So as you know if I have read my other posts I have two younger siblings with Autism Diagnoses as well as other physical and mental disabilities. If you read some of my other posts you will also know that I very often get asked the question “Was it hard to grow up that way?” or some variation. While I love my family and they mean the absolute world to me, the truth is that, yes sometimes it was hard. Can I compare it to anyone else’s life? No I can’t, but I can say that living with my brothers had it’s moments. It is hard for me to admit but there were times that I wished I was in a “normal family”. I am going tell you about a few of those times (don’t be sad mom. You can read all the happy things soon. Writing that one too). For the purpose of me not liking to use their names in a public forum I shall refer to them as A (older of the two but still younger than me) Deaf, Autism, OCD, learning disabilities and C (the youngest of the family) low functioning non- verbal Autism, Epilepsy.
I will start with addressing that “what is that like?” question and some other questions I have been asked. One hard part of being an Autism sibling was the fact that you seemed to always have to explain yourself and your family. I don’t know if this a completely unique experience to being an Autism family but probably is something that is experienced by anyone who has a family that is not exactly the norm. For me it was things like “Is your brother like Rain Man?” “Hmm no not really”. “Oh so what is his like special skill?” “um he annoys me a lot… oh and the youngest is really good at puzzles?”. “Oh so, were they always Autistic? Or were they normal at first?” (yes I have been asked that. More than once. And yes, just typing it makes me want to punch someone). “Yes I believe they have always been who they are. The youngest of the two, C, received his diagnosis when he was very young while A received his diagnoses a bit later as it was harder to get a clear diagnosis because he is deaf.” “So did you wish they were normal?” “Um sometimes I guess? Did you ever wish you were different? I don’t know how to answer this question for you… stranger.” Yes questions. Please be curious and feel free to ask me questions. Just have some common courtesy all right? I am an adult now and I don’t mind sharing my experiences with people but as a teenager or a kid? Ya sometimes it was weird. And uncomfortable. So there’s that.
The times that I can think of that I would think “man this sucks” the most often was when.. Well C would destroy my room. C has Pica which means basically that he eats a lot of things. By a lot I mean almost everything. He has eaten jewelry, a battery, beads and candles and (unfortunately for teenage me) he seemed to favor eating lip smacker chapstick and my cheap eye shadow. My basics. I would leave my room for, I swear, two minutes and come back to my chapsticks having being eaten and my eyeshadows broken and usually all over the floor and my bed. He also could have had the world record for ripping apart books at the spine. RIP Sabrina the Teenage Witch books. I thought I was smart when I started to hide things in my dresser under my clothes. Let's just say; that didn’t end well.
Other times would be when we couldn’t go or do things because the boys couldn’t come and we didn’t have anyone who could watch them. We didn’t get to travel much or go to fancy places. (Though we did go to the beach often which was awesome.) I also had to always hyper plan things like birthday parties and having people over so that we could make sure things would go smoothly and not bother the boys. I think... Or else maybe it was just my mom wanting to have time to clean… (love you). I never had a sleepover either until my grade 12 graduation ( and looking back I should have just never had one!). We had routines and you just didn’t mess with routines ok? Plus workers are hard to keep around for a long time or to have around when you have a whim to go on a day trip. 'Tis the life of not being able to have the girl down the street come babysit.
To get a little more serious I think some of the hardest parts were the “behaviour”. A had his most challenging behaviours when he was young. Sometimes it looked like him taking out his hearing aides and throwing them out of the car window. Or it meant only eating hot dog buns with ketchup. Sometimes it was that he was hyper and running around like the crazy kid he is. But sadly sometimes it was more aggressive. I don’t want to go too into it because I am finding this part harder to write than I expected it to be which is weird seeing as dealing with “behaviours” is essentially my everyday job. Either way I will just say that one time one of his outbursts meant I got a cut on my forehead from a flying Slowpoke Pokemon toy. After growing up, maturing, and therapy he did grow out of it it seems. Now he funnels all of his energy into whatever his interest is at the time. He still eats only selective and weird things which makes my mom’s job of making dinner very easy… Not!
C on the other hand was so quiet when he was young I think sometimes you would forget he was there. He was a cute blonde curly haired kid that I loved (and still love to) cuddle. My mom often says that C was the perfect kid. He did his own thing, was pretty easy going and… Well like I said he was adorable. (In our baby pictures we look almost the same. So there's a point of reference for you haha). C’s behaviours seemed to come about as he was older. It may be because he was struggling to communicate, hitting puberty or perhaps the onset of many types of seizures that he began to experience. I am not sure if we can say for sure. C began to have trouble when things didn't go as he wanted, he became obsessive about things like the movie he would watch and he started to exhibit aggression as well. Part of Autism is having restrictive behaviours. They are considered restrictive and an issue when the behaviours begin to impact one's ability to function on a day to day basis. This was unfortunately becoming the case. In the end he was able to receive an amazing opportunity for therapy and treatment which has helped him immensely.
The biggest problem in the end when it came to all of this was that it hurt. I don't mean physically per se but it hurt to see them acting this way and not knowing what to do. You saw them struggling but did not know how to help and you would feel hurt that they are doing this to you when help is all you were trying to do. It was hard not to take it personally even though of course it never was. And hard not to be mad at them (and not to feel guilty for being mad at them) when they would do something that broke something you liked or ruined something for you. It was had for all of us to start to learn that it wasn't about them doing something to us, it was about them needing something that they didn't know how to get.
In the end it’s the having all these feelings and not knowing if it was ok to feel them that was what would bother me the most. If I had a fight with my sister I could be mad at her and not think anything of it. But when A or C would do something to make me angry I would go back and forth with being mad and then feeling bad because I knew they didn't mean it.
I would sometimes find myself wondering what having a brother would be like and then instantly hating myself because I had two brothers so what was I thinking? The one thought that would make me the most sad was when I would think about what I would wish for if I had 3 wishes. The thought of “I wish they were normal” would pop in and then I would be mad at myself. How could I think that way? How ungrateful and awful must I be? They are my brothers and I love them and it is so selfish of me to think such things. I see now it wasn't about that. I wanted them to be “normal” for many reasons. On a basic level I wanted them to be normal because I wanted them to be like the siblings of my friends. To have them play with me and talk to me. I wanted my family to not be the different one anymore. I wanted my parents not to have to worry and to have so much on their plates. But most of all I wanted them to be normal so that people would treat them like people who deserved respect, and opportunity. I didn't see a world around me that accepted them and I hated that. I didn't see, at the time, that it was the world around me that needed to change to a place of acceptance and not them who needed to completely change to fit into the world.
Is it still hard sometimes? Of course. Our lives look dramatically different now but there are some aspects that won't ever change. However, I feel like I have a much better understanding of it now. Honestly this merely scratched the surface of some of the day to day deep rooted stuff that only I or a therapist can really understand. There are a lot more hard parts but there is also so much good too. I will write about that in another post and I do hope you read that one too because I think it is more so what you may not think of when you think of what it must be like. When people ask me about being an autism sibling they are thinking of the hard so I do want to and will most definitely talk about the good.