Hulk Smash

May 7, 2013 3 Comments

Food Coloring Monster

When people feel sorry for me and Atticus over the fact that he can’t walk, I always scoff at them and make inappropriate jokes about how awesome it is to have a kid that stays where we put him. It’s my dark humor helping me cope once again, while recognizing that it is actually kind of great to not have to babyproof and worry about messes and deal with injuries caused by playing too hard.

Those days are officially behind us.

We’ve now had an ER trip for one head bonk and had to cope with another one when he fell off the stair he was playing on, the other day I walked in to find him throwing all his bath toys in the toilet, and now he has gotten into Bear’s baking cabinet, found the giant bottle of green food coloring, and decorated his whole self with it.

And of course, OF COURSE, this sudden burst of precociousness would occur while I am parenting him on my own. Of course he would save up all his mischievousness and mobility for the moment it would drive me the absolute craziest. He’s a wily little sucker.

So on the food coloring day, I did my best not to eat my young, remembered my sense of humor and stopped to take pictures, and then calmly tossed him in the bathtub. The second his toes touched the water a cloud of green rose around him, so I took out his favorite foam letter bath toys so they wouldn’t get stained, throwing them in the toy basket we keep next to the tub. I scrubbed his face and I scrubbed his hands and left him to soak while I saw to the kitchen and my newly verdant tile.

By the time I came back to check on him, my little monster was doing a handstand with his naked booty in the air, balancing his legs on the tub while holding his whole body up with one arm while he used the other to reach for his bath toys and bring them into the water one by one.

Part of me wanted to shake him, and part of me wanted to collapse in awe at the physical feat he was performing.

That’s what I try to remind myself whenever his precociousness makes me bonkers. When he talks back in ways so clever I can’t help but laugh, when he finds brilliant little ways to problem solve around my discipline, when he manages to use his body in ways his therapists and I would never have believed possible to get into something he knows he shouldn’t, I swallow that impulse to scream, I take a deep breath, and I tell myself that this is what is going to get him the life he wants. He might have cerebral palsy, but it doesn’t have him.

If he can make it to adulthood without me killing him, he’s going to be able to do whatever he wants.

Filed Under: 'dis Ability, Are you kidding me?, Atticus, mama musings, The Good Life

Single Parents, I Salute You

April 26, 2013 3 Comments

I’m now completing my fourth week with Bear working out of town, and I am weary. He’s come home three out of the four weekends and one night a week, but it hasn’t even made a dent in my energy deficit. Seriously, how are you people doing this??

Because I am not a total self-absorbed jerk, whenever I describe this challenge I refer to it as “solo parenting.” Because even as I struggle, I recognize it’s totally not the same thing as being a single parent. I don’t have to worry about how the rent is getting paid, I have a light at the end of the tunnel, and I have those wonderful weekends where I get to lock myself in my studio and have some quiet. Plus I have the easiest kid in the world. Any parent who is raising kids by themselves would laugh at me like a chump if they could be a fly on my walls.

Well, I suppose there was the minor thing of a surgery, an IEP, two specialist appointments, and three school visits to meet with therapists, but still. Other than that.

So today I just want to say, single parents? I’m proud of you. You’re doing a great job.

Filed Under: 'dis Ability, Are you kidding me?, mama musings, The Good Life

Whether or not to be “That Mom”

April 22, 2013 5 Comments

Atti thinking

Atti had another IEP last week, and normally these things aren’t so bad for me. His teachers and school staff love him and I almost always leave feeling heard and supported and confident that my child is loved. Which is a pretty massive gift for any mom, let alone a special needs mom. I am always aware of how good I have it on that front.

But this one was a doozy. He’s about to go into Kindergarten. Which means that there are different measures that have to be applied for his goals. Which meant a pretty uncomfortable conversation.

For starters, Atti still doesn’t talk a lot. In fact, he talks so rarely that I’m tempted to say he’s approaching selective mutism. But a diagnosis for that is going to be rough, considering how many other variables we’re dealing with.

In children this young, the way they’re intellectually evaluated is mainly by tasks that require physical ability – handing over certain objects, pointing to objects, etc. – and in a kid that is physically impaired, it can be tough to evaluate. So then they go for verbal ability – answering questions, having a conversation, demonstrating comprehension. But if your child is verbally impaired, it’s even tougher. There are also some cues for visual ability – what they’re looking at and responding to – but if your child is also visually impaired, the whole thing is one big guessing game.

Which is where Atti falls in these evaluations. He can’t be counted on to respond with physical ability, he can’t be counted on to respond with verbal ability, and he also can’t be counted on to respond with visual ability. Tapping into that little brain of his is a big mystery.

I explain all of this because as I talk about the school psychologists reaction, I don’t want to paint him as a villain. His job is to remain impartial. He doesn’t spend all day every day with these kids. He has to go with what he sees on the test because he has to be clinical, and because no matter what is going on in Atti’s head, if he can’t do these things when asked, school is always going to be a challenge for him.

But his reaction hurt. If the tests are to be believed, Atti would be profoundly mentally retarded. Which I think anyone reading this blog for any length of time would know is totally not true. My child has known his alphabet since he was 18 months old, has been saying it backwards from 2, and has been reading since 4. And yet on the test? He wouldn’t even reliably say his ABC’s.

The school psychologist, in as gentle and reasonable way as he could, suggested it might be time to revise my expectations. That instead of college, I should be focused on the giving Atti the ability to make change for a dollar.

Every parent, whatever the needs of their child might be, eventually comes up to the point where they have to revise their expectations. Not every child can be a professional athlete, or go to Harvard, or be the President. Letting go of that is part of the work of parenting. But every parent also has to be their child’s advocate. They have to be the ones to push and fight and clear the path ahead of their child until they’re ready to do it on their own. Sometimes that means having faith in your child when no one else does. Sometimes that means sticking it to the man and hiring a lawyer and drafting laws like so many of the moms of kids with disabilities before me. Those moms are never far from my thoughts. My road would look very very different without them.

But because so much of the hardest work has been done for me, I always wrestle with what is left. Those mom’s have made it so that I have the legal right to get Atti every possible educational opportunity. But just because the opportunities are there doesn’t mean they’re right. I could hire a lawyer and sit in front of a judge and force the school to put Atti in a typical kindergarten classroom, where he might be so left behind by the pace of what they’re teaching that he’ll give up on school altogether. Or maybe he’ll see all the other kids communicating in full sentences and having conversations and using the toilet, that he’ll decide that’s what he wants too.

Maybe by pushing him I’ll be a Tiger Mom and get fantastic results, or maybe I’m the Toddlers and Tiaras mom who thinks their child is the most perfect bit of creation when the rest of the world just sees a booger eater. Maybe I’ll be the best mother in the world and teachers will marvel at what we’ve been able to accomplish together, and maybe I’ll be “THAT mom.” The one that teachers cross their fingers they won’t have to deal with because I’m demanding and delusional.

By the end of the meeting we came to a good resolution. A lot of school districts have “LD” programs for kids with learning disabilities. This will put Atti in a class with kids who talk, it will give him a focus on academics instead of just life skills like making change, but it will be far more flexible than a typical classroom. I think we reached the appropriate solution. But I also know that my child is not intellectually disabled and I won’t let anyone tell him that he is. If it means being “THAT mom,” then I’ll have to wear that label with pride.

Filed Under: 'dis Ability, Are you kidding me?, mama musings

Kid’s songs: Bringing Home a Baby Bumblebee

April 19, 2013 3 Comments

Trying to get Atti to cooperate during speech therapy is a herculean task. This kid has an iron will, which is awesome because it means that when he wants something, he cannot be stopped. But it sucks because often what he wants is to not do what his mom or teachers are asking him to do.

So I had to come up with a way to get him to work on his speech therapy in a way he’d be interested in, which always comes back to music. I was looking for songs that had a lot of the sounds he needs to work on: B’s, P’s, S’s, L’s, and R’s. I remembered the traditional ‘Baby Bumblebee’ song, and Atti thought it was the funniest thing ever. He loves screaming OUCH! at the top of his lungs and falling back on the bed dramatically. So with that success, I kept going and made up verses for all the rest of the letters he needs to practice.

I’m bringing home a baby bumblebee
Won’t my mama be so proud of me
I’m bringing home a baby bumblebee
OUCH! It stung me!

I’m picking up a purple porcupine
I will be so happy when he’s mine
I’m picking up a purple porcupine
OUCH! It poked me!

I’m scooping up a silly slimy snake
I’m so happy, oh for goodness sake
I’m scooping up a silly slimy snake
OUCH! It bit me!

I’m looking at a lizard that’s lean and long
While I sing this happy little song
I’m looking at a lizard that’s lean and long
HEY! It licked me!

I’m rounding up a really rotten rat
Oh just think what mom will say to that!
I’m rounding up a really rotten rat
P.U! It stinks!

A note about use: Since I put this on Youtube I’ve had some professional interest in this. So feel free to sing it with your kids, use it in a classroom, send it to friends (with a link back here), enjoy it all you’d like. But please don’t reprint the lyrics (including on your blog) or record the song without my permission.

Filed Under: 'dis Ability, Atticus, mama musings, Stuff I Make

Lemonade out of Lemons

April 15, 2013 2 Comments

Last week and this week have been – and continue to be – challenging in a way that makes me accept every scrap of pity people send my way as the mom of a child with a disability. Bear has already started work in his new building, which is an hour and 45 minutes away. Which means that he comes home one evening during the week, then on the weekend, and the rest of the time he’s in a hotel while I solo parent it.

Of course this would coincide with two weeks stuffed with appointments. Every day last week, and multiple appointments every day this week, including another surgery on his little boy parts. I often say that nobody doles out motherhood medals, but this week? I’ve freaking earned one.

Last Thursday Atti had an appointment with a pediatric neurologist. We’ve been waiting for this appointment for months, and once he visits we’ll start working on scheduling the big surgery that will change everything for him. This was a very big deal, and, of course, an hour and a half away from home.

I planned ahead the night before and imagined Atti and I leaving before the bus to school was even scheduled to arrive, me armed with a change of clothes and snacks and diapers and drinks, driving through the gorgeous Altamont pass and enjoying the view of the verdant rolling hills.

Of course, that’s never how these things go. After a very early wakeup call thanks to Bear leaving his phone alarm on while he was in the shower, I spent the morning trying to get Atti moving, and myself moving, and Bear out the door for three days away, and before I knew it, I should have been on the road 15 minutes ago.

I shove Atti in the car and hit the road and after about 45 minutes of frantic driving trying to make up for lost time, I look down and realize my needle is on E.

I find a nearby gas station and as I’m pulling in I see lights in my rearview mirror. Another ticket. This time for expired registration. (Which is Bear’s job.) The officer was very sweet to me and let me pump my gas while she ran my plates, but I had pulled in funny, what with the cop behind me and all, and only the premium gas hose could reach my car. So I paid way too much for a few gallons of gas, since I couldn’t exactly start my car up and repark while the police officer was making sure I wasn’t a fugitive, accepted my ticket, and got back on the road.

With only a few minutes left of our journey the office calls. The doctor had to go into emergency surgery and had to cancel all of his appointments for the day.

So since the morning was such an epic failure, the rest of the day had to make up for it. We were in the Bay Area, the weather was beautiful, I was with my favorite little buddy, so we decided to cast off all other responsibilities and make this MAMA AND ATTI’S DAY OF FUN!

New toys
We went to a fancy toy store where Atti picked out some letters and I picked him out a tool kit…

New fabric
We went to a quilt shop where I picked out some fabric treasures, Atti got a sucker, and everyone in the store fell in love with him…

Splashing in the fountain
We played in a fountain we found in the center of town…

At the nursery
We picked out some flowers for the garden…

Reading
We went to the book store where Atti read his book while I got to read my own…

snuggle
And we finished the day off in our favorite way. Lots and lots of snuggles.

So a long drive, a ticket, a frantic morning, expensive gas, no doctor’s appointment…shrug. It was still the best day.

Filed Under: 'dis Ability, Are you kidding me?, Atticus, mama musings, The Good Life

Change is hard

April 2, 2013 Leave a Comment

We love our OT
We have had tremendous good fortune in Atti’s therapists and case workers and doctors. There have only been a couple of people that weren’t good fits, and everyone else has been the most dedicated, kind, supportive professionals I could ever dream of.

One of our most favorites is Atti’s Occupational Therapist, Margie. Atti fell in love with her from day 1, and now every time we drive to the school where he receives therapy he bounces in his seat and says “Let’s go see Margie.” His poor PT has had to put up with playing second fiddle as he fawns all over Margie, but she just shrugs her shoulders. She has to stretch him, Margie gets to play. It’s a role our PT is used to.

Margie is the person with the most childlike spirit I’ve ever known. Watching her play with Atticus, and sincerely enjoy it as much as he does, has completely changed my approach to parenting him. Playing silly games isn’t something I do until I can distract him with something else and get back to my day. Now it is my day. And I’m remembering how much fun it was as a kid to play pretend, and imagine, and explore.

Margie and Atti
Margie started her retirement last week, and so now we’ll be embarking on a new relationship with a new OT, and finding new ways to keep Margie in our lives. Because we’re not letting go of someone this special.

Filed Under: 'dis Ability, Are you kidding me?, Atticus, The Good Life

World’s Youngest Perfectionist

March 25, 2013 3 Comments

Wary

Atti has a significant speech delay, and we’re always trying to unlock the mystery of exactly how to help him past it. You would expect a speech delay in a kid with Cerebral Palsy, it’s even more common than needing a wheelchair since all those tiny mouth and tongue muscles have to coordinate together in micro movements at a rapid pace, but Atti’s doesn’t seem to be so clear cut.

For one thing, he’s capable of making a whole lot of sounds he just doesn’t use in speech. Sometimes I think this kid is going to be the next Michael Winslow. He imitates the car, the dishwasher, the Gu-Gung of the Law and Order gavel, the static of an HBO production bumper. And his singing. You guys, his singing. He hears a song three times and he can sing it perfectly. He sings songs I’ve never heard. He sings songs I don’t even realize he’s heard as I’m flipping between radio stations. He sings introductions to podcasts he’s only heard second hand through my earbuds. He sings songs that I made up in a waiting room once and completely forgot about. He sings and sings and sings. Often jumping off a word in the conversation or choosing a song that can answer a question. He’s a prodigy.

So with that kind of skill, you’d think, or at least I would think, that he’d be able to communicate in words. He’s capable of making the sounds (close enough to be understood, anyway), he gets the meaning of them, and yet, he doesn’t talk to me. He repeats scenes from his favorite books or television shows, he’s constantly repeating the sayings his toys make, but if I ask him what he learned at school that day? Crickets.

At our last IEP I was sharing my frustration about this with his team. I really want him to enter Kindergarten in a typical classroom, because he’s freaking brilliant. He sat on my lap as I texted Bear and he read his first sentence today. I love you. If he had eyes that could stay on the same line I think he probably would have done it years ago. But if he can’t communicate with his teacher or follow directions or answer questions, that could be a real hindrance. School is all about performance. You have to be able to prove you know stuff on cue.

In that meeting one of the program directors said, “You know, if we were talking about an older child, I’d almost wonder if he was a bit of a perfectionist.”

She blew my mind. Perfectionist. Of course. He is my child after all. He certainly has some speech issues to work through, but his real communication problems aren’t from a lack of ability. When he sings a song, each word has a place. There is a right word in every moment. When he repeats the things his toys say, he can get it exactly right. He can be understood. He doesn’t have to guess. We don’t have to guess. He doesn’t have to fail.

Since that meeting we’ve been working on reinforcing him whenever he makes an attempt, and slowly, slowly, slowly, we’re seeing our efforts bear fruit. Now when he wants to tell me how much he loves me, he’ll use a saying from his toy, but with a twist. “You make me happy too…Mama!” He’ll say with a gleam in his eye. Watching to see if I caught how he used my name instead of the name his toy uses. He’s starting to repeat what we ask him to say. Still not originating speech, but being brave enough to try and follow our lead.

Our last time at therapy we were trying to get Atti to play with a basketball hoop, but he was not feeling it. Instead of stretching his arms over his head like we wanted, he’d toss the ball somewhere in the direction of the net and then try and talk us into letting that be enough. I know this because he was using my words against me. “Good try, my sweet boy!” “Excellent work!” “Atti did it!” That’s apparently what I say to him when he tries, and so that’s what he said to me to tell me he was.

Filed Under: 'dis Ability, Atticus, mama musings, The Good Life

Atti recovering

February 11, 2013 2 Comments

Atti recovering
Last Wednesday Atti had another eye surgery. His second, but probably not his last. Did you know there are eight muscles that surround each eye? And they each have to work with precision not only with the other seven muscles, but with the eight muscles of the other eye. It’s a miracle we aren’t all wonky eyed. Controlling muscles is kind of a hard thing if you have CP, and particularly in Atti’s case where one side of his body is more impacted than the other, so getting his eyes pointed in the same direction is going to be a long long journey.

Of all of his surgeries, this one is the hardest on me. Drops in the eyes every few hours, can’t get his face wet for weeks, we have to guard carefully against infection, he needs a ton more supervision, and the healing process is absolutely gruesome. His little hazel eyes look bright blue up against the solid red of his eyeball, the skin around his eyes puffed up and blackened like a boxer.

But he’s already so happy. He’s actually watching television with me – he’s rarely had much interest before – and now when we read books he actually follows my finger along the words. He’s been singing and talking and jumping and rejoicing, far more excited than I expected him to be. I certainly don’t act like that when I get new glasses.

But for me, glasses are just a simple corrective thing I need. Poor eyesight is a nuisance but it doesn’t keep me from expressing myself, or participating in anything I want to participate in, or being recognized by the world. But it does for Atti. His vision is great, but his depth perception is bad, which means that while he can read every individual word I put in front of him, he can’t read a book because his eyes can’t follow the lines. He struggles to draw or color or write his letters. He fails all the tests at school that require him to put items somewhere – puzzles, sorting, all kinds of things I didn’t even realize were important.

And people make judgments about him. That little wandering eye tells people things about his mind that just aren’t true. They see that eye go off and they think he’s more limited than he is. They think he’s simple or intellectually disabled, as if it was intellect that made our body parts obey. They think he’s not listening to them and so they can talk about him as if he’s not in the room, as if he can’t understand, as if he has no opinion or ability at all. If most of our conversation is through body language and eye contact, a simple thing like a wandering eye means he’s got two strikes against him.

Hopefully not for long. The results so far are promising, but this isn’t the end. Hopefully it will be enough to allow him to participate at school more, which is what I really want. It would be nice if people would stop making judgments, but what I want most for him is to be able to do what he loves. If he could read books and write letters, his eyes could wander around the globe for all I care.

Filed Under: 'dis Ability, Atticus

5 years old

February 5, 2013 5 Comments

Dapper

5 years old. 5 of them. 5 entire years.

I’ve been struggling all day to come up with something to say to mark the occasion, and I’m coming up completely blank. How have there been five years with this little guy? I’m still calling him a toddler!

I know every good parent thinks their child hung the moon, but I think mine might just have done it. We’ve got it bad for this kid. Jaws dropped, gasping, hands clasped, bad for this kid. He’ll be playing with his toys and we’ll be on the couch just watching him, marveling, until one of us says, “isn’t he the best kid?” We’re constantly amazed at how his little mind works, his tender little heart, his musical talent, his crazy smart brain, and his world flattening will.

That will is both his greatest blessing and his greatest curse. It’s that will that keeps him working and working and working to climb onto the couch, pushing himself onto his knees, stretching to grab on to the cushion, pushing up on his toes to try and stand, balancing precariously while he hoists himself up with his arms, pulling his torso further up until he can use the couch as a fulcrum to tip his uncooperative legs up behind him. I never had any idea how much physicality is required to exist in the world until I became his mom, and now every day I watch as he overcomes pain and isolation and biology to do things that rarely even merit a mention in the life of another kid. He is my hero.

But that will also makes him pretty dang uncooperative sometimes. When something is his idea, there is no force on earth that can stop him from doing it. But when it’s not his idea, there is no force on earth that can make him. As we start thinking about kindergarten, the big thing that would hold him back is his ability to follow directions. His speech therapists have begged and bribed him to say one little “b” word, but he just put his head down on his desk until it was time for them to leave. I never wanted to use discipline when it came to something that might be affected by his disability, but knowing what a smart little kid I have and what is at stake if he didn’t cooperate, I started laying the hammer down. Overnight he went from not being willing to say ‘hello’ to saying ‘Can I have a cookie, please?’ He’s such a little stinker and when I’m ready to wring his neck I have to sit back and remind myself that it’s that stubborn will that is going to get him walking. Walking, and through school, and on to college and an independent life. Nothing will stop him.

Having a kid like this, a kid faced with so many challenges and who so stubbornly attacks them, changes you totally. Being even a mediocre parent to a kid like this earns you shame. A kid like this requires you to rise up and meet him. And because of that, my experience in motherhood hasn’t at all been what I’ve expected. I feel far more proud of my efforts than guilt about what is left to be done. I don’t find the drudgery in motherhood to be a problem, because I’ve seen that drudgery is how great things happen. You push and you stretch and you stand and you balance and you pull and it all looks like a lot of effort for naught, but that’s what it takes to accomplish even the smallest tasks.

Laundry is never ending and the floor is always dirty and there is always some person you are neglecting or deadline you are missing, but all of those tasks add up to create something pretty damn powerful – nurturing. Most of us take for granted how many muscles have to cooperate and obey for us to stand up and walk to the kitchen. But Atti doesn’t. And I don’t. And most of us take for granted how many little attentions have to be paid to nurture a child, a relationship, an environment, but I don’t. Not anymore.

Atti has shown me how to see all the little dots in between where I am and where I want to be. So every day I move forward a couple of dots at a time and I don’t feel guilty for not being at the end yet, I keep my eye on where I’m headed and the life I want to create for my family and I keep moving. And that means that I’m going to be the mom that Atti needs and push and pull and balance and fight to help him make his way.

This kid of mine got that world flattening will from me.

Filed Under: 'dis Ability, Atticus, mama musings, Mushy Love Stuff

Head Injuries! Wheeee!

January 28, 2013 6 Comments

Big Boy

Just when I was starting to feel like I was getting my feet back underneath me, I had to drop everything and run to the ER for a cat scan for Atticus. With all my time in the hospital, this was actually my first time as a parent in the ER. That’s a little silver lining in the disability. No accidents when you can’t run around! Or so I would have thought.

Atti was sitting on the bed in our guest room, jabbering and singing with me while I typed, and as we played the front door opened and in walked Bear. Atti got so excited he forgot himself, lost his balance, and plummeted off the bed and onto the edge of the bookshelf. He didn’t bleed, he didn’t throw up or lose consciousness or any of the other scary things that happen with a bonk on the noggin, so we just tried to calm him down and make him feel better while we tried not to laugh. A pissed off four year old is hilarious, especially when he’s blaming his dad for the fall. In between screams Atti would literally shake his fists and say “Oh daddy! Daddy! :unintelligible grumbles: Daddy!” and then to make certain we were getting his point he did a pitch perfect impression of me saying “JARE-ed! JARE-ed!” as he rubbed his head. If his dad hadn’t come home and gotten him all excited, Atti never would have fallen off the bed! Dang daddies.

Other than totally pissed off, Atti seemed fine and didn’t even complain the rest of the night. It wasn’t until nearly a full week later that I was combing his hair and felt a softness. It was so subtle I had to stop and ask myself if it was always there. I told the nervous mother in my head to chill out, but the next morning it was worse so I freaked out and took appropriate steps to get him treated.

One of those steps was getting Bear to come home from work. All I had to do was say ER and there was a Bear shaped cloud of dust left behind his desk. I might have freaked out, but he FAH-REAKED out, and like all good partnerships we recognize that when one of us is FAH-REAKING, the other has to rally and hold things together. I talked to doctors and filled out paperwork and kept Atti calm while Bear just tried to keep from clasping Atti to his chest and sprinting into the sunset.

But then it was time for the cat scan. And I just happened to be in that window of my cycle when if the odds are ever going to work out for us to have another baby, I had to take some precautions. Precautions that turned out to be unnecessary since I’m yet again not pregnant, but that’s another load of crazy making for another day. Bear had to go in without me and keep Atti still while he faced down a giant robot. And since we have a good partnership he switched off the freak out switch and came through like a champ while I was in the other room taking my turn to freak.

Head injuries are so dramatic. They’re like the teenage girls of injuries. Atti turned out to be just fine. The swelling is a hematoma which is just a little bleed in between the skull and the skin of the head. It’s totally nothing, but with a head injury, and a head injury of a disabled boy with brittler than average bones, you don’t mess around. It all just makes me very very grateful that we don’t have to do this regularly. Next time I see a mom with a really active boy I’m going to cock my head to the side, furrow my brow, put a gentle hand on her arm and say, “I just don’t know how you do it. You must be so strong.”

Filed Under: 'dis Ability, Are you kidding me?, Atticus, mama musings
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