The school called me about my daughter. She was saying she wasn't feeling well and asking to come home. 

The guilt at having to say once again I could not come for her was awful.

As I took the call I was sitting with her brother in a hospital ward as he came out of anaesthetic.

Other times I have not made her school assemblies because I have had to attend an urgent meeting for her brother.

After school clubs are something she can rarely go to either as her brother's routine can not be changed.

These things affect me deeply but more importantly they affect HER.

So how do you support a sibling of a child who has complex needs? 

Here are three ways I try to support my daughter as we walk together through life with her disabled brother.

Listen: 

I need to make time to just listen to my daughter.

She needs to know she can talk openly about her anger at me or her brother, her upset at seeing him sick, her worries for the future or even just about what is going on in HER life.

I need to give her my ears AND my mind and truly focus on her as she talks through experiences and concerns about living with the complexities of life with a disabled sibling.

There are times when listening actually involves holding her or just wiping her tears away gently.

By listening to her I am showing her that although her brother consumes so much of my life there is a place in my heart for her and I care deeply about her.

I need to do this daily even if only before bed or while driving the car but I also try and make sure that once a week I sit down with her and give her the mummy time she craves and needs so much.

Encourage:

Last week I asked my daughter in passing how she had got on with her recent spelling test.

Her head dropped and her voice quietened as she told me she had only got seven out of ten that day. I was disappointed as she was capable of more.

Then I paused and realised that she had done her homework alone that week because her brother had struggled and we had not practiced her words even once.

So I held her hands, lifted her little chin and said 

'Sweetie...that means you got seven full words right! Do you know how brilliant that is! I am so proud of you."

Siblings need to know they are noticed and they matter even if they don't achieve what we think they should.

We need to be aware how much of an impact life has on them and encourage them in whatever they do well.

We need to tell them how precious and special they are boost them as often as possible.

Support:

You are not a failure as a parent if you start to notice the sibling or siblings of your special needs child needs help.

Their behaviour may change, they may become depressed or they may struggle socially or academically.

If you have spent time listening to them and encouraging them but they still need more support that does not make you a failure.

There are places out there like young carers and befriending organisations who care and who have the right resources to support siblings.

Having a brother or sister with extra support needs affects the entire family and there is no shame in siblings needing time out or respite from the home situation.

It is to everyone's benefit that siblings have the opportunity to be typical children or teenagers too. 

Siblings to special needs children are very precious.

They cope with more than so many others yet they have the potential to change society through teaching tolerance, love and acceptance.

For parents siblings bring hope and joy when things become difficult, they give a reason to keep going through the toughest of times and they restore normality in chaos.

They are the rainbow at the end of the storm and the bird song at the start of a new day. 

When the school called about my daughter while I was with my son in hospital it was tough and my heart broke.

Life can be difficult but I really don't know what I would do without this beautiful smile, tender heart and precious arms that wrap around me daily reminding me life is precious and there is always a new day tomorrow. 

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Janette Surtees April 22, 2017

I have 2 sons. The eldest has Cerebral Palsy and significant Learning Disabilities. The youngest is 4 years younger, he has no disabilities. When they were 9 and 5 respectively I became a single parent. I deliberately made sure my youngest son was never expected to be a carer for my eldest son as I felt this wasnt appropriate for him. I encouraged him greatly with sport and his school work. But by far the best thing I felt I did for him was take him away on short holidays by himself without my eldest son. This really gave us a chance to talk, have fun, and deeply connect without my disabled son taking all my attention. It was difficult getting the care for the eldest son, but so so worth it for my youngest. I would highly recommend this to any parent in my situation. By the way my sons are now 29 and 25!

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