When your baby is born you promise them the world. You promise to look after them, keep them safe and be there for them. When they are tiny and lying so innocently in your arms fully dependent upon others to meet all their needs it is so easy to promise them you will never leave them.
The reality is though that children grow. As they grow they need to learn responsibility, resilience, and independence and all three of these require periods of not being constantly supervised by a parent. I want to say I never ever set out to be over bearing, or a so called ‘helicopter parent’ or paranoid in any way.
Unfortunately though life changed the way I parent my son. He has multiple difficulties and wether I want to or not he simply can NOT be left unattended at any time, even at age 8.
Going to the bathroom is such a huge risk I leave the door wide open so I can see him and hear him, or I take him with me. Simple tasks like tidying the kitchen can only be done if I am able to see him completely or he is in the same room as me. If I leave the house for any reason I have no choice but to take him with me. I can only shower or bath when he is at school unless there is another adult here to watch his every move. Even popping to the car in my own driveway is a risk I can not take most days.
I do not want to live like this but I have no choice. I am fully aware how damaging this level of hyper-vigilance is to my son and to myself but I am actually doing it because there really is no other way. School have to show the same level of vigilance as do his respite centre so it isn’t just me.
He simply can not be left alone, ever.
Here are a few reasons why:
1. He has no language.
That poses huge risks. He can not ask for help, or shout if in danger. He can not ask to reach something that could fall on top of him and he can not tell us where he wants to go. So I have to be with him.
2. He has no concept of danger.
He would open the house door and stand right in the middle of a motorway and have no idea. He would eat grass or dog faeces or climb out a window. He would play with knives or drink bleach. I can not leave him for his own safety.
3. He sensory seeks all the time.
He seeks out water but can not swim. He seeks out lights…even if these are car headlights. He loves the noise of smashed glass…he climbs…he swings on doors…he bites and kicks…for his own safety and the safety of others he MUST be supervised.
4. He is violent.
One minute he can be the most loving, gently child but that can change in a moment and he can attack someone. While I know some of his ‘triggers’ for the safety of his sister he can not be left in a room alone with her or anyone else.
5. He smears.
As awful as this is to talk about it is real for so many families. Left alone for less than a minute and so much damage is done. No-one benefits from the clear up and the less it happens the better for everyone.
6. He eats everything.
Bedding is a current favourite but we have had clothing, toys, jigsaws, paper, pencils, lego, teddies and money all eaten regularly. The danger of that is very obvious and unless we wish to have a season ticket to the local hospital he MUST be watched.
7. He destroys.
He is the master of opportunity. Sensory seeking, no concept of danger, little awareness of cause and reaction and no understanding of empathy mean he has fed his sisters tropical fish milk, talcum powder, full tubs of fish food and several Thomas tank engine trains. He has thrown and broken expensive technology like iPads and cameras, he has blocked the toilet with all sorts and poured all manner of things into the bath tub. While he may have no understanding of his actions we do and it is vital this behaviour is prevented as much as possible. The only way to ensure that happens is to be always vigilant.
8. He has seizures.
Medically the consequences of leaving him unattended could be fatal. He has had seizures at the top of flights of stairs, outside and during the night. He could choke on his own vomit, badly injure himself or knock himself out. He must be watched.
9. He is vulnerable.
While he may be living in his own ‘bubble’ sadly he is at high risk for bullying and abuse or wandering off. As his mother I have to protect him. That means having to be with him. It is hard to trust when he has no communication to tell me anything.
People tell me I need to relax and that he needs to learn independence. What they don’t understand is that he never will be independent. The level of care he has now is what is likely to have to be in place throughout his adult life. It really is the only way to keep him safe and to keep others safe too.
I am tired. I cry. My life is severely restricted by the needs of another person. If I want my son to stay alive and have any quality of life I have no choice but to never leave him alone.
What’s it like to parent a child who can never be left alone?
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.
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.
So 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. It 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.
My son has autism spectrum disorder. That no doubt explains a lot about the picture of him above. Lack of eye contact is considered a classic sign of autism and it was indeed one of the first signs picked up in Isaac from a very young age.
What wasn’t picked up was the fact his lack of eye contact was much MORE than just autism and in fact was due to something much more worrying: as well as being autistic my son is also visually impaired.
His autism was diagnosed at age 3 and yet it took until age 8 for professionals to realise how poor his eyesight is.
This angers me as had he not been displaying other signs of autism such as communication difficulties, social challenges and repetitive behaviours, health professionals would have actually looked at his eyesight much earlier.
At age 4 he was diagnosed with the genetic condition neurofibromatosis type 1. It is widely known that this can lead to eye sight problems yet still no-one seemed to take my concerns about my sons eyes seriously.
At age 2 he would sit like this and look closely at a cushion for hours. I told his paediatrician, I told our family doctor, I told our health visitor…everyone told me it was ‘sensory’ and probably due to his autism. I foolishly believed them.
A few years later I recall taking a video of him in the garden. He was walking up and down the bushes in the garden feeling them as he walked repetitively back and forth in a straight line. I showed that video to so many people. I knew something wasn’t right but all everyone said is ‘that is autism’, or ‘that is sensory’. My non verbal child was feeling the bushes because he could not see yet no-one noticed. That is heartbreaking.
I needed answers. We began attending an eye clinic where they were more concerned about training him to look at cards and spent years putting drops in his eyes. The specialist struggled because my child would meltdown and cry at every appointment so they just kept asking us to come back. Finally at age 6 he was given glasses…only 18 months later to find they were the complete opposite prescription to what he needed!
At age 7, after a huge fight, Isaac had an MRI and we received some concrete answers.
His lack of eye contact, his looking at items closely, his feeling of everything…was not JUST his autism…he actually had three separate and serious eye conditions.
My son DOES have autism. He also has Microphthalmia (small eye) and persistent hyper-plastic primary vitreous (PHPV) leading to loss of sight on his right eye and his left eye has an optic glioma (tumour) on his optic nerve!
What is the point of me saying all this? I am NOT out for sympathy. That does not help my child in any way. What I want this post to do is to make people aware that when professionals say ‘that is just autism’ it may NOT be. When it comes to poor eye contact autism is one of the first things professionals look at. But is is NOT the only reason a child may have poor eye contact.
Be aware. It may not be easy to do but despite the challenges it is worth getting your child’s eyesight tested.
Your child’s lack of eye contact could well just be caused by autism but it is always best to know for definite.
I wish we had realised that sooner.
I remember the very first day I admitted to myself that my children were struggling. They were both 18 months old and neither of them were walking. One never gave eye contact not did he interact much and he had no language. The other could not crawl or roll or even pull herself up. Both relied on routine for everything!
I remember one Friday late afternoon making a call to my health visitor and leaving a tearful message on his answer phone.
Looking back that afternoon epitomises the entire point of this blog. Here was I in tears worried about my children while they were happy sitting on the couch watching TV.
They were happy…it was me who was sad.
As time went on and appointments started piling up for them both it became quickly apparent that I needed to do every bit as much as my children. Occupational therapists gave ME exercises to do with them, speech and language therapists sent ME on a course while the children were happy at home in their routine with babysitters. The paediatrician gave ME advice while only briefly examining my twins. Early intervention support relied on ME doing more with the children to ‘bring them on’. It felt clearly that I was to blame.
While my son scanned object after object across his eye line repetitively, happy doing his own thing, I was silently breaking my heart. When all the other children ran into nursery while my daughter needed carried in, I was the one who emotionally struggled.
When my non verbal, not toilet trained, highly delayed son started full time school years later he settled much quicker than I did. He assumed everyone would look after him while I knew otherwise. He had no awareness of the danger of getting into a taxi without mum (he hardly acknowledged who I was) nor any concept of what school was and just went with the flow. Meanwhile my anxiety rose to a whole new level knowing I was unable to know anything about his day, who he was with, what he had eaten or wether or not people were looking after my vulnerable baby.
I needed support to help me with that constant anxiety.
When my son has extreme meltdowns lasting hours and he is unable to communicate why, that affects us both. The fact I now have an 8 year old who I still can not communicate with on any meaningful level has damaged me.
I need help to work through my feelings of failure.
When I see other children riding bikes, playing with friends, going to dancing or any other of hundreds of ‘normal’ things both my children really struggle with my heart breaks.
I need people to understand that some times I need to mourn for the things my children will never achieve.
My body is carrying a heavy load. I am on full alert 24/7. I have professionals watching our every move, quick to point out if they feel my children’s struggles are down to my parenting. My mind is constantly alert thinking of our next appointment, the next thing I need to prepare my children for or the next person I need to chase up. After years that affects your body and your mind in ways you can not control.
I have had counselling and also have to take tablets to keep depression at bay. My thyroid is whacked and my blood pressure keeps rising. My adrenal glands are failing.
My doctors tell me to ‘rest’ but autism never rests. As a parent to two children with autism I can not afford to rest. There is no time off.
My children are generally happy. The world they live in is safe and predictable. I need to keep it that way to protect them. They need me. The reality is they always will.
They are perfect the way they are. They don’t even see themselves as different. It is because I am NOT autistic that I see things differently. I see how they could be mistreated and abused. I see them struggling to get jobs. I see my son requiring support all his life and never living independently. I see their vulnerability. I see their lack of social understanding. I see their need for constant routine. I see their naivety.
They don’t need therapy to help them cope with any of that. But I do.