Siblings space 

The journey of siblings of disabled children is so eloquently written in this piece, it literally took my breath away.
Having two sons and one daughter it was always expected that the two boys would share a bedroom. 

However the relentlessly long sleepless nights and lack of personal space finally took its toll about 3 years ago when Josh, then aged 7 could no longer cope with the pressures of keeping up with his schoolwork and maintaining general living while so sleep deprived. He broke down in tears and sobbed at his inability to cope in the conditions of sharing a bedroom with Dylan. From this point onwards Dylan slept in Grace’s pretty pink room while she bedded down with Josh in what was originally the boys room.

Josh and Grace have always been giving and considerate siblings to Dylan but I have often wondered about the constant low grade pressure this has on them. The pressure thats always gently simmering away whilst they try and grow and develop into little people themselves, always considering Dylans needs and how what they do as they grow and develop into higher functioning individuals affects Dylan who often seems so left behind by them.

I remember how upset Josh was when he found his favourite book stuffed under Dylans bed. Dylans favourite behavioural stim at the time was to deeply cough up phlegm and spit it onto a flat shiny surface to swirl and make patterns with it using his fingers. 

The shiny embossed pages of Josh’s book was perfect for this activity and by the time Dylans use for it had been discovered the pages had dried into a thick smelly congealed mess. The book had to be trashed and Josh was gutted. 

Over the years there have been countless allowances made for toys being broken, furniture being destroyed and spills, tears and clumsy crumpling of well loved treasures. 

All destruction is created without understanding of the upset it quietly causes and Josh and Grace do all they can to gently reassure Dylan “it’s okay, I know you didn’t mean to” before going off and licking the open wounds of having their prized possessions ruined once more. 

Their resilience is simply breathtaking. 

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8 thoughts on “Siblings space 

  1. More power to them!! My advice, as a grown sibling, is to let them know it is ok to feel feelings that are not pleasant to feel such as anger, jealousy of attention, etc. I know that I have probably said this before in previous comments, as I have been following your blog for a while, but I think it bears repeating.
    best wishes,
    jack

    Liked by 1 person

    • Hi Jack, we try and encourage transparency of feelings-especially negative ones- to try and avoid them bottling it up and ultimately feeling worse.
      It’s both a complex situation and difficult set of emotions to deal with though, especially when young.
      Thank for your comment and continued support. Hope you are well.

      Kate

      Liked by 1 person

  2. Yes, I tutor a youngster whose brother has severe non-typical autistic behaviours as part of a syndrome. I often wonder how different this young guy’s life would have been if he had been born with a different sibling. However my observations are that – at the age of 16 – he is one of the most sensitive, aware, thoughtful and caring guys I’ve ever come across. Certainly he does need times to dump all his angst and distress, and he worries a great deal about the effects of caring on his mother, but without doubt, he’s stronger for this experience and is growing into a splendid human being.
    Best wishes to your other kids – they look and sound like a fantastic pair.
    Jan x

    Liked by 1 person

  3. Hi, do you live in the uk? If so I can highly recommend young carers. They have helped my daughter so much. Our other son has been with them for a year now and really looks forward to his days out. Our daughter is now 16 and is now an advocate for young carers and has her qualification in peer mentoring meaning she can support the younger children. Having a sibling with special needs really gives them a set of skills way beyond their years and young carers are just fantastic at supporting them and helping them use these skill and understand them! 😊

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    • Hi yes both of Dylan’s siblings are members of young carers. Josh has even joined the young carers council. It’s been a great service to give them some dedicated time away from being carers so they can just be kids and relax a bit 🙂

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      • It’s really wonderful! Did Josh take part in meeting the health minister for the handbook for schools? Jazz was at the press launch of it here in NI on Wednesday night, (she is the education correspondent for a rare disease magazine.) This handbook is amazing, I’m really hoping it will make school so much easier for our young carers, it raises somethings we just take as part of life while if the school don’t know they are young carers then there is a break down in understanding. They are also trying to get the referral from schools numbers up, at the minute it only 5%! I was really shocked by that! It’s really wonderful when they want to give back and It’s really amazing what young carers can do. 😊

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