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.

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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.

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

  1. My situation is totally different from yours. However, I am the mother of a 49 year old man who has Cerebral Palsy and requires full care. He has a job, but has been home since last June and will finally return to work on May 1. I cannot leave the house without him for fear the house will catch on fire or something dreadful will happen. My husband and I have not been out without him in all of this time. There is no such thing as “a date”. He goes everywhere we go. When I take a bath, he sits in the livingroom with my husband and I tell him exactly when I will be finished. I never have a meal without feeding him first. When he was younger, I used to put him in his wheelchair by the bathroom when I had to “go”. It has been neverending from day one. My situation is different, but, it is the same.

    Liked by 1 person

  2. I’m so sorry. Such a hard thing. We, too, have a special needs child– fetal alcohol spectrum disorder.
    We found a LOT of hope and our son made HUGE progress through a therapy program called Brain Highways (https://brainhighways.com/). They have remote / online programs for people who live far from their centers. I hope you might at least consider it.
    After doing Brain Highways, we made further progress by removing gluten from his diet.
    From one special-needs mom to another, my best wishes and thoughts are with you.

    Like

  3. I would like to comment, I too raised a son with autism. He has Pervasive Developmental Disorder (PDD). He was not diagnosed until he was 20 years of age. He is now 28. He could be left alone, fortunately. My sanity would never have tolerated it otherwise and plus I did have to work. We tried to get him on SSI to no avail. His Father died one afternoon extremely suddenly. I was at work when it happened. He, my son, was violent and hostile to me. He beat me up numerous times before his Father died. I was pummeled like a punching bag and someone always had to pull him off of me or he would never have stopped. Now nearly four years after his Father passed, I am extremely low income. Unable to work due to the repeated physical trauma that my body suffered and deeply depressed and hoping to die everyday. I am not old enough for Social Security. I am in my late fifties. My son and I no longer live together. This is a blessing. It is my sincere belief that one day he would have killed me.

    Liked by 1 person

  4. Right there with you. My son is 19 and Middle of the Autism Spectrum. Each kid is so wholly different. Mine is not easy, just different. Hang in there. I am out of empty platitudes, but I will say that you are doing a tough job well. Thanks for writing about it, from all of us.

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  5. This brought back so much. I tried to single parent my son from age 3-10. He has a brain injury that caused him to be registered blind with learning difficulties, cerebral palsy, autism and sensory processing difficulties. He couldn’t even play with a toy independently for a few minutes because he would lose track of it visually and melt down. If I needed a bath or a shower it had to be with him! Not ideal at all. A few years ago my parents and I sold our houses and bought a house which we split, so now live next door to each other. We have one internally adjoining door. Things are now much easier & I am eternally grateful to my amazing parents x

    Liked by 1 person

  6. I can relate to this in a way. My son is almost 15 and still can not be unsupervised. He also doesnt sleep, ever!!! Which is exhausting because if he is up, someone else has to be too. We have 4 kids left at home, ALL of them are on the autism spectrum. As much as enjoy their individual quirks and personalities, it’s EXHAUSTING.

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  7. I have a 23yr old child with Phelan McDermid Syndrome. You hit it right on the head. Vigilance, strength and determination is how we live our lives. We do whatever it takes to take care of our non verbal child, child with seizures, child with very low cognitive ability, and no since of fear. Finally after 21 yrs I reached out for help and got him 2 one on one aids that help in the home. They take care of him 5 days a week 10 hours a day. What a relief for me and my family to be blessed with these ladies. Thank you for sharing your story.

    Liked by 1 person

  8. I attatched safety locks on cabinets to keep toxic liquids such as bleach away from my son. And safety locks on the windows and doors so that he can’t leave. When my son was 7 years old I purchased an extra tall door gate from Target. This kept him secure in his bedroom which enabled me to take a shower. And I’m a single parent and mynson is 14 with Down syndrome and Autism so I do know how you feel. I try to stay connected on FB with special needs parents for support.

    Liked by 1 person

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