Little sparrow stay with me,
Don’t drift away so soon.
I need more time,
Though you must go on,
Stay with me little sparrow stay.
Everything can change in a instant.
You being here with me,
Seeing your smile,
The twinkle in your eyes.
I watch you twirl in the sun.
So many words left unsaid.
So many sights unseen.
I think of what should have been,
Could have been,
And now will never be.
If I had one more chance,
To tell you everything,
I would spare no breath,
Would never rest,
To ensure I get it all in.
So go my precious one,
It is okay.
Our time together at it’s end.
We will meet again.
I’ll be listening for your laughter in the wind.
- Honoring #MikaelaLynch (betweenhopeandahardplace.wordpress.com)
- Tears in Heaven (trydefyinggravity.wordpress.com)
- Body of Missing 9-Year-Old Autistic Girl Mikaela Lynch is Tragically Found (thestir.cafemom.com)
- May they rest in peace (outrunningthestorm.wordpress.com)
- Water Danger for Autistics (jesttupositive.wordpress.com)
- A beautiful angel, lost…. (autiemomwithablog.wordpress.com)
- This has to stop!!!! (autiemomwithablog.wordpress.com)
- A Flash Blog for Mikaela Lynch’s Family (autismslove.wordpress.com)
Partial Repost from http://seventhvoice.wordpress.com/2013/04/29/the-thing-about-autism/
Originally posted by Kyra Anderson 5.0 http://kyraanderson.wordpress.com/
The Thing about Autism – Exert
“You find yourself at the center of a huge debate. You’re the new black, the hot topic, part of a growing epidemic, an oft-cited statistic that grows at alarming rates or not at all, depending on who is doing the reporting. You’re living the thing most families fear. You’re the brave one, the resilient one, the courageous one, the one doing something she or he (but mostly she) says she can’t imagine herself doing, performing some super feat of parenting, loving with super patience or super understanding or super tolerance while she races home to a child that skips up the path of maturation and competence and independence and connection with nary a nudge from anyone.”
My comment to your post 🙂
Kyra 5.0, your words are a beautiful homage to parenting a child on the autism spectrum or having other special needs.
I re-read your post several times and had a little difficulty processing it. At first I thought how bold to brag on one’s self… Truth of the matter, parents need to be able to toot their own horns sometimes.
I work diligently with my son, but only see it as a labor of love. I don’t think of myself as a hero or supermom or feel that I am particularly brave or resilient. I am who I am and I do what I do because I love who I love with all that I have. And that’s it.
There are many of us who go through life not giving any thought to what we do everyday. It takes wonderful people like you, who bring us back to the level and make us feel like we are doing something right. Thank you for writing such a beautiful tribute to all of us who spend our days and night loving and raising our precious autist/aspie kids.
I had a lovely time on the phone with my cousin this morning. We joked about the little things couples do to feel connected…things that add interest and spice to a relationship. She and her husband certainly know what works for them, after all, they are happily married and have been for almost 30 years. They’re the poster child for the quintessential partnership that I think most couples intend to have but seldom achieve.
So how do I explain to her what relationships are really like for me?
How do I convey the level of discomfort I feel when having to share my space for long periods of time. I can hardly adapt to having overnight guests let alone sharing my space with someone for the rest of my life. Okay…perhaps not the rest of my life, but not even for the next couple years. It’s not the same as living with your children. They are a part of you and innately have the ability to understand you, to learn your likes and dislikes as they develop their own. There is a bond between mother and child that space and time cannot touch. It’s totally different when taking on an outsider, your partner, who is not as connected and has no clue about your needs or you not knowing how to convey those needs. How would I have explained to my husband that I needed to have a separate bedroom or my real desire was to have him as a neighbor? I did not realize these things until after marriage.
Should I be completely honest and say how much I hated being married, not just to my husband, but in general? How I hated almost every aspect of marriage, pretending to be happy while cohabitating with someone else, always being around people at work and at home. It would have been so much better if I had my own space. It was very stressful trying to cope with endless social events between both families which were excruciating at best. Those who knew me well noted the number of gatherings we hosted and realized it was highly unusual for me. They’d often point out my obvious discomfort. I was exhausted and there was no refuge outside of sleep which was often interrupted by husband’s carnal needs. I eventually retreated from husband and friends. I know they felt abandoned and I am sorry for that, but I had nothing left to give. I needed solitude.
As for something special, I pretended to love the flowers that he bought because it made him feel like he was doing something special. He could not understand that I hated cut flowers. They’d just die and stink and I ended up with a surplus of vases stuffed into a back cabinet. I guess he thought I liked flowers because other women like them. That’s as silly as thinking all females like pink. Why? Is it because someone out there made pink the universal color for femininity? Just for the record…I hate pink too.
I’m not sure what to do to appease my distain for romantic relationships and doing the little things to spice them up. I cannot explain how agonizingly awkward it is to hold hands or to snuggle which I had never done prior to marriage and had no clue how to do. This was never a suggestion of mine. But I would try to appease my husband when he requested snuggle time. Do I put my head on his shoulder or his chest or perhaps on his arm? Where do I put my arms? Should my arm go under me or in between us? The other arm feels weird. I don’t like the feel of his arm around my shoulder or the sound of our clothes rubbing together. Physical romance is far from my mind. There is nothing comforting about this exchange. I am frustrated and my hands are balling into fists. I can’t breathe…we’re too close. I excused myself and went into the living room. He follows me and wants to sit next to me and watch TV. There’s no escape. I just want to be alone and to read my book.
What do you need to be your best in a relationship?
There are many books, magazine, movies, blogs and the like addressing this subject. I’m not sure if these things are a help or a hindrance. My idea of the perfect relationship is based on having a cohesive cerebral existence with my partner and a willingness to listen to each other’s needs. It is finding a way to communicate those needs effectively and respectively in a language that each partner can understand. Our love, communication, commitment and even sex should extend beyond the boundaries of flesh. Perhaps that is why so many of us need other things to make our relationships feel special. We do not understand the deeper levels of connection. Perhaps we are merely filling a void with ritualized practices deemed necessary because they can creating finely woven threads of purposeful colonization between partners, but on the other hand, can imploding into an emotional vortex contingent upon one’s perception and reception of such carefully orchestrated events.
Obviously I don’t have the answers to many of these questions, but I do have a better understanding of my needs and what I have to give. Who knows, maybe someday I’ll be willing to try it again. But don’t get your hopes up dear cousin. I suspect you may already have some prospects in mind. Just know that I am not ready, but the possibilities are there.
I will no longer give into the occasional 10 minutes of awkward. Instead I will continue to improve my ability to communicate my needs and an ability to listen to the needs of others. And hopefully I can have that special relationship where we both find it important enough to develop creative ways to fulfill those needs.