would change him overnight. All that would do is break my heart more.

I don’t need that. He doesn’t need that.

So while I decorate my daughters bedroom with her and revel in her excitement, while I buy and wrap gifts for her eagerly looking forward to seeing her face on Christmas morning, while we sing and laugh together as we practice Christmas songs the other side to my life is that I am playing down everything as much as possible to keep my son at ease.

I walk a fine line of trying to celebrate and embrace Christmas with one twin whilst ignoring it’s very existence with the other.

My son has severe learning difficulties, severe autism and epilepsy. He can’t speak. He can’t care for himself.

He is full of life, full of fun and the love of my life.

But at ten years old he still doesn’t know what Christmas even is…and he most likely never will.

Why I Struggle When My Special Needs Child Gets ‘Star of the Week’

So my 9 year old son came home from school on Friday with a certificate and photograph in his bag. There was no eagerness to show me and no message in his school diary; it was just there. Of course I am proud of him and told him so and absolutely it will be displayed on his bedroom wall to honour his achievements like his sisters are in her room. That is never in doubt. However, I have to be honest and say I really struggle when my son gets ‘star of the week’ and here is why:

1. It reminds me just how far behind he is academically.

It’s a sobering thought that my son has been at school five and a half years and is still working at pre-school levels in many subjects. The very fact he still has no idea that star of the week is any sort of aspirational incentive to even aim for says it all. He isn’t being modest or shy in not showing me his certificate; he honestly still doesn’t get the whole social aspect of celebrating achievement in any way. His twin sister commented on his award saying ‘well done Isaac but…’ and she went on to ask why he is still so far behind her. That’s hard. You see I live with my child daily and I know he struggles but seeing it on paper seems to somehow make it raw. It hurts. I am proud of my son but sad that he is behind so much. I don’t think anyone wants their child to be 7 or so years behind their peers in any way.

2. It makes me scared for the future.

I try not to think of the future. I live everyday and enjoy the moment but wisdom would tell me that I do need to plan for the future too. I shared my sons achievement on social media and today someone asked me in person what happens to children like my son when they finish education. The reality is my son will likely not be suitable for college and academically will never reach the level required for university. Employment is pretty unlikely too so our current options include him living at home and attending day care services. That’s not what I planned for my child when I conceived him and carried him for nine months, and although I do need to be mentally prepared for this seeing his star of the week award just feels like his future is all planned out and that is scary. His options are limited and seeing his academic ability on a laminated sheet makes that a stark reality. I won’t lie, that is hard to accept.

3. It makes me feel he is being defined by his ability to learn.

When I think of my child I think of am energetic, fun loving, teddy chewing, mischievous little brown eyed boy who does the best squeezy hugs and who loves his food. I think of the child who has incredible gifts in communication despite having no spoken language. I get so much joy from singing along to the songs he plays on his iPad and going to lifts with him. I see a child who gets so excited every time Bing Bunny comes on the TV that he bounces in the armchair he is sitting in. I see a child who could go hundreds of miles to places on google street map even though he has significant visual impairment. I don’t see his lack of ability to read or write or speak as an issue and none of those difficulties define him. So when I see his star of the week award I hope that this is not just how society sees my child either.

My son will always struggle with some things. Professionals and medical specialists have told me it is unlikely my son will ever speak to me. Education have told me he won’t ever attend a mainstream school and college or further education is unlikely. It’s a very sobering thought but with that comes my absolute determination that my son should never ever be defined by his struggles.

So I will stick his award on his bedroom wall and smile. It’s great he has been recognised. It’s great he is making progress but I never forget that for everyone of us life is much more than our ability to learn or how far we go in education.

I struggle when my son gets star of the week because his ability to achieve should never be limited to traditional education. I am raising a remarkable, brave and wonderful child who is breaking the mould in life. He is a star in so many more ways than just trying to write the digit 2. One of the many reasons I write about him is to help others see beyond his academically ability (or lack of) so I will stick that award up and get back to celebrating my son in every other way I do daily.

Don’t ever let educational achievement define anyone. We are much more than our ability to learn.

How one 9 year-old Described her Brother’s Autism in just a few pen strokes

There was nothing special about Thursday evening as I worked my way through the typical bedtime routine for my 9 year old twins. They had already had a bath, clean pyjamas on, eaten some supper and now they had moved into their separate rooms ready for stories, kisses and pre-sleep chats.

It’s hard to split yourself in two (or three, or four even if you are blessed with a quiver full) but my daughter willingly lets me see to her brother first most nights. She sacrifices so much for her autistic brother and this is just another example of how she puts his needs before her own daily. While she amused herself quietly with what I assumed was some colouring in or reading I continued on to settle her somewhat hyperactive brother next door.

I read the same story as always. He chooses the same story every night despite the fact he has a whole basket of books in his room. His autism means routines should never change and repetition is very much the name of the game. Unlike his sister he isn’t going to talk to me at bedtime about his school anxieties or fall outs with his friends. He has no friends. I have no idea what goes on at school (or anywhere he is out of my care) and at nine he has no spoken language. I hug and kiss him. I get nothing much in return. One day I might, but not tonight. I tuck him in, leave the room and turn off his light.

As I go next door to his sister her eyes light up as she clutches a little piece of paper to give to me.

“Mummy, I’ve been thinking about Isaac tonight. Can I show you something Mummy?”

And at that she handed me this:

I asked her to talk to me about it.

Mummy, these are the wires in my head. One is the talking wire, one is the brushing my own teeth wire, one is knowing my times tables in maths wire, one is knowing how to write wire, this one is playing with friends wire, this is the knowing how to read wire…”

She named all twelve straight lines she had drawn and said how for her, like most other children, she was able to do all of the things she listed. She talked about how some of her wires connect right away and others took time but they ‘knew where they were going’ and as she gets older and learns more ‘new things’ she will have ‘more wires that know where to go and connect up straight’.

I was amazed that a child could be so aware, so astute and so insightful. I let her continue on.

‘And this, I think, is my brother’s wires mum. He finds everything so hard doesn’t he? This is his talking wire mum. Look it goes to the connection for brushing teeth. No wonder he can’t talk when his brain gets confused like that! This is his writing wire…it’s supposed to be connected to the writing one at the bottom but instead it’s connected to the playing with friends wire. It’s all so hard when your brain gets confused but I know he is trying! I mean everything must be so hard when the wires are all jumbled up like this!’

I looked at her with tears behind my eyes. If anyone will advocate in life for her brother when I am gone it will be his sister. She understands him like no other.

My daughter knows I write. So I had to ask her.

“Naomi, is it ok for mummy to share this with other people? Is that ok with you?”

She smiled and in her usual determined way took the sheet back from me and pointed to her strokes again.

“Only if you make sure you tell everyone that it’s ok to have autism. Make sure people know Isaac does HAVE wires. He has a brain. He is trying. If I could make his wires straight Mummy I would, do you know that?”

I hugged her tight and kissed her forehead. She doesn’t want her brother to not have autism. I know that. She just wants to hear his voice, be able to play with him, brush her teeth beside him, write stories with him and practice her times tables with him like she does her friends from school.

She might want a brother with straight lined connections, but she could not love her autistic brother more if she tried, with crisscross jumbled wires and all the wonderful quirkiness that that brings.

Her understanding maybe over simplified in many ways but her fierce protection and love can never be denied.

I keep looking at that piece of paper.

She’s so right. My son is severely autistic with significant learning difficulties. He will need care all his life. But she’s spot on: he still has wires. He still has a brain. He can learn. He has potential. Life maybe much more confusing for him with wires that go different ways to what ours do but is that such a massive problem?

Maybe, just maybe, having straight lined connections in your brain is not for everyone. The world would be a very boring place if all our brains looked the same after all.

Please stop praying for my son with autism to be healed

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So many people have told me over the years they are praying for my son. I am incredible grateful for that and the kindness they show but what are they praying about?
Are they asking God for my 8 year old to finally speak? Are they asking for his seizures to stop? Are they praying he learns to communicate or to read and write? Or are they praying for him to be healed of his autism?

Let me be very clear..I want people to pray for my son. My entire family needs prayers and needs God more than we ever have. We need love and support. But please please could you not pray for my son with autism to be healed?

Here is why.

There are many occasions when Jesus healed individual people in the Bible. These include people who were blind, deaf, paralysed, had leprosy, fevers, seizures and even those who had died. Despite studying all of these incidences I could not find any occasions when Jesus prayed for anyone who had learning difficulties or communication difficulties like my son’s autism to be healed.

Then there were mass healing events that Jesus did. Again although many were healed there is no direct reference to children or adults who struggled socially or had repetitive behaviours like my son.

The Bible says that Jesus welcomed the little children. Although I have no proof I am certain there were children in Bible times who displayed similar difficulties to my child. I know they were every bit as welcome to Jesus.

The Bible says that my child is fearfully and wonderfully made. (Psalm 139:14).
The Bible says my son was knitted together in my womb (Psalm 139: 13)
The Bible says my son is created in God’s likeness (Ephesians 4:24)
The Bible says my son is the apple of God’s eye. (Psalm 17:8)
The Bible says my son is God’s workmanship created to do good works. (Ephesians 2:10)
The Bible says God has plans to prosper my son and not to harm him, to give him a hope and a future. (Jeremiah 29:11-13)

God sees no difference between my son and anyone else. He does not view my son as less than or inadequate in any way. Could God heal my son of his seizures and his genetic condition that causes tumours in his body? Yes, without a doubt. Could God open my son’s mouth to give him clear speech? Yes, I believe that with all my heart. Could God cause him to be more settled and display less challenging behaviour and agitation? Without a seconds doubt of course he could. These are things I pray over him daily.

IMG_0440I pray for peace for him. I pray for joy and laughter. I pray for people to understand him and show him love. I pray safety as he travels so far back and forth in country roads to school each day. I pray for a receptive mind and open heart. I pray strength to his body and ease from pain. I pray for him to sleep (I am human so this is something I need too).

I pray for strength for myself as I care for him. I pray for wisdom and unity for those who work with me to meet his needs. I pray for his sister as she deals and lives with some events that could traumatise her. I pray her tender heart is not broken too often. I pray for friends she can trust. I pray she knows she is loved when her brother consumes so much of my time.

There is so many things I pray for and so many things others can pray for too. There are things you CAN pray for for my son to be healed of, but autism is not one of them. Autism is a neurological difference in his mind that causes him to see the world a bit differently. Autism is a part of the way God made him and it makes him beautiful and perfect.

God made each one of us part of a body. My son is every bit as much a part of the body of Christ as the next person even if he has severe learning difficulties, is vision impaired, has global delay and has autism. It does not matter to God that he flaps, spins, screams and is unable to speak. Man looks at all that but as the Bible says “The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.” I Samuel 16:7

I pray that the world looks at my son’s heart too.

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My son has the type of autism that is not a hidden disability

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My son was running away from me in the supermarket yet again. I had held him tight as we went through the checkout but let go of him for a second or two to pick up my bags. That was all it took. As I chased after him towards the automatic front doors and into a very busy car park I noticed a stranger was gently holding his shoulder.

“Is he yours?” she asked as she saw the sweat appear on my forehead.

“Yes”, I puffed as I once again held his wrists.

“He has autism and he is heading right for the car park lift. Thanks for your support.”
“I knew right away he had autism. You can tell.”
If I was given just a small amount of money each time someone told me something similar I would be rich.
My son has the type of autism that is NOT a hidden disability.

So what makes his difficulties and diagnosis so obvious?
Is it the fact he flaps and stims CONSTANTLY? I really means constantly! He can not sit or stand still. He shakes things, chews things, flaps things, flicks things, squeezes things and licks things all the time. It is impossible to NOT notice it. His body movements are not hidden.
Is it the fact he can not talk? That may seem like something you would think would not be noticeable but to hear the noises he DOES make it is pretty clear to most people that these are not noises you hear everyday. His noises are not hidden.
Is it the fact he screams? He can scream longer than a fire alarm and more high pitched that a whistle. He screams randomly and inappropriately whenever he feels like it. There is nothing hidden about that in any way.
What about the fact he is still wearing nappies? As much as I try not to show this he thinks nothing of pulling up his top to chew or pulling at his trousers making it obvious. He has no social awareness and no understanding. Yes he could be incontinent for any number of reasons but combined with his noises and movements it adds to the number of reasons why people realise right away upon meeting him that he has autism.
He runs, he flaps, he obviously has learning difficulties, and he behaves quite differently to other children his age. He is sometimes in a wheelchair for his own safety and if I have not got the energy to run a marathon while doing my shopping then I often use a disabled trolley for convenience.
He would rather spend hours at hand dryers in the bathroom than anywhere else in a store, unless they have a lift. He is entertained for hours just watching lift doors open and close and open and close over and over again.
He is unmissable. He is loud. His tongue is more out of his mouth than it is in. He is handsome, cheeky and adorable. I don’t hide him and I don’t hide his autism. He doesn’t hide his diagnosis either. In fact he flaunts it.

People see him and people see his autism. 
Sometimes they don’t react very well to that. Other times, like the beautiful stranger today, they see a child with obvious difficulties and look out for him.
They comment, they look, and they react because my child has the type of autism that is NOT a hidden disability.
For many who are not as severe as my son I understand why autism can be a hidden disability. But it isn’t true that it is a hidden disability for everyone.

Six things you may not know about my child with developmental delay

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The first diagnosis my son ever had was ‘global developmental delay’ and like so many I understood this to mean he was a little bit behind his peers but would probably, in time and with support, be just fine.

He was only one year old when we were told he was struggling and not meeting key milestones like sitting up unaided, making attempts at speech and playing with toys.

I was in denial. I was sad.

I stopped taking him places (probably one of the worst things I could have done in hindsight) and I ploughed through each day willing him to learn skills others mastered with ease. I blamed myself. I cried myself to sleep at night. I sang to him, read to him and played with him for hours, but very little changed.
As years went on we collected diagnosis like a stamp collector collects stamps.

The term developmental delay is now slowly being replaced by his doctors to ‘learning difficulties’and I have come to accept now that he never will catch up with others.

Over the last seven years I have found so few people have any understanding of what developmental delay actually means. It is such a huge, all encompassing, spectrum ranging from children with mild delays in some areas to children of school age still unable to weight bear or even support their own head. It covers children who are behind in reading and writing, to children who are fully wheelchair bound and unable to speak. It can be a stand alone diagnosis or the effect of other more complex issues like cerebral palsy, autism, Down’s syndrome and many complex genetic conditions (some we have yet to name!)

Though every child and situation is different, here are a few facts about developmental delay as it applies to my son:

1. Some children DO catch up, other’s don’t.

My beautiful son, will forever be developing at their own unique pace and time and will always need support right into adult life.

2. As a child gets older the term developmental delay is likely to disappear and instead be replaced by some form of learning difficulty or perhaps simply referred to in terms of severity of other conditions such as severe autism.

This does NOT mean the child no longer has delays just that the way of describing those delays has changed.

3. Although my son’s development is way behind others there is so much about him that will always be ‘age appropriate’.

For example he started eating solid food at the exact same time as other babies at around six month old. He lost his first tooth at aged 5 and he wears clothes for his chronological age, not his developmental age. His body continues to grow and develop even if his mind and skills are years younger. He will still go through puberty as he grows and he eats just as much as any other child his age.

4. Developmental delay is often unseen and therefore can often be classed as an invisible disability.

This does not make it any less difficult for the child or adult or the carers. If you see a much older child still being supervised in a toilet or not talking when you speak to them please think about the fact they may look ok but they could be struggling to understand or communicate.

5. Milestones are worth celebrating whatever age they happen.

Child development has stages that almost every child goes through regardless of when it happens. A child with developmental delay will go through the same stages just at a different time. For example they learn to sit, then crawl, then stand, then walk. Or they learn to make noise, then babble then the first word. If your five year old is babbling for the first time this is wonderful because at some point they may change that babble to a word. If your four year old can stand unaided then one day soon they may learn to walk.

6. Developmental delay does not define anyone.

Society may put pressure on people to succeed and compete but that does not mean that we have to. Life is not about the destination but about the journey. For some they are just enjoying the journey at a slower pace and that is every bit as wonderful as those who choose to run.

As Martin Luther King Jn says:
“If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but whatever you do you have to keep moving forward.”

That, I can assure you, is what my son is doing. If he can move forward then I can too. However long this journey takes we are enjoying it together.

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