Saturday, January 30, 2010
When Isn't Therapy?
It seems his class must be taking leaps, though, and they started off far ahead to begin with.
Most days I am able to happily revel in his lovely steps -- his increased communication, his greater inquisitiveness, his sounding out of some short words, his shoe tying, his ability to (mostly) dress himself, his willingness to spend extra time with me trying to explore basic math concepts like "more and less."
Friday, though, the note came home from kindergarten officially warning us he is not making adequate progress in math or sight word recognition. This is not our first such note -- in November it only listed math. At the time, my response went something like, "If his biggest problem in school is math, I consider it good news." Guess who overhead me? The deities. And they were not amused.
The Roo has long days because he has two working parents. In school, he has had much to overcome, so he has a dedicated teacher, a hardworking aide, a (weird) speech teacher, a patient OT, and a super inclusion specialist all trying to help him overcome his challenges. After dismissal, he goes to aftercare with an aide who makes sure he does his homework and that he participates at least a little in the group games and physical activities. At 4:30, I pick him up and we head home. When we get there at 5:15, our behaviorist is waiting for us to start two hours of ABA. During ABA every weeknight, we have dinner, unpack and repack backpacks, and focus on behavioral goals like turn taking, maintaining a conversation, and self care skills. At 7:30 we have time for a few stories, toothbrushing, and bed.
That leaves weekends for "extra practice." We sneak in math and reading into every day activities as much as possible, counting everything we can, sounding out signs, all that stuff. But on weekends we also need to work on his low muscle tone (today he started Kung Fu) and his cooperative play (today we went to the park). When the kids want to see "videos" on my computer, I act like it's a huge gift I give them when I play Schoolhouse Rock math videos from Youtube. When I read them stories, I let them select from my pile of library books pertaining to the kindergarten curriculum.
Hey, I'm a teacher. I know some of the advice I ought to give myself. I know that kids develop at their own pace, that autism is a developmental disorder, that it won't help to make Roo resent learning by "teaching" him at home all the time, that you can't compare kids, that he has an IEP in place so the report card should freak me out less, that right now his socialization and behavior goals matter even more than the academics, that his vision problems have had a long term impact on his visual spatial reasoning and will likely be improved through his new glasses, that progress takes time, that he's just five years old and this is a marathon not a sprint. I know that we have a great team, and a wonderful boy. I know things could be worse, and that the report card doesn't convey a very full picture of our boy's intelligence. I know that he has ADHD on top of autism, and clearly he has slow processing issues, making him hard to assess. And I know I should take a deep breath.
What I don't know, and what I want to know, is:
When ISN'T therapy?
And if we're working this hard and so far behind, how do we hold on to hope of ever catching up on anything?
Whatever happened to "hanging out?"
Is it better to repeat kindergarten or first grade?
Will things ever get easier? If so, when?
Is he in the right school?
Is there a right school?
How can we even tell which things work, and which things don't? I mean, how do we know, when things go well, if we did something right, or he would have just made that development in time on his own?
All of this... all of it... makes me weary and a little resentful. Not of Roo -- I'm so proud of him. Sometimes I resent how hard society makes it to deal with autism, how little inclusivity I can feel in some ways.
You know what? Forget all that! I don't want to think about anything in this post except for my first sentence. Remember where I began? You don't have to scroll back there, because I am going to repeat myself for emphasis:
My boy has been taking some lovely steps forward.
However you add it up or spell it, that is what counts.
My boy has been taking some lovely steps forward.
Friday, January 29, 2010
Notable and Quotable Thirteen
Me: It's Go Fish.
Rooster: Yeah, I want to play that Goldfish game, but I don't know how.
Me: Why don't you ask P (new ABA guy) how to play.
Rooster: PLAY GOLDFISH, P.
Me: No, son. You say, "Will you please teach me to play Go Fish?"
Rooster: Will you please teacher mommy to play Go Fish?
Peaches: When did Cleopatra die?
Me: A long time ago.
Me: Why did she die, or why was it a long time ago?
Peaches: Why she died?
Me: Well, she lived a long, long, long time ago, so she can't be alive today.
Peaches: When she died?
Me: Hundreds and hundreds of years ago.
My husband: Thousands!
Peaches: In the old days?
Me: Yes, in the very, very old days.
Peaches: When they used to have telephone booths?
Friday, January 22, 2010
I feel like I am losing my mind.
Forget 1,000 paper cuts. I feel like I've been raked by a cheese grater.
My harder kid seems a tick easier, my easier kid seems to have taken a dive off the upper edge of the Grand Canyon.
Yeah, I know, read me the news about Haiti and shut me up already. I hear ya, I hear ya absolutely, friend. But.
Will someone please do something about Peaches? Or with her? Or to her?
I mean REALLY. REALLY.
Thursday, January 21, 2010
But it IS real. The fear, I mean. And the jinxes.
So, how do I go about telling you the good stuff?
The only thing I can think to improve my odds is to first couch it in a steaming pile of complaints. Allow me to dump this:
- When I put sunflower seed butter on Roo's toast tonight instead of Earth Balance, he threw a football at my head. At close range.
- I am pretty sure I could have paid for Julia's red carpet dress with what I've spent so far on Good Nights.
- My car is on a recall list for a possible defect that terrifies me too much to describe to you in a post about jinxes. The dealership says it can't help me with the fix for month.
- My son's teachers want him to learn to snap his own pants, and we are trying, but it doesn't help that he can't see the snap over his melon belly. No store I can find has sizes that fit him. Size 5husky are too tight, size 6husky are too long, and it's too cold for shorts.
- Peaches has hit a phase of, um, okay, disequilibrium. But incessent whining and shrill screaming and absurd, obsessive demands make me want to describe it as b*tchiness. Sorry, I should have more patience.
- I tried nine times to find out about Roo's day. Every answer one of the various and detailed answers he gave came from his Peter Pan CD.
- Tomorrow I get to take 60 kindergarten students on a full day field trip to an art museum renowned not so much for its child-friendly art but for its gardens --- during the worst series of endless storms to have hit these parts in some time. I am listening to hail fall as I write this. The museum officials do not allow you to eat inside, and they do not have shelter where you can eat outside, and there are NOT enough bathrooms to suit me. This is how I spend my "vacation" days.
Okay, on the off chance anyone is still with me, I posit this theory, owning that it may be entirely wrong, and also that the deities might be about to smite me:
The Rooster seems like he is emerging. We spent the last year giving him some medication we believed would help him regulate his aggression, and when we learned we had to wean him off it I felt terrified, only to find out that with every level we reduce on his medication, he appears more peaceful, present, communicative, and happy. Now I find myself looking forward to April when he'll be completely chemical free.
I CANNOT BELIEVE I JUST TOLD YOU THAT. AND ON A NIGHT WHERE WE'VE HAD THUNDER AND LIGHTNING.
Climbing UNDER my bed now...
Please do a purification ritual on my behalf, send our family any of your spare good karma, and wrap the rooster in a protective force field. Knock on something, burn some incense, and call me mean names. Anything, anything, but keep away the jinxy deities.
Wednesday, January 20, 2010
Slated for Renovation
See, we have a fireplace that is just fine, now. It isn't fancy or luxurious or impressive or remarkable. My glee about the fireplace might seem disproportionate; I know J likes the fireplace, but doesn't feel the same degree of exuberance about the recent remodel of its facade that I do. Almost every time I look at it, notice its simple and unobtrusive way of fitting in with our basic little home, I find myself sighing with satisfaction. (Okay, and maybe fantasizing just a wee bit about painting over that stark bright white paint, but who wants to get all picky...) I'm glad I finally found a local handyman, got J to help mock up an easy design in Photoshop, selected soothing natural materials, and ponied up the necessary cash, because it makes walking through my front door each day a little easier. I like overcoming the uglies.
J likes the fireplace fine, says he's glad we managed to make the project finally happen with minimal intrusion into our busy lives, but if he can't relate to my level of gratification, that's because it didn't gnaw on his nerves every day of the last two and a half years. J doesn't sweat stuff like that, he finds his peace more readily. I envy it, I try to emulate it but can't. Our fireplace, when bought our house, stood out for its mistakes and made me itch with how badly I wanted to fix it. It was not hideous, just run of the mill ugly, and I wanted to improve it as fast as I possibly could.
Two and half years was as fast as I possibly could. And the knowledge that it had the potential to look so much better but that I didn't have the capacity to make it happen with so much more consequential ugliness all around me --- well, that gave me mental eczema.
I find myself struggling right now with our daily routines, the essential structure of our life, the way I did with the ugly fireplace, pre-facelift. Now, I know my metaphors get messy, but let me be clear: I am not comparing our fireplace to autism! And I CERTAINLY am not equating it with our children. I am talking about the grind... the shape forced on our family unit by the constraints of time and the shortage of resources.
Our weeks look run-of-the-mill ugly to me. They have for too long. While I know that they are not hideous weeks, not nearly as grotesque as they could be, as they have been at some past times, while they aren't something to turn away from in horror for their gruesomeness, the fact that I haven't found the wherewithal to make them over so they can more simply blend in with our little life irritates me a little worse each day.
Our weeks need a makeover.
Not What We Bargained For
J pushed a cart with one child, I pushed a cart with one child, but we bore very different burdens. This time J drew the short straw, but I can't say being 10 feet away made me much happier.
You should have seen how the other shoppers steered clear of us, how the cashiers avoided making eye contact fervently hoping we would choose another aisle.
Had we not needed supplies, I probably would have turned tail and fled empty handed.
There was shrieking, there was whining. There was wailing, there was sobbing. And the flailing? Oh, the flailing.
There were attempts at the lessons we've gleaned from ABA.
There was, "Why don't you take a deep breath?"
There was, "I have an idea...Do you need a hug?"
But no, the downward melting trajectory could not be averted.
And yet, since those calming words came from the Rooster, making his best effort to soothe his ballistic baby sister, it felt like victory amidst the misery.
When I got teary eyed, I wasn't really sad.
My boy has learned more than we realized.
My boy has learned, "Sometimes it helps if you take a nap. Do you want to take a nap?"
My boy has learned, "Let's dry your tears now, it's okay."
My boy has learned, "I love you, sister. You can play with my toy."
Reread this post again, I tell you. All those good words came from my Rooster.
Did you see that one coming? I say, read it again!
Monday, January 18, 2010
Did You Know?
So, after Grandma asked what Peaches was doing at home on a Monday, Peaches replied, "Weeellllll... Did you know, Martin Luther King had a dream? And his real name is Martin Luther King, JUNIOR. And he was friends with Rosa Parks. He didn't like about the water fountains for the light people and the water fountains for the dark people, he wanted everyone to SHARE and be FAIR."
I waited through the pause on my end while, no doubt, my mother tried to ask the right questions to keep Peaches talking, see how far she might be able to go on this topic that clearly so excited her.
"Weeeellll..." Peaches repeated, "A man got a gun and killed him because he didn't like Martin Luther King, JUNIOR talking about sharing. And he didn't like that dream that Martin had. And my mom says that Martin Luther King and Obama don't look that much alike, but I thought so, but they both help people in our country, but Obama lives in a really, really, REALLY big house that is WHITE. And I want to go see it. But my mommy says I can't go see Obama and I don't like that because I want to go."
Happy MLK Day to you.
Sunday, January 17, 2010
The Voice of Experience
My friend is brave and strong and beautiful, and just four months after this painful crisis, already she has picked herself up and started fresh with grace that I deeply admire. I know she had moments of despair along the way, and that she still cycles through many emotions, but she simply refuses to linger in heartbreak. When I admired this about her, she told me that I had helped her. Me? What did I do? I haven't called enough and this is the first time I've seen her; I barely have enough coping skills to keep myself afloat most days, as you well know! So it surprises and deeply gratifies me that I could be of any help to anyone else.
My friend she said that when she first told me a couple of months ago about the split, I didn't do what so many others had done. I didn't say, "This will make you stronger." Instead, I said, with the voice of some experience in the breakup department, "Friend, this is awful right now, but I want you to know that later new opportunities will arise in your life that would not be there had you not gone through this right now. They won't erase the bad, but they will bring new good things, surprises that you will cherish, and that you otherwise would never have experienced." Then my strong friend told me that she really has no desire to get any stronger, thank you very much, so sometimes she feels angry at first when people tell her about all that strength she'll gain from her divorce. (She knows that they mean well.) But, she said, what I had told her about new opportunities in her life ahead gave her something she could "latch on to," and that gave her a sense of hope and purpose. Right now she's wisely focusing on her new and successful career, taking some time to travel and adventure, and being good to herself. We both look forward to getting together in the near future when we can celebrate some of the unexpected goodness sure to come her way.
I can't adequately describe how much it means to me that what I told my friend played any small part in helping her. The beautiful thing, though, is that she listened, that she heard it, that she had the strength to use it in the way that she needed.
I believe in what I told my friend. It took me years to figure it out after my breakup, although probably people tried to tell me earlier and I just couldn't hear them. And almost two years into Rooster's autism diagnosis, I still can't always carry the lesson over to realize that our family's journey, too, brings its own opportunities and joys if I am open to them.
I want to be more like my young friend. I want to be a better listener. I want to grab hope and purpose whenever it is offered -- even from my own mouth.
Saturday, January 16, 2010
Before We Can Shoulder No More
And this is not going to be the story of him crying, either.
But the look in his eyes, which he held open so high that his scalp moved? I held my breath. In the fraction of a second before he spoke, I thought of 20 possible awful things he might say to me.
"HONEY," he whispered.
"He's so big now that soon I won't be able to carry him on my shoulders anymore..." he paused, my pulse returned to normal. He raked his hand through his hair. "I just never thought about that before. He's my little boy. I should always be able to grab him and toss him up on my shoulders and head off on an adventure. You know? It won't be much longer and I won't be able to get him up there. He's so big now."
I confess that I am GUILTY of often forgetting to live in the now, and that I waste time wishing for a fast forward button, searching for the someday when my kids are able to do this or that thing, don't need so much such and such, can be trusted with x or y. I catch myself, at least, and try to be more present. J doesn't do that as much as I do. If anything, he looks back wistfully. "Remember when she used to say cubuz instead of because? Remember how when he was a baby his little arms barely reached over his head??" I love this, because in those days, which J remembers so fondly, I was probably wishing for...well, the stuff that they can do right now, that I fail to appreciate. When she said cubuz, I was yearning to be rid of diapers. When his arms barely reached above his head, I fantasized about the sleep that melatonin now provides with some regularity. But most of the time, J just appreciates what we HAVE. He gently swipes the chip off my shoulder, saying, "Listen to them playing together. They are doing better, can you hear it?" He points, "Look at what they built out of Legos. Isn't that cool?"
One of the countless things I cherish about J is the way he keeps me present.
Thursday, January 14, 2010
Now, talented girls who act, write, dance, swim, excel in visual arts and earn top grades at competitive schools, while having lots of friends, don't have tons of free time. You might have noticed that I can go on and on in my blog. And as good as things like Blurb and Lulu have gotten, they haven't evolved yet as far as they probably will. So it takes a while; I practically forgot about the project.
But this week, my friend brought me... (drum roll please...) Rooster Calls, year one, the book.
On my bedside table, I have a HEFTY paperback. My young editor informs me it taxes and maxes Blurb's size limit, which I'm going to guess (since the pages aren't numbered) is in the neighborhood of 300 pages. That's weird. I don't know what it is I expected, or why I found this so shocking, but the weirdest thing is that it looks just like a book. It looks just like I wrote a book, and it's got my name on it and a photo of my boy on the front, and it's sitting on my bedside table right next to stuff by Anne Lamott and Terry McMillan, and that strikes me and exceedingly weird when I think about it.
Here is the weirdest part: I read it, and I liked it. I enjoyed reading it. Why?! I can't say I enjoyed writing it! Or living it! You know? It's my angsty wallowing. I can never really believe it that you all are reading as I write it, because I feel so annoying while I'm bleeding loudly into my laptop. Yet, when I read the book, I saw the arc of the story as one that showed a family developing, a woman growing, a community building. (You, by the way, are one of my favorite characters.)
I don't know that I will want my kids to read this book ever. (I worry more, I think, about my mom reading it.) But, it turns out, my hesitation doesn't come from worrying I'm too negative (which, of course, I am), as I expected, but because I realize once again that I didn't write it for them, or for anyone else. I wrote it for me. My blog is my sanity, my outlet, my self-medication, my community, my drug. I DO want to write a book for others, and I fantasize all the time about how, in particular, to write one for families just facing a diagnosis who are freaking out the way that I was when started reading blogs because the books I found just kept failing me. I hope I write that book. I feel like seeing Rooster Calls as a book empowers me to believe I can do that. But Rooster Calls is how I give myself an act of kindness, and because it turns out I like reading it, I don't really want to worry about if anyone else does, especially my kids.
Hey, I gotta go now. I am reading this really great book, and even though I've already read it once, I can't seem to put it down.
Tuesday, January 5, 2010
If you have a good resource, can you please share it?
I'm trying to help educate some really good people who unfortunately say something I find hurtful and painful. If you have ARTICLES or WEBSITES that help people realize why they shouldn't say, "Oh, oops, sorry, what I did was so retarded," I would be really grateful.
I apologize if you are offended that I even posted an example of their comments, because I realize their words sound incredibly insensitive. These are good people who just need some help remembering what they already know about respect for all people. Thanks if you can point me in any good directions.
Monday, January 4, 2010
My Best Holiday Gifts
- My children played together with their toys for a while. How long? Maybe 20 minutes. But get this: They shared! They took turns! They used their imaginations! They seemed happy! They took their fun to another room and we let them! They were okay without us! Wow. Makes my heart soar even remembering it.
- My inlaws watched my kids for THREE DAYS. My husband and I drove them there (about two hours away) and then got ourselves a hotel room nearby - just the two of us. We took walks, listened to the rain, read, went to fun restaurants, watched movies, sat in front of HGTV for hours, wrote, and SLEPT. Don't hate me because I have beautiful inlaws! I grew up with crazy parents, if it makes you feel any better.
- We celebrated my husband's grandmother's 90th birthday, and during the lovely party, my FIL looked at me and said, "It's good to have family." Right then, as my kids happily mixed through the crowd of 14 relatives, everyone smiling and chatting warmly, I thought no truer words had ever been spoken. I don't remember ever feeling at ease at a family gathering before with both my kids present. I felt full of pride; that phrase "pride and joy" resonated like never before. My kids have come a looooooooooong way, to be (mostly) comfortably part of a celebration where someone ELSE gets the gifts, they can't eat all the same foods as everyone else, there are many things they shouldn't touch, everyone stays up past their bedtime, people want them to sit and smile for pictures, and adults want to just sit and talk and talk...
- My mother sent me a bracelet that used to be my grandmother's. Speaks for itself...
- My husband bought me a necklace with a letter on it, the first letter of both my kids' names. I had wished out loud for just such a gift, but didn't really expect to get it. My favorite thing is that it's made from an old typewriter key. I love stuff like that. I especially loved that my husband heard me, made that particular wish come true.
- My inlaws gave us a gift card of a future date, when they plan to come babysit while we go out to see a show. (Hey, I said don't hate me: remember, my own father was a wanted criminal chased by the feds for half my childhood!)
- During the best parts and the most stressful parts of the holidays, all the highs and lows, my husband took every opportunity he could find to tell me he loved me. Friends and relatives reached out with words, deeds, and all manner of generosity --- not just toward me, but toward our whole little family. We were given gifts of tangibles, of time, of support and patience, of WORDS, and even of educational support for our boy. It all equals love, really. I feel enormously grateful.
Sunday, January 3, 2010
A relative asked me today if books helped me deal with my son's diagnosis. My own reaction surprised me somewhat, and I've been thinking about it ever since.
The truth is, reading has helped me in ways for which I'll be forever grateful, but books I bought about autism, especially when I sought answers in my early grief after my son's diagnosis, might have caused me more harm than good. Wow. Maybe this is a "no duh" to some of you, but just saying this shocks me; it's a new take on my own learning, my own self knowledge. I, like some friends I know, have lately had an urge to take most of my parenting books, autism books, special needs books, and trash them. Not all. (Some, like This Lovely Life, are treasures.) But most.
Now, books might not be to blame, really; I confess I probably had some impossible expectations. I think I was searching for a book that was like a travel guide to my own life, a manual for my very own family, and that is a book I realize now that only I could write. But some books, I fear, might have exploited my (and your?) vulnerabilities. Some books I think tried to pretend they could really be that Fodor's for my Autism Travels. And they lead me in many wrong directions, costing me time and grief, and I resent those books. On a tougher day I resent them almost (but not quite) enough to make me (gasp) throw books in the garbage.
I don't know how well you'd like it, but rather than read these wanna-be guidebooks that promise me more maps than they can possibly deliver, I know that I would prefer an honest book that starts like this:
This is a book, and a book written in the time of autism - a pivotal time in which autism seems to be exploding, and every day autism presents our children, our country, our world, with rapidly expanding layers of questions.
This is just a book, and it might help you. And it might not. As a book, it's not all knowing, it's not a crystal ball, and it's not going to be all things to all people. Autism is a spectrum, and most books come in black and white. Autism is complex, challenging, and not easily defined. The permutations of issues related to autism are infinite, and, especially given the limiting cost of paper and ink, books are most assuredly finite. Check the index of this book and you will find no rapidly expanding layers of answers. If you love someone with autism, or you care about someone who loves someone with autism, you need many resources, many supports, many layers of networks. You need more than this book.
You need the blogosphere. You need the Internet. And maybe you need this book just a little bit, because this book will tell you how to find more of the things that might give you some of what you need. This is the book that wants you to put it down
as soon as you can, and (after you have spent some good time with your family and maybe taken a hot shower) go to your computer. Because no matter what the authors of this book know about autism, and they know as much as the next family with a member on the spectrum, they do not know what your experience with autism looks like, or how to best support you,
but they know that online it is entirely possible that you can find the community that fits your needs. Even that community will not have all the answers. Even that community will have limitations, and be stymied by some of autism's conundrums.
But, like this book, you will be able to respect that blogging
community if you choose it carefully, and it can be filled with love.
Is that book out there? Did I miss it on Amazon? Or do I (and a you) need to write it?