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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181 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.

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  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

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  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

    • Very heartening to see your practical approach to handle things. Eventually these types of issues reduce or disappear with age. As a mom to a 16 year old i face a teen wanting to date a girl- dating is not acceptable in India for normal kids, for special..??!!!… i wonder and am perplexed what to do… he tells me he wants to hold hands with a girl he had met once!! I feel sad and i know hos teenage dreams of love are normal, yet all he can talk about is power rangers or thomas or bob the builder- wd certainly drive even a down syndrome girl date away!!! The right side brain activity of love and longing does not match the left side of cognition!!!!

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  9. Wow! Thank you for sharing-
    I can relate on so many levels with my own 8 year old and as hard at it is, I thank you for sharing so I don’t feel all alone out there-
    I’ve had to create a world where people come to me-and even with all the attendant care it can feel so emotionally exhausting.
    Keep writing! I would love to hear more!

    Liked by 1 person

  10. This was a very powerful read Miriam. I thought it was hard with Skye cause she is so anxious about not seeing me all the time that I hardly have a minute to myself. I find it very draining but what you go through with Isaac due to a multitude of things is phenomenal. I don’t know how u do it but I completely understand why u do as I’d b exactly the same. How can ppl expect u to relax. They obv have absolutely no concept of what u r dealing with. I admire your honesty. You are a great writer and it is good to know that there are others out there like me too and our kids xxx

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  11. Pingback: What it is like to parent a child who can never be left alone | Mum Highs & Lows

  12. Thank you for your article. I have severly autistic 5 yr old identical twins. I live lime this. Some days it seems endless…especially the ones where they take turns sleeping. Best wishes to you and the other arents who need to be hyper vigilat all the time.

    Liked by 1 person

  13. I bore 3 normal children and was blessed. God chose you because he knew your child needed your patience and watchfulness. You are an amazing parent! My prayers are with you for the strength you need to cope each day. Bless you.🙏🏻🙏🏻

    Liked by 1 person

  14. Master 15, is still “THERE” he alopes… so why do self proclaimed autism advocates cut you down as a parent for daring to using the term ” severe ” or ‘profound”… while they can stand and fight and express outrage, our kids struggle with basic daily tasks, communication , eating, toileting… our services and supports are based on that term, our therapists, doctors and psychs use that term… who are these people who think they can represent all people with autism.. I have a vagina, I do not represent all women, and don’t; they say ” to know one child with autism , ist to know one child with autism”…My child is not the burden, the system that requires to come pleading on our knees hat in hand.

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  15. Our 10-yr-old’s autism has put us in a very similar lifestyle. It is exhausting. My husband and I are fortunate to have one another, to take shifts. The demands of her helplessness and destructive compulsions have almost destroyed our marriage….several times. It’s a burden on her big sister, as well. Feel free to contact me, if you ever need a friend who “gets it”.

    Liked by 1 person

  16. I have such empathy for you!! I have a special needs child, and know two others that do. It is so hard because you can so easily lose yourself and any form of life of your own. My step son is 27 and has epilepsy, so I can relate with the seizures. And stairs.
    I will keep you in my thoughts daily. As I do my other two friends.
    You are an angel (so to speak) on this earth, and your journey through this life is such that you can learn so much about unconditional love, compassion, patience, self preservation, I can go on. Don’t lose yourself in your son. You can do this.
    Btw where do you live?
    Also, your son is beautiful. Thank you for including pictures.
    I would like to help, if I can with your loneliness. I would like to at least be an email friend (or whatever works best for you). I am someone you could vent to about anything and never be judged. And I am trustworthy and would never repeat what you say to anyone. If not me, I hope you find someone or someones to lean on and share in this life that you have. Thank you for opening up and sharing with all of us.
    Peace, Jacquie

    Liked by 1 person

  17. My son cannot be left alone, and needs 24/7 assistance. He is 29 years old. Fortunately he has an array of services. Good article. Most people have no idea. I don’t believe that folks who fall on the severe end of the spectrum should have the same diagnosis as those who can self advocate. It just confuses things. It is not the same thing at all.

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  18. Hi
    You are not alone with this problem and to be honest there is no other way to say this but to state, ” you have to watch your son and it is the only way to keep him safe.”
    It hard
    It’s tough
    It’s tiring
    Choices:
    Trusted close friends can give you a break for a short period of time in a week.
    Dogs are good in identifying seizures

    Liked by 1 person

  19. You are a good parent, I work with a young man at a school who is very similar. His parents are lucky we have been able to teach him how to dial a phone. That way if is ever gets lost he can dial his home. But the constant sensory seeking is some of the most difficult part. And today I learned he has no pain receptors so now I am very nervous that he may hurt himself and we will not know.

    Liked by 1 person

  20. Thank you for writing this. This is life with my son Solomon, minus the seizures. Thankfully he is starting to develop some language, so hopefully soon he will be capable of asking for help.

    I see you, mama, and I’m here in the trenches with you.

    Liked by 1 person

  21. I feel for you, really, i do… I have a special myself too, who cant be left alone, especially with her sister. And yes im really really tired too, and i feel guilty feeling tired. U knw what i mean? But i just say these things, we both know we dont really intend to stop taking care of our kids, even when we know we are tired.

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  22. I definetely understand you!!!! My son is same age as yours and can never never be left alone, for almost all your same reasons!!!!! We are now training a service dog, to be with us and hopefully look after him when i am in another room. I thought no one could understand me, but here you are! Hugs from Italy! ❤

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  23. To all the moms, my heart and prayers go out to each and everyone of you. I pray God continued streghth over eac one of you individually and collectively.

    Liked by 1 person

  24. I have two children on the spectrum. They are impacted very differently than this. I would not compare my experience parenting them to yours. If we are going to advocate for autistic people then we need to advocate for all autistic people. That includes fighting for resources so that those with many many support needs can have multiple reliable caregivers. Anything less is not only unfair to the caregiver, but also to the autistic person who may be left with no support should their one or two caregivers become unable to look after them.

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  25. Thank you for sharing this. It is incredibly lonely, especially in the summers when they do not have school. My son is 15 with a dual diagnosis of Down syndrome & ASD. No seizures, but can never be left alone. I love him to the moon & beyond and am so grateful for our amazing community of support. We take it one day at a time.

    Liked by 1 person

  26. Oh my goodness…I’m so glad you wrote this! Though are children’s reasons for needing to have non-stop supervision vary slightly, the emotional effects are exactly the same! Sending you all my love and support from one SPD, self-proclaimed , loving & lonely Helicopter Mommy to another ❤

    Liked by 1 person

  27. I can relate for many of your child symptoms are the same as my first born. My oldest could not be left unsupervised either, not even to go to the bathroom unless he was restricted in his room that only contained a bed. But as a mother of two special need children and the knowledge that his care out grow my ability to train, I made a choice. It not an easy choice to make, not having him home with me everyday. But I needed to do whatsvwas best for him and my youngest son since in normal rule of life they will out live me. So we paced our oldest child in a residential educational program where As parents we maintain control and rights over our child, but he receives the 24/7/365 day he needs to keep him safe and teach him that which I was incapable. For the past two years I have seen him do things I could only dream about him being able to do. For my family this was the option we took. But this came after exhausting all other viable resources, from having others in our home at 6 am to 8pm. They only quiet time was when they where in school. I pray you find a village to assist you. I work with other parents and I stress the need to have that village of support.

    Liked by 1 person

  28. I have a 24 year old special needs daughter who is intellectually disabled. She will never be able to live independently but has qualified for a few services which allow her to stay at an adult day hab center during the day as well as pay for her meds, therapies, and doctor appointments. I hope they offer something similar in the U.K. Family has also been a blessing. My prayers go out to you and your sweet son. You are NOT alone. ❤

    Liked by 1 person

  29. Wow this is my life with a few differences. My son was diagnosed at 3. My life was filled with appointment after appointment. Growth was small but I have been giving him all that I can. He is my world. He has a lot of the same issues your son does and yes needs constant care and attention. I am scared for what happens after I’m gone.
    I don’t feel lonely. Yes I have to figure out where to go so I can show him the world. While not everybody is receptive to his actions, it is my responsibility to make sure he has all the knowledge I can give him. I want to let him see all the beautiful things there are for him to see out in the world, and try to teach him what he is supposed to while in it.
    If I could meet you I know exactly how Michael would react… He would shake your hand and maybe hug you while trying to lick your hair. But he would remember you, maybe not for ever, but he would remember the loving person that Mommy likes… and it would be great.
    Thank you so much for sharing your story and letting me share a little of mine.

    Liked by 1 person

  30. I totally get this. I am a mother of a 14 yr old non verbal, intellectual delay, and adhd son who does most of the things said here minus the seizures. I jave 5 other children ans love in a small apartment. We had no choice but to find my son the best home and tend to him from a separate house. My choice was difficult but I’m in our situation I believe I made the right choice for my son.

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