“My parents are deceased and I am taking care of my older mentally disabled sister. she’s 40 years old. Truth be told, I don’t want to take care of her but she is my sister and she can’t live alone. My father passed this February and he was taking care of her. Ever since we were small, my parents coddled her, did everything for her, made excuses for her and did not teach her to be independent. For the past 25 years, her routine was to get up at 5am and stay in our living room and watch TV, she’d be asleep half the time and not leave until after midnight. She didn’t like sharing the TV with anyone. My parents supported this behavior for 25 years, which brings me to this question. they would fuss at her for being in the living room but never made her leave.” You can read more at….
I was at a loss of words after reading this confession on a forum where other siblings of people with special needs were ranting out their feelings about looking after their siblings after their parents were no more, and this wasn’t the only forum!
The question ‘What after us’ or ‘Who after us?’ remains one of the most thought about or worrisome question for parents. In cases where there is a single child, parents have different set of worries than those who also have a typical child.
While having a typical child helps the child with special needs in the growing up years the most, the relationship in their later years can be quite dynamic and dependent on many things including going away for studies and work, marriage and new additions in the family. Sometimes situations can pose greater problems but also offer wonderful solutions!
When I read the confession above, I saw multiple issues and this includes, not the selfishness but the helplessness of the sister. But who is to blame here? Yes, undoubtedly the parents!
We need to understand that this generation is probably the first where people with special needs are outliving their parents and may need decades of looking after, once their parents are no more. Now the role of the sibling becomes much more than what they or we’ve traditionally seen or are seeing. And it is natural for them to feel overwhelmed with the perceived responsibility of taking care of their sibling or feel bad about perceived sacrifices which they may have to make to do so.
Now as parents it becomes our duty to make sure that we make it as easy as we can for the siblings! We all know for a fact and studies suggest the same that “Despite the challenges, roughly eight out of ten siblings say they have a close relationship with their sibling with a disability and that this relationship enhances their life, compared to only six out of ten of the general public respondents. Six in ten say having a sibling with a disability has a positive impact on their quality of life, helping them develop patience, understanding, compassion, and providing perspective.”
This sounds great but the same studies also suggests…
“The survey reveals that many adults who have a sibling with special needs already are, or at some point will be, their siblings’ primary caregivers. Many feel financially unprepared to take on this role, and wish they knew more about how to plan for their sibling’s care and finances. Having a sibling with a developmental disability presents far-reaching challenges. About one in five say it has had a negative impact on the cohesiveness of their family, their relationship with their parents, their interactions with extended family or the quality of their lives. Many cite increased stress and having a limited social life as some of the additional challenges they face in caring for their sibling with a disability”
We know we have great kids and we are too sure about our values and upbringing. We also know that our typical child will eventually look after his sister/brother but we need to understand that even in a perfect world where all of this would happen, we’ll still have to do certain things to make this transition as easy for our typical child as we can. Of Course this depends on the child’s age but once they are teenagers or adults, Having ‘The Talk’ can be instrumental!
‘The Talk’ about the responsibilities, the finances, the alternate arrangements, the support group when needed and anything else that fits within your family situation should and must be talked about!”
But the question remains about all that we, parents should do to help our typical kids acquire or take over their role? I can think of a few pointers and we can discuss more in comments section later.
Make Your Child With Special Needs As Independent As Possible
There may be constraints on this based on various special needs but there is a scope of improvement within every disability and the parents in their lifetime should try to achieve that. If your child with special needs isn’t dependent on someone for his basic needs, you’ve already done a huge favour to your other child. Also being independent doesn’t just mean being toilet trained, it also means being able to fix a small sandwich or a meal alone, getting dressed, cleaning, buying basic necessities as well as making calls or knowing emergency numbers etc. You can add many more life skills in this list of ‘Must Have Skills.’
Help Them Have A Routine
The next most important thing that one should absolutely do is to make sure that your child with special needs has a routine. It could be either a job which would need the going out to work plus an extra morning and evening routine or hobby/gym/support classes where the child is required to go three/four days a week. The routine would not only be good for the child with special needs but also for the typical sibling and he’ll thank you for that! Trust me it is not a good habit to just feed your child with special needs and let him watch TV all day every day! You don’t have a pet; you have a human being!
Money makes the world go round and it is not an understatement. Not just the lack of money but also lack of financial clarity can make the role of a typical sibling extremely difficult. A lot of parents do save for their child with special needs or get some financial help from the government but how and on what things that money can be spent remains a topic of conflict.
( “Among those with a sibling who is disabled, a majority agree that they wish they knew more about how to plan for their sibling’s care and finances and worry about the cost of caring for their sibling. Those most likely to be eager for more information about such planning are those who expect to take on the role of primary caregiver or trustee in the future. They are also more likely to be worried about the cost of caring for their sibling. Among this same group, four in ten agree that taking care of their special needs sibling has caused their family great financial stress.”)
In another paragraph of the same confession above by a sibling in the beginning, she writes…
“We’ve also had arguments about money. She gets her SSI check every month and I told her she needs to contribute to the house. Again, because of my parents, she’s never contributed anything to them. They never asked her for her money. They felt it was her money and they felt bad taking it from her so she spends as she please. She bought a $500 purse one time. Mind you, she doesn’t know $5 from $500.”
Now while it is important to look after the interest of the child with special needs but some structure, model or system also needs to be created or set about how much money will be given to the sibling. Also, arrangements should be made to supervise how much money in one time can be spent by the person with special needs and if the sum in their bank account becomes too big for them to handle, how and who can make a decision about investing that further. The parents can make a group, comprising sibling, one or two other relatives or may be fellow parents who they trust, to take that decision collectively.
Think of Plan ‘B’
“Our typical siblings are going to do it and they will do it!” This is the hypothesis of this article but in case of their transfers, illness, vacations, family issues or any other unforeseen situation, who will look after your child with special needs; even if it is for a few days or a few months. Close relatives, friends, fellow parents who you trust can be contacted and a group can be formed where for a short span of time, the child may be accommodated and in case of a long arrangements, some parent supported residential facilities/hostels can be explored or at least visited to have an alternative. These all alternatives must be discussed and communicated with your typical child while you are alive to make them feel empowered.
Have a strong parent/sibling support group
This is the most important point! While growing up, both the typical child as well as the one with special needs get acquainted with many families who are in the same boat, many typical siblings also form a bond with other typical siblings from other families; such close relations can work really well when this child needs support in absence of his parents. In one of the recent case I heard about two special siblings who chose to get married and look after their siblings with special needs together! Amazing! Isn’t it? Also, such support groups can be extremely important to provide for the emotional support to the sibling and help him/her when needed. An active sibling group can also help in venting emotions and help them feel part of a community.
Thinking about the inevitability of death is never easy but it is a reality that needs to be dealt with an open mind as well as with a lot of creative solutions to make it easy for our children who we all love more than ourselves. It is also not good to underestimate the responsibility that lies with our typical children, even when we are alive. They often don’t take certain decisions or accept certain opportunities to help us look after their siblings and we need to appreciate and let them know how much they are appreciated now and then. But leaving them with the role of a parent when they are really NOT one, is a huge one to fulfill and by an open communication and informed decision-making, we can make it an easy journey for both or all of them.
I would love to hear your views on this topic. I am sure you’d have some pointers to add for other parents. If you do, please write us a comment and I’ll be happy to add/reply. If you think your friends or fellow parents should read this, please feel free to share!