I put him to bed some nights and cry


Loving my son is easy, living with him is not.
Some would say he is controlling, a bully, self centred and aggressive. These would all be correct.
He is also frustrated, anxious, stressed and agitated.
No anger course, or therapy or counselling will help him.
He is 8 and can not speak. He is still in nappies. He has no sense of danger. He can scream for hours, smear, attack and demolish all in one day.
Yet he can laugh a deep laugh that is so contagious he makes everyone smile. He can flap and find utter delight in lift doors opening for hours.
He is the apple of my eye and the delight of my heart but some nights I put him to bed and cry. 
I cry for the life he is missing out on: The lack of friends, the inability to read and write, the fact I have no idea when or if he will ever be toilet trained. I cry because he is misunderstood and judged so much. I cry because he can not tell me anything like how he is feeling or what he likes. I cry because he is so vulnerable and that scares me. I cry through exhaustion having to constantly guess what he wants and why he is so upset. I cry through years of sleep deprivation, lack of support and the stress that something as simple as an open door makes him throw himself down the stairs in distress.
I put him to bed and cry because I do not want him to see my tears. I never want him to feel he disappoints me. I never want him to feel rejected or unloved. 
But I need to let the tears out. Pretending this is ok is not helping anyone.
My son has severe autism and it is very hard. My son has neurofibromatosis type 1 and that scares me. My son is vision impaired and that worries me.
His list of diagnosis and difficulties is comprehensive. He requires 24 hour care and relies on me for everything. He will need care all his life and his condition is progressive and unpredictable.
He brings me great joy but caring for him exhausts me.
Loving him is easy, living with him is not.
I love him more than words can say but I put him to bed tonight and cried.

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32 thoughts on “I put him to bed some nights and cry

  1. Miriam your journey is so tough and my heart weeps for you. You are one strong lady. Your son needs you so much. Challenges like this are do very hard to face. You are doing amazingly well. Take care

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  2. My heart goes out to you. Nobody can hold in the emotions you are feeling, it’s totally normal and healthy to let it all out as often as you blooming well need to! Sending lots of positive thoughts your way. xxx

    Liked by 1 person

  3. I understand – my son also has autism and tuberous sclerosis complex. I love him to pieces but I’m exhausted too and find myself crying many nights. Writing helps and I think honestly is important even though the words are sometimes hard to read.
    Virtual hugs!
    Sheila

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  4. Your post is full of love for your son and the truth of the difficulties of caring for him. You are an inspiration in sharing your tears, your fears, and your exhaustion for giving so much of yourself. Praying for respite for you in your journey of mothering your sweet boy.

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      • I’ve had years of feeling similar to you, don’t give up hope!! My child is 18 now and through the years gained a better understanding of the disorders and meltdowns/shutdowns and changed how I cope etc. Yes it’s still hard but there will come a light in the tunnel that you will see small changes for the better, I hired a sensory occupational therapist who taught me use of deep pressure techniques to try calm her when things are bad or a weighted blanket. You may have tried these but if not please try.. Sending out a massive hug from one mum to another 🤗

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  5. This story touched my heart is so many ways and yes I cried reading it because you put it so well in words exactly how I feel with my daughter too. So much of this I feel too x stay strong x

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  6. You’re an amazing mum Miriam. I’ve always felt like blogging is my therapy and I hope it is for you too. So much better that we share these kinds of thoughts and feelings – never be afraid to admit what is true. Hoping you feel that you can ask for respite when you need it, and that others around you can see when you need it too. Hugs x

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  7. HI ,

    Your writing is so honest and I feel the same on some days. I pray your son’s vision will not deteriorate and he is happy and enjoys his life . Also please take care of your health . Hugs and love to the kids

    Liked by 1 person

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