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.

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A Mother’s Cry: Can my Disabled Child Ever Become a Christian?

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It’s Easter Sunday, the very centre of my beliefs as a Christian, that my Lord and Saviour not only died for me on a cross to carry my sin, but he rose again on the third day to beat death once and for all to enable me (and everyone else who believes) to have eternal life.

I sat in church today and heard the gospel message preached with my beautiful children beside me, just the same as my parents did the generation before. I never tire of hearing the message of Jesus crucified and at 15 it impacted me personally on such a level my life has been rooted and grounded in my faith ever since.

Yet here I am faced with a massive question that has caused me to question my faith in a way I never ever expected: if he wanted to, could my disabled son ever become a Christian?

Why would I ask this? Well every tract I have ever read (there have been hundreds), every gospel message I have heard preached (there have been many) and every evangelist I have listened to have all taught a way to salvation that is fundamentally impossible for my child to ever achieve.

img_1145-1This is Isaac. He is, like everyone of us, made in the image of God. He is the most beautiful and incredible gift ever given to me. He is a true miracle having been prayed for and believed for against all odds. I was given medically less than 1% chance of ever having children yet after ten years of infertility God blessed me with not one, but two, babies. Isaac was the first born of twins. He has soft dark brown hair, hazel eyes that shine light and sparkle with life even if one of them doesn’t work and the other hides a tumour on its optic nerve. He makes noises, though at 9 and a half none of these noises form words that you and I can distinguish. He has severe autism. He has severe learning difficulties. He is epileptic. He has a brain tumour that means he will forever function as a very young child, most likely no more than aged 2 to 3 years.

So when I hear today’s gospel message once again I am crying, not only because the story of my Saviour always touches the very core of my being but because I know how the service will end and I can’t help wondering…

Can my disabled child ever be saved?

You see the way of salvation in the Bible is clear. It is based on such well known and readily quoted verses of so many believers: Romans chapter 10 and verse 9; “That if you confess with your mouth that ‘Jesus is Lord’, and believe in your heart that God raised him from the dead, you will be saved.”

I believe that.

But what if someone has such significant learning difficulties they will never understand and they can not speak their own name let alone say ‘Jesus is Lord’. What happens then?

Then there’s the famous one in John chapter 3 and verse 16: “For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish but have eternal life.”

I believe that too.

But what about those who are cognitively unable to believe?

I could go on and talk about sin, baptism, the work of the cross, bridging the gap between God and man and all sorts of things that preachers and tracts talk about. Not one of these things will ever be understood by my son.

If he can’t understand the story can he ever believe in God?

He is never going to raise his hand at an alter call. He will never go forward for prayer to turn his life around, he will never hold a microphone and testify to how he was once an addict and now he is a Christian.

The fact of life is, for my son, and so many others, we need to see salvation in a different way.

Maybe I am tearing up the theology books here, maybe I am shaking traditions, but I believe my baby boy will always be saved. He will never be the lost sheep that the Shepherd longed to find. He will never be the prodigal son. He will never sin. The acts of the sinful nature (according to Galatians chapter 5 verses 19-20) are sexual immorality, impurity and debauchery, idolatry and witchcraft, hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions, envy, drunkenness, orgies and the like…one thing I can category say is that my son will never do these.

He embodies innocence. As Psalm 139 says he is fearfully and wonderfully made. Like us all he was made in the image of God. But unlike us, he can not choose to sin, neither can he choose to believe.

He can flap as we sing praises, he can make a joyful noise, he can rest in the presence of God. He can feel peace, experience joy and love deeply. I believe he can know God in his Spirit even if his mind and body don’t function as well as we would all like.

I believe he is in the palm of Gods hand.

I believe in grace that a loving God has searched my son and knows his heart, that he is familiar with all his ways. He alone created his inmost being.

God has this covered.

Can my son ever get saved when he can’t believe and confess like every preacher and tract says he has to?

I can’t quote you scripture but my mother’s heart cries out to a God who hears my prayers and is carrying my son both now and forever.

That’s my mother’s cry.

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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.

I Don’t Want To Be An Autism Parent Anymore


The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore. 

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now. 

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only. 

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them. 

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them. 

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day. 

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite. 

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go. 

I don’t want to be an autism parent anymore.  

I am tired of holding my child as he screams in public again. 

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing. 

I simply can not bear the thought of my child as an adult knowing what society is like. 

I am tired of meetings. 

I am tired of phone calls from his school. 

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life. 

Who would want that for their child? 

Who would want that as a parent? 

Today I don’t want to be an autism parent any more. 

The problem is I have no choice. 

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that. 

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have. 

Yet we carry on. We dust ourselves down, search for some positives or listen to some music. 

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat. 

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

I’m not perfect but I am perfect for them


I have a confession to make: I got annoyed at my children today! What? You have done that too? Seriously why are we so afraid as parents to admit we are less than perfect.

 
Last week I took my kids to the dentist at the wrong time. I sent my son to school the week before without any lunch. He is not able to talk so could not tell anyone. I blame sleep deprivation personally.

 
I do my best. It is what we all do. 

 
But still we never seem to feel we get it right all the time. That feeling is magnified when your children have extra support needs.

 
I remember eagerly buying push along toys, walkers and sit on cars for my toddlers, only to have them sit unused in a corner as my son was three before he walked, by which time they were all far too small for him. I tried to do the right thing, the ‘perfect’ thing, but for my children it was anything but perfect.

 
I sang nursery rhymes with my babies. I read to them, talked to them all the time and blew bubbles. Yet still my 8 year old to this day can’t say a word. I did all the right things but for him it just wasn’t to be.

 
I bought this wonderful potty for my kids. You know the ones that sing to them when they pee and even looks like a toilet. That was a total disaster!

 
I took my pre-schoolers to museums, cafes, soft plays, garden centres and farms. One of them screamed all the time and the other was terrified. What seemed the perfect thing to do was in fact anything but for my autistic children who struggled with sensory overload everywhere we went. 

 
imageSo I decided to stop being the perfect parent and instead become the perfect parent to THEM. That meant taking my son to see lifts. It meant taking them on train rides and joining in games of lining up toys. It meant accepting them for just who they are and allowing them to be autistic.

 
The best toys I ever bought them were second hand. I gave up full time work to care for them so I can attend all their meetings, keep up with all their teams of professionals and ensure they get the support they both need. It means I am there to keep the routine they need to feel secure and calm my son when he is in meltdown.

 
Being the perfect parent for them means sometimes making the same meal every night for a week just to see them eat. It means trailing shops to find the only juice my daughter will drink. It means cutting out labels in their clothes and ensuring the materials are soft and not too ‘busy’ so as not to upset them. img_0046It means reading the same bedtime story every night for two years in exactly the same way. It is answering the same question for the hundredth time and remaining patient.

 
Do I get annoyed at them? Of course I do. I am human. Do I annoy them? Absolutely! Do we love each other and hug often? Yes we do. 

 
I am never going to be that parent who shows off a shelf full of trophies my child won at dancing or football. I am not going to be the parent who home makes Halloween costumes or bakes the most incredible birthday cakes. My kids have way too much screen time than is recommended and my son can’t even write his own name at 8 years old!

 
But I know what triggers a meltdown in my son and how to avoid it. I know what makes my daughters anxiety reach sky high and can work through this with her. I know the limitations of my sons eye sight and the fact he can not see pale colours. I know exactly what reading book my daughter has this week and what characters she is into just now. I know their routines for bedtime and school days and follow them like a robot so as not to upset them.

 
Those things don’t make me the perfect mum, but they do make me perfect for them.

 
I am blessed to have them. We are blessed to have each other. None of us are perfect but together we are the perfect team.