By Tara Thompson
It’s not uncommon that children who have a sibling with special needs grow up with a hugely compassionate and empathetic nature and an ability to see things differently to other children.
My eldest daughter has always been kind and caring but I know that since her sister came along these qualities have only strengthened and she is super responsive and considerate to the needs of others.
Having a sister who has additional needs also means that perhaps she has grown up that little bit quicker, that she has learnt to be more independent and resilient and that she is a lot more patient and understanding than other children her age. As hard as it is, she has had to come second sometimes as her sister’s cerebral palsy means she needs a lot of hands on assistance. She has been scared by seeing her sister in hospital and watching things that are beyond her years and she has also had to learn a lot and become patient with the needs that her sister’s autism can present.
Yes, special siblings have an abundance of amazing qualities but they can struggle too.
They may feel like they need to always be perfect, that their problems may be not as important and that they miss out on a lot of attention. I am often left feeling guilty that she may feel any of these things and make a conscious effort to include her and remind her daily of how equally loved and important she is to our little family.
Here are some things that I think have helped us to help her understand, to navigate through her role and to help ensure she feels supported and important.
Special dates. My daughter loves when she has one-on-one time with either her dad or myself. Her face lights up and you cannot wipe the smile from her face. We make a massive effort to give her this time with us that she craves; whether it’s to take her somewhere special, like the movies or out to lunch; or to simply let her stay up a bit later and cuddle up to watch a movie. Whatever it is, quality one-on-one time is so important!
Ensuring her activities are seen as valued. We are always at appointments or activities for my daughter with special needs; they are essential and important and just a regular part of our day-to-day lives now. I try to make sure that her own activities (dancing/netball) are seen as just as important. Inviting others to watch can can help here as well as making sure we all go along where possible; writing her appointments in the diary like I would for therapy appointments, by taking photos and videos and simply just talking about the things she does and making a fuss.
Be open and honest. We talk about my daughter’s disabilities and if her sister has questions they are answered honestly. We admit that it is hard sometimes; hard for not only her sister but on her too. We explain what cerebral palsy and autism mean; how they affect the body, brain and behaviour and why therapy is important. Brothers and sisters need to understand how and why the constant need to work with their sibling and take them to appointments is important and necessary to help them grown and learn.
Involve them. When we incorporate therapy play at home it is never just for our child with a disability – everyone can play along. Sometimes I cater the activity to my eldest’s interests and then integrate therapy skills for her sister into it. Let your sibling come to appointments and be involved, but them sometimes make a point of also giving them a break too. If you don’t need to bring them along to all appointments, let them have a play date or some special time with family members.
Let them vent. My daughter has learnt to be super-patient with her sister’s needs, especially the emotional and behavioural challenges that arise from her autism. Yes, we have taught her ways to cope, talk and be patient and understanding but it’s also equally important she knows that she doesn’t have to be these things all of the time. When she complains that she is frustrated with how her sister is acting, that is ok. She is allowed to be annoyed, confused or upset. She doesn’t need to try to understand all of the time.
Special treats. I will often make an attempt to give my eldest an extra treat every now and again or special things for her to do if she doesn’t want to be a part of therapy of wants a break. I tell her it’s because I am proud of her and because she is such a wonderful helper and a great big sister.
I definitely don’t have all of the answers and am very much learning as I go but I am aware of the impact that being a special needs sibling has. I understand how she may feel left out at times or that a lot is expected of her but I also know all of these strategies have helped ensure she feels equally loved, valued and supported.