The 5 Lessons you learn with a special needs sibling.

I think I have to be pretty careful the way I word this post, mostly because every person is different and I think being my brother and I could have a completely different relationship from other family like our own. Im just speaking from experience here.

Billy has XXYY48, which means while most people have 46 chromosomes, my brother had 48. A person with down's syndrome has 47.

He has been diagnosed with Autism, ADHD and has some anxiety and facial tics. He had tubes put in his ears to help him to hear, very long tooth roots in his gums and is very skinny and gawky.

My brother has caused trouble, and embarrassed me, has made me proud and has terrorized me like any normal sibling, there are some considerable differences in our relationship than that of a typical brother and sister.

I love him, and wouldn't trade him for anything else in the world.

1.) Patience

I think it goes without any explanation that I have to be more patient with Billy then I would with someone without challenges.

Billy doesn't understand social cues, facial expressions and sometimes the thoughts in his head swirl around so fast they come out of his mouth garbled, and with reckless abandon.

As an expressive person with way too many words and not enough time to say them all, I can find working or just listening to Billy to be difficult.

 His slow and sometimes ranting style of speech annoys me and sometimes I get frustrated with his inability to speak properly. This is where the patience comes in.

2.) Knowledge is not just power, its a tool

I am so thankful that I understand enough about Billy's disorder that I am a pretty decent sister if I do say so myself.

But with the questions he asks and the amount of assistance he needs with school work or with critical thinking I am really glad that my parents made sure I had a great education.

Without being the super nerd that I was raised to be, I have no idea how Billy would function, because who would know the names of all of the constellations and the Lego movie characters if there was no Emily.

3.) There are different types of love

Billy hates to be hugged by me. My parents occasionally, but really he just hates being held unless he's upset or tired. There is the rare occasion during a long homework session where he needs to just stop and get a hug, but really, its a sensory thing for him, more about safety and security than anything else.

This photo was sneaky and had to be quick or I would've been smacked XD

Thinking he hates being restricted or maybe there was a germaphobe in the making I started to use a fist bump. This has become our signature now, using a fist bump for everything from a 'job well done' to a 'thank you'.

My point here is that not all love is the same and you can't express that you love someone the same way you express similar feelings to someone else.

I'm a very touchy person, and while touch distresses Bill, I have to adapt to that. A fist bump is like a hug for us, and that's how he shows me he loves me, and I'm okay with that.

4.) Listen, but also understand

There is a joke in my family that started from when I was about 10 or so. Billy is four years my junior and after listening to his garbled story once my dad had no idea what he just said.

I piped up with my usual tendency to smart mouth responses. "Hello my name is Emily and I will be your Billy translator this evening." I then explained in great detail what Billy said.

My mother in the kitchen one room over started to laugh. My dad was dumbfounded on how I could get all of that while on the other side of the room, not paying attention and playing on my Nintendo DS.

The truth is, I listen to Billy more often than most people, but if there is something in our environment he's talking about, then I get it, I've been a kid in the same house as him, with the same parents our whole lives.

It may sound weird, but a lot of the time, he likes when I finish his stories for him, or he likes having me explain because I'm just able to get out what he has bouncing around in his brain. We think similarly a lot of the time.

Environment or genetics, I'm as similar as you could possibly get.

5.) Not everything makes sense

There are countless times in the day when Billy and I will communicate with strange noises or with sign language WHILE we are talking.

He laughs at inappropriate times, and sometimes is too rough when he's playing with the dogs or with younger kids. But if you put a baby in his lap he lights up and treats the baby like a porcelain doll that he has to make laugh.

Billy saying goodbye before I left for College. Still no hug.

He's a goof, but he can get really shy. He doesn't make sense when he talks about how I would be the funniest skier ever. That makes no sense, but that's okay.

Sometimes he might even want to dance together in the living room. in 10 minutes maybe he wants to stop and play quietly. That makes no sense, but that's okay.


Lastly...

Comment below if you liked this post, or you think me posting more about Billy would be interesting.

If you didn't like it.... eh.