Hey, guys. I looked on Twitter and saw that today is the 27th anniversary of the ADA (Americans With Disabilities Act). I swear this isn’t on purpose. This post has been on my editorial calendar for a while. It’s just a pretty cool coincidence.
With that said, every time I try to write about having a sibling with autism, I can never put it to fruition because blog posts tend to be complete and wrapped up in a bow, while this isn’t. It’s raw and complicated and emotional. There’s no real way to choose a topic and run with it. With that said, this is a completely disorganized post. I chose seven things of a running list to talk about and left it at that for now. There’ll probably be another list at some point, but for now, I’m talking about some life experiences in no particular order. I hope you enjoy.
Disclaimer – This doesn’t describe everyone’s experience. There is a spectrum to autism, but my brother’s is very severe. He’s nonverbal and has a lot of sensory issues. He has some physical problems, but he can walk and see and hear. There are many people who need feeding tubes and wheel chairs, but that is not the case for us. Things could be a lot better or a lot worse for us, so we’re thankful for what we have. With that said, this is my experience (along with takes from my other brother), so keep these things in mind when reading. There is no one-size-fit-all when it comes to special needs, so there’s no way this post can embody everyone.
(P.S. The picture above is of both of my brothers. They’re two years apart, but my mom did that thing where she dressed them the same because they’re the same gender.)
//You Get Less Attention From Your Parents
My parents deny this, but it’s true. I wasn’t neglected or anything. I have a very happy and involved family. It’s just that Mysoon was diagnosed a few months after Zidan was born, so my parents had a child with autism and a newborn to worry about. That’s a lot for anybody. I wasn’t paid much attention to, which I loved. I don’t like being the center of attention. Most likely because of this fact. This is one thing I hated about high school. My parents became a lot more involved than they ever had before because of college and stuff, so it made me uncomfortable.
Not being paid attention to played out in different ways. My parents rarely went to open houses. Whenever I had performances or soccer games or something, only one of them (or neither sometimes) could attend because someone had to watch Mysoon. The same thing happens to Zidan.
Basically, all I’m saying is that we’re used to it. I personally like it because my parents have always treated me like an adult (within reason, of course). This is something most siblings of people with special needs experience because we are given a lot of responsibility. Our parents have enough to worry about, so we do the best we can to make sure they don’t have to worry about us.
//There Are People Who Don’t Think You Should Take Your Sibling Out In Public
Not everyone is accepting of Mysoon’s autism. It makes my blood boil sometimes what people say. I stopped reading The Financial Diet for a while because of an article the creator wrote. She basically said that if you can’t control your child, you shouldn’t take them out at all. She chalks this all up to her “experience” babysitting a kid with special needs. She “understands” what it feels like to have a kid have a mental breakdown in public and bother other people.
I’m going to be honest with you. I cried when I read that article. Real tears! It basically stated that we should never go out in public because it bothered other people. I’m sorry if my brother isn’t acting typically. It’s not his fault, but trust me, we don’t want him screaming in the restaurant any more than you do.
If we see that Mysoon is having trouble or is on the verge of a mental breakdown, we take him outside or have him wait in the car. But to say that we should never go out to dinner or go to the park or Disney World is out of the question. Would you like to stay cooped up in your whole life? Then why should he?
//There Are Many Kind And Understanding People
I couldn’t just leave it at that without addressing this. Sure there are many rude and closed-minded people out there, but there are also many helpful people. There was a long line for Pizza at Costco once and Mysoon was having one of his bad days. We usually don’t take him out if he’s in that state, but this outburst was really sudden. He punched me, which he almost never does, so it was pretty bad.
Everyone let us cut in line and the cashier gave us the food quickly. She let me sit him down in the chairs and let me go back and pay her later. This is just one of many examples of when people were kind and helpful.
Unfortunately, nowadays, disabilities are more common. It may be because people with disabilities aren’t put in asylums anymore, but most people have met someone or is related to someone with a disability. This makes them more understanding.
//The Concept Of A “Normal” Family Seems Foreign To You
Just the other day, this cloud opened in my brain reminding me that most people don’t deal with what we do. There are families with healthy kids, who go to regular school, and don’t worry about calling their state government about taking medicinal marijuana over state lines! (Sorry. Got a bit detailed there.)
This fact dawns on me sometimes and I think of what little problems these people have and what they don’t appreciate. It’s a strange feeling. Like there is too much air in my lungs or something because I have this understanding that not many people can comprehend.
//You Have To Accommodate Your Sibling For Regular Daily Things
It’s sort of just been an automatic thing. We ask for specific seats in restaurants. We don’t stay at parties or weddings the entire duration. We push him in a wheelchair when traveling because we don’t want him to wander off and get lost (It’s happened before multiple times). I let Mysoon push the grocery cart while we’re at Wal-Mart so he doesn’t wander off and is focused on one task. Little things like that become automatic.
//People Ask You About Vaccinations. A Lot.
I’m not going to talk about vaccinations. People make choices for their kids and that’s their business. There have been many judgemental directed at me about vaccines because of my brother, and I’ll leave it at that.
//All Your Problems Seem Minimal
A friend of mine told me that I never complain to her. I mean, I do complain, but not in a dissatisfied way if you know what I mean. Sure, I’m taking a hard class, but it’s hard to think of that as the worst thing in the world when your brother is sitting next to you watching the same scene of a movie over and over again. Nothing seems like the worst thing in the world when there’s something so much harder than the problem you’re facing now. In the show Speechless, the dad said something that really resonated with my dad:
“Other people’s opinions are nothing,” Jimmy explains. “You know what’s NOT nothing is a doctor who tells you there’s something wrong with your kid … It’s like, what else you got? … We’re not normal. We’re better. We’re bulletproof.”
Well, I’ll leave it at that. That is not close to everything special needs siblings go through, but I have to publish this at some point and it would be harder to write a very long and detailed post all at once. Sorry for posting this in the middle of the night. It was really hard to motivate myself to write this post and it’s not as polished and put together as my other blog posts. That’s just life I guess.
Do you have a special needs sibling? If so, can you relate?
Reading this made me tear up a little bit. I can definitely relate to this post. My younger brother has autism, and it’s really just me, my mom and dad who take care of him (and in reality, it’s not even that simple most of the time). Regardless- I know how hard it is to think hard about these things. Like, you KNOW these things but thinking about it actively and reflecting on it can be… difficult.
Anyways. I just want to thank you for sharing this. It can be isolating being in a family with someone who is special needs, and there’s so much pressure to talk about the how everyone’s great/strong/normal, or how tough things are or how you’re supposed to be sad about it all the time- not both, or the gray area in between. Let’s both keep working hard for our families and pave the way for others! Good vibes your way~
(P.S. I also work with kids with special needs! I think it’s so important when you do have experience to reach out. It can be a mentally and physically taxing job, but I commend you for it! I know it’s not easy. So power to us!)
I was crying almost the entire time writing this, so I understand the feeling. I’m happy that this post helped you. It’s difficult to talk about the hard stuff, so I understand what you mean about always telling everyone that everything is great. So many people tell me I’m strong, but I’m not a strong person. I’m just dealing with atypical circumstances that make me look strong. It’s hard for there to be a gray area. Anyway, thank you for your kind words.
I loved reading this! I haven’t met all too many people who have special needs siblings, as well, so it’s refreshing to read something from someone who’s experiencing similar things. My brother is somewhere on the autism spectrum, but we haven’t had him fully diagnosed. Tbh the doctors have no clue where his disabilities start and end, and it constantly changes anyway. He’s developmentally delayed and in the beginning it probably was the most difficult because he wouldn’t verbalize anything and just scream. Anyway, could relate to so much though it affected me differently in some ways than it did you. Kudos to having such a positive outlook on everything! I sometimes drift into a more negative mindset, feeling like I have to protect my brother from all the “dangers” and mean-spirited people in the world. Please keep sharing things like these!
I find myself slipping into a more negative mindset too. I think that it’s a natural thing to mourn the life that could have been. My brother is in his senior year of high school right now, and for the last few months, I have been thinking about the milestones he would’ve hit. My parents never got to bother him about college applications and I never got to tease him about prom. I’m glad this post helped you. It’s really hard to write about this stuff, but I don’t think enough people talk about it. I hope you’re doing well and I’m sorry for the late reply.