At just 10 years old my daughter already knows her brother will need lifelong care. While other children her age are out playing with friends, having time out on video games or at after school activities, she’s bathing her twin brother, making sure he is dried, helping dress him and reminding me to get his medication. She’s never known anything else despite her brother being stronger, taller and a minute older than she is. 

 She knows he can’t speak, but knows exactly how to communicate with him. She plays with him, reads to him and soothes him when he cries. It’s beautiful but also heart breaking, innocent but also concerning. 

 At 10 she knows already how vulnerable he is. She knows he will live at home and never be independent. She knows the chances of him learning self care skills like toileting, dressing, cooking and washing himself might never happen. She knows he will need full time care all his life. She knows he won’t marry and she wants to marry him to make that happen. 

As she used a flannel to gently bathe him I overhead the following:

‘One day I will marry you. Would you like that? (She waited for him to smile back and sign yes). That way you will be ok.’ 

I haven’t asked her to do any of this. She actually has more than enough of her own struggles to be contending with (autism, anxiety and eating issues to name a few) but her empathy and close bond with her brother is so natural and heartfelt. 

Yet when I asked if she could access help as a young carer, I was told she didn’t meet the strict criteria, she apparently wasn’t caring for him enough! Other than school and just three hours a week when she has a carer take her to activities (because I can’t take her anywhere due to having to care for her brother) she doesn’t ever get a break. Summer means seven weeks 24/7 with her brother as he gets zero respite in summer too. 

My daughter is just one of millions of siblings who live with brothers or sisters with complex needs but who receive no support or respite from the never ending job of caring. Whether I want it to or not her life is significantly limited by her brother’s needs. She can’t go out to play, go anywhere with loud noises or flashing lights that trigger his epilepsy, and we can’t do anything unplanned due to her brother’s severe autism. Meal times must be at the times he wants and she knows he won’t go to sleep unless she is home and in her room. 

She has witnessed seizures that have frightened her, surgery that has terrified her, meltdowns that have saddened her and self harming that has broken her heart...yet she was rejected from mental health services several times. 

Siblings carry a burden like no other. They experience things that are confusing and upsetting but often worry about talking about them as parents can be busy with their brother or sister. 

Of course, she can’t marry her brother and neither should she even want to. She should have ambition, friends, a care free childhood and growing independence but instead she worries if her brother will be ok when he gets older. 

We must never forget the siblings; they deserve the right to the best life possible. While there is so much to gain from having a disabled sibling like understanding compassion and a drive to help others, there is also pain, a lessening of opportunity and a sense of obligation. They need support before we have a generation of siblings ignored and forgotten because all everyone saw was the more obvious complex needs of their sibling. 

Don’t forget the siblings. They have high needs too.

Read more blogs by Miriam over at FaithMummy, or read more Family Fund Bloggers here.