I wish I had something amazing and profound to say tonight. But I don't.
All I can think about is time.
Bedtime. Dinnertime. Downtime . Lifetime. Longtime. Meantime. Nighttime. Onetime. Overtime. Pastime. Playtime. Sometimes. Summertime. Teatime. Timeless. Timeline. Timeout. Timer. Did you know that if you google the word time, one site said there are 208 words with time in them? What a waste of time, huh? :)
Because it is way past my bedtime now, I am going to play a little word association game with myself... seeing as I can't seem to type a coherent sentence right now and I don't really want to get into what I am feeling today. The first line I will just type things that come to my mind in general when I think of that word. The second line I will type things that come to my mind when I associate 'autism' with that word. Here we go.
Dinnertime - important, noisy, informal, fun, family.
with autism - prompt to say a full sentence when requesting items on the table, give her smaller portions because she always wants 2 helpings and if you stop her after 1 she may start screaming and have a meltdown, watch so she doesn't put too much food in her mouth at one time, if she gets silly and throws her head back while she's eating remove her food because I don't want her to choke, it's not a game.
Downtime - everyone needs it, how do you find time to get it? recharge your battery. As a mom, who has time for downtime?
with autism - she works so hard, she is always on, she needs some downtime just to recharge, but don't let her just sit and stare blankly at the walls, don't let her stim on that cookbook, she's just flipping pages, it's weird, she's not even looking, don't give her too much time, let her wrap up in her blanket, but she needs to engage, let her just be 'autistic' - what the hell does that mean?
Lifetime - precious, love, people, make a difference, live, friends, marriage, babies, grandparents.
with autism - early intervention, IEPs, ESY, ABA, transitions into young adulthood, adults on the spectrum, living with autism, advocacy, supportive employment opportunities, I need to live forever because what will happen to my daughter if I don't?
Longtime- I've had some of my same friends since I was in first grade, that's such a longtime. I've known/dated/been married to my husband for a long time! It seems like such a longtime ago that I had my kids and my life forever changed.
with autism - I don't have a longtime to hit that 'window of opportunity' for language acquisition... It took such a longtime to get any answers and get an autism diagnosis. She has been learning some of the same things for such a longtime. It takes a longtime for her to master a skill. She's going to be 10 next month. I am scared.
Meantime - ok, I can't think of anything for that right now, so in the meantime, let's move on to the next one. :)
Nighttime- me time, me and my husband time, relaxing time, decompression time.
with autism - scared of what the night could bring. She doesn't sleep much, she's up a lot screaming, squealing, or talking. I need to watch her monitor all night. I don't want to let her out of my sight. Not for a minute. What is that smell when I wake up at 2 in the morning? Cleaning up.
:( Heartbreaking. So so sorry Vicki. Crying. Shaking. Thinking. Praying.
Onetime - this one time at band camp... oh, come on, American Reunion is coming out soon! :)
with autism - just one time, just one time I want her to ask me a question. Just one time I want her to tell me what she's thinking. Just one time I want her to tell me where she's hurting. Just one time I want her to tell me what she's feeling. Onetime is all I need.
Overtime - A mom should totally get overtime wages. :)
with autism - a mom should totally get overtime wages. :) and maybe an extra set of hands and eyes, or a whole village to help out.
Pastime - enjoying a wine tasting, browsing in antique stores, playing air hockey, sitting by the water listening to the waves and feeling the sun on my shoulders.
with autism - I don't ever let my guard down. There is always a fear. There is always Vicki. There is always a sliver of doubt that someone can't take care of her like I can. She's so unpredictable. I can't leave her. I don't want to leave her. What pastimes? What hobbies? There is no diversion. Autism is always there, lingering.
Playtime - fun, laughter, glittery, enjoyable
with autism - work. difficult. why does that doctor have to watch me play with my daughter? please don't analyze me. Over the top. Get her to engage. Reciprocity. My turn. Your turn. Yelling. Don't let her just line things up. Make it fun. Make her want to play with you.
Sometimes - I worry that I am not doing enough, that I didn't spend enough time with Joey, that I didn't spend enough time with Ally, that I didn't spend enough time with Vicki, that I didn't spend enough time with my husband.
with autism - Sometimes I just want to say 'I hate you autism'. Sometimes I get mad. Sometimes I cry. Sometimes I think it's so unfair the hands people are dealt in life.
Summertime - go to the pool, play tennis, ride a bike, go to the playground, enjoy a summer camp.
with autism - ESY, therapy, can't do a 'regular' summer camp. Can't take all 3 kids to do any of the above activities without someone else there to help. Can't just 'be a kid'. Always working.
Teatime - Ally and Vicki, princess tea party, adorable.
with autism - Ally and Vicki, princess tea party, adorable.
Timeless - love and devotion.
with autism -love and devotion.
I think I am really out of time now... I can't seem to keep my eyes open anymore. :) Thank you. Thank you for taking time to read this. I know it didn't say much. But, in an odd way, after doing this little exercise, it was really an eye opener for me. (Is that an oxymoron? Since I can't keep my eyes open? Or maybe that's not what it's called. It's kinda funny though anyway, right?) Today was rough. Autism affects the whole family in so many ways, ways you never plan for, in ways you don't have time for. I never feel like there is enough time. Enough time to 'get it all done' . Enough time to spend 'quality' time with everyone who needs it or even for those who don't actively seek it. Enough time to really be present in the moment. You know what I really wanted to do tonight? Just curl up in my bed with my teddy bear (no, that's not a pet name for my husband, I actually sleep with a teddy bear too... ) and fall asleep after reading 2 pages of a good book. But I didn't. Instead I went to Ally's room and we read some books and talked. Then I went to Vicki's room and she told me slowly and deliberately about her day from her visual schedule. Then I played Tribond with Joey and lost only to make him feel better, wink, wink. Then I watched the New Girl with my husband. Then I came in here to write my blog tonight. Was any of that time wasted tonight? Absolutely not. Will each one of them remember me spending time with them? Probably not. But that's ok.
I love the Little River Band, and this is from one of my favorite songs...
Look around you, look up here
Take time to make time
Make time to be there
And I love you best
You're not like the rest
You're there when I need you
You're there when I need
I'm gonna need you
I know I made time to be there tonight. And I know you're there when I need you. xoxo Goodnight! It's about time!!! :)
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