Last weekend, I got to do something that is close to my heart. I got to attend a training about Siblings of Children with Special Needs. It was a good feeling to see a room packed of people who wanted to learn about the unique issues for Siblings of Children with Special Needs. Siblings are often forgotten when it comes to support. There are many services for Children of Special Needs. You can always argue that it could be more, but they are there. The same goes for parents. I could easily jot down a long list of support groups and agencies that are here to help parents through the journey of parenting a Special Needs child. For Siblings? Not much. I feel we’re pretty well connected after being on this journey for six years, and I have met one (!) person who is focusing on Sarah’s needs solely. One person.
So, why are siblings important? The most obvious reason is that they are the ones who will have the longest relationship with the child with Special Needs. In many cases, they will become the caregivers after the parents are gone.
For me personally, I am driven by the relationship Sarah and Jacob always have had. Sarah loves her brother to pieces, and would do anything for him. She enriches his life by always playing with him, always being on his level, and always cuddling with him. She tells him every night to wake up early, so she can be with him before she goes to school. She runs into his room multiple times each night to give him that last kiss before he falls asleep. Jacob in returns responds more to Sarah than anyone else in this world. He smiles and interacts with her. He shakes his head and tells her no. He will go along with any movie, any book, and any silly game – as long as he can be with her.
At the same time, it is not always an equal relationship. Sarah’s and Jacob’s needs are very different. Well, you might say that you have the same situation, if you have kids of different ages or different interests. To some extent that is true, but then add to the mix that one of your children has needs that you have to attend to every day, every hour – no exceptions. With Jacob, his medical needs are around the clock, and they are non-negotiable. I might want to listen to Sarah play piano the second she asks me, but meds are due in 10 minutes, and I need to get them done in time, so we don’t jump into seizure land. Multi-tasking has become second nature. Deep suctioning Jacob at the same time as I am rattling of spelling words to Sarah is no “biggie”. No matter how good of a multi-tasker you might be, the siblings often get the shorter straw when it comes to attention from their parents.
One of the best parts of the training was when Adult Siblings told their stories. There were a few things that stuck with me.
They all said that their parents let them live their own lives, and that that was very important for them all. Many of them had special hobbies, and their parents had always supported them to do that, even if at times, it meant sacrifices to the whole family to make it happen.
They would have liked to have more alone time with their parents, and honest discussions about their siblings with their parents. For some of them, they had never had a single conversation with their parents about their sib with special needs, what was truly going on. And lastly, they would have liked their parents to take better care of themselves than completely devote their lives to the kid with special needs. No surprises, but all good reminders to us parents.
When it comes to Sarah, we really try to make sure she can have her own life. We never say no to an activity she wants to try or a friend she wants to see. Between Joakim and I we will make it happen. In addition, we at least once a month get a nurse for Jacob, so we both can go out and do something together with Sarah. It is always a special time.
After having had end-of-life discussions with Sarah about Jacob’s life, there is not too many more difficult discussions to have with a nine year old. So, we go with honesty. We talk about the disease Jacob has, we talk about the fact that Jacob won’t be with us forever, and we talk about what it means when he seizes, have pneumonia or whatever is on the table. This didn’t happen over night. In fact, it has taken us a couple of years to come to this place, but it is a good place to be in.
The second part of the training was to give us tools, so we could start running our own SibShops. A SibShop is a workshop for siblings of kids with special needs. The main purpose is for siblings to meet kids in the same situation they are in by doing fun activities and also talk about more serious stuff. We got to participate in an actual SibShop, and I was amazed to see how the kids started to share their stories. They nodded when someone told their story, and they all knew exactly what they were talking about. They found a place where they could share, where they didn’t have to be different, where they could be themselves. It was a good morning for those kids.
When it comes to our Sarah there are things that make her special being the sister of Jacob. At age nine, she already demonstrates a compassion and empathy for her friends that you don’t always see. She knows that we don’t all have the same abilities, and she is very forgiven, if someone is different. She is a mature little girl. She had to grow up a little bit quicker than many of her peers. Sarah is also a homebody. There is no better place than home. This could be who she simply is, but I also think it has to do with the fact that there are times she can’t be home. We’re rushing off to the hospital, and she has to go to friends’ houses. It is not always a choice, and she knows it. She has also extremely high expectations on herself. She will never go for second best. Sometimes, I get the feeling she performs for two, for her brother and herself.
So, this is to Sarah. I have today no idea when I will find the time to set up a SibShop, but I know it’s going to happen when the time is right. And when it happens, it is to Sarah and all the other siblings out there. Because it matters, and because those sibs are pretty darn important and powerful.
P.S. And the jelly beans are for Sarah...her favorite candy!