Hello, lovelies. As you probably know, last month was a very hectic time for me. I try to write about being a part of a special needs family more often, but it’s really hard to word things. I know that there are a lot of people with special needs siblings who read this blog and understand where I’m coming from. (I get your emails and they make me SO happy), but it’s hard to get things across to a typical demographic.
Instead of just writing an update of what went on in August, I’m going to give you some tips on how to get through hectic times (Otherwise, this post would just be me complaining and I don’t like complaining), with a few real-life examples from those three weeks. And I would like to preface that my family is amazing and I love them. This next part is mostly chronicling the first two days my mom was gone when nobody knew what they were doing, so please don’t think we’re all imbeciles.
With that said, let’s get into the crazy.
P.S. This isn’t a post you should skim. I know sometimes I just read the bullet points of a blog post, but you should actually read this one. Otherwise, it won’t get the point across.
//Background
Okay, for those of you who don’t know, my younger brother, Mysoon, has autism. He’s nineteen and is relatively low-functioning. Last month, my mom went to Bangladesh for three weeks to visit her family and it was our first time really taking care of Mysoon on our own.
Everyone else got their shit together once school started, but I carried the majority of the weight that first weekend, and I barely survived that. The day after my mom’s flight was move-in day. My dad and grandpa were supposed to come help, but my grandpa was feeling sick and my dad had to work, so it was more like babysitting three teenage boys instead of actually moving in. (The third boy is Akash, who is my other brother, Zidan’s age. He’s is currently living with us and is basically my third brother). We packed my car and drove an hour to my campus. When I went inside to sign in, Zidan got a really bad cut on his hand. (Like, we thought he would need stitches, type of cut) and started feeling light-headed.
We were at the entrance of my dorm in the lobby area, where the front desk people were looking for the first aid kit. Zidan was leaning on his knees on the couch. I ran down to the vending machine to get him a snack and some water. Because there were so many people, I could see that Mysoon was getting distressed, so I needed to get him out of there before anything happened. The problem was that Zidan felt too light-headed to get off the couch (and to be real with you, Zidan is kind of a drama queen (sorry bro), and I didn’t realize the cut was as bad as it was at the time, so I wasn’t as worried about him). Thankfully, Akash was there, so I didn’t have to haul Zidan up to my dorm room, while still watching Mysoon. I called my friend Cindy to see if she could come help with Zidan, but she was out at the time.
So yeah, I took Mysoon to my dorm room and moved all the furniture around by myself before going back to Zidan. I brought the rest of my stuff from my car and brought everyone to the room to help set things up. Thankfully, my roommate wasn’t there yet, so I didn’t have to explain the chaos. By the end of it, Zidan and Akash had to wait in the car with Mysoon because he was not having any of it, while I finished moving everything in.
Afterward, I took them out to lunch before driving back home.
The next day, of course, was Eid, and we all know the holidays are crazy, but it’s even crazier when your mom isn’t there to keep everything together. That job ended up falling to me. (This is the part where it sounds like I’m complaining, but I’m actually just telling you what we did, so don’t take it that way). I picked up my friend Deya that morning because she wanted to spend Eid with her brother (Akash). After driving back, my grandmother kept pestering me to take her to the store to buy one ingredient to cook something even though we had more than enough food cooked that morning. I ended up driving her to the Bengal store before heading back home. After that Deya and I got ready and while she put on makeup, Zidan and I cooked and set the table for us to eat breakfast.
My dad had a really bad headache that morning after driving my grandpa to the mosque, so he couldn’t drive us to the places we were supposed to go. While he took a nap, I ended up taking care of a lot of stuff like feeding Mysoon, making plans for the day, etc. I was so frazzled that morning because a lot of our divided tasks fell on me and I would tell everyone to do something but ended up having to do things myself. When I left to pick up Deya, I told Zidan to tell Mysoon to brush his teeth after he woke up. Mysoon can do all the morning stuff on his own. You just have to tell him to do it, but when I came back, I saw that he had woken up and was just sitting on the couch, while Zidan was in his room. I would have to remind my dad multiple times to give Mysoon his medicine. (Again, everyone got their shit together the next day. This was just that one weekend, and everyone was great after that.)
Things just escalated from there. I didn’t yell at anyone, but I definitely complained to my friends that night. Mysoon was honestly the least stressful part about my mom leaving. I called my cousins to see if they were out before heading to their house to hang out. That was also the beginning of me driving everyone everywhere. Zidan was very helpful with Mysoon while we were out. I will say that. We went home and rested for a bit before heading to my friends’house, but even that took a lot of turns that I don’t want to get into now. I cried four separate times that day because I was so overwhelmed (I was good at hiding it, so no one noticed. Unless they did and didn’t mention it, which I doubt because I have a very caring and nosy family/friends) and knew that something needed to change.
And that’s where I get into the “meat” of the post on how to handle hectic times in your life because the above paragraphs happened before my classes started. (You know, when I started driving back and forth from Atlanta to my university).
1. //Tell People
That night, I ended up dropping Akash and Deya at the train station instead of at her house because Zidan called me and told me that Mysoon wouldn’t fall asleep, which was bad since he had school the next morning. After dropping them off, I was crying in my car on my way back home. I got my act together, went inside, put Mysoon to bed, and brought Zidan into my room. The poor boy probably thought I was going to scold him, but I hugged him and started crying telling him that I was so stressed out and I really needed him to help me and to listen the first time I told him to do something instead of the fifth time.
He felt so bad because I don’t cry like that very often, and he stepped up his game quick. He would cook dinner (which at first was me telling him what to do and finding things at first, but it was a nice gesture), fed Mysoon, and took care of him more the two afternoons I wasn’t there. It took so much weight off my chest. I kind of wish I did talk to my dad, but most of the work he did was when I wasn’t there, so it didn’t make a big difference in my time. We switched off shifts pretty well once school started, so things were good after move-in day and Eid (plus the last week of my internship, which I did not go into here).
I do think that’s important to tell people when life is hectic, but it doesn’t work every time.
I did the majority of the cooking for me and my three brothers when I was in Atlanta. Zidan or my grandmother would cook for them the two nights I wasn’t, and she’d give food to my dad and grandpa. On the third week, my grandparents went to New York, and I had a big paper due that Friday, so I told Zidan and Akash to cook dinner for themselves that night because I had a lot of schoolwork.
After feeding Mysoon, I hunkered down and did my work. At around 9:30, I went to the kitchen to make myself dinner and asked my brothers if they had eaten dinner. They hadn’t, which wouldn’t matter on a weekend, but Zidan goes to sleep at 10 and wakes up at 5:30. I ended up cooking dinner for both of them before making my dinner. Before I started eating, I found out that my dad hadn’t eaten anything either, so I made dinner for him (which I was planning on doing anyway, it was just delayed because of the other two). Mysoon wasn’t sleeping, so I asked if he would eat again (because he doesn’t eat enough vegetables) and he ended up eating on some rice with cauliflower, which was great. By the time I fed him and prepared food for the four of them for the next day (when I would be back at school), it was 10:30 and I had to get Mysoon to sleep.
My dad found me on the couch eating dinner after that. I told him that I hadn’t gotten much work done that day. He felt bad and told me that I should just stay at the dorm an extra day instead of coming back. And I honestly would have done that if Mysoon ate enough when I wasn’t there (he didn’t eat as much food on Tuesdays and Thursdays.)
My point here is that people want to help, but they can’t help you if you don’t tell them. It doesn’t always make the biggest difference, but at least someone hears your struggles.
2. //Prioritize Two Big Things & Let Go Of The Rest
I was super worried that school would fall to the back burner behind work and my family in August. I’m self-employed but had only done my internship for the past few months and needed to get back to work. I ended up not working at all while my mom was gone. School and my family took priority. There wasn’t time for anything else. And as you read in the previous point, making sure everyone ate usually trumped the school work I needed to do, and that’s okay. You can’t do everything all at once.
My health was such a low priority last month. I never exercised outside of my P.E. class and ate out multiple times a week. I never drink coffee, but I remember one time where I bought Starbucks before my drive back to campus because I was so sure I would fall asleep behind the wheel (It was only 7 PM). I remember I went to Popeyes twice in one week because it was on the way to the highway and I wanted to get home quickly rather than cook and eat in my dorm. This was when the whole sandwich debate was happening, which I didn’t know about, and I kept wondering why the line was so long. (I got popcorn shrimp, by the way. Not the magic sandwich that everyone has been talking about)
Anyway, when things get hectic, choose only two things to prioritize. The rest doesn’t matter. I somehow managed to post on this blog once a week in the midst of everything, but I would have happily let it go. You can’t do it all and do it well.
3. //Wake Up Early
I had to wake up early every time I was at home because I had to get Mysoon ready for school, but it turned out to be great setup for me. The first few days, my dad would wake up early and get Mysoon ready for school, but I told him I could do it the mornings I was there since I had to wake up early anyway to drive back to campus. He also wasn’t getting enough sleep because he works so late, so splitting it 50/50 made more sense. My alarm would go off at 5:50 AM and I’d stay in bed until 6. After preparing Mysoon’s medicine, I would brush my teeth and wash my face. I’d wake Mysoon up at 6:08, give him his clothes, and he’d get ready by himself. After feeding him his medicine, he’d lay on the couch until his bus came at around 6:20.
After that, I had the morning to myself. It was honestly the only “me time” I had last month. I’d shower, eat breakfast, and chill for an hour before saying goodbye to my grandparents and driving the hour back to school. The drive back also wasn’t that bad because I was driving away from the city and there was no traffic.
Whenever I was tired the two nights a week I stayed at the dorm, I would just go to sleep and wake up early to finish my work before class. Waking up early forced me to make time for the things I needed to do. It also allowed me to go to sleep earlier in order to get enough of it. (I genuinely can’t function without sleep.)
4. //Have Something To Look Forward To
The reason I always said life was “hectic” or “crazy right now” instead of busy is that I never thought of myself as busy. I was never too busy to finish my work, sleep or meet up with a friend. Part of the reason for this is definitely multitasking. I don’t usually like multitasking, but it was necessary for me. I would read an article at the kitchen table while cooking dinner instead of doing them one at a time.
Anyway, since I was coming home so often during the week, my friend Stellah and I met up multiple times to hang out. (We may as well take advantage of being in the same area on a Wednesday). We’d hang out, talk, and watch Avatar: The Last Airbender (which I’ve finally convinced her to watch with me after ten years). During the week when things got crazy, there was always a light at the end of the tunnel. There was some point in my week that I made time to sit and not do anything. I wasn’t thinking about all the things I should have been doing like homework or laundry because I had a fun thing to do in that moment. Having something to look forward to, even something as mundane as watching a T.V show together eased my mind and gave me an intentional break.
5. //Take A Minute
This goes back to the most stressful Eid of my life. I made tea for myself and Deya, then ran around doing a bunch of errands for a bit. After reheating my drink in the microwave, Deya told me to “Sit. Take a minute.” And I did. I sat next to her, put my head on her shoulder and had my only uncrazed moment that day. After that, I decided to take a minute every day. A minute where I just sat and did nothing.
Taking a little bit of time like this every day kept me sane. Whenever life gets hectic and everyone around you is driving you crazy because they’re not helping, take a minute, close your eyes, and don’t talk to anyone.
//Why I’m Telling You This
I honestly don’t know. I’m genuinely considering scrapping this post and moving on because it looks like I’m complaining about my family and I don’t want to do that. Like I said before, everyone got their act together after the first weekend, and we’ll do better the next time my mom goes back to Bangladesh to visit her family. I think the reason I’m talking about this is that I’ve known I’d have to take care of Mysoon in the future for a long time, and I actually fucking did it. I got a taste of what my life will be like after my parents die (in the far far future) and now I know that Zidan and I will be able to handle it. There are people who read this blog who are in the same situation I am, who know what it’s like to be told their future responsibilities, but it’s different to actually see what the future looks like, practically.
Anyway, last month was hectic, but I got through it. It’ll be easier in the future when I don’t live an hour away and Zidan can help out more, but that’s where I’m at right now. If you have a special needs sibling, I hope this helps. There are not enough stories out there that talk about this stuff openly. I don’t know how to tie this all together in a way that makes sense, so I’ll just leave it at that.
Overall, it wasn’t as hard as I’m making it sound. It was just a lot at once. (I had four different nightmares about getting in a car accident because I was driving so often.10 If you don’t have a special needs sibling, these tips will still help you when life gets hectic and I hope you enjoyed my story. If you have a special needs sibling, feel free to shoot me an email.
Related – Knowing You Can Never Leave | On Growing Up With A Special Needs Sibling
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If you have a sibling with special needs, what was your first time taking care of them like?