life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

When Autism is Front & Center May 11, 2011

Filed under: Life on the Jay train — the jay train @ 2:51 pm
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Before I start let me say that I love Jay.  With everything that I am or ever will be, I love him.  I am never ashamed of him or embarrassed by his ASD.  It is what it is and we live our lives through it.  Day by day, 1 foot just goes in front of the other and we make magic happen.  (I stole the making magic happen line from another mama blogger).  The thing is though … we see him everyday and have accepted that this is who he is.  His teachers and therapists know him and love him.  As we go about our business we don’t think of him as having autism 1st and then being our son or AC’s brother or being a boy or being 3 yrs old or anything else 2nd.  The autism is just another 1 of his wonderful layers.  As much a part of him as how sweet and loving he is or how funny he is or how smart he is or how great he is at climbing and balancing and matching or how handsome he is or how charming he is. 

The thing is though … There are times when the autism monster creeps up behind me and starts yelling in my ear and then holds my head with both hands and forces me to look him in the eye.  This usually happens when we’re around other children in Jay’s age group who are NT and the difference between them and him is SO obvious.  Not by choice, we are kind of in our own little world over here.  (That’s why I love all of you who read this and I love reading all the other blogs).  All my family/friends who have children, live many miles away and we don’t see each other often.  Also, even though they’re only 3 and 4, my children are among the older set.  My nieces and nephews are between 6 mths and 3 yrs old.  Let me add that my family is never judgmental when we do get together.  They try to understand what’s going on (as much as parents of NT children can) and they have patience out the wazoo.  They give us all the time and space we need and they always offer to help in whatever way they can.  They lay it on thick about what a good Mom I am and how much they admire me and they all beg for us to find a way to spend more time together because they love and miss my kids.  They really are amazing and I believe every word they say.  (Even the part about me being a great mom.  lol.  No, just kidding.  That part makes me uncomfortable.)  

I could never say this next sentence without causing some seriously hurt feelings and that is certainly not my intention, so you guys get to hear it …….. Lord knows I love them and their children too but it’s hard on my heart to be around them sometimes.  Sometimes it is easier (on me and my feelings) to stay in our little corner of life all by ourselves. 

The thing is, when Jay was a baby it was easy to “ignore” his delays.  The older he and all the kids get though, the bigger and whiter the elephant in the room gets.  All the other kids are developing and learning and progressing at a rate much faster than my Jay and the younger kids have now passed him and are more advanced than he is in most areas.  As his Mom, it is hard for me to watch.  It is hard to hear his 2 year old cousins talking and asking questions and sharing.  It is hard to see them use the potty and eat their veggies and then hear the stories from their Moms about how their biggest challenge is what to teach them next.  My adorable 2 yr old niece Reese has already learned her alphabet and how to count to 10 in both english and spanish.  Reese knows her shapes and her colours and the days of the week.  I could go on and on about Reese.  They’re not trying to be hurtful.  That is their reality but those are the moments when real life smacks me in the face and I can’t see autism as just another part of Jay.  Those are the moments when autism is front and center in his life.  In my life.

We (a bunch of cousins who grew up together but now live all over the world) are planning a big family vacation in July.  We’re heading to New Orleans for 5 days.  I love to travel and go to new places so I’m very excited about the trip.  There will be 13 adults and 9 children under the age of 5.  (Yikes!!!).  Due to financial constraints CC and Jay won’t be making the trip.  Having to buy 4 plane tickets has really put a damper on our vacations.  😦  So while the only reason Jay and CC aren’t taking this vacation with us is because it’s just too darn expensive and I will miss them terribly, it gives me some peace knowing that I wont have to watch Jay in that setting.  Surrounded by so many children who are younger than him but who are exactly where they should be developmentally.  Wait … Let me re-say that part.  The peace is in not having other people see how far behind he is and in not having to answer questions or wonder if they are thinking things that they don’t have the heart to say.  The peace is in not worrying about having to make or change the groups plans based on Jay’s mood and not knowing if my family is being cooperative but are slightly irritated that so much has to revolve around him.  The peace is in not having to be treated special or different for 5 days.  I don’t want to hide him, I don’t want him to miss out on family vacations, but I do want to protect him.  It’s a delicate balance.  I don’t want to have to see the looks or attention he would get as people who don’t spend a lot of time with him or know him well try to soak him in.  I know it’s natural to be curious about something, someone, anything that’s foreign to you but I don’t want that thing to be my son.  Even though I’ll be 1302 miles away, (Yes I mapquested it to get the # correct) and while I wont have to endure those stares or questions, I will still be torn up inside.  Autism will still be up front and center in my mind in New Orleans as I watch my nieces and nephews with some degree of envy.  On the other hand, I will be filled with great joy as I watch my sweet Ace get the chance to play with his cousins the way he so badly wants to play with his brother.

p.s. When I talk about my nieces and nephews, I mean my cousins and/or best friends kids.  I don’t have any actual biological nieces or nephews

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5 Responses to “When Autism is Front & Center”

  1. Luna Says:

    i know exactly what u mean! at a birthday party, a boy who was 2 years younger than my son asked him, “What school do you go to?”. My son’s reply, “2nd grade”. The boy, “No, what SCHOOL” My son, “2nd grade”. The boy gave him a look as if he’d grown antlers. If I leave it alone, the interaction will cause adults to look over and make sure everything’s okay. If I speak for my son, it will cause adults to look over and make sure everything’s okay.

    No one was judgy. Everyone was patient and tolerant and smiled at me with no pity in their faces. But they were looking. I understand where you’re coming from. It’s nice just to blend sometimes. Being average is highly-underated.

    NO is in my home state. Have fun, be safe and BE SAFE! N.O. can be kinda shady 😉

  2. Thanks and I will. We have lots of day time, kid-friendly stuff planned so hopefully that helps to keep us out of trouble. 🙂

  3. Alice Says:

    The thing I find hardest is how far ahead of my sons the other special needs kids are. I am used to them being way behind typical kids, but it breaks my heart to see what the other kids in their self-contained class can do so easily.
    Have a great trip! Your husband and Jay will get some nice bonding time.

    • I struggle a little with that too. Most of the other children in Jay’s self contained class are way ahead of him developmentally. I trick myself into being ok with it by constantly reminding myself that he’s the youngest in the class. I’m sure your son is better than those other children at some tasks. I’m heading over to your blog now. Looking forward to “meeting” your family.

    • Luna Says:

      yes, i imagine that is very discouraging. i was so uber-obsessed with my son that i never even looked at the other children. even NT’s develop at different stages though. my middle daughter, who is NT, was late to talk, late to potty-train, late to socialize…and now, at age 7, she’s the friendliest, most outgoing girl and she’s in the gifted program. (Opposite ends of the earth from my son) We’re reaching the point this year where she will surpass my son who is older than she is. It’s all very difficult. I’m sorry for your struggle and I hope you find a way to let go of the comparisons. (If you do find a way, let me know how! 😉


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