Why I no longer grieve for my autistic son

Four and a half years ago I wrote a blog titled ‘grieving for a child I haven’t lost’. It has been read over 100 thousand times since I wrote it and appeared in a number of books and on some popular websites. It’s been one of the most commented pieces I have written and evoked very strong feelings from people, both good and bad.

Time has passed and feelings change. Some advised me to delete that blog. But why would I be ashamed of how I truly felt at the time? You can’t eradicate history and it’s not healthy to pretend something wasn’t real when it was. I stand by every word I wrote back then and I know by being so brutally honest it has helped thousands of others feel less alone and more understood. Four and a half years ago my son was non verbal, smearing, screaming for hours, unable to read or write and needed 24 hour care. He was still in nappies at 6 and a half, having seizures, his behaviour was ‘challenging’ and every single day felt never ending.

He’s now 11. He’s still not toilet trained, still smears, now officially diagnosed epileptic, still has challenging behaviour and still non verbal. He still screams, he still can’t read or write or dress himself but something fundamental HAS changed: I no longer grieve for him.

I refuse to debate wether ‘grief’ is the right word to use for what I went through. I am the one that went through it and I know the intensity and depth of my feelings and the struggles both my son experienced, and in turn I felt as his mum and full time carer. The day I sat on that park bench and poured my heart onto paper was a day of truly understanding the reality of the pain, heartbreak and despair I felt. No-one has any right to undermine that unless they were living my life. My feelings and thoughts are not up for debate and never will be.

But things have changed now. A few days ago I took my son a trip to his favourite place. He now has a means of communication and I have learnt to listen. While he still can’t communicate verbally, after a lot of frustration and heartbreak, he found his own way of sharing his world through unconventional means. For him this is a unique combination of you tube, google street map, photos and using items of reference. He shows ingenuity and creativity daily as he tries to convey what he wants to wear, eat, and do. I have had, in turn, to be wiling to put my prejudices aside, be patient, and be willing to listen with more than just my ears.

Many misunderstood my grief as not loving my son. The opposite was in fact true. It was my intense love for him that made me grieve what I was missing as a parent and also the reality of what he will miss throughout his life.

But back to our trip and why I no longer grieve for my autistic son.:

He woke up on Saturday and made his way downstairs to ‘his’ chair. He pressed his iPads on (yes he has two!) and scrolled through his history of videos in YouTube until he found the one he wanted. He then used the other to go on google street map which is set to begin at his own home. Within minutes he had taken himself to the local train station on one iPad whilst watching local trains on the other.

I know my son and I know where he likes to go. Together we have a deep understanding now that has helped us both feel happier. He learnt that communication was worthwhile and I learnt the importance of allowing him to decide and control more about his life.

So I took him on a train to his favourite shopping centre to see lifts. On the train I watched as he flapped happily and looked out the window, holding his favourite teddy up so he could see too. He held my hand to get off the train and he took me to all his favourite lifts. We had lunch together in the food court and he dragged me by the hand and pointed to what he wanted. Then when he’d had enough we came home.

I’ve accepted that this is what makes him happy. He’s accepted that I actually have a use and by communicating other ways instead of screaming (which was his communication) he can achieve more.

I struggled but he struggled more.

Love helped us through. We both needed time.

In the four and a half years of us both needing time and changing I noticed something very important: attitudes to autistics are changing. We are much more accepting of difference now and the need to accommodate. Unfortunately though that acceptance still doesn’t seem to apply to parents as they journey through all the emotions involved in caring for, and living with their autistic children.

I am no longer grieving for my autistic son because I have come to accept and acknowledge that his life will always be different, as will mine, and that is OK. But it’s important that that is seen not as a ‘changing sides’ or ‘finally being positive’ but more about a natural journey of learning, patience and love. I haven’t suddenly become ‘accepting’ it was a process of coming to terms with the fact that my entire life will mean caring for my child and his entire life will involve others caring for him.

My son didn’t scream once on Saturday nor did he self harm or even show challenging behaviour. He was happy and so was I.

It’s still difficult at times, for both of us. But instead of sitting on that bench crying we now walk hand in hand past it as he flaps and laughs and drags me back to the car. He’d rather have fun at a lift or be eating lunch than walk around a park with his mum. That’s not something I grieve about now. It’s something I smile about instead.

Can We Take Autism Acceptance Too Far?

My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?

What do I mean?

Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.

However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.

You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.

Here is a good example of how things have changed:

Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.

Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.

Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.

We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.

Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.

We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.

For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.

Can we take autism acceptance too far?

If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.

We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.

We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.

We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.

We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.

Until we accept that the balance of autism acceptance will never be right.

How My Ten Year Old Showed Me About Autism

A week before my daughter had her fifth birthday I took her for an appointment at a local clinic. She can’t remember anything about that day at all but we left with life long diagnosis and a relief of knowing why my daughter was different. That was the day she was diagnosed autistic.

I don’t believe in hiding things from children. Children are way more resilient than we often give them credit for and they deserve to know about their own diagnosis if it is appropriate for them. I didn’t want my daughter growing up thinking she was ‘weird’ or ‘different’ as her dad grew up with those same feelings and it has really affected his mental health as an adult. Unfortunately he wasn’t diagnosed autistic until he was 59 and the not knowing and therefore not having access to support has affected him negatively for many years.

I wanted my daughter to grow up proud of who she is, autism and all.

I have never once sat down with either of my children and told them they are autistic. I have never talked about the ‘triad of impairments’, or sensory difficulties or how being autistic makes her vulnerable and different to others. Her understanding of autism has organically developed over time by living with a twin brother who is non verbal with learning difficulties and who is also autistic, experiencing her own autism daily and seeing how her dad experiences life differently to me as an autistic adult. Anytime she has had questions or concerns I have explained things openly and as simply as possible.

She has also watched me advocate for her, her brother and her dad. Meanwhile, in her mainstream class she has seen another five children receive the same diagnosis as her despite being very different. She has been exposed naturally to a wide spectrum of autistic people and non autistic people and this has allowed her to form her own opinions of what autism is.

So when I told her I was planning to make some autism pictures for autism awareness month she freely asked if she could do them instead. I listened to her ideas and instantly loved them and so thought April 2019 she set about to embark on a project that has opened my eyes to just how much she understands about autism and given me great insight into how she sees the world.

If you asked Naomi ‘what is autism?’ she would be unable to answer you. If you asked her ‘what is autism like for you?’ she would also struggle. But allow her to show you and her insight and awareness is truly remarkable. Without even knowing it she touched on all the main ‘features’ of autism from communication:

To literal thinking:

To the need for routine:

To sensory issues:

To sleep struggles:

From liking rules:

To needing to be alone:

From struggling with things (or being brilliant at them):

To feeling overwhelmed:

From struggling with choice:

To liking repetition:

From needing comforts:

To finding words hurtful:

From the need to finish things before moving on:

To finding bathrooms scary:

She even covered the seasonal issue of Easter since it landed right in the middle of awareness month:

Her pics were simple, effective and, other than her hashtag, had no other mention of autism. All she wanted to show was summed up nicely in her first ever pic:

So when I told her that hundreds of people were following her pictures and asking if they could keep them she chose to end with a little humour….

She found it quite amusing that the majority of people who wanted to ‘collect’ her pictures were in fact more like her than they perhaps realised.

At just ten she’s proud to be exactly who she is but she wants others to know and understand that while someone may be autistic you may be far more able to relate to them than you might think.

‘We might all be different but in so many ways we are just the same.’

I could not be more proud of her.

Why It Appears I Let My Autistic Son Get His Own Way

As usual my son is the first to wake up. It feels like I have only just got to sleep. I probably have. As he makes his way downstairs he switches every light on he passes, takes a handful of teddies with him and finally settles down on his chair with his two iPads before screaming for the TV to go on. His presence defines the household. His demands can seem relentless and his screaming earth shattering.

To almost anyone who reads about him, comes into my home or works with him, the impression is the same: I let my autistic son get his own way.

What people see is just the tip of the iceberg and the reason I am writing this post is to show that what can seem on the surface one way isn’t always the case.

My son is ten, he has severe autism. He has no spoken language. He has epilepsy. He has a progressive genetic condition. Most importantly for this post he also has something known as violent and challenging behaviour.

Violent and challenging behaviour in children with additional needs like my son is much more common than people realise. The reason is simple: people don’t talk about it. There is a shame that comes with it, as well as judgement, embarrassment and fear.

My son used to injure me. He would kick, punch, pull my hair, bite, destroy things, scream, harm himself and throw anything he could get his hands on. He was frustrated, angry and violent, both to others and himself. I couldn’t ‘have words with him’ as his understanding was (and still is) that of a one year old. He had no concept of being grounded since he never left the house without me or went anywhere and taking things off him proved counterproductive as he made absolutely no connection to the removed item and his behaviour.

I needed to understand him better not punish him. I needed to realise what was driving his behaviours, even when he couldn’t tell me.

His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.

So what changed?

Well firstly I realised my son wasn’t being controlling. He was anxious.

He wasn’t being hurtful or selfish when he injured other people or property, he was dealing with emotions he had no idea how to cope with.

He was confused, upset, had unmet sensory needs, frustrated at an inability to communicate and be understood and he showed this in the only way he knew how.

Behaviour is one of the biggest and most effective ways we all communicate.

He needed things to change and that change started with me. I put in place a very low arousal home life. To the outsider it may look just like my son gets his own way but realistically we are actually all getting our own way instead because the entire family is now safe, our property is safe, and most importantly my son is safe.

My son does get to wake when he wants, watch TV when he wants and choose his meals. He has access to his iPad from the moment he wakes and when he wants a bath I bath him.

People can think what they like but by responding to his natural body clock and going with the times that suit his natural rhythm he is calmer, happier and more settled.

By allowing him to watch the TV he wants I am actually calming him as he uses the schedule of a well know children’s channel to know when his school transport is due, when it is time for his bath and when mealtimes happen. This eases his anxiety and helps him make sense of his world.

By letting him choose his meals he feels much more in control and less anxious as he then knows not only what is coming but when it is likely to come too. Surprises make him anxious, and therefore more likely to be violent.

As for the iPad: well it turns out this is his very means of communication, his voice so to speak, and without this he has no means of showing me what he wants or even if he is unwell. To deny him that is taking away the very tool that allows him to be understood.

Then there’s the bath: this is fundamental to his mental well-being and triggers him to know it is time for winding down for bed. By making this a time for arguments or battles because the time wasn’t convenient for me was one of his biggest triggers for his behaviour. I was inadvertently saying to him that it was my way or no way, which made him feel invisible, out of control and helpless.

Low arousal for us is about letting my son know that he is understood, loved and accepted for who he is. This is his home and he needs that place of sanctuary and escape to be able to recuperate and relax in order to face the world. He needs to feel like his needs are met and that the atmosphere is one of calm and love not anger and frustration.

Many would say I am doing him an injustice by allowing him to ‘have his own way’. The argument is that in the ‘real world’ this is unrealistic. I understand that totally but my child’s ‘real world’ isn’t going to be about an employer, a spouse and following the rules of the road as a driver. My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.

Low arousal isn’t about letting your child dictate. It’s about understanding, listening, responding and meeting the needs of our most vulnerable children when they need it most. It’s about responding to the communication that the challenging behaviour and violence actually is and recognising that a child is struggling and needs help.

You might see a child appearing to get his own way. I see a child who is understood, calm and happy.

Until you have lived through what I have you may never understand. I don’t judge you for that, I just hope you never have to experience it.

The Importance Of Telling Your Autistic Loved Ones ‘Don’t Ever Change’.

The day my son was diagnosed autistic I broke my heart. He was almost four, had only just started walking, had no spoken language and he was very developmentally delayed. I wanted to do everything possible to ‘make him better.’ I wanted to change it all.

16 months later, in a different clinic, I took my daughter to be tested for autism too. I sat solemnly while the paediatrician and specialist speech therapist listed all the reasons they felt she too met the criteria for diagnosis. I didn’t cry but I did feel concerned about her future. I wanted to change the thought that she might struggle.

Five years later I sat in another room, in another city, with another speech therapist and a psychologist as my husband received his diagnosis. This time I wanted to change his past, prevent the years of misunderstanding and bullying and the subsequent depression it left him with.

It hasn’t been easy for me to accept and embrace the fact that, all except myself, my entire immediate family are all autistic. I can see looking back how I consumed myself with the need to help them communicate, help them socialise, and help them adapt to even the simplest of change. I was tying myself in knots and exhausting myself. In my attempt to help them I was inadvertently telling them they had to change.

Now it IS good to empower autistic people with the right tools and support to succeed in life. It IS right to encourage, help and teach them. But what we mustn’t do is force them to change the very being of who they are.

As my children grow and shine in their different ways, and my husband processes his own diagnosis, I am doing my best to help them embrace and celebrate their own uniqueness. I came across this simple post in a Facebook group posted by an autistic adult friend of mine called Joseph. His three words are what I want to say to my autistic loved ones.

‘Don’t ever change.’

Isaac won’t ever really understand what that means. His significant learning disabilities give him such a pure and simple outlook on life. While his care needs might be high the core things that bring him joy and pleasure are quite basic. He loves his food, his same bedtime stories every night, lifts (elevators), his bath routine, looking at photographs on my phone and soft play. I took him to soft play recently and watched with pride and overwhelming love as he flapped contentedly to himself unaware of anyone around him. He doesn’t care what anyone thinks of him, he lives each day like it’s the best day ever and he loves deeply. Why would I want to change any of that? He’s amazing exactly the way he is.

Naomi is at an age and developmental stage where she is much more aware of her differences. While her peers attend clubs and groups, play popular video games and play outside she is still happy to line up little plastic toys and immerse herself in her own make believe world. Her literal interpretation of language brings me so much joy as she, quite rightly, reminds me to say what I mean and not use ‘funny phrases’. Her thoughts on life astound me and her ability to empathise and care are incredible. Yes, she admits herself, that she finds some things harder than others but then she’s the first to tell me ‘everyone is different and we are all good at different things.’. She knows she has autism and she isn’t ashamed of it. She’s exactly who she was meant to be and any issues regarding that are for me to work through, not her. Would I really have wanted her any other way? She’s wonderful exactly as she is.

My husband’s autism looks very different to the children’s. He has spent his life trying to change and adapt, fit in, be included and be accepted. The world has tried to change him for over sixty years and as a result he felt ashamed, different, and stupid. Seeing the mental and physical scars he now lives with as a result of this makes me even more determined that our children need to feel loved, accepted and wanted for exactly who they are.

Therapies have their place. Strategies to support have their place. Teaching and practicing social skills have their place.

However we also need to teach our autistic loved ones that they are accepted, loved and amazing exactly as they are.

They need to hear the simple truth of these three words:

‘Don’t ever change’

Why I No Longer Tell People My Children Have Autism (even though they do)

I always thought I was a proud ‘autism mum’, unashamed of my children and spreading autism awareness wherever we went. It turns out I have actually been harming my children, and the autism community, without even realising it.

Let me explain.

It’s the school summer holidays and both my children are autistic. One of my children has severe autism. He has also recently been diagnosed with epilepsy. At 9 he has no spoken language so he often screams. He chews his cuddly toys, flaps, spins, claps and makes repetitive noises. His twin sister has anxiety, is selective mute, freezes if someone talks to her or even looks at her and is very much in her own imaginary world.

Yesterday I took them out ten pin bowling followed by a trip to a well known fast food restaurant.

When we arrived at bowling, despite pre-booking the lane online to save waiting, there was still a queue. My daughter panicked and became anxious and distressed, asking a million questions over and over again

‘What if it’s too busy mum and we can’t play?’

‘What if all the lanes are broken and we need to go home?’

‘What if there are no staff because they are all sick?’

‘What number lane did you book because I can see people on lanes and they might be on our one…’

And so on.

Meanwhile her brother was wandering, flapping, chewing the nose of his teddy and otherwise just acting happy and excited in line with his developmental age of around 18 months or younger.

This time last year I would have not stopped talking. In fact I would have been similar to my daughter who was saying so much out of sheer anxiety. Except my anxiety was different as I was much more socially aware and I felt I had to ‘explain’ my children’s unusual behaviours. I would have turned to the strangers behind me and said something about how both children have autism and find waiting difficult and my son can’t speak. Even if they were not even looking at the children or even bothered by them in any way I still told them anyway! I then would have made a big deal of announcing to the person at the counter how the children had autism and global delay and my son could not speak and this and that and…well more than she or anyone else actually needed to know!

I truly thought I was helping. I thought I was explaining behaviours and educating strangers. I believed I was spreading ‘autism awareness’.

Actually what I was doing was embarrassing my children, portraying autism as something that needed excusing or apologising for and exposing my vulnerable children to the world. Would I have felt the need to broadcast my children’s difficulties if they had been wheelchair users? Would I have shouted it to the world if they had a hidden genetic condition or a medical condition like diabetes? Yes my children were noticeably different but by mentioning that fact I was actually drawing MORE attention to it and not less. My anxiety was making things worse.

This year things are different. Naomi is asking question after question, Isaac is flapping, wandering away and chewing his teddies. They are openly different.

But now I keep quiet.

Now I no longer tell strangers my children have autism even though they do.

I am not ashamed of my children, neither am I embarrassed. Never. Not even for a second. In fact I accept them totally and wholeheartedly for who they are. That is why I stay quiet.

My children deserve respect and privacy. Society should accept them without any justification.They should not be accepted because ‘they have autism’ but because they are wonderful, beautiful and unique just like everyone else in life.

So yesterday we were issued a lane (number 19 if you really need to know) and I supported my precious children to take turns, use a support frame to push balls down the lane, and to watch excitedly as pins fell down (much more often when they rolled than when I did!). No-one stared, no-one asked questions or even really cared about us much and I never once told anyone my children have autism.

When we had had our ten games I helped them into the car and I drove to the nearby well known restaurant. I ordered nuggets and one ate just the skins and drank only milk while the other licked the table as well as his food! Still I never once mentioned autism to anyone. Both children clapped, flapped and made baby noises. I still never mentioned autism.

My children haven’t changed. I have.

Last night I apologised to both my children. I can’t say how much either of them understand how my own anxiety caused me to feel I had to tell the world about their diagnosis when in fact it was no-one else’s business. If THEY wish to tell someone about their own autism (I understand my son is likely to never reach this stage due to lack of spoken language and severe learning difficulties but he still deserves the same respect and I treat him as if he does understand anyway) one day that is THEIR choice. If my daughter (or son) wanted to wear clothing stating they had autism again that would be their choice.

But until then I have no right to disclose their diagnosis to complete strangers just because I feel the need to justify and explain their behaviours. Everyone is different and we should all just accept that without explanation or labels.

I am learning. I am not anxious anymore. So I no longer tell people my children have autism even though it is obvious they do.

It is making for a much more relaxed life for everyone.

P.s. They both beat me at bowling…I wonder how I would feel if they told everyone I was rubbish at bowling…

Please stop praying for my son with autism to be healed

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.

I 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.

Why I am proud my daughter won’t be in this year’s Christmas play

Maybe I am getting old but it does seem talk of Christmas seems to start earlier every year! We are only just over Halloween and already the shops have festive music, selection boxes and wrapping paper in prominent places!

 
As a trained teacher though there is one place I totally understand preparing early for Christmas and that is schools.There is a presumption that schools and churches will put on an annual nativity play or concert of some sort and the organisation involved in these is tremendous. It takes months of preparation to teach children songs, practice words and prepare costumes. For many children and parents it is the highlight of their year.

 
This year my just turned 8 year old daughter has asked not to be in the Christmas play. 
At first I was bitterly disappointed as Christmas is one of my favourite times of year and both my church and her school put on wonderful shows. But when she told me why she didn’t want to be included I actually cried.

 
“I don’t enjoy it at all“, was what she told me.

 
It is my duty as a parent to listen to my children and support them. She has a right to choose. My daughter has selective mutism, anxiety and autism. Being on a stage in front of others, remembering stage directions, song words and wearing itchy costumes is something she finds so stressful. She finds the change of routine difficult and the nose frightening. The thought that everyone is looking at her makes her feel physically sick.

 
I realised I wanted her to be part of it all for all the wrong reasons. I wanted it for me, not for her. I didn’t want her feeling excluded or feeling like she was missing out. In actual fact I was putting her in a situation that made her so uncomfortable and stressed.

 
This year I will watch the church play and her school play and no doubt I will still cry at ‘away in a manger’and beam with pride at little children remembering lines. Instead of watching my little girl perform I will have the beauty of holding her hand as she sits next to me and cheers for her friends. She will sing the songs happily and for the first time I will manage to hear every word as her beautiful voice is right next to my ears. We will laugh together at the fun parts and share the experience in a way she finds relaxing and enjoyable. It will be magical but in a very different way than I imagined. 

 
It took courage for her to be able to tell me something she knew I would find difficult to hear. She knows how much I love watching her do things and she knows how proud I am of her. This year she knows I am extra proud though at the fact she felt she could tell me she doesn’t enjoy being part of the Christmas play.

 
I will never forget her smile and the sparkle in her eyes the night I told her how proud I am of her for not being in the Christmas play this year.

 
It is ok to be different. It is ok to say no sometimes too.

This is my ‘normal’

This is my ‘normal’

The intense sadness is beginning to ease now. Waves of heaviness still creep up on me at times but I cry, wipes my tears away and face another day with a smile.
Maybe I am getting to that point of acceptance?
Maybe I am realising it isn’t the end of the world and I still have two beautiful, amazing children?
Or maybe it has all just become ‘normal’?

I looked back on some old videos and photos this week. There were happy moments of my children playing, flapping moments at lifts, lovely memories of my daughter singing, and too many photos of my children eating! Reminders of how things were and a stark reminder that in many ways things are just the same.

My son still has his chubby cheeks, big brown eyes and cheeky smile. My daughter has stunning golden hair, piercing blue eyes and beautiful petite features.
And my son is still not speaking…

This is my ‘normal’.

Since my children were months old I have been trailing them regularly to hospitals and clinics. We have so many professionals involved they have to add extra chairs at every meeting. If we decide to change something, if my children have medical issues arise or don’t eat their dinner for a couple of nights I feel I have to call everyone to keep them up-to-date. I have phone calls from schools, people dealing with our children, and others who have just received referrals about them on an everyday basis. We have to take our mobiles everywhere and be available to pick our children up at short notice at any time. Every week I have to discuss with transport about times my child will not be at school due to appointments.

This is my ‘normal’.

I have visuals in every room of my house, we have regimented routines, I read the same bedtime story every single night. I make the same dinners, in the same way, at the same time every week. I buy my children the exact same shoes in the next size hoping they won’t notice I have changed them as their feet grow. We visit the same places we have been to before. I use google street map to show places before we go there and I have become an expert at knowing where every single lift is in every shopping centre within travelling distance of my house. I spend hours watching hand dryers with my son because it keeps him happy.

This is my ‘normal’.

I can’t tell you if, or when, my son may speak. I can not tell you if, or when, my daughter may overcome her severe anxiety or be able to speak in school. I can not say if, or when, my son will ever stop wearing nappies. I do know my son is unlikely to ever attend mainstream school in any capacity. I have no idea if he will ever learn to read or write. I have no idea if his tumours will grow anywhere else in his body or if his seizures will remain stable.
I live with uncertainty. But I also live with intense gratitude.

This is my ‘normal’.

I am thankful for everything. I celebrate the mundane. I kiss and hug my children in private and in public without caring what anyone thinks. I smile because I have a thousand reasons and more to cause me to. I laugh with my children. I treasure life and find enjoyment in everyday moments. I take pictures of my children like tomorrow is not guaranteed. I love with all my heart because my children have taught me too.

This is my ‘normal’. And normal is good.

We came to an understanding…

I had plans for this summer. My son also had plans. The difficulty was our plans were very different.

Isaac is six. He has autism and global delay. He has neurofibromatosis. He also has huge sensory issues, rigid thinking and a massive love of lifts and hand dryers. He has no spoken language.

So when school finished for seven and a half weeks his plans involved food (mostly mashed potato and gravy), lifts, hand dryers, food, hand dryers and more lifts…and maybe the occasional ride on a train.

I, on the other hand, wanted day trips, parks, picnics, garden play, road trips, time seeing family and shared adventures with him and his twin sister.

Someone had to give….

We came to an understanding and it went a bit like this:

I took him to a park…and then we went to a local supermarket where he could see the hand dryers.

I got what I wanted. He got what he wanted.

We were both happy.

I took him to soft play. He climbed about and even came back for a huge tight cuddle…which was his way of really saying ‘let’s go to the toilets now and see the wonderful hand dryers mum!’

So that is what we did.

He would play for a bit and then watch those dryers a bit more.

I took him to pottery painting. He humoured me by putting on the apron (with support) and putting a tiny amount of paint on his model…and then he tore that apron right off and found the toilets to look for a hand dryer!

He has no problem communicating what he wants when it comes to his agenda…

I took him took him on a train ride to a big city. His favourite place there was the lift at the train station! Nothing else mattered.

We traveled for an hour by train just to see a lift! But you have never seen a happier boy than Isaac was at that lift!

By now we were coming to an understanding.

I decided to try to have a day without lifts or hand dryers…

I took him to the park again. This time all he wanted was the bushes at the side of the path! He felt them, watched them, heard them and even licked them. Well, what else did I think he would do at the play park?

This is life with Isaac. He had no idea others were staring at him.

We had an invite to a family event at a local restaurant. Isaac made me so proud sitting at a large table and eating his meal (mostly using cutlery) and even having some pudding. But that was followed by an full 20 minutes in the toilets at the…well I think you probably know by now where he wanted to go to.

It wasn’t like I was hoping to speak to those relatives anyway…

A charity invited us for a day trip to the safari park. Isaac showed not one second of interest in any animal. In fact he never even glanced at them.

But when he saw a sign for toilets he smiled, ran, and flapped with excitement.

I don’t expect he will go into veterinary care when he is older…

I took him and his sister on a steam train ride. He did enjoy looking out the window at the passing scenery and he did enjoy eating in the cafe. But if he could talk I am pretty sure his highlight would have been that the toilets had his favourite hand dryers in…the ones with buttons to press.

It is what it is. He sees the world in a very different way. And sometimes just having him with me is a bonus.

By the end I just decided to run with it. I only had to look at the excitement in his eyes and the happiness on his face to know that lifts and hand dryers are the most important things in his life. And if I want to get anything achieved these are the motivating factors to use.

I still would have preferred to have spent summer building sand castles, eating ice-cream, visiting castles and museums and time together as a family building memories. Hand dryers are loud, functional things that I would use only to…well dry my hands really! Lifts are convenient and quick ways to change levels…and that is when my interest ends.

But love takes you to places and has you do things in life you don’t expect.

And so I have spent an insubordinate amount of time this summer listening to hand dryers and watching lifts. And in his own way we have had fun. I had my day trips, parks, picnics and quality time with my son. And he had his fixations.

Life is about compromise. Love is amount accepting someone,however different to you they are, and not always wanting to change them. Making things work is about coming to an understanding.

I have had a lovely summer. Isaac has had a magical time. We just spent our quality time in places I never really imagined.

Even his twin sister seems to have come to an understanding…