Tuesday, September 9, 2014

You asked me a question...

When I actually really sit down and think about the fact that my nephew has autism, I feel like my entire body has been sucker punched and I can't breath.

I've been on this journey with my sister since she shared her fears with me before Mason was one year old. I watched her struggle to figure out what was going on, i watched her learn the early intervention ropes, I witnessed (and felt ) the heartbreak of the diagnosis, even though I knew it was coming.

The twist during this time is that I have a child who is exactly 3 weeks younger than Mason, my daughter Georgia. And she hit every milestone EARLY. Like, super early. She started talking at 9 months old...and away she went. I think she is bright, some have said gifted, I've been told I should have her IQ tested. It was an emotional roller coaster to see her hit milestones and surpass her peers, while waiting for Mason catch up.

My sister never got mad. I never made a big deal about it. I think that's just how we worked it out so we could survive.

I talk to my sister like 5 times a day, I see Mason all the time. When the subject of autism comes up with coworkers or friends, I say, "My nephew has autism."

I "light it up blue" for autism awareness month, donate to causes that support autism research, I know just about as much as autism as a person not directly involved can know. I read every article, watch every documentary. I have an in depth understanding of baby/infant/toddler communication milestones and what should happen and why, and honestly I wish I did not know any of it.

I get annoyed at people who think "walking on toes" or "arm flapping" are criteria for an autism diagnosis. I want to punch people to say it is "over diagnosed".  I read autism message boards, read autism support websites, other blogs of autism moms..and still...I still sometimes get this horrible electric shock that goes through my body when the sentence "Mason has autism" actually means something in my brain. It's so unreal, I can't describe it.

So anyway, now I am pregnant. Maybe this is dumb, but it never occurred to me to think about how Mason being on the spectrum has changed how I view pregnancy and having another child. I just, like never thought about it because...I don't know.

"Well you are thinking about it because you are writing about it," you may be saying to yourself.

Yes! But I did not think about it on my own. I've been asked some really surprising questions since I became pregnant. Questions asked by nice, well meaning people, that I am definitely filing under "Weird Things People Ask You When You Are A Twin."

For example, when Jill got engaged, I can't tell you the amount of people who asked if I was jealous that she was getting married. FOR REAL. The first time I was asked, I was ....just...floored. And hurt and pissed. And also shocked because the person who  asked was someone who was a good friend of mine, and I just thought it said a lot more about her then it did about me...but anyway. YES PEOPLE ASKED ME THAT. 

Meanwhile, when I received the good news about her engagement via phone from my sister, I started screaming with joy in the middle of the street, jumping up and down, and crying with happiness. I like couldn't even move on with my life for 3 days because I was just so consumed with happiness and excitement. I immediately started researching what important duties maids of honor were supposed to do, wedding dresses...so...you get it. Not jealous. 

Like, why are people jealous of other people who get married anyway? The only good reason I can come up with to be jealous of a bride is if you totally thought her fiance was going to propose to you but then you have way bigger issues to deal with..jealousy aside.

There are lots of other examples and maybe I will do a blog on it, but back to my pregnancy and my sister. People KEEP asking me if my sister is upset that I am pregnant. Like, more than once or twice or three times.

"How does Jill  feel about your pregnancy?"

Huh? What the...????

That was my response the first time I was asked. Because the tone was not upbeat and bright, it was pretty morbid. I did not associate Mason having autism to the question at all because, like why would I? I couldn't figure out "what" they were actually asking by asking that question.

I still don't know what the correlation is ....but I can tell inquiring minds that she is fucking excited and I don't have to double check with her to know that answer to be true.

We are not these dumb assholes who spend time being jealous of each other or happy for each others downfalls...we are 100% supportive of each other, while also sometimes getting in fights and getting sick of each other, telling each other to shut up, hanging up on each other, and maybe occasionally once in a year we get into a knock em down drag em out fight a la 1994...but you know, that is what happens when you unconditionally love someone.

You know if you tell your twin to shut the fuck up you dumb crack whore bitch, she  will know that you do not really mean it, and after hanging up on you will call back 5 minutes later and say something like, "Are Selena Gomez and Demi Lavato the same person? "Why do I mix them up?" What do they even sing? Are they the same person?" and the fight is forgotten. That is what being a twin is like. It's like being in a relationship with yourself. So no jealousy. Not upset if the other person is happy. No way, not nobody, not no how!

The other question I have been asked a lot is if I am scared my child is going to have autism, and since people are asking, here is my answer right now.

If I do have a child with special needs, who is delayed, or has any disability I will know logistically how to handle it. I will know who to contact, what our rights are, what the rights of the child are, I will know how the school system works, and who, what, where, why, and how to contact when the time comes. I know what milestones to look for, what to talk to my pediatrician about, and I know that the earlier I get my child help, the more beneficial it is going to be later in life. So one thing to come out of this is that I will probably be hyper aware of things like pointing, receptive language, and pretend play...I was not with Georgia because I did not know that I should be...and honestly I am actually thankful that my sister has taught me all of this stuff because if it did happen, I will have the advantage of knowledge that my sister and many other first time moms of special needs children do not have.

And that is all I think about it right now. I am not scared exactly, nothing has happened, autism is huge in my life right now so I am not a person who thinks "this happens to other people"... but at the same time, at this point it is like me worrying about my older daughter Georgia running away as a teenager or something. I am just thankful that if autism does happen, I have the resources to get help for my baby asap. The emotional aspect is just not there right now because it can't be, and that is that.

I don't even know where I am going with this. Some people asked the question, it is interesting I guess but kind of weird, so I thought I would write about it. 

I love Mason, I love my sister, I love my baby, and we are all going to go through some hardships together just like any other family and all you can do support each other and work hard to be positive and happy  for yourself and your loved ones. 

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