What it is like to parent a child who can never be left alone

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.

IMG_0591
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.IMG_0449

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? 
Lonely.

IMG_0261

 

220 thoughts on “What it is like to parent a child who can never be left alone

  1. I know your pain and heartace. So many similarities with my son. He is 12 years old, and I can’t contain him and his anger…..

    I can only answer with tears. So so sorry for you and your little one

    Liked by 2 people

  2. I can refer to this, with a child with complexed health needs. No one knows, it’s hard, but something our child is trapped in, he cant say enough leave now. He is 16, going through transition he is so confused right now. My baby for life x

    Liked by 1 person

  3. As a parent with similar experiences I can completely understand how you feel. Parenting an exceptional child is very isolating, and takes incredible resiliency, love and sheer derermination. There are so many of us doing all we can for our kids, putting our own needs on the back burner to take care of them. We are amazing people.

    Liked by 1 person

  4. God bless you Kelly, I understand, my son also could not be left alone, I felt I had it easier because he did not walk or crawl so I feel for you because they don’t understand all they things that can harm them or others. There are others that don’t understand why do you do it, because you love him. ❤️❤️❤️ I’ll stop, text if you ever want to talk or vent. God knew you are special when he gave him to you. God bless you and your family. Take care

    Like

  5. We can so relate to all of this apart from the seizures and Holly is now 14 and still has to be constantly watched. It’s hard, it’s tiring and just relentless. You’re doing a great job. Remember that. You’re not alone. 💙❤️💙

    Liked by 1 person

  6. I understand ❣️
    My son Nathaniel is almost 15 February 1st 2020. Dravet Syndrome is our Family Member! Having to accept it isn’t easy.
    He is Just now saying more words expressing his emotions. It’s wonderful to see it! He’s our Special Needs Gift. I share your world ❤️

    Liked by 1 person

  7. I am you- I have a child like you.
    She is 18 and our lives are intertwined, we come as a package deal.
    It is difficult some days and scary, lonely and sad but some days are AMAZING.
    I have learned how to set up my house with special faucets, alarms, locks, and there is almost always things hidden in the microwave or In cabinets because if I don’t hide them they will be chewed on, eaten, ripped up.
    I sleep in a bed next to her to feel for her seizures because they are often wake her from sleep.
    I am you- you are not alone.
    Thank you for writing this.
    I

    Liked by 1 person

  8. You can’t imagine what it’s like until you are doing it yourself. We too have a daughter (19) who can’t be left alone. Although she knows many rights from wrongs the chances of injury and seizures are too high to take the risk. We have children who are lucky to have us and we are lucky to have them. My eyes, heart, brain are open in ways they were not before. It doesn’t make it easier day to day. We are with you and we feel your pain & your infinite love. Take care.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s