Friday Brain Dump

I’m reading Sula again. I’m spellbound, completely wrapped up in the pictures Toni Morrison paints with words, and it leaves me feeling like an inadequately juvenile and wretched writer. Like a child hammering on Motzart’s harpsichord. Like I should throw my pens in the trashcan and go cook dinner instead. Only I’d never throw my Mont Blanc away.

I made it through the first season on LOST on Hulu, but I had to make myself watch the last three episodes. No interest whatsoever in watching season 2. But I am thoroughly enjoying Mad Men. The characters are way more interesting, complex, nuanced. I’ve been told it’s a character flaw that I lost interest in LOST. Whatevs…

Bean ate a fishstick tonight. If you have an ASD kid, you know that warrants a ticker-tape parade.

The YMCA interviewed and snaped a couple pictures of me and the kids for a promo piece they are doing after reading my blog, particularly the pieces I wrote about my first visits earlier this year. They have also asked about filming a 3-5 minute promotional mini-film. Weird and surreal.

My nose and forehead is still peeling from last Saturday’s garage sale. It’s cute, too, let me tell you. Great sheets of red skin bubbling and rolling off. Lovely.

Very tentatively, it looks like potty-training armageddon might have actually worked. Abby is completely out of pull-ups during the day, and is actually noticing when she’s got to pee. It’s a miracle.

We roasted marshmallows over the gas burners tonight and had indoor s’mores. Bean ate those too- but he likes marshmallows, chocolate and graham crackers, and giving the boy access to fire is a sure thing.

My plate is very full, and I’m trying to walk the line between tackling things one at a time, not panicking, and actually accomplishing things. It feels like as long as I don’t look down, I’ll be fine, but it’s really hard to keep my eyes trained on the horizon. Slippery. Dangerous. But at the same time, I feel like I have to look down, and maybe if I do, the ground really will be much closer than I think. I have to decide what’s more scary- knowing, or not.

Bean wants a fish. Jeffrey wants a new bird. Nevermind that we have three of them. Abby wants a lightsaber. Go figure.

My textbooks are almost all here, and I get to print my syllabus on Monday and then I can get started on my reading. No idea how this is going to effect my blogging, writing, or creativity. But for better or worse, this is the new ride. Get in, and buckle up.

Mo is moving tomorrow. Lalalalalalala…. can’t hear you.

What’s an IEP: A Primer

Yesterday I met with Bean’s team of educators and specialists at the school district offices for his semi-annual Individual Education Plan (IEP). I you have a kid on the autism spectrum, special needs, or any other learning disability, be it neurological or physical, you will someday have the first of many of theses meetings. In just over a week, I am back at the University full time to get my advanced degree in Special Ed, so I imagine I will have a completely different perspective to add as I someday sit on the other side of the table, but for now, this is about being the mom, and facing a team of 6 (almost always) women who specialize in educating kids like mine.

Bean’s diagnosis is PDD-NOS, which stands for Pervasive Developemental Disorder- Not Otherwise Specified. This means he falls on the autism spectrum, and is a fancy way of saying so. Autism Spectrum Disorder is also referred to as ASD. When he was first diagnosed, he was given the marker of Aspergers, but that has since been removed from the American Psychiatric Association’s Official Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Yeah, I know. Lots of big words. PDD-NOS simply indicates less severe forms of ASD on the diagnostic scheme. It’s even been proposed in the DSM-V to  replace PDD-NOS completely with ASD. Confused yet?

Let me preface this by saying the first IEP can be scary, as I was unfamiliar with a lot of the terms, wording and legalese that the educators must use. I read all I could, asked a ton of questions, and have generally experienced this team to have my son’s best interests in mind when making decisions. All that said, ultimately I am the parent, and I have the right and obligation to say yes or no to anything I find questionable or concerning. It can be intimidating, but remember that you know your child best.

So there I am, sitting at a table across from six women who are in charge of directing my son’s education. The women (or sometimes men) are: The district psychologist overseeing my son’s case (each child is assigned), a speech pathologist, a Special Ed teacher who will be handling my son on a daily basis, an Occupational Therapist (OT), a Physical Therapist (PT) and the regular Ed teacher. Occasionally I’ve head the school psych sit in, as well as others from the district office. Like I said, it can be intimidating. But don’t be- you will come to love love love the OT and PT, because they- along with the SpEd teacher- are the one who are going to work miracles with your child.

There are legal requirements for public school districts to meet the needs of children with disabilities. This is part of why things are so official and representatives from the district are present. It’s to protect them, but also to protect your child, and make sure he gets all the help he needs and qualifies for. Remember that when it feels like too much.

If you’ve gotten to the point where you are sitting at an IEP, your child has a medically diagnosed need. You don’t get an IEP if you are having a hard time, or if your kid is just struggling. IEP are for kids with verified, medically diagnosed disorders or learning disabilities.

Before my first IEP with Bean, when he was just 4, he came in with such a clear diagnosis the OT and PT scheduled an observation time beforehand so they could assess him. When we then sat down to write his education plan, they already had notes on what he needed, independent of what I shared. This is where an amalgamation of many minds really helps. The OT and PT notes from their professional perspective, added those to what I  shared, and the SpEd teacher then adds her piece, and suddenly we have a working plan for helping this child. It really is a team sport.

The teachers will discuss areas your child may need:

  • Physical Therapy: this is actual large motor therapy. For Bean, this meant deep-muscle work, tactile experiences, brushing, weighted vests and sensory processing experiences.
  • Occupational Therapy: This is generally more small-motor and fine muscle coordination. Things like holding a pencil and learning to press down at the same time ( a not uncommon difficulty in ASD kids), using scissors, making marks on paper, pincer grasp, pouring, serving, small manipulatives.
  • Speech Pathology: Verbal skills, oral communications, forming words and giving verbal cues to function within a community. Again, very very common problems in ASD kids.
  • Special Education: This is a teacher who has received extensive training in dealing with children who have developmental disabilities. (this is where I am pursuing my MA)
  • Regular Education: Even a child who qualifies for SpEd will eventually have a regular Ed teacher, with whom the SpEd teacher works closely. The goal in almost all school districts is now to mainstream SpEd kids into neurotypical classrooms, with support staff from the OT, PT and SpEd teachers. It’s a big day when your child transitions to a regular Ed classroom.

There is a lot of dialogue at an IEP. The teachers and therapists have a great deal of skill and information, but they cannot create a plan for your child that will be successful without your input.  The district psychologist then facilitates the legal side of making sure the plan is written properly and all people present are on-board and sign on the dotted line. Literally. Once everyone signs, this is a binding document, and the educators will follow the plan as laid-out, until the next IEP meeting.

Bean’s first plan, two years ago, (and actually his most recent as well) I requested time to look it over and read some more before I signed it. I don’t think they were thrilled about it, but it was necessary for me to feel educated and informed before I signed off. Recently, his team wanted to make some changes to his plan, and I declined signing the papers, instead asking for a meeting with the team so we could talk about it as a group. It took some finagling, but I had to follow my gut, and that was what yesterday’s meeting was actually concerning.

Overall, my experience with IEPs has been positive. I have found the people who specialize in this field do so because they really care about making a difference with my child, and they care about facilitating his growth and learning. They have also been Bean’s biggest cheerleaders as he reaches his benchmarks and moves on to the next set of goals. I truly love his team, and am so grateful for what they have done for him.

Mo

Four and half years ago, my belly swelling with baby #3, I walked into a taco stand. A few days before, I’d received a tentative email from another mama about my blog; she had surmised by some weather posts I’d put up that we might, just maybe, live in the same area. We emailed back and forth, both a little cagey about giving personal details, and finally arrived at Yes. She’d been reading my blog for a while, and I hers. Turned out our boys were closely matched in age, and we lived about 20 miles from each other. So we agreed to meet.

That mama was Mo, and anyone who’s been reading me for very long knows what Mo has come to mean to me. I’ve met dozens of friends from the blogs now, but back then, it was still new and scary. I have wonderful friends via writing- people I dearly love and count among my treasures… but there is no one like Mo.

That first day, she brought along not only her two sons, but also a buffer friend, just in case I turned out to be some weirdo. Little did she know… Or me. We hung at the taco stand until our kids got too rowdy, and them headed to the mall, where she’d brought a roll of quarters and her friend fed the coins into the mechanical horses and cars while Mo and I sat on a bench and talked. And talked. And talked some more. We were both a little cautious still, but she was so easy to be around, so easy to like.

One of the many things I’ve learned from Mo over the years is to just put myself out there. Just do it. The first few times she came over, I was surprised at how comfortable she made herself, how long the visits lasted. I was used to the more formal LDS friends I’d made in my transplant Washington- they came, chatted, our kids played, they left. The end. Not Mo. She told me in Alaska, where she grew up, everything was so far that when you went visitin’ you visited. When she came by, I could count on them for lunch, and maybe dinner. There was nothing formal or stiff about it. She was so open, so honest, so generous with herself.

My track record with friends isn’t so hot. I don’t trust people easily, and always feel like the other shoe is going to drop at some point. It’s happened enough in my life that I’m warry. Shortly after we met, I got a card in the mail that simply said “Shoes are for wearing, not dropping. ~Mo”.

Over the ensuing years, we’ve celebrated the births of two daughters, countless birthdays, every Thanksgiving and a couple of Christmases, and unknown regular old days. We’ve moved each other, we’ve lived through her husband being deployed to Iraq, him being gone for much of a pregnancy, the diagnosis of two of our children with Autism spectrum disorders, the deaths of grandparents, marriages of friends, and the crater blown into the center of my own life by my divorce. We’ve been in the temple together, we’ve cooked holiday meals, shared secrets, and wiped each other’s tears. We’ve hung out with each other’s parents and in-laws, disciplined each other’s kids, cleaned up messes, and helped put back together broken pieces of shattered hearts.

From Mo I learned that I don’t have to fit any particular model or ideal to be who I want to be. I learned, through her example, that I could take off a cultural shoe that was just too damn tight, and be the kind of Saint I wanted to be. I learned that a woman with pink hair and tattoos had as much claim to our shared faith as any person I have ever met. I learned I could be whomever I wanted to be, and be really good at it, no matter what anyone else thought of me.  I also learned how to wield my make-up brushes like a Ninja, and how to rock blue eyeshadow. I’m serious- it can be done.

In less than two weeks, Mo is moving. This is a good thing for their family, and I knew one day this would happen- it’s a fact of life for military families. I will be there to help load the truck, and I will be there to help clean their house. I will see her again, and I rejoice that she’s going to be working in a place she is excited about, and that her new house has not only a yard, but a basement where she can throw the monkeys- somethings she’s never had as long as I’ve known her. I am so happy for her.

But I can’t pretend anymore that this is not really hard for me. In a year that has cost me everything, I am losing my best friend, too. And my heart is breaking. I know she is not really gone, and I’ll see her- but our days of lazily hanging out around my kitchen table, in whatever form it takes, are coming to an end. And dammit, I’m going to miss her.

It’s only fitting that this chapter ends as it began- with the blog. So for all the universe, here is my heart. Here is my friend. I’m going to cry for a little bit. Then I’m going to pick myself up and go help her pack. And I’m going to make sure she knows how very much I love her.

Micro Brain Dump

  • Had a garage sale yesterday.  Did okay, but since it was first sunny day in 700 years, I got burned to a crisp before I even realized it was warm. My forehead and nose look like blistered watermelon. It’s rainy and overcast again today. I guess that was summer
  • Took all three kids with some family friends to an art fair in the park last night. It went… tentatively well. I do have to figure out how to make a swinging hammock chair for Bean… it was like flipping a shark over and rubbing it’s stomach- he became utterly comatose in the sample. Google, help a mama find some directions to make one…
  • I’ve caught myself saying things I swore I would never say: This is why we can’t have nice things! How many times do I have to tell you?  What were you thinking? So help me, if I have to remind you again! Chew with your mouth closed! And so on. My decent into madness continues…
  • Some guy at the garage sale asked if I had any guns or ammo for sale. Is that even legal? Who shops for guns at a garage sale??
  • Things are hard. That’s probably why I haven’t had much to say lately. They’re just sucky and hard, and I’m not dealing with it as well as I want to. It’ll all be fine, and big picture, we’re okay.

A Conversation with Bean

Bean: Mom? When I grow up, I want to have a cute house. A cute little house, with poles in the front.

Me: Oh yeah? What makes a house cute to you?

Bean: Well, I like it when they are small. I like when they have flowers, and are painted a cute color. I like when there are poles in the front by the door, nice green plants, and a place for sitting.

Me: That does sound like a nice house. Can you show me a house you like as we drive?

Bean, scanning the neighborhood as we head to the chiropractor: Well, I like that one, and I like the poles on that one, and the fence on that one- but not the color. Can we paint our house a cute color, Mom?

Me: Sure, we can paint our house. What color do you think is cute?

Bean: I  think I would like a pale chartreuse.

Me: ….uh…. um… Bean? Do you know what color is chartreuse?

Bean, dreamily as he looks out the window: It’s a pretty light green with a lot of yellow, and I think it would make the cutest house.

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Whatcha Makin’ Son?

Abby had to pee four times in the grocery store- but I think it was more about the Dyson Air Blades than it was about actual bladder control- so when I finally reached in my purse to pay from my mountain of groceries, I was already on the annoyed side of the fence. Pulling out my wallet, I found this little list, written on the back of a piece of origami paper. Before Jeffrey left for school, he had mentioned something about picking up some things he wanted from the market- I just wasn’t expecting quite… this.

I’m still struggling with why he needs concrete molds. I can see super glue- I mean, it’s super, and it’s glue! What’s not to love? But concrete molds? Unless perhaps he was hoping the request for Hot Pockets would seem sane after asking for concrete molds…?