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I take my son out not because I want to – but to avoid being guilt tripped and tormented for enjoying myself without him.

Deep down inside however, I despise the vicious cycle and all the people who hold me accountable for dragging him around with me, not for my or his own enjoyment- but so that they can feel better about the fact that he isn’t being left out.

In all respects, he most certainly isn’t missing out on anything if I don’t take him with me. Because he hates the experience of attending large gatherings with me even more than I hate being there with him.

The way I see it – if my son has to be there then I may as well not attend at all because the entire experience would be wasted.

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Nobody Sees The Full Picture

No one sees my perspective however… All they see is a cruel and cold-hearted mother who is too irresponsible and heartless to take her disabled son out with her.

I most certainly am not arguing their point of view because if I wasn’t these things then I wouldn’t be able to abandon him with my father as easily as what I can without giving it a second thought.

In fact, I try to numb myself as best as I can around my son so that he doesn’t feel what I’m thinking. I don’t want him to know how badly he breaks my heart on a daily basis. I don’t want him to know how I long to hear him speak or even simply how desperate I am to have his ten-year-old little self out of diapers.

I don’t want him to tap into my soul and hear me asking God why my son lacks some of the basic abilities that our Labrador has. And I know this child can read my vibes even if he can’t do much else.

He’s There For Me!

Even when I was in labour he knew. I remember sitting next to him and scolding him just begging him to go to bed so that I could slip away to hospital if needed without his sleep being disturbed. But he knew. He knew I was suffering even though no one else in the house could tell and he stayed by my side with his head on my shoulder allowing me to drain all the energy I needed from him until my waters broke and I had to leave.

He is incredible like that.

He knows whenever I’m scared and he boosts my courage by being there and giving me his strength. Out of all my children, he is the only one who will not leave my side when he senses my fear – not because he feels fearful, but because he doesn’t want to let me go through it alone.

This still doesn’t mean that I want to take him to big gatherings with me. The very thought just feels utterly pointless.

He Doesn’t Want To Be There

I just can’t see what the use is of taking him anywhere that he doesn’t want be. It’s not like taking a neurotypical child out who may not want to be at a function. I can manage that. I can coax them into having a good time. Heavens I can even manage to take my autistic child to events and create an enjoyable experience for them… just not my ten-year-old.

It’s almost like taking a wild beast to a place they don’t want to be and expecting them to conform to the environment that they’re suddenly found in. It’s just not going to happen!

We Do Go Places

Having said this there are places I can take him. Places that he loves and that I love being with him because he’s at peace. He loves the zoo, the outdoors anywhere that’s green and lush and beautiful… he loves the same places that I do and I would never avoid taking him along to the experiences that brings him joy.

In the space of a year, I might get one or two days without my son. Two days for just a few short hours to enjoy a change of scenery… and it’s never even anything that I would choose for myself! It’s usually only so that we can attend my in-laws large gatherings without any misadventures caused by my son. And again it’s not every single time. Only if I know it’s going to be an overwhelming experience. In all honesty, I’d much prefer not to be attending these functions either!

My in-laws need the child to be there though, not for anything other than the show of it all. They know how hard it is. They can see my husband and I suffering under the strain that our child causes us. And yet they persecute me if we dare take a day off without our son.

Life Sentence

It’s like a punishment for an unknown wrongdoing. A life sentence of sorts of which there is no escape. And in a brief moment that we do get a rare occasion to ourselves, it’s destroyed by people who feel they know better.

Judgmental individuals who believe we are the worst people on earth for not wanting to drag our son to an event that is going to set the child off and make him destroy my soul for everyone to see.

I wish these fools understood that the boy isn’t a freak show. He doesn’t get brought along for their entertainment or to test his patience.

It kills me. Each time we are forced to take him with us due only to moral obligations. It doesn’t feel right and we already know exactly what’s going to happen the moment we arrive.

No Pleasure In It

There’s absolutely no enjoyment when we take our son to a place he doesn’t want to be. It’s not a pleasurable experience whatsoever and really there’s no point in even going if he has to be there.

I hate the expectation that as a mother he has to be with me. The worst part is that the people with these unrealistic beliefs don’t even know what it’s like to take care of him for even an hour.

Oh, The Guilt!

It’s at a point now where my husband has been so severely guilt-tripped by his parents that he would prefer letting our son morph into a wild beast and consume the life out of me like some sort of spirit sucking vampire who feeds on their mother’s very life source – rather than disappointing his parents by not including our son.

For goodness sake just let that mother go out without forcing her to take her child with her if she is able to. Let that mother enjoy her time instead of persecuting her for a moment of bliss without her little one. And always keep in mind that she is the one who will be caring for that child until the day she dies- not you. So let her have some enjoyment whilst she can because unless you’ve lived the half-life that she does, you have absolutely no idea what it’s like to walk around in her shoes…

What support and/or advice would you offer to this mum? Tell us in the comments below.

  • I have an adult son, who has multiple disabilities still living at home. NDIS has helped a lot and I’m lucky as my son is good natured and I enjoy being with him. I get that not all are like this and it is difficult and no-one chooses to have their life turned upside down. Don’t judge but be there to support friends you know in this situation.

    Reply

  • People should not be judging unless they have tried walking in your shoes for one day. By the sounds of it you know what makes your son happy and what upsets him. What about the Mum’s who have their children and then get someone else to look after them daily so they can go to work. It sounds like you and your son have a very deep and emotional bond. He may not be able to speak to you but he shows by his actions how much you mean to him. I wish you both a wonderful Christmas.

    Reply

  • Awww I’m so sorry for people’s judgement. You should feel supported and trusted to know what you and your child needs. How dare people who are not in your shoes pass judgement. You do you and what’s best for you and your family.

    Reply

  • There’s no point forcing a child to do something or go somewhere if it going to effect their mental and physical well being. It’s not a case of can[‘t be bothered, it’s a disability issue;.


    • Yes I agree. Forcing can even have an opposite effect and increase fear

    Reply

  • Oh my gosh, this made me cry.. this mum is certainly not cruel and cold hearted, this is a job that would bring many to breaking point and I think she is so brave And remarkably strong for not giving up. I can only hope that someone can step up and offer the help that she needs so as to have some time for herself and then be the amazing mum she is and needs to be..

    Reply

  • Bless you !
    I can relate to parts of what you write as i have a disabled child and a child with multiple disorders who each don’t cope well visiting certain places. NDIS funding with funding for support workers for both, has brought us some relief and respite, even to spend some time with my other 2 children (however not much for myself).

    Reply

  • Honesty. It’s so refreshing. Well done for having the courage to be honest. Unfortunately nowadays it’s so rare as there are so many people out there to judge. I can’t begin to imagine what life is like for this family, and I think this mother should be allowed time without her disabled son without feeling the pressure of other peoples judgement. I would suggest you just do what you want to do and don’t apologise for it.

    Reply

  • It’s incredibly difficult looking after a child with a disability. It doesn’t mean you don’t love them just because you need a break. Can you access some respite services?

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  • This is heart breaking, I wonder if she has tried support groups such as ‘mytime’ which I know running in victoria

    Reply

  • Such a sad story – My heart really breaks for you. It really must be so hard. You have to try and ignore the judgements – you are doing the best you can. Chin Up

    Reply

  • Oh my heart breaks for you. Such a strong women & mother you are. I felt every word you wrote.

    Reply

  • I can totally understand not wanting to take your child with you to big events when it will make the two of you miserable. And I also get how you can feel trapped and overwhelmed in this situation. I just found your wording could have been different to get your point across

    Reply

  • You do you! It’s tough and I think your doing a great job

    Reply

  • Wow! You are awesome, your honesty is needed for this world, thank you. I have 8 kids, luckily for me, none are disabled. I honestly believe that parents with disabled children are truly an example of love and patience. Knowing what your son likes and needs means that you are also intelligent. Stop worrying about what others think about your parenting stule. Haters gonna hate, mostly because they be jealous.

    Reply

  • Sometimes you do just need that break and you need to not feel guilty about it. It can be tough but it might also be good for him to just stay at home with someone else

    Reply

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