As we recently moved across the country, my children are learning more responsibility and still getting to know the neighborhood. Taking the bus home from school has been a little perplexing at times. We haven’t been sure where the bus stop is, what time it will come, and so many other scenarios.
One day my daughter walked into the house from school, her brother wasn’t with her, and the bus driver had pulled away. She immediately let me know that he didn’t get off the bus with her, and I put in a call to the bus driver. In the mean time the bus driver backed down the street to let him out at our house.
The next day I received a phone call from the bus driver.
Some of the first words I heard were, “She (our daughter) needs to take more responsibility for her brother.”
Our daughter is 11. Our son is 13, he’s not helpless, though he does experience disabilities.
Should our daughter take more responsibility for her brother?
If you have a child with special needs and one or more that do not, chances are you experience a lot of parenting guilt when it comes to your child who doesn’t have special needs. The child with special needs, due to the pressing nature of their needs often gets the most attention. You do everything you can to make it up to your other children, but you feel guilty.
Many of us are going to have a conversation one day with our child without special needs. We will need to talk about how they are going to have to take over in caring for their sibling when we are gone. No parent ever wants to lay that at the feet of their child. You have all the money you need to leave for the care of your disabled child? Great! But there will always be decisions that have to be made for their sibling’s care. It’s something you can’t ever walk away from.
I’ve pondered those words from the bus driver in my heart ever since.
When I take everything into consideration, I have to say she did just what she should.
If her brother chooses not to get off the bus, her 75 lbs to his 130 lbs is not going to get him off. She came and immediately let me know the situation.
But more importantly, she’s 11.
She is going to have plenty of time in her future where she will have to take charge of her brother. At 11, it’s not fair to burden her with that now. She deserves the chance to be an 11 year old girl who talks and laughs with her friends on the bus. The chance to be her own person, and have fun without the responsibility of always wondering if her brother is being safe, doing what he needs to, is important! She already takes on far more responsibility for him than she should. How could I possibly ask her to take on more?
This line we walk as parents is often confusing, and you find yourself always second guessing if you are making the right choices.
But I’m not second guessing this one.
Depending on the level of care and assistance your son will need, your daughter’s abilities and desires, and your son’s feelings, it may be good to come up with a plan that does not rely on your daughter to be a hands on care provider. We live in a state where there is a solid support program that pays family caregivers but even if you are getting enough hours to cover your basic expenses being the sole care provider can be draining. My friend provides care for her severely disabled brother. She almost never has a break, her mental health has suffered, and she is not having a chance to have a relationship of her own, finish school, or have a career because all she does is take care of him and her family is content to leave all the work to her. There are respite hours available for them but few people who want to provide respite and she’s afraid of leaving him with strangers. She’s had it drilled into her head since she was little that she is supposed to give up everything to provide care that she can’t put herself first, even when it’s physically harming her. We’ve talked about group homes and she plans to look into them “someday” but I’m afraid that someday will only come when she is so ill she can’t take care of herself, let alone him. I’m trying to gently encourage her to start using an out of home respite service occasionally so she can get a few days to just concentrate on herself.
I have another friend who’s family includes 4 boys, all with special needs including himself. The parents just decided that the 2nd oldest would care for the oldest. Never asked. None of them want to or are particularly suited to care for their oldest, significantly disabled brother. This isn’t good for the siblings and certainly isn’t good for the most impacted brother based on the interactions I’ve seen. The parents also never worked on preparing any of their kids to be independent even though 3/4 are perfectly capable of being independent, fully functional adults so it’s a whole messy, frustrating situation for everyone.
I’m glad you are trying not to put too much weight on your daughter’s shoulders now and thinking about both of your children’s needs. I strongly encourage you not to default to the idea that she will care for your son or that she will be doing hands on caregiving. It may be good now to look at services in different states and see of moving would be beneficial so that your son can have the services he needs to live the most independent, happy live he can have and your daughter can participate at the level that is healthy and right for her as well. It sounds like you are doing your best to get to that point and I think your children will fair better than my friends due to your thoughtfulness.
I am VERY aware of the discrepancy between what care is available and what you can actually access. We have had access to respite care in the past but getting someone to actually work those respite hours that is dependable and responsible is REALLY hard.
I mention in this post that even if you can have others caring for your loved one, there are still always going to be decisions to be made and care of some sort given. Someone has to be that person. I’m not necessarily opposed to him being in a home one day (except that he is totally capable- he just chooses not to be) and I would never expect her to give up her life for him. I do however expect her to have human kindness and to make sure that she checks on her brother and shows love to him as I do with my normally functioning brothers and sisters.
Glad you are not second guessing this one.
I hope the responsibility she takes from here on in will be her choice – her fully-informed choice done in the light of full knowledge.
And I know this is difficult to clarify in the uncertainty.
It is possible she may take this responsibility on in the form of a friend or a life partner or someone else to whom she is unequally yoked within the community.
Also, responsibility is one of those additive virtues.
I wish your daughter and your son well in their journeys of conscience and conscientisation.
Will she be taking on self-defence or muscling herself up for the journey?
Thank you. You bring up a very good point. It should be her choice done with a full knowledge.
I think self defense lessons are definitely in order.
This is so true. You don’t want her to build up resentments.
Although mine has older siblings; we still have the conversations of “who is going to take him when mom and dad pass” They are mapping out the little brother’s future. Since more there are more cutbacks that are facing us; the chances are that he goes to a group home or an assisted home is getting dimmer and dimmer. Tough conversation to have.
So yes; let your girl be 11, let her have friends and by all means; let her be free of taking care of her brother. Until one day; she is ready and willing to accept that responsibility and challenge of being the younger-yet-older sister.
Thank you for backing me up. It’s so easy to second guess yourself, but I really felt strongly on this one.