Thursday, November 7, 2013

It's Not You, It's Me- Sort Of

*Earlier this week, I deactivated my main personal Facebook account. I'm running my Deciphering Morgan page through another account I set up for autism only people and people that "get it." I'm not as active on that profile. Thus far, I'm not in any of my private groups, I haven't liked but a few pages and I think I'll keep it this way for a while. 

I'm on Facebook Island. It's completely selfish.

Judging from the pm's I'm getting from old friends on my DM page, some people think I might either be (a) dead or (b) mad at them.

I'm not either. I'm just in need of a break from neurotypical bliss and from first world neurotypical problems, among other things which I'm not at liberty to talk about here.

I'm being selfish and I'm not even apologizing for it. I should have done another profile years ago.

No offense, but I could give a crap about what paint color you're choosing or what little Becky did which is certifying her as a MENSA candidate this week. Harsh? Yes. Honest? Oh God, yes. Sometimes I feel like screaming, "I wish my first word problems were as mild as yours!!!"

It's hard, for me, as the mom of an autistic boy, to see pictures of kids that Morgan used to go to school with or play with when he was really young doing things that he can't do because homework takes up so much extra time. Or because we don't know how he'd do and honestly can't afford to figure it out. Or just being given the chance to be a kid with other kids outside of school. You know, play dates?  Or when they're doing things which aren't Thomas related. I love that my kid has a passion, but I wouldn't mind if he would also love to talk about something other than those trains.

It stabs when I see pictures of kids younger than Morgan on bikes without training wheels. Which, other than the adult trike he test drove once, he's never ever been able to do.

Or, when someone posts a pic of their son who used to attend school with Morgan having a sleepover, or a friend over. I'm not saying that Morgan doesn't have friends over ever, but the main friend he does have over who "gets it" is about to move an hour away.

"But Jessi, you're also the parent of a neurotypical kid, doesn't he matter?"

Yes, he does.  He matters just as much as Morgan.

Thus, I'm caught in two worlds. Every time I open Bay's notebook from kindy, I have this funny stab in my heart because his handwriting, that emerging skill, is neater in some ways than his brother, who is three years older than him. His coloring is better than Morgan's. Give that kid a paper and glue project and he nails it in a way that, due to a lack of fine motor skills, Morgan cannot right now.

Bay told me the other night that he's afraid of being smarter than Morgan one day. That he's afraid his brother will hate him. And that he wants to stop school because of that.

Except I think that Bay is sad sometimes at school. He says (and this is confirmed by a couple of the support staff at school), that no one really plays with him at recess. So I'm worried, as his mom.

I feel like it's Groundhog Day, where I'm trying to "teach" social skills to a child in order for him to make friends, although Bay's been on about a hundred play dates.

You're never supposed to compare children, whether they're your own or yours to someone else's. But I do it and it kills me.

I'm not bitter or mourning a life I've never had. I'm just, for right now, choosing to ignore the lives that aren't mine.

And, really, did you want me to be watching for signs of autism in your baby/home videos? Because I was, I really was. That's what we autism parents do, you know, we watch for signs of one of our own. Mention that your child has a an "obsession," and we're on that like hotcakes. Post pictures of a kid lining things up? Yep, we're talking about it.

So you see, it's not so much me... it's you. I'm being a bigot right now in that I can't be around anyone but those who have autism or other disabilities in their lives, even though I'm not saying much when compared to how much I normally say. I also was afraid of offending people, for a change. I don't want to do that.

I know it's understood, but I feel the need to clarify. You cannot help that you have neurotypical only kids any more than I can help that I've been blessed with an autistic child and a neurotypical child.

For now, I'm staying on Facebook Island. At least until I'm done taking Megace and this crap stops making me nuttier than a Christmas fruitcake.


  1. You say things so many of us feel. I just discovered your page and such not long ago..don't apologize for being real, for being full of self-ness. We have to insulate ourselves to much on "both sides" so to speak, and your ability to pinpoint those moments that challenge us the most is a gift, albeit a painful one. Thank you for your voice and your vulnerability.

    1. Thank you for your generosity in this compliment. I'm not sure that I deserve (I also suck at accepting compliments, lol). I was actually afraid to post this, for fear of pissing people off that I truly love. However, those are the same people that think it's okay to post crap like the "r-word" on FB. It's freedom of speech, but that's another reason why I've moved to FB island.

    2. I used to not accept compliments well regarding parenting my kid, but you know what? We work freakin' hard! We struggle and battle and laugh and joke, and at the end of the day, I am really happy for so and so and the kid who does so much, but mine can't. And that sucks. And he feels like he is 'not from this planet". My heart breaks more just for his own feelings of not fitting in with his planet than it does with the fact he can't ride a bike, etc. You rock. We rock. Our kids rock. (and spin, and sometimes flap, and scream...)

  2. Feeling is mutual. I feel the same EXACT way.

  3. Totally get it. All parents compare, whether they admit it or not, BTW. <3 you

  4. Yep. Been there, time and time again. There are also times when I need to get away from the "only autism all the time" groups for a bit. I waver back and forth.

  5. Why is that I feel and live exactly what yuo just posted? My and Val's only advantge (if you want to call it that) is that our boys are twins so the ASD/NT issue does not seem as pronunced. I often fear that my NT son is held back to benefit my ASD son. The problem is that NT won't do anything withhout ASD....

  6. Facebook island rocks. :) I have deactivated my personal account and run my page through a phantom account a few times recently. It's great. I completely agree with everything you said in your post. Hugs! I have been thinking of you a lot over the last month. I hope that your pain has lessened and that you will be on the mend soon. Glad the boys had a good month of October (even though I suck and got no shopping done for them like I wanted too). This way it will be a surprise. :)

  7. It's not selfish, it's self aware. You have to do what is right for you and your family at any given time. Your feelings are never "wrong", because they are YOUR feelings........ As a childless almost 40 year old, I get pushed to tears by my family all posting about their kids - I am jealous and I keep trying not to be, but it doesn't work....... You are an AMAZING Mum, and that is something that cannot be taken from you. Keep doing what you do, and enjoy the good moments as and when they come!

  8. I missed this post but i *GET* this post. Some days it's just too damn much. And it's okay to hide into this world of your own. (I have plenty of assvice though to make sure you don't SINK into the world and instead just hide in it. It's okay to hide there it is!)

    Also? I totally compare my two kids. I do. Especially given one is NT and one has ASD. They also are "lucky" enough to get the same gen ed teacher. And are only a year apart in school. Every interaction with those teachers stabs me so. freaking. hard.

    And my very NT 1st grader? Has a really hard time with personal interactions too. She had loads of red flags and had early intervention herself and I'm not entirely certain she isn't somewhere on some spectrum but she's mostly typical but she reminds me so much of me...she doesn't GET the way others behave. Because she's still a sweet and innocent and loving soul and the complexity of the evil of the world is....tricky.

    Your boys will make their way. You'll make your way. You take your time. And you are entitled to these feelings whether other people get them or not.

    Big fat hugs.

    ~Michelle Amond Yost

  9. I totally get this! I am new to this world, and no one in my life seems to understand how different everything is for us as a family. I am constantly explaining why we can't go here, or do this. It would just be nice if someone in my life would just get it and get onboard.

  10. ((Hugs)) and love from my own little corner! <3

  11. WOW!!! THANK YOU!!! I have been having so much trouble with this myself lately.