Thursday, November 18, 2010
I hate these appointments.
It is his job to evaluate Jude for services. The premise of the grant we are up for is that it is cheaper for the government to provide things like respite and care in the home than to pay for residential care.
Residential care. It sounds like swearing. We don't say those words in my house.
Nice guy asks Jude some questions, like what day is it, and where do you live? Jude points at some pictures when asked, but not all of them. I try not to interfere.
Actually, the worse this guy's report is, the better chance we have of getting the grant. I should not be trying to get Jude to show how smart he is. Rationality, though, is outside cooling its heels in the minivan. I left it there. I always do.
When the testing is all done, Don takes Jude outside to look at squirrels or whatever and I stay to talk to earring. He tells me, not unkindly, that Jude tests in the mentally retarded range, and that he will likely need residential care before his teen years are through.
He is brilliant, I say. Jude knows who Gustav Klimt is, for God's sake. He loves Thoreau. Keats. Brahms.
That might be, says nice earring man, but if he can't put on his own shoes, then his functional IQ is low.
There are plenty of people out there who function just FINE I want to say, and they never recognize beauty one freaking moment of their lives. I do tell him, that Jude is loved, and lovely, and happy. I might have waved my finger in his face.
Poor guy. What a crappy job. He gets paid to tell people things no one should ever have to hear.
Later, at home, I cry, weeping, sobbing with a towel in my mouth so no one can hear my anguish in the bathroom. It's not fair, God, not fair, you give me this beautiful child and then you ask me to give him up. I can't be that brave. Stop asking me to be so brave.
I send nice British earring guy an email, thanks for being honest with me.
He writes me back that my feelings are quite normal, but I can't use them to make decisions about Jude's future, because Jude deserves independence. Just like I am planning for Sage and Eden to grow up and have a life, so I must plan for Jude.
He is right. It is a selfish, crappy message to give to Jude that he can only be okay when he is with me, and that I only exist to wipe his nose and button his shirt. Just like God has a plan for Sage, and Eden, and me, and my friend's kids, and earring guy, He has one for Jude.
So I pull up my socks, and trust in God, and try to be brave. Just try. Right now, it is really all I can do. Okay God, and Jude, and earring guy, this is me, taking those baby steps. Trying to move forward, and trying to let go.
Just don't ask me not to cry.
Wednesday, October 20, 2010
Thursday, October 14, 2010
Tuesday, October 12, 2010
Today is perfect, it is October but it is warm, leaves blowing across the streets and the trees have turned to that yellow gold Chicago color that combined with black branches means cold is coming, it is on its way.
We are headed to the woods, the forest preserves, with all the boys, one friend and Grandma. We have no plan except to walk around in the leaves and breathe, it is a good plan, we all just want some sun and a little time away from tv and the loudness of our house with what, like a hundred families in it. Let's walk and breathe. God it feels good.
Jude is out and down the hill before we can stop him so we follow, he is on his way to the river, or the piddly branch of it that runs through these woods. We walk run past dogs, people on bikes and what looks like a wedding reception on our way to the trees that guard the murky water. We know now that there will be no wildlife because Jude is crashing through the leaves like a big hungover moose so everything with even a little sense of self preservation will be long gone by the time we reach the treeline.
Sage is doing his best to keep up, I am watching him from the corner of my eye, worried about his ankles but pleased he is here, not at home playing Halo. His hair shines golden in the sun, and I realize with a shock that he is handsome, not just cute, and he is a teenager, not a child. Don helps Grandma over some tree roots and we are there, at the water, the mighty Chicago river, and there is a lawn chair and some beer cans. This is so, us, this trip, all this hoopla and chaos to get to some place that is somewhat less than epic but we are okay with that and pick up rocks and stuff to throw in the river.
Eden and Matthew are just on the edge, and I yell at them to step back and they start climbing a tree. There is a smell and I spend a few minutes contemplating calling the state troopers or the Doe Network but Don catches my eye and shakes his head. "Raccoon." God we are so married.
On the way home we get ice cream, and Jude is quiet now, with his head against the window, watching the world zip by, the world that fills him with wonder and fear and makes not so much sense to him but he is going to see it anyway, this beautiful boy, on this beautiful day, and there are leaves in my hair and mud on my shoes but we are good, all good, just for today, this moment, we are good.
Friday, August 20, 2010
Tuesday, July 27, 2010
Dumpster spotting is easy from the el, Jude announces them all along the Red Line. Sheridan, Addison, Belmont, we know where they are, they can't hide from us. We shout them out so everyone can hear.
Yesterday we went on a dumpster tour of Uptown. Down Wilson, over to Hazel, Eastwood. We approach the Habitat for Humanity townhouses next to the free clinic. The kids playing out front stop and stare. "Can we look at your dumpsters?" I ask, trying not to look creepy. The kids look at Jude, who is flapping and giggling with excitement, and back to me. They nod slowly, and then book it into the house.
As we stand in the parking lot, Jude patting the dumpster like a beloved pet, I see the curtains flutter in the upstairs window and realize mom has been informed of Weird People on the Premises. I give a little wave, and the curtains close. Time to go.
There is one last dumpster we must see, but we cannot touch it, it lies behind a gate that only opens when the nice cars of the condominium owners, the brave but fearful pioneers that come with gentrification arrive home from work. This is the unattainable, the Holy Grail, and Jude presses his face against the bars with unrequited love and longing. I press my face against the bars. too, trying to see what he sees, with longing not for the dumpster but for my son, this mystery that unfolds far too slowly for my taste, a little piece at a time.
"Why do you like it so much?" I ask, not expecting an answer. "It's beautiful," says Jude.
An SUV honks and we step aside. The gate closes and we turn and head towards home, willing to let some things remain a mystery for now, but someday we will get to touch that dumpster. Until then, we will be patient, and admire the beauty from afar.
Thursday, July 22, 2010
Wednesday, July 21, 2010
Sunday, July 4, 2010
Jude's medicine is making him sick. We were trying to help, help the anxiety and obsession and the no sleeping that comes with this unwelcome gift called autism. So far no medicine has been worth the side effects, the shaking, the dull eyes, the sleeping all day. I feel caught in the worst conundrum, treating my son like a recipe that just needs tweaking or leaving him with anxiety he cannot bear.
We were back in the ER last night, and they had to take blood. The nurse was filled with compassion because he, too, has a child with autism and understands not being able to fix the abject terror that overcomes someone who cannot sort out your words or make sense of your facial expressions. Don knows I cannot stay, so he tells me to go and I am not quite down the hall when the screaming begins.
The chapel is empty and I move past the quilts filled with the names of babies parents only got to hold once, past the religious pamphlets and sheets of paper with comforting scriptures on them. I find the book where people write their prayers, their pleadings, and write HELP ME GIVE HIM BACK TO YOU. I flip through this big book of sorrows, and see where I wrote the same thing twice last year.
This love, this clinging, desperate guilty love, is doing us no good. Jude has a life to live, a good one, if I can release him to it, and if I love him more than myself, he has some beautiful damn stuff in store. He isn't here to meet my needs, but to fulfill his own purpose, one that belongs only to him. Holding him to me won't fix whatever went wrong, whatever hurt his brain. The smartest doctors in the world can't explain it to me, nor can they convince me it isn't my fault, that I didn't break him somehow.
I remember my father hanging on in a fitful coma for days after his heart attack, and me, barely out of my teens, whispering in his ear that I would be okay. It was an act of unselfishness, I wanted to beg him, no, don't go, stay, please I need more, but I let him go. And he left.
When we got home Jude curled up on the couch next to our bed. I sat next to him and held his hand. "Do you remember," I ask, "when you had no words? And Mama prayed to hear your voice?"
"We are making up for lost time, Mama," Jude says, clear as day, and this moment of clarity shocks me, and yes, God yes, we have lost time, time lost clinging and not trusting, time lost to fear and selfishness.
No more clinging, just letting go, and maybe a little dancing, and running, and maybe a little waving goodbye.
Wednesday, June 16, 2010
The medicine that was supposed to bring sleep has done the opposite. Jude is flinging himself against the wall and shouting at the top of his lungs. Sleep. god, we just want sleep. it has been so long since we have had sleep or even a moment to breathe, just to be.
Have you ever been tubing? A boat pulls you through the water while you hang on to an inner tube, bouncing and twisting and hitting the water while you cling for dear life. That is what this week has felt like.
Last night while Jude was screaming and tossing his (and our) things about I went and sat in the kitchen. Eden came and asked if he could tell me a secret. He whispered in my ear that sometime he gets mad at Jude.
Me too, I told him. Then he whispered that sometime, just sometimes, he wished that Jude didn't have autism.
I hugged him and cried silently, and Rachel walked by and noticed I was crying and brought me some tea, and eventually Jude calmed down and I lay next to him, kissing his head and telling him it is okay to be angry, but please don't break stuff, and he sniffles and says sorry, sorry, I'm sorry Mama. Jude Hill was afraid of the parts. What parts? I wish I knew.
He falls asleep and I pray, silently, and try very hard to just stop flailing, stop struggling, stop fighting, and let the lover of my soul comfort me, and tell me everything is okay, and it will all be alright.
Tuesday, June 8, 2010
Friday, May 28, 2010
It is me. I will him to come down here, for one more kiss, one more sleepy snuggle.
In my mind, I have had to sacrifice so much, what with sending them off to school, teaching them to do things without me. It is especially hard with Jude, who for so long could not speak. We have this connection, this way of communicating without words, a soundless understanding. It is hard to give that up. In a sense he is my last baby, my last child who understands my wordless love, who is comforted by my smell and the beating of my heart.
There is a part of me that wants to consume the one I love, to be enveloped in them, to breathe them. Separation is the hardest thing to face, but perversely it is my greatest responsibility as a mother. How messed up is that? My whole purpose in life was to bond and nurture, bond and nurture, and now my greatest calling is to send them away?
The bible addresses the idea that children become idols in several places. The godly (Abraham, Hannah, Mary) hand them over willingly, while the ones who cling hurt themselves and their children. I see it. I want to cling tight and never let go. I see how wrong it is, too, the selfishness, the needs I want to meet through those whose needs I am meant to meet.
Love is sacrifice, love is letting go. Love is teaching you to tie your shoes and not having to know what you did at school today. Love is sending you and your fuzzy head that smells like summer back to your room, to dream your own dreams, not mine, separate and well defined.
I love you. And that's the truth, that is what is real. I don't have to sacrifice my dreams, my plans, my wants, my desires.
I just have to let go of you.
Thursday, May 27, 2010
It seemed like a good idea at the time.
My parents despaired. I had a pristine, well behaved older sister who never even got her clothes dirty. It would never occur to her to overflow the bathtub or put beans in her ears. This made my exploits seem even more outrageous by comparison. As an adult I still struggle with this, firing off outraged emails I regret moments later, or making a joke that seemed funny in my head, but rings highly inappropriate as it leaves my mouth. It's a work in progress.
My oldest son is well behaved. He doesn't talk back, has a kind demeanor, and is very truthful. The thing is, though, is that poor impulse control seems to be genetic.
We have gone to the hospital for swallowed pennies, party favors in noses and falls off detergent bottles. (It was a game that ended badly.) We have discovered the hard way that some things do not flush, no matter how hard you try. Last September he jumped out of a playground tower, breaking both feet, in spite of being keenly aware of a bleeding disorder and thin bones.
"But, why?" everyone asked.
Everyone but me.
Two nights ago my sweet, creative son decided to practice using his epinephrine pen that he has for allergy emergencies. When he came into my room, bleeding and hyperventilating, gasping, "EPPY PEN, EPPY PEN!!" I thought he NEEDED the eppy pen. No. His heart rate was through the roof and he looked like he might pass out.
On the way to the hospital, in the ambulance, I had a hard time not laughing. Sage was fine and I felt giddy with relief and the thought of telling the story at family dinners for years to come.
"Why aren't you mad?' He asks.
"Because you make sense to me," I say. I know that the humiliation of the neighbors seeing the ambulance and the pain of the needle that went through his thumb is a powerful lesson, just like the casts he wore on his feet. I want him to remember that instead of ranting and yelling from me.
He and I sit in the waiting room for about an hour, and his heart rate is fine, blood pressure, too. The nurse is mean, and there are a lot of sick and broken people waiting, so we walk home down city sidewalks in a companionable silence that only happens sometimes, rarely, with someone you truly, truly understand.
Tuesday, May 11, 2010
Tuesday, May 4, 2010
Ephemeral. Not a bad word, though I don't get to use it much. Working it into a sentence would make me sound all farty and pretentious like the drama teacher. I think about it a lot, though. In fact, it is the key to parenting kids whose futures are kinda iffy, in the sense that who the hell knows where we will be tomorrow, much less ten years from now? Nothing like precarious health to remind you to live in the moment. That and giving up on expectations, which is actually a good thing, a really, really good thing.
Every smile, every hug, every kiss is just a bonus, a windfall, like winning money off a scratchy ticket.
I am writing, right now, listening music on my earbuds and Jude is home from school, recovering from the migraine he had last night and dancing in front of the tv, worshipping Bert and Bernice the pigeon in an interpretive dance sort of way that goes surprisingly well with the Ting Tings, and it is ephemeral, a moment in time, a perfect, sweet moment that only comes from releasing what you thought you wanted and letting yourself be carried away by joy, by what tastes exquisite on your tongue right here, right now, and knowing not everyone gets to let go like this. My teacher, not the drama lady with her delusions of grandeur, but my teacher with blond hair, a too small Tigger shirt and a way with words has so much more to teach me, and here I am, ready to learn, not looking forward but satisfied to sit and learn at the feet of the master.
Monday, May 3, 2010
Jude needs to speak, he screams and we say use your words, love. Tell me why you are screaming, why are you angry, what does it mean?
Use your words. There are no words sometimes, just something primal that must come.
If we can write it, we live. We can breathe.
Jude is screaming, BEACH BEACH over and over and over. He has his bathing suit on, Red faced. Gasping and sobbing. How can get him to understand, the beach is closed, it is 55 degrees, I wish I could take you, but I can't.
I get out paper. I tell Jude to draw a picture of the beach. I write underneath, Jude wanted to go to the beach, but it was closed. He was sad and mad. May 21 is beach day. the end.
Quiet. Jude allows me to hold him. He holds the paper in his fist.
We just want to be heard.
If I can speak it, I can live. It cannot hurt me now, what was done to my body, years and years ago, yet will kill me if I hold it. I will use my words. I kiss his head, salty and sweaty. I hear you, love. It is just that simple. We all have a voice, and we all have to use our words.
Tuesday, April 20, 2010
Friday, April 16, 2010
Sage tried to run yesterday. He really shouldn't have, his joints and tendons and bones just aren't able to handle the pounding. I should have a talk with him. He actually missed school today. It was a really bad idea, like last summer when he jumped off the playground tower and cracked bones that were brittle from lack of use. What was he thinking? I heard that phrase repeatedly from his doctors, friends, teachers.
So, I suppose I should be having a talk with him. THINK boy. You have limitations, for God's sake. Look before you leap. Count the cost. Accept your situation.
Here I sit, drinking my coffee, thinking all these grown up parenting thoughts. Here is the thought, though, that keeps coming back to me.
Screw maturity. Run. Jump. Fly, boy, fly. And never, ever let anyone say you can't.
That's what I have to say to you, and I will always be limping right behind you, while everyone else is on the sidelines watching and slowly shaking their heads in a very sensible way. Because even if your feet and legs don't work at all, I will be damned before I tell you your spirit can't soar.
Wednesday, April 14, 2010
I am ashamed to admit I have held it against her, all these years, poor Rebecca Mermelstein. Dr. Mermelstein, to you. And to me, but that is another story.
It was one of those moments where you remember every detail, what we were wearing, how the furniture was arranged, and how Marnie the perky social worker squeezed my hand. I knew it was going to be bad.
We had just completed weeks of testing, developmental, psychiatric, everything, for Jude. He had already received a diagnosis of PDD NOS, which means We Don't Know What the Hell Is Wrong With Your Child but We Suspect it Has Something to Do with Autism. This pronouncement is often followed by the We Just Don't Know That Much About the Brain speech, beloved by parents everywhere, who know it really means Don't Blame Me I Can't Fix Your Child. I was hoping for a glimmer of hope from the Divine Dr. M, as we had been calling her at home. She worked for the developmental nursery Jude attended in West Rogers Park that served the orthodox Jewish community. We found our way in there and loved it, feeling accepted and supported, and they adored Jude, in spite of the fact that he spent a lot of time screaming.
Dr. M told us that Jude was unable to do much of the testing, and when he did he was highly disorganized and easily overwhelmed. Most distressing, she said, was his lack of sense of self, and that he only recognized people who were important to him (his teacher, for example) in the context that he knew them in.
I responded appropriately, by crying a lot and then having to be coaxed from the ladies room.
When we got home I tried to throw the test results out the fifth floor window but Don said we might need them later. I told myself what I always did, that Jude was a sage and a poet and that no piece of paper could define him. Nope. Never.
Jude is ten now, and we just had him retested for the first time, because I was never, ever going through that again. We have worked like dogs the last six years, behavioral therapy, occupational, speech, play therapy, and therapy for me and the whole family including Grandma for God's sake. Somewhere along the line acceptance snuck in, and God gave me the grace, the mercy to enjoy my beautiful son, so perfect, so golden, revealing mysteries just a little at a time, like a complicated puzzle only I can put together. What a privilege.
We had to do it for school, though, the testing, and it made my stomach hurt. Marnie has since changed jobs, and now we have Elana, and Wendy, who are just as sweet but not as perky, which is fine. I brought tissues.
Dr. M started by saying her biggest finding was that Jude could do every bit of the testing with no modification. She said he has trouble thinking and learning sequentially, and learns everything Gestalt.
Done googling? Okay. I asked her if communication was his biggest obstacle. She smiled. He is a brilliant communicator, she says, it is as if he has been dropped in a foreign country and has figured out this fascinating way to communicate with metaphor.
I asked her for predictions, and she said, well, she supposed she wasn't very good at predictions, since she never would have predicted Jude would be this far at the age of ten.
I can see him becoming a poet, she says.
Oh, Dr. M.
We rode home in the sunshine, windows open, hands out the window. So different than the ride home years ago. God, it feels good when someone tells you something happy about your child. Brand new experience for me. I could get used to this.
The other night we were in Home Depot, in Skokie, looking for I don't know, wood or something, and I had made up a song about Dr. Mermelstein. It was a rap, really, saying all her names. Walking backwards reciting them while Don tried to pretend he did not know me.
Beks, Becca, Dr. M Bo Becca, and I ran into someone. I turned and I promise this is true, it was her. Dr. Rebecca Mermelstein, and she smiled the kindest smile I had ever seen, and I thought, the kind heart knows. Some things the heart just knows.