Archive for November 2011
– Mark Twain
I was torn between writing about Hope and Hyperactivity for my H post, but hope won. Hope always wins. It beats despair and despondency. It makes us rethink yesterday, enjoy today, and look forward to tomorrow.
I wasn’t always a hopeful person though. In fact, the fast majority of my life I was a pessimist. I don’t know if this is unusual, but I became optimistic and hopeful as a person only after the diagnosis. A defining moment in my own experience as an autism mother was the day I felt hope return, and once it did, I held on tight and decided I wouldn’t let it go again. If this was to be our journey, hope was going to be our fuel.
Yet you can’t make hope. You can’t will yourself to feel hopeful. At the times you most need it, it is the most elusive. So what do you do then?
You find a hope tree that is in blossom. If you’re in the depths of winter, find someone in spring. It may be your partner, or a relative, or a stranger from the interwebs radiating joy in today and belief in tomorrow. It may be a young child who doesn’t even know what hope is, but who lives as an eternal spring, with all the bounce included. Find it, and feast your eyes, inhale the scent, feel the sturdiness of the trunk.
It isn’t a hope based on goals and milestones. I don’t look ahead to a “cure” or “recovery”- if I did, I think I’d still feel the chill of winter, with my hope always out of reach. But I can’t live so close to my own hope tree without smelling the fragrance of the blossom, and feeling the sun beating down on us.
Hope really is like blossom, it buds and it flourishes. No sooner are you enjoying another’s bloom, than you feel it germinating yourself. Then all you need to do is put out your blossoms for everybody else to see. I’d love to picture our own forest in bloom. Every one of us experiencing the magical new beginning of the season.
That is what Hope does for me. It chases away the drab, and lets me see life in glorious technicolour, like the incredible blossoms of the Jacaranda trees here in South Africa. Almost dazzling in their brightness, yet real enough to touch.
But if you really don’t feel it growing inside of you, try this quote instead. You may find that you’re already halfway there.
“Scared and sacred are spelled with the same letters. Awful proceeds from the same root word as awesome. Terrify and terrific. Every negative experience holds the seed of transformation.”
– Alan Cohen
This post is part of my A-Z series. You can read the rest here.
Dear God (I get that you go by different names to different people, but allow me the familiarity, or at least forgive me for it?),
It is Thanksgiving, so I want to offer up some thanks, as well as ask for a few things. I think that is how this prayer thing goes. It has been a long time….but then, you know that already, right? Yeah you do.
Thank you for making me a mama. I did think it was a little before I was ready, but in your omniscience (see, we have that in common!) you knew that the exhaustion I feel wouldn’t be any less as I got older.
Thank you for my girl. Thank you for making her so…Pudding. I’ve never met anyone so much like themself in my life. I know you know what I mean by that. There is no artifice, no pretense, just who she is. But better than that- she likes who she is, at least at almost five she does. Can you keep it that way when she is 15 and 50 too? Can you make sure no one ever puts a cloud over her sunshine? I know there has to be rain, but let her shine through it. Let her see the rainbows,
hell let her make them.
Thank you for giving her language. For being able to say no when she really means it. It is a gift, I know, and I hope it is one she’ll always make use of. I know we got very lucky when it comes to communication, so I don’t mind if it is a little jumbled right now. I like that you made it so she becomes clearer when she is feeling very adamant about something (like requesting key lime pie), so I know that when I’m not around she’ll be able to put her point across. Now God, could you just make sure everyone listens to her? Can you make sure I do, at least? I’ll try my best, but you know how we mortals are.
Thank you for those two times she asked why questions. I treasure them. Is she keeping the rest until I have better answers for her?
I very much appreciate it that you made her so loving, and she freely gives me kisses and hugs whenever she feels like it. Now- and this is an awkward ask, God- can you have her do that for other people who love her very much, but not so much that she hugs random people in the street? I know, big ask.
If you can’t do that, can you make it so those other people who love her don’t feel snubbed when she doesn’t feel like showing affection on their terms. Let them know the reasons why, make them more patient, and less hurt. Oh, and if you have any of that patience and hurt-balm going spare, put some aside for me. I could always use more of that. Yeah, I know you know.
Thank you for my boy. Thank you for making him enough like his sister that they have things in common, and different enough that he is his own little man. Thank you for making him like sports. I know his Daddy appreciates that (not to say he wouldn’t have liked him to enjoy musical theatre either, if that comes up further down the line). Thank you for making him impish and cheeky and naughty, and all those other things that both delight and exasperate all of us. You did a good job with him too.
Thank you for my husband too. If Pudding continues to like boys as much as she does now, can you send her one just like him? Not one who looks like him, to be clear, that would just be creepy. But send her someone who’ll stick around through hard times, and take her to places she never imagined. Someone who loves her as she is. If that is what she wants, of course. If she doesn’t, let her know that that is okay too. Oh, and she’ll be at least 25, right? I can already tell I’m going to find it hard to let my babies go. You-willing, I’ll do it when I have to, when they’re ready.
Thank you for special interests, for all of them, for every one of us. In your infinite wisdom, can you please make sure Pudding never likes those Bratz dolls, or anything similar? Oh, and that goes for Cubby too. If he continues to like sports the way he does, can you make me a little more interested? Autism mother I can be, or at least try to be, a soccer mom type is just not me. Well, you made me this way, I suppose.
Can you make sure his pretty face never gets hurt? And Pudding’s too. And don’t let her realize how beautiful she is until she is ready for that kind of power. And keep me from ever underestimating her like I did in that last sentence.
This is getting to be more asks than thank yous. Sorry for that, God, is this the way we all are with you? I wonder if it makes you mad and want to torment us?
While we’re talking….peanuts. Peanuts! Thank you God for allowing it to be my son and not my daughter who swallowed those two bites of peanut butter sandwich at school this week. Thank you for making him okay, thank you so much. But peanuts? What is with that?! A very allergic child, with an impulsive nature and difficulty communicating….I don’t know the mysterious ways in which you’re moving there. I suppose I could use my ask to just keep her safe from anaphylaxis, but can’t you just uncreate (I know, not a word, but you could make it so) peanuts? Sure, they’re delicious (heavenly, you might say) in chocolate, but is it worth all that risk? I say it is not.
Thank you for our life as it is. It isn’t the life I thought it would be, but again, you did well. Better than I would have, that is for sure. If it isn’t too greedy, God, can you make life a little better for those who are struggling? I know, we have to do our bit down here, but sometimes it is hard to understand how things have to be so difficult for so many. I suppose I’m not as omniscient as I thought I was. But you knew that. I’ll tell Spectrummy Daddy though, he’ll be pleased to hear it.
One last thing God: if you can’t make these things happen, and you can’t make me understand why, can you do one thing? Can you make it so I never, ever die. Or at least, I die a minute after I’m no longer needed. I’d be okay with you sending me down there if you could just do that for me.
Thank you. Thank you for, well, everything.
…you have days like this.
If you haven’t been following the hashtag on twitter #youmightbeanautismparentif you’re missing out. While the following events were taking place, I added a few tweets myself. And then I found it very cathartic, and just couldn’t seem to stop!
#youmightbeanautismparentif you style your hair according to how it feels, not looks. #youmightbeanautismparentif your child doesn’t just march to the beat of their own drum, they dance to their own symphony. #youmightbeanautismparentif you tell people you have “one of each” and you’re referring to a seeker and an avoider, not their sexes. #youmightbeanautismparentif you know just how much work goes into play. #youmightbeanautismparentif you sleep less now than when you had a newborn. #youmightbeanautismparentif you have swings inside *and* outside your home. #youmightbeanautismparentif you’ve learned a whole new language, and come up with your own translations. #youmightbeanautismparentif your child has the most beautiful eyes you’ve ever seen, and you *still* think eye contact is overrated. #youmightbeanautismparentif you wonder what is wrong with someone, then realize they’re neurotypical, and can’t help it. #youmightbeanautismparentif you never say “piece of cake” unless you’ve got a slice to give a certain someone. #youmightbeanautismparentif you refuse to let anyone underestimate your kid…or you for that matter! #youmightbeanautismparentif you can never return clothes that don’t fit, because you’ve already cut the tags out of them. #youmightbeanautismparentif your child is never sick, but has seen more specialists in two years than most people do in a lifetime. #youmightbeanautismparentif you don’t know if your kid got it from you, or you got it from them, but you both get flappy when you’re happy. #youmightbeanautismparentif you have tried (and failed) to get theraputty out of your carpet. #youmightbeanautismparentif you have gone back to a doctor to show them why they shouldn’t dismiss a parent’s concerns. #youmightbeanautismparentif you drove across 4 states to go to the dentist who “gets it” and it was worth it. #youmightbeanautismparentif you know that behavior is communication- and that goes for you as well as your child! #youmightbeanautismparentif you know the squeaky wheel gets the grease, but you won’t rest until all the cars get the oil they need. #youmightbeanautismparentif your kid wears gloves in the summer and shorts in the winter. And you wear kid gloves all the time. #youmightbeanautismparentif you think it should have been called Sit ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin… #youmightbeanautismparentif your heart sinks when a bathroom has hand dryers instead of paper towels. And you so environmentally-friendly. #youmightbeanautismparentif toe-walking means your child has better calves than you do. #youmightbeanautismparentif your talk of vibration and arousal levels doesn’t mean what your hubby thinks. #youmightbeanautismparentif your child can read, but has never caught a ball. #youmightbeanautismparentif your kids congratulate themselves for “good talking.” #youmightbeanautismparentif you’ve watched your kid dance in concentric circles and tried to find a bee to explain what it means. #youmightbeanautismparentif you are lousy at science, but can hold your own in neurology, psychology, psychiatry… #youmightbeanautismparentif there is a loud noise and you instinctively cup a child’s ears. #youmightbeanautismparentif you haven’t used the bathroom alone in years. #youmightbeanautismparentif People who’ve never met your kids tell you how amazing they are. #youmightbeanautismparentif the first thing you’ll do after you win the lottery is take your kid to a Swarovski shop and let her loose. #youmightbeanautismparentif you don’t need your GPS when your kids are in the car. #youmightbeanautismparentif you know *exactly* what Sheldon from @thebigbangtheory was like as a toddler.
#youmightbeanautismparentif your husband told you you were addicted to this hashtag, and you responded, “no, I’m perseverating.” #youmightbeanautismparentif the best teacher you’ve ever had is only four years old. #youmightbeanautismparentif you got bored of your own post-diagnosis pity party and decided to celebrate the wonder of your child instead. #youmightbeanautismparentif you know that “core deficits” isn’t referring to your doughy waistline. #youmightbeanautismparentif you know that joint attention has nothing to do with preventing arthritis. #youmightbeanautismparentif you’ve returned “Nothing is wrong with my child, what is wrong with YOU?” to a stranger. #youmightbeanautismparentif though your child doesn’t like to be touched, she touches people across the globe. #youmightbeanautismparentif you quite literally stop and smell the roses, because your kid’s sense of smell began to function. #youmightbeanautismparentif you’re used to more questions than answers. #youmightbeanautismparentif you have made your own crash pad out of a duvet cover and pillows…or read this and went straight to make one! #youmightbeanautismparentif you realize with a certain irony that you play more now than when you were a child. #youmightbeanautismparentif you aren’t offended if it seems somebody is ignoring you, but are frequently pained by ignorance. #youmightbeanautismparentif you have tried (and failed) to get theraputty out of your carpet. #youmightbeanautismparentif you have gone back to a doctor to show them why they shouldn’t dismiss a parent’s concerns. #youmightbeanautismparentif you drove across 4 states to go to the dentist who “gets it” and it was worth it. #youmightbeanautismparentif you know that behavior is communication- and that goes for you as well as your child! #youmightbeanautismparentif you know the squeaky wheel gets the grease, but you won’t rest until all the cars get the oil they need. #youmightbeanautismparentif your kid wears gloves in the summer and shorts in the winter. And you wear kid gloves all the time. #youmightbeanautismparentif you think it should have been called Sit ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin… #youmightbeanautismparentif your heart sinks when a bathroom has hand dryers instead of paper towels. And you so environmentally-friendly. #youmightbeanautismparentif you know the journey is more important than the destination. #youmightbeanautismparentif you know that DSM IV isn’t a date in roman numerals. #youmightbeanautismparentif toe-walking means your child has better calves than you do.
Pudding needed an EEG. I called ahead to the hospital to get a full description of what will happen during the procedure so we can social story it. I call again to emphasize she has autism and will need accommodations. They tell me they have lots of experience. Not with Pudding, I think. It will only take half an hour, but you should medicate her, just in case.
Yesterday I dropped Pudding at school, then took Cubby for OT. In a rare moment of convenience, Pudding’s doctor is located in the same place, and I needed to collect her prescriptions. As I went to open the envelope, the receptionist told me firmly, “they’re both in there” and instead of checking, I just put the envelope in my bag. I would come to regret that, as we went straight from OT to Cubby’s school concert, and then directly to the pharmacy.
I opened the envelope to find two identical prescriptions for her ADHD medication, not the sedative we needed. I called the receptionist back, and asked her to fax another prescription directly to the pharmacist. I had to have that medicine by 9.30 the next morning at the latest.
After collecting Pudding from school, we went straight back to the pharmacy at the mall. No complaints here- the kids love the mall. The pharmacist tells me they don’t stock this medication, and I’d need to go to a hospital pharmacy. Oh, do my kids not like leaving somewhere before they’re ready, but I wanted to get that prescription.
The hospital pharmacy does have the medicine, but they won’t give it to me because I only have a fax, and not the original prescription, and we wouldn’t want to violate section 6 of the something-or-other, now would we? Throw in another couple of meltdowns, because they weren’t ready to leave there either.
I drop the kids off with Ms. Leia, and speed over to the doctor for the original. Which they can’t find. Then they do, and we’re all set….but it is too late to go back to the hospital. I’ll have to do it in the morning.
After a couple of hours of unsuccessfully trying to get Pudding to sleep, I take over from Spectrummy Daddy. She finally falls asleep in our bed at 11, only to rise more hyperactive than ever just before 5. I wake up more tired than I was going to bed, with a cold to boot. Still, at least I got all my bad luck out of the way the day before, right?
After dropping off Cubby and Daddy, Pudding and I return to the hospital and obtain the magic elixir. I dutifully wait until the instructed time to give it to her, and watch her promptly spit it back out. Thank goodness we had a spare second dose, and I try the never-fail approach of bribery to get her to swallow. It fails. I have mere drops left, and I decide to take it with us. She must have swallowed some at least, because she looks drowsy in the car.
We arrive, only to be given forms to complete. I can’t believe there is more paperwork, didn’t I call twice to explain my daughter has autism? Giving me forms means I can’t take care of my kid in the waiting room. Do you think I only call because I like sharing intimate details about my family? People, I have a blog for that!
After twenty minutes of purgatory- which is getting evil looks from the rest of the waiting room as Pudding shouts about how quiet she is being- the technician asks me where my referral letter was? My what? This is the first I’ve heard of such a thing, and it can’t be necessary because I was at the doctor twice yesterday and nobody mentioned it. They call the receptionist, who I would call by something else were this not such a family-friendly blog, who tells them she’d given it to me in the envelope. Umm, no.
I think at this point, the staff tire of what we tired of twenty minutes previously (being in the waiting room) and they take us in. Pudding, though groggy, is bouncing off the walls, and they decide she needs more medicine. I explain about the whole spitting out thing, and they decide the strong-arm approach would be most beneficial to a young, scared, autistic child. By the time they’ve pinned her down, held her nose, and squirted in the medicine, I’m crying as much as Pudding, as she begs me to help her. She is a mess, unsurprisingly. I am too.
They wait for the medicine to kick in. It doesn’t. We call the mean receptionist again to get another prescription, but we never hear anything back. I keep my terrified cabin-feverish girl in that tiny room of sensory hell as they alternately try to stick wires to her head, then let her sleep. Suffice to say, neither happens. I want to leave just as much as my girl, but I know we’ll never get her back for a second try.
After three and a half hours they send in another technician, aptly named Angel. She gets the wires and bandages on, and between us we get through an EEG. Why, oh why, did they not send her in the first place? Now it doesn’t matter. We’re done, and we don’t have to go through it again. In one week we’ll know if seizure activity is the cause of Pudding’s sleep problems. I’m hopeful that epilepsy is just something we can rule out. I’m hopeful.
You might be an autism parent if you have a day like this, and still remain hopeful.
This post was originally published >here< at Hopeful Parents.
Some days, it is really hard to write. There are thoughts swirling around my head that I can’t seem to encourage down to my typing fingers. Is this what it is for Pudding? Having thoughts that you can’t express?
I think perhaps I have writer’s block. So much is happening, but I can’t write at all. It plays over and over in mind. I lack imagination.
After a year of blogging, the same themes crop up. I type a post, then delete it entirely. I’ve said it before; there is nothing new to put down. But there is comfort in the familiar. Those little captured moments that are nothing, but mean everything.
Today we went out for breakfast, and Pudding finished first. Unprompted she told the waitress she had finished and to “take away the plate please.” That has never happened before, yet it has happened all along.
Old bits of new. I’ve written it before. Singing the same tune. My version of echolalia.
I’m busy now, wearing a few different hats. Feeling like I can’t dedicate to anything all that I should because there are other pressing deadlines. I flit from one thing to another, never quite doing anything. My play is not purposeful. I’m hyperactive.
At social gatherings, my mind is elsewhere. I should be making small talk, but remain silent. It gets too fast-paced for me and I want to shut out the world. Aloof. Uncommunicative.
When I do snap out of my reverie. When I do enter into a conversation, how long before I manage to bring it around to my topic of interest? Not long. I’m perseverating.
I’ve spent all this time trying to understand her, completely missing the fact that she is just like me. I find so many similarities between Pudding and the little girl I used to be. Not so different after all.
She is here at my side as I type, so I hurry to finish. Just as I find myself in so many ways entering her world, she wants to enter mine. She is engaging me. So I’ll leave this post unfinished, because everything that I’ve ever written about is happening right now, and I don’t want to miss any of it.
I ask her what she wants to do. Sing!
So the two of us will leave our respective little worlds, and join together in our off-key harmony.