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.