Having a child with a medical or developmental complication can be challenging. Doctor appointments, therapy sessions, procedures, and attention, supervision, and monitoring given around the clock can be exhausting for both the parent and the child. Added to this can be worries about how to help your other children. Having a brother or sister with medical or developmental differences can be challenging. There are several ways you can support siblings’ needs within your home.
Things are going to be different whether it is the way each child is treated, the expectations or responsibilities one child has versus another, or the amount of time spent with each child. Recognize that, and talk to your children about it. Have honest conversations letting them know that you understand their feelings about this. Avoid statements like “this is just how life is going to be” and instead validate “I understand you feel it is unfair that you have to pick up toys and he doesn’t.”
Help them grieve
Although this sounds extreme, it is true. There are going to be times in which the sibling expresses himself in ways that may be hard for you to hear. Though you may feel surprised, angry, or hurt, remember this is normal. Siblings are going to grieve the idea of having a sibling that is “like them” or without differences. This does not mean they love their brother or sister less, or love their family less, it means they see other families and friends and wonder why theirs is different. Rather than shaming, punishing, or sending your child on a guilt trip, try validating his or her feelings. You may be able to offer your own perspective on how you grieve, as well. It’s ok to say, “I know – this wasn’t anything like what I expected being a parent would be like. It can be really hard sometimes. But those moments when you guys are laughing at funny YouTube videos? That’s music to my heart.”
Siblings may worry about doctor’s appointments, medical procedures, therapy visits, new schools, etc. Part of their world is going to be hearing about their sibling and what is going on, so do not shelter them. They will worry more when they do not know what is going on. As siblings get older, depending on the needs of their brother or sister, they may begin to wonder or worry about their sibling’s future. It’s ok to have conversations with them about your plans for making sure that their sibling is cared for when you can’t. In all of these conversations, be honest, using the “simple truth,” and start with what your child’s concerns, thoughts, and expectations are. You can correct any misunderstandings and provide them with accurate information and reassurance when needed.
Some siblings benefit from educating others about their brother or sister’s condition and resulting needs. They may be able to present to their class, school, or church about the topic. On a smaller scale, your children may benefit from learning and practicing a few lines that they can feel free to share with others as needed. When friends come to the house and an autistic brother is melting down, being able to say, “That’s my brother, Patrick. He has autism and sometimes when he’s stressed he yells like that. Let’s go play in the basement until it’s calmer up here.” Or, in public, if a stranger asks why his sister is in a wheelchair, “she uses the chair because she has Spina Bifida and her legs don’t work like ours do. It helps her move around.” Of course, some children are more private and would prefer not to educate others. That’s ok, too!
Some siblings adopt a caregiver or protective role when it comes to their sibling with different needs. This often happens naturally and it’s not a bad thing. Just be mindful that your child is not missing out on “being a kid.” If helping a sibling feels like a choice – something he or she wants to do, rather than a chore – and something he or she can do alongside other activities and responsibilities, there usually is not a problem. If, on the other hand, they do not wish to help beyond the usual family expectations, this is not a problem either.
Allow space and individual attention
Your children may need time to breath, cope, and be away from their sibling with special needs and that is ok. Allow them to have time away with a family member or friend. If able, take them away for a night without their sibling. In the house, your children choose to spend time away from their sibling with special needs. That’s not necessarily a problem (and it can be a positive way to cope and recharge). Allow space, but monitor to be sure your child isn’t isolating herself or doesn’t feel like he isn’t wanted in the family. If you’re worried about how much time your child spends alone, talk to him or her.
It’s ok to be happy, it is ok to be sad. It is ok to be angry, frustrated, worried, jealous, annoyed, and excited. It is ok to be confused and not understand why. It is ok to be silly and treat every day normal. It’s ok to have your own celebrations and successes and want attention for those. It’s ok to forget about your sibling’s demands because of your own demands. It is ok to be a kid, it’s ok to be a brother or a sister, and you are loved just the way you are! Be sure your children hear those messages frequently.
Recognize when professional help may be needed
There are times when professional help can benefit siblings of children with medical or developmental differences. Don’t be afraid to reach out. Check with your child’s school, your medical provider, or the “team” working with your family already. Many agencies offer support groups for siblings of children with special needs. If your child is old enough, you may feel comfortable researching closed, online support groups for siblings. You may be able to find local groups that offer outings for your children to be around other siblings of children with special needs to help them relate and feel understood. If you have a child with medical needs, most hospital networks have Child Life Specialists who can provide education and support to patients and their families.