Drag Chute Deployed

It’s unclear if ‘hitting a wall’, ‘run over by a truck’ would be the better descriptor for my state today. I suppose it is not unexpected, and that I should have known this was inevitable. The good news is, I know it’s just another passing wave. I think I know what happened… life finally slowed down.

For so long… (weeks. months. years? yeah) I’ve been in that state of odd grace where if you move fast enough, if you just move quickly enough and don’tdon’tdon’t stop no matter what, then your inertia carries you. Its been so long since I could even dare to consider stopping- yet now I finally find myself in a resting place. A place where if I keep up the frenetic pace, it harms me, and no longer serves- a place where I must be still. And I’m finding that disconcerting and dizzying.

My kids are three weeks into school now. Everyone is okay. Jeffrey has conquered the football mess, and discovered Robotics club and kids he feels at-home with. Bean has had his IEP and his team is making accommodations and he’s doing better. Abby is happy and loves first grade, and had changed her favorite color from pink to purple. The move is done, the chaos is done, the boxes are all unpacked, the car is registered, the paperwork is all changed and official. The sun of the season of upheaval seems to have set, and I’m in an odd new twilight to which my eyes have yet to adjust.

All I want to do is sleep.

When I sent the kids off to school this morning, I sat down on the couch and immediately fell into a deep, nearly painful sleep. Good Morning America had turned into Rachel Ray, and my phone was ringing, muffled somewhere under my blanket. I didn’t care. I made no effort to even answer, rolled over, and fell back into hard sleep.

On Tuesday, I got in a minor fender-bender. When I say minor, I mean there weren’t even any dents or paint transfer on either bumper, but the other car insisted on calling the police. We waited in the 7-Eleven parking lot for the officer to show up, hands shaking because it’s been years and years since I was in an accident, for the officer to come tell us there was no damage so she couldn’t even file a police report. Merciful.

To be sure, I still have things to do- GWU wants me to take the MAT, and there might be some changes coming to my program. I’m not nervous at all- I take tests well and change isn’t scary when that’s all you know. So sure, there are still things that must be taken care of, must be done and crossed off the list, but life is no longer requiring me to run as though my hair were on fire. Which is good, since I don’t have any anymore anyway…

Change. It’s what’s for dinner. I’m going back to sleep.

Bean: Living with Sheldon

I live with Sheldon Cooper. It’s all very funny on TV, but in real life, the insane logic is only occasionally as amusing. Take this morning…

On arriving at the bus stop, the rather large and ungainly group of children began to gather for the bus as it pulled to a stop. Bean had been adequately fed (very important in coping ability) and had pulled out of the tailspin brought on by his birthday cake falling on the floor last night (it was a very bad night- anyone with an ASD kid knows how much fun it is when things don’t *go right*), and we had successfully completed the writing homework (always a head-banging nightmare) that had been torn up after school yesterday. Things were looking up.

Then the typical children did what typical children will do… they didn’t obey the order of the universe, and instead of lining up right, logically and orderly, they “clumped”. Standing close, I could see his color rise and his arms tense up, as he attempted, very briefly, to explain to the kids near him that they needed to line up and not get in a “clump”. Clumping is bad, clearly. Of course, no one listened to him. His face got redder and I could see him gritting his teeth, as another child jostled him in the “clump” and he started to vocalize. This, of course, makes the other kids turn around and look at him like he’s crazy. Awesome. In the space of 0.2 seconds, we now have a situation.

He runs into a clump of trees, and throws his backpack and water bottle. He’s purple faced with indignation that NO ONE IS DOING IT RIGHT!!! and he’s yelling. It’s fantastic. If the children would only behave logically, the world would continue to spin. Only, since this is not a 22 minutes sitcom, and all will not be resolved with laughter and an eyeroll, I lose my cool, grab him, and haul him back to our townhouse. (Abby got on the bus with the “clump” children just fine, thankyouverymuch)

He needs to reset. He glares at me, indignant frustration oozing from his red face and he keeps trying to tell me if “…everyone would just do what they’re supposed to do!!” I shhhhh him and go upstairs so we can both cool down. I get dressed and try to figure out what he needs. Here’s where Sheldon and the BBT help me… He needs logic. He needs to understand the math and science and logic behind behavior that makes no sense to him.

I go back downstairs and get a piece of paper and a crayon, and invite him to the table with me. Explaining what an “arial view” is, I draw our neighborhood and the bus stop, and the bus pulling up to the curb. I put in the trees and the sidewalk and our house. Using small hollow circles to represent children, and a solid colored-in circle to represent him, I draw him a diagram of how he wishes the children would line up at the bus, and then change the diagram to show the “clump”- then I illustrate, by moving the circles, how even though the “clump” looks illogical and disorderly, the children all still get on the bus through a series of small movement. I place his solid circle in the drawing and show him how if he follows Abby’s circle, he will still be able to board the bus, despite what looks like chaos to him.

It worked.

Glory be and hallelujah, it worked. Thank you, Sheldon. Bean and I both thank you. Dear lord this parenting thing is hard. On a wing and a prayer. Thank you. 

Happy Birthday, Bean!

Dear Bean,

Happy Birthday, my dear son. As I write this, in the pre-dawn of your birthday, I think back to nine years ago, in another pre-dawn, when you began your entrance to world. Right now, you’re still asleep, but I’m slightly surprised, since you are our rooster and wake the house before the sun on most mornings. I have a pan of bacon and french toast with fresh nutmeg (your favorite non-peanut butter food) in the oven, and I suspect the smell will waft up to you soon. I’m hoping, this quiet morning without distraction, it might be one of those rare days where you snuggle next to me and let me hug you. While I love hugs from all of my children, a hug from you is something special.

I know this year has been hard on you, with your disdain for change, but you’ve weathered it like a champ. When we started this journey as a retooled family, you were the child I was worried most about— but it turns out, you’ve been just fine. It seems you pack along your special issues, and you basically tell everyone else to take a flying leap. It’s been a joy to watch you deal with challenging situations with a certain flair and panache that surprised me. It makes me wonder what other wonderful things you keep inside the puzzle that is you.

Bean, this dance we do as mother and son is not an easy one– I don’t know how it is for other kids with autism and their mothers, but I know for us, as you struggle to teach me about you, and I try and set aside my own expectations and meet you on the field of who you actually are, I wouldn’t trade you for anything or anyone in the world. The steps of the dance will change as we both grow and learn to communicate, and that’s a beautiful thing- even if it’s unnerving sometimes. If you know nothing else, know this, my sweet son— come what may, I will always meet you.

I love you. Thank you for being my son. Happy Birthday!

Mama

Prepping a New School for a SpEd Kid

Three yellow slips in one day. It’s the sixth day of school. You know, I thought I did my homework. I thought I did my prep-work. I had the IEP transferred from Washington state to Virginia this summer. I contacted the district. I went to the school weeks before school started and introduced myself and Bean to the principal and the staff. I have had phone conversations with the teacher. They claim to have all read his IEP “with a fine-tooth comb”. SO WHY IS MY CHILD COMING HOME WITH DISCIPLINE SLIPS that are appropriate for a neurotypical child?!

Bean HAS autism. It’s long and well-established. There is a trail of doctor evaluations, testing, medical results, occupational therapy, physical therapy, special schools, psychologists and specialists behind us lasting nearly seven years. He functions at a fairly high level, relative to himself of several years ago. He does not, and probably will never, function at the level of his neurotypical peers. When that measuring stick is used, he will fail, and fail SPECTACULARLY. Every. Single. Time.

There are modifications made to his homework schedule in his IEP. Now, I understand that and IEP is a legally binding document, and thus the language used is chosen very very carefully. I’ve written extensively about it- for heaven’s sake, I’m getting a double master’s degree in Autism Studies and Special Ed- I get it! There’s a substantive difference between a modification and an accommodation. The previous is something the teacher agrees to do to help the student, the latter is something the staff is legally obligated to do under Federal legislation, namely, IDEA (Individuals with Disabilities Education Act). I’m not a n00b, folks.

So WHY is a PE teacher touching my child? Why is he being given standardized disciplinary warnings that do not appear to have any reference to his educators having read or understanding his IEP? From my reading, it appears the exact wrong things have been done to deal with him. Behavior issues can and should be diffused, and there are ways to do that– touching him, disciplining him in front of the classroom, and upping the stress by sending him home with referrals and threats he doesn’t even understand is decidedly unhelpful.

So. Guess what I’m doing tomorrow? I don’t have a chip on my shoulder, but I am prepared and comfortable being my child’s advocate. I know the teachers are busy at the beginning of the year, and that my child is only one of twenty-plus in the classroom. I understand this, but if we are going to perpetuate the currently popular trend of Inclusion and Immersion for SpEd kids, the support must be there. I know my stuff folks, and while we may be new here in Virginia, we are not new to this process. I’m coming in, and I’m coming armed with information, expectations, and a decided ability to communicate. Let’s get these ducks in a row, and let’s never see another yellow slip come home again.

Goodbye to Sandra Dee

I’m cutting my hair off. It’s time. It may take me a few weeks to screw up the courage to actually do it, but it’s time for this long hot mess to be chopped. I’ve had this hair for more than a decade, and I need something new. I’m thinking shoulder length, blonde and something that works with my curls but lets me flatiron it when I want to look put together. I’m thinking something like this, both cut and color:

Thoughts? Opinions? What say you, mighty internets?

Remembering James V. DeBlase

This is a repost of a tribute I wrote for Jimmy DeBlase, who was killed eleven years ago today.

deblase.jamesHis friends called him Jimmy D, and he was probably the only Dallas Cowboy football fan in all of New Jersey; he was certainly their most fervent!

Jimmy was born in lower Manhattan, and grew up playing football in the streets of Little Italy. He grew up with two brothers, Anthony and Ritchie. His wife, Marion, remembers meeting Jimmy in 1978, when his team, “Carmine’s Animals” had just won a neighborhood championship. Jimmy’s (perplexing to local New Yorkers) love of the Dallas Cowboys is something he passed onto his three sons, Nicholas, Joseph and James, even going to far as taking them to Dallas to see the team play. The neighborhood kids called him Coach Jimmy- he was very involved in his sons lives, coaching them not only in football, but baseball and basketball as well.

In Lower Manhattan, Jimmy attended St. Joseph’s Elementary School, and went on to Bishop DuBois high school, where he excelled at athletics. After high school, Jimmy decided football would not be his career path, and enrolled in Baruch College, known for it’s business courses as opposed to athletics.

After college, Jimmy and Marion made their home in Manalapan, New Jersey, and Jimmy worked on Wall Street for 14 years as a dealer at Oppenheimer. He joined Cantor Fitzgerald in October 1999 as a USA Bond-broker.

Jimmy was at work in the North Tower on the 106th floor on the morning of September 11, 2001. His brother Anthony was in Tower 2, and was fortunate enough to make it out. Anthony spent days after the attack looking for his brother. Jimmy’s body has never been recovered.

His godson, Robet Netzel, has this to say about his godfather:

Uncle Jim, you are a hero to Aunt Marion and the boys. We miss you so much. We are all in this together to help your family from here on in. I will take your boys under my wing as best as possible. You have been a great inspiration for your boys to be the best that they can be in life and as their coach, you helped make them some of the best players out there. Keep a safe watch over all of your family and shine down on them. Jimmy D, your are the best.

Please take a moment and pause to remember the innocent people, such as Jimmy D, who were taken from us eleven years ago today.

The Hidey Hole

One of the first things I loved about our townhouse, despite how much smaller it is that even Little House, was the odd cupboard under a pass-thru to the dining area. It’s small and has double doors, and the previous owners had wired it with electricity inside, I assume for a bar area perhaps. But for me… all I could think was BEAN will LOVE this.

And sure enough… it’s become his personal spot. It’s too small and tight for Jeffrey to get in— though he’s tried— and Abby can’t fit either. Bean has filled it with pillows, a lamp, books, his blanket, and a dvd player. When life gets too tough, or he need to reset, I send him to the Hidey Hole. Some evenings, he even has his dinner in there. If he’s having a particularly hard time, I set his dinner outside the door, knock lightly, and leave him be. He inevitably comes out soon after, reset and happy again.

I wish everyone had a Hidey Hole.