Tuesday, April 20, 2010

Storm Season

Every spring. Every spring it seems we go through this, the meltdowns, the sudden inability of Jude to regulate himself at all. Just last week he was happy, playing, sweet, funny. Now the storms have come, blowing in with no warning and wreaking havoc on our lives. I am hanging on for dear life.

I know why some children pound their heads. Sometimes you just have to do something.

Screaming one minute, sobbing broken hearted the next. Waves, wind. Every year it gets harder because he gets bigger. I don't want him to hurt himself, or anyone else. I wish I could stand there and absorb the blows, if it would make anything better. It might make me feel better, but I don't know why. If someone you love has never screamed in agony while you stood by helplessly, you are very lucky, very blessed.

When a storm comes. you have to hold on tight. Wait it out. Try not to get hurt. Things can be replaced, right? Isn't that what they always say? Toys, doors, stuff get broken, and my heart, my heart gets broken, over and over and over again, and I have to convince myself, one more time, that there is someone asleep in the boat, unconcerned, and that it will be okay when He wants it to be, and not one minute before that, and that we will not be lost, no, it will be alright in the end.

Friday, April 16, 2010

Fly Boy

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

The Education of the Divine Dr. M

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.