Living with someone who has special needs, you tend to focus on establishing certain skills. You try to grow a foundation of skills that hopefully can be used at some point in the future to gain independence.
However something that has recently gotten in the way of that for my family is when others offer their life advice to my brother, completely contradicting whatever we’re trying to teach him. They always mean well, and it’s never advice that’s terrible. It’s simply not advice that is particularly helpful or relevant to my brother or any other special needs child.
The best example for this is that my brother wants to be a singer and become famous that way. When you hear “dream big”, Benni does just that. I think most people know that dreaming big is important but within certain parameters, meaning that even when dreaming big one has to be realistic. Someone who has never run before in their life won’t be able to become the world’s fastest sprinter in a few months. My brother doesn’t have the capability of framing his dreams into a realistic mindset and tells everyone what he wants to accomplish. He introduces himself to others saying he wants to be the next Charlie Puth, that he’s the best singer (he’s okay) and that he has a ton of fans (not really). After this usually an unsolicited performance ensues, and his audience typically compliments him on it, telling him how good he sang. This only fuels his ambitions even more.
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What my parents and I work and worry about every single day is to create a future for my brother. We consistently hold family meetings where we discuss how we can help him become the best version of himself and become as independent as possible. In short we want him to become a valuable addition to society and contribute in his own very unique way. This means having an education, learning, and not being focused on this music dream of his. I don’t mean to belittle his dreams, but with so many of the basic skills lacking in order to function, every little amount of time is valuable and we try to allocate every bit of time to building up those skills. He’s often instead choosing to focus on performing in front of others or trying to work on how to become famous.
A different form of this advice given to Benni is when others tell him “Don’t let anyone stop you from pursuing your dreams”. Every time we then try to persuade Benni to do school work and stop singing, he sees us as the enemy trying to dissuade him from fulfilling his destiny. It takes a lot of patience, energy, and at times tears to get through that whole emotional back and forth. Once again, this advice is great if it’s applied by people who are able to gauge what is doable or within their capabilities when stretched to the maximum of their potential. However Benni doesn’t have that. If he focuses on his “music career” as he calls it, he gets deterred from school work which not only takes up more of our time, but also holds him back from finishing his high school degree. Without that he won’t be able to get a part-time job or even be able to pay his own bills. I think these skills are easily taken for granted, but it’s not the norm for everyone.
So overall, if somebody doesn’t know the situation please don’t undermine what others are trying to help their loved ones achieve by giving them life advice that really can’t be applied in their case.
Until then, I’ll try to convince my brother that yes, even Justin Bieber, had to go to school and do basic math!
Love,
Maxi
Mariele Zacharias says
Wonderful and true words Maxi
You are the best sister, partner and daughter a family can dream of.
Everything all of you have accomplished with Benny is so wonderful and so much hard work! I truly admire all Smithes for that!
maximilianesmith says
Thank you so much, Mariele! 🙂 I really appreciate your kind words!
Claire says
I have so much admiration for you and your family, and I agree that deferring to what parents want for their children (in any situation actually, not just with special needs kids) is SO important. My best friend growing up had two younger sisters with special needs, and unsolicited advice–especially when it contradicted how the parents were trying to raise them–was so actively unhelpful and frankly, rude.
maximilianesmith says
True, it really is applicable to all kids! 🙂 I can definitely imagine it being difficult for your best friend’s parents! Thank you so much for your kind words 🙂