"You and I are sisters. If you fall remember I will always pick you up... As soon as I finishing laughing!" I have no clue who originally wrote this quote, but each time I read it, I get a big smile on my face because it really sums up the relationship I have with with my sister. Growing up, Audrey and I weren't like "normal"sisters who keep to themselves, doesn't really make any time for their sibling(s), and argues almost constintly. Instead we spent just about every waking minute together, played jokes on eachother , laughed or giggled almost constantly, had fun, and our mom could count how many times we argued from the day Audrey was born to the day she left her physical body here on earth with one hand. For the most part we were always really close to one another; but in the back of my mind I always wondered what it felt like for her to grow up alongside me with all of my disabilities?
In this blog, I will go more in depth with my relationship with my sister, share some challenges a sibling may experience with growing up around a sibling with disabilities, how to solve those challenges, and my advice for the best way to maintain a solid relalationship as a sibling to a sibling with disabilities.
When is She Going Back?
My sister; Audrey
I am just going to put it out there that being a sister is one of the best experiences in the world; even though I asked my parents when she was going back on the day she was born😉🤣😀. I still can't believe I said that about my sister. I guess that is where a three year old's mind goes when all they know is an environment that is quiet and calm for three years and then a sudden change to constant crying and chaos of having a newborn sister in the house. We have always been really close to one another though, with being more like a team that could never be broken apart as we went about life in our own unique way. Where as most siblings our age at the time would more than likely spend most of their time playing with material objects inside; we spent most if not all of our time outside as we rode our bikes or scooters, went for walks, and played about a million make- beleive games. We were constantly moving around with doing different activities that even though we had tons of toys, we never really stayed entertained with them or actually stayed still long enough to play with them and preferred to do an activity that allowed us to move and be active.
Having a sibling whether they are older or younger than you is truly a blessing for many reasons. For me personally though,the biggest reason why having a sibling is a blessing is for all the fun memories we created as we grew up together. Audrey and I always had a good time with one anthor and even though she is not here in physical form makes me sad, but I still have a relationship with her in a different way. In life, there are going to be good moments like the ones I talked about earlier in this post and bad moments like I talk about in some of my other posts. All bad moments effect the people around you; but how does it effect a sibling who witnesses it happening to their disabled sibling?
Challenges Siblings may Face growing up Around a Sibling with Disabilities
I can't speak for Audrey or even come close to imaging what was going through her mind during the times I either rolled backwards on my bike off a revein, blacked out and fell backwards unresponsive in the middle of the dinning room due to some seizure activity that made another appearance when I was 14, or the time I rolled over on the trampoline and dislocating my knee. It had to be scary for my whole family, but especially for her with witnessing each of these events , unsure of what happend, wanting to help but unsure how,and being told to standing off to the side if we were in a public place or if we were at home my parents would tell her to go inside or to go into a different room to remove her from the situation all together when all that was on her mind at the time was to make sure I was ok, so they could focus on me, the situation, and have enough room for the paramedics to take care of me if it was nessesarry like when I dislocated my knee. Once the situation was handled or being handled one of my parents would go check on Audrey to see how she is doing with what happened. These are just a few challenges that Audrey may have encountered with growing up with me; but what are some other challenges that siblings may experience face with growing up around a sibling with disabilities?
Other Challenges of growing up with a Sibling with Disabilities
Growing up with disabilities is challenging for the person with the disability,but it also effects the people around you with them trying to find the best care options, making tough decisions, and helping you out with daily tasks as needed. The toughest part about it though is that the sibling(s) of the sibling with the disabilities are in my opinion are in a way disconnected from what is going on with the health of their disabled sibling. On the outside they may seem like they are doing ok; but on the inside there are many different challenges they could be expiriencing which can include;
Trying to take care of a child with disabilities can be really tiring, stressful, and emotional; especially during bad situation that your focus is on that child and their needs which can cause you to unintentionally leave the other sibling(s) out. This can cause them to feel disconnect with what is going on around them and with their sibling.
- Feeling like they need to be perfect
In some cases when parents are going through a lot with all that it takes to care for the child with disabilities, the other sibling(s) may gain the feeling that they need to perfect with every aspect of their life in order to not add to the stress level that their parents are already feeling.
- Feeling like they can't express their feelings
Going back to the challenge of feeling like they need to be perfect goes along with this challenge of feeling like they can't express their feelings. No child wants to add unnecessary stress to what their parents are going through; especially when the parents are trying to find the best resources for the disabled sibling. The sibling(s) to the one with disabilities may be feeling a ton of different emotions with everything going on around them; but may be struggling with not sure how to express them or try to put a smile on for their parents as they push those emotions inside to not cause more stress on the parents.
Growing up alongside a sibling with disabilities has to be challenging. To the sibling(s) they may start to feel jealousy towards their disabled sibling because they feel like they are getting all the love, attention, or neat resources which makes them feel left out.
- Pressure about the future
Sibling(s) that are around this type of environment with the main focus being what is best for the sibling with disabilities in the future can be a lot of pressure on them. They may feel like their parents are expecting them to take over the role as being the care taker for that sibling when their parents get older which is a lot of pressure with them being out on their own, trying to take care of themselves and their sibling, making enough money to that care of both of their needs, and trying to find time to live their own life. It is just a bunch of unnecessary pressure.
Raising a child with disabilities whether mental or physical can be very challenging. This can bring up a lot of mixed emotions that can effects your body if held in or not dealt with in the proper way.
- Feeling like they need to have a high level of responsibility
When life is full of doctor's appointments, surgeries, research on the best care options, running errands, taking the kids to school, working,and still finding time to spend as a family is a big load and is hard to juggle all at once. Unfortunately though, that leaves out things like doing the chores around your house because it is not really high on your priorities list which the other sibling(s) notice and try to take on that extra responsibility, so their parents don't have to stress over it and can focus on the things that are higher on their priority list.
It can be a little lonely to be a sibling to a sibling with disabilities. Yes, they have each other, but what about making friends outside of your family? Audrey and I always offered to include each other in what we were doing with our friends; which for the most part worked for us; but sometimes it was better to let that sibling play with their friend on their owm. It is not always easy to find a friend who understands what it is like to have a sibling with disabilities, so it can sometimes be lonely.
These are just a few of the challenges that a sibling can experience with growing up with a sibling with disabilities; but what can parents do to help solve these challenges?
How can Parents Help Solve these Challenges?
When it comes to solving these different challenges that the sibling(s) may be facing as they grow up alongside their sibling with disabilities it is import for parents to
- Include them in descusions about the health of their disabled sibling in terms they will understanding.
This will do a few different things. First, it will help the sibling(s) feel included with what is happening around them. Second it will help them better understand their sibling's disabilities and what they are going through on a daily basis in terms they understand. Lastly, by including siblings in the descusions about the health of their disabled sibling will allow them to get advice from the doctor on how they can help their disabled sibling on a day to day basis.
- Let them know that they are perfect just the way they are
This may seem very simple; but it makes a bigger difference in their life than you think. A lot of the time when parents are dealing with a sibling that has disabilities, the sibling may hide how they are feeling or change their personality to mask who they truly are, so they don't cause any unnecessary stress.
- Sit down with them, so they can express their feelings, concerns, etc
Much like the previous solution, kids may hide how they are feeling about what is going on around them, but sooner or later those emotions will build up so much which can start effecting their health if they aren't properly dealt with. One of the best ways you can solve this challenge is by sitting down with them and frequently checking in on how they are doing, what they are feeling, and any worries they have on their minds at the moment. This will help them get their feeling out into the open, instead of holding them inside.
- Set aside time just for them to spend time with you. No matter what is going on at that moment
I find this to be a really important solution. Life can feel really hectic sometimes; but I highly suggest that for siblings of a disabled child that you set aside a date with them to just spend with them doing some sort of activity. I know it may be hard especially with worrying about the child with the disabilities; but it will be worth it for both you and them. When Audrey and I were younger our parents would plan a date with Audrey and no matter what was happening at that current moment they would take Audrey to do some sort of activity while I was at a play date. Some times it got hard; but it was something they set aside time for which ment a lot to Audrey with getting that moment with our parents.
- Have a plan for the future, so the pressure of taking care of the disabled sibling isn't fully on them
No matter what, I think it is always a good idea to have a plan for the future when you are taking care of a child with disabilities, so it doesn't fully fall on the sibling(s). This will also the disabled child to be taken care of, calms everyone's mind, and allows them to live their own life.
- Create a schedule to get everything done so the sibling(s) don't take on too much responsibiliy.
Creating a schedule is the best way to plan out your day with everything that comes with being a parent. This will allow you to get everything done in a stress free way.
- Help them find or start a club for siblings of siblings with disabilities
Finding a group for siblings of siblings with disabilities or starting your own is a wonderful way for them to enter act with other kids, find other kids who also have a disabled sibling, and make long lasting friends.
My Advice for Maintaining a Strong Relationship as a Sibling to a sibling with Disabilities
In my opinion, the best way for a sibling(s) maintain a strong relationship with their sibling with disabilities is to just be yourself. Disabled kids already express themselves in their own unique way because that is all they really know at a young age; but if the their sibling(s) just act like themselves then their relationship with their disabled sibling will be stronger. I believe that is why Audrey and I got along so well is because we were our own unique self with everything we did together which allowed us to have fun, laugh, and grow closer as siblings no matter where we were at or what was happening around us.
Conclusion
Being a sibling is one of the best experiences in the world. It provides kids with an opertunity to have a life long friend by their sides always as you team up and help each other with anything that comes your way. Yes, there will be good days and bad days, but overall I wouldn't change anything in the world with the type of relationship I have with my sister. By being yourself, you too can have a strong relationship with your disabled sibling.