We are flying back to New York today. Last night as I was packing Emma called out for me. “Mommy! Mommy!” Em has only just begun to do this – call our name if she wants us or is wondering where we are. It’s such a small thing, but every time she does it, my heart skips a beat. I’ve even caught myself holding my breath, waiting to see if she’ll do it again. It brings me such joy. “Mommy!” she called, then waited to hear my answer. “Hey Em! I’m downstairs!” I called to her. “Mommy’s downstairs,” I could hear her saying as she came down to find me. (Another interruption. I know, but I can’t help it.) The fact that Emma came downstairs to find me is another thing that is fairly new. I could hear her footsteps coming down the stairs. “Have to go see Mommy nurse,” Emma said as she plopped into a chair near me.
“Oh no Em. What’s wrong?”
“Belly go bang-bang,” Emma said, bending over and holding her stomach. (This is what Em typically says when she’s about to throw up.) “You cannot punch. Have to go to the hospital. Go see hospital nurse.”
I looked at her and went through the following thought process – Oh shit. Could it be her appendix? What side is she holding? No, she’s holding the middle of her stomach, this can’t be her appendix, but what if it’s something serious? An ulcer, a tumor? Em doesn’t usually complain about aches and pains unless it’s serious. I then calculated how long it would take to drive her to the hospital, how long we would have to wait, how long it would take to get an x-ray, and then see an actual doctor to tell us the results… Finally having run through the entire scenario I decided I needed more information.
“Em. Where does it hurt exactly?”
She pointed to the middle of her stomach. “Hurts here. Emma’s sick. Take temperature?” I felt her forehead, which felt fine. “I’m cold. Emma has to stay home.” She wrapped her arms around herself and then said, “Emma can’t go to new school.” She frowned and pouted, while nodding her head. “I know, I know. Emma’s sick. Emma has to stay home with Mommy.”
“Oh Emmy.” I reached my arms out to her. She came over to me and rested her head on my shoulder. “I know. Emma doesn’t feel well,” she said.
Just as she said this Richard’s voice could be heard calling out, “Hey Em! Want to go for a ride on the 4-Wheeler?”
Em jumped up from the chair and called back, “Yes!” Then raced out the door and bounded up the stairs.
Anxiety. Stress. Fear. And that’s just what I’m feeling… For Em it’s got to be even more complicated.
Em on the 4-wheeler
There is a full length Western playing up in my stomach; I need a four wheeler! You and Richard are living the dream that is, rather than the nightmare society paints. I’ll have to read his works. I have a working holiday soon in Spain. Perhaps I’ll bring a book along. Though where I will find the time, between the beach . . . And new explores . . .
If you do find the time, The Book of Paul is a wild ride of a thriller! Dark, funny, crazy, there’s a villan who makes Hannibal Lector look angelic, a protagonist who is complicated and conflicted and a mythology that reaches back through the centuries to the beginning of time! Have a wonderful holiday, albeit a working one!
Ok, I’m hooked, must go set up a date with that book. I’ll have plenty of reading time.
Aww, poor Emma! Good luck with the new school. Hopefully she’ll decide she likes it! 🙂
Oh I hope so too, E. In the meantime I’ve received some wonderful suggestions to help ease the transition! Keeping fingers xed
I remember when I changed schools for the first time, and my belly went bang-bang for quite a while, namely a couple of weeks, until I made lots of new friends and discovered their bellies went bang-bang too. So autistics are not alone in being scared by the prospect of change. We are all in there together.
This morning after you left and Alexandra (that is “Cousinalexandra” and I were left alone, my belly went bang-bang. Where all the running feet, the calling upstairs and downstairs “where are you?’ “do you want to ride the 4-wheeler?”
I miss all of it. I miss all four of you. The silence is deafening. The coffee tastes terrible, belly is definitely going bang-bang.
Granma is sad. Granma’s going to cry. Granma can’t snap her fingers!
Oh Mom! We miss you too and we’ve only gotten to Denver! You were wonderful, as always. Sending you all our love. So glad Cousin Alexandra is there to help you drink that bad coffee and help soothe your belly. XXX
Reblogged this on wincharles.
Awe….Granma Paula that was the sweetest message!!!! I hope for all of you that she enjoys it and comes to like the new school. Hope you had a safe trip back to NYC! Blessings~
We are halfway home, Becky, so far so good!
Ariane, can I ask some advice?
What would you do if you were in my situation? If Emma wasn’t in the position she is, if she were like Marisa. Would you still have hope? Where would you find it? Because I am completely at the bottom of my meter. I don’t know if I’m strong enough to do this the rest of our lives. She obviously isn’t going to get better.
I read the links you give me. I do. And then I get a note from school telling me how aggressive she was today, and she has an accident the moment she gets home. Or has a meltdown in the evening without knowing why.
Nine years and counting, Ariane, and I am going crazy. What’s worse, this is all affecting my “normal” kid, as well. I’m terrified at the thought of her not being able to live with us one day. I’m even more scared of doing it myself the rest of our lives.
I’ve even considered just leaving – splitting up, giving full custody of both kids to my husband, and moving somewhere that no one knows me.
Please tell me there is hope, somewhere to be found. What would you do?
Ok, the second I posted this comment, I regretted it. You write a blog, not run an advice column.
Do you have any more links, like the Carly ones I can look at? Where they didn’t start communicating until they were teenagers? I think that might help. TIA.
Angie- If you have not yet read Peyton’s book, PLEASE PLEASE do!!!
First off, I don’t know how I’d feel if Em were nonverbal. I hope I’d feel the same as I do now, but I can’t KNOW that. You know? I mean it’s impossible to know how I’d feel or how the process I’ve gone through would have changed were Emma different than she is. So that’s the honest answer. Having said that, I can tell you what I hope I’d be doing were she nonverbal, frustrated, unable to communicate, unable to be understood, I hope I would be doing what I’m doing now. Which is reading, constantly reading and reaching out to Autistics, both verbal AND nonverbal. There are so many, Angie that are communicating, blogging, talking.
I just got home and have been traveling all day, so let me rest and I’ll write more about this tomorrow.
One thing I can tell you absolutely, try (and it’s really, really hard) to take this one day at a time. Try to stop yourself from thinking – How am I going to do this for the next year, two years, decade, etc. And you do not KNOW that Marisa won’t improve. You don’t, Angie. You think you do, but you cannot know what will happen in the next few days, let alone how she’ll progress in the next decade. I know it’s really difficult, and as you know from reading this blog, I veer off into the future too, with fear and worry. But try. Future thinking takes us nowhere good.
Lastly (for tonight) remember, you are not alone. I found a support group that was a lifeline for many years. It didn’t change anything, but it made me at least feel I wasn’t alone and there were so many other parents feeling the same thoughts as I was. Try to find some kind of regular support group to go to.
There’s always hope, Angie. Always. As long as we are alive there’s hope for you and for your beautiful girl. I promise I’ll send more links and book titles tomorrow.
i know this might sound corny, but i had to find the Hope etc in myself first! Starting with adjusting my perception of what is normal, getting better and things like that.
I hope somewhere (in the most unlikely place usually) you find a person or two who really clicks with your child. . .one of Ours is Zack’s OT. We only get to see her 2 or 3 times a year now, but Just knowing she is there helps, and she comes up with amazing simple, goes a long way!
One of the things i have had to do living in the middle of Africa, is do home versions of OT, speech therapy etc. It has been hard at times, but I’ve found one of the benefits to be that it has given me a better view of how Zack may view the world – and .read. . Read. . . Read! Good luck, you are not alone in this 🙂
I don’t know if you’ll see this comment, but I’m an adult on the autism spectrum, and I am also a teacher. I’m certified in Severe Disabilies K-12, and I currently teach high school to students with complex communication challenges.
I’d be happy to talk to you about my own experiences or the amazing things my students are learning and that some of my graduates have gone on to do.
I just want to thank you for reaching out here and I hope Angie will see this. But in the meantime, I would LOVE to hear about your experiences and am so happy you’ve commented. I’m going to tweet you now. Thanks again. 😀
Hi Ariane- It’s been a very long time since the last time I was in contact and since then I often thought of Emma. It was such a pleasant surprise to come across this blog, to know how well she is doing and the amazing strength in you and your family. I couldn’t believe how big she has gotten, in my mind she is still a very little girl!
Good luck with the new school!
Hi Peling! What a wonderful surprise!! Emma will be thrilled. She mentioned you the other week. Her memory is so good, she remembers anyone who was meaningful to her. I hope you’re well. Would love to catch up and see you if you’re in the city.
This whole week I have been a huge ball of anxiety, knowing school is right around the corner. I have filled our days with zoo and beach trips, and watched my girl be the happiest I have seen her. It makes it all the more worse knowing I will be sending her back to a place she loathes a week from now…and that even though she has great teachers and aides and the like, school is still not a place of comfort for her. I know what she feels is much deeper and worse, and it pains me more than I can put into words. Fingers crossed there is a smooth transition for everyone…..
Oh Jen, I so relate to the feelings you describe! Ugh..