Friday, February 22, 2013

I Need An Acronym Like I Need A Hole In The Head

My little one is getting close to three years old. I barely know how it happened, but he is getting ready to transition to preschool. In the world of diagnoses, turning three isn't just about "preschool". It's about Services. When Elijah was born, we contacted what is called (in California) The Regional Center. The Regional Center (We'll call it the RC from here on out) helps to provide children and family who have specific diagnoses, with the services they need- things like Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy (ST) and even Child Development Services (CDS) which is kind of like "Play therapy:" Phew! Did you follow that?  Well, this became my life- understanding it, becoming an advocate for it, fighting for it, being willing to become "the high maintenance Mom" for it. Whatev. The squeaky wheel gets the grease and all that.

I am someone who has always had an opinion. If something needs to be "talked about", I do it. It's not always comfortable, but I've been willing to do it. However, when it comes to the paperwork and the red tape and fighting authorities on what one might need? ...Not my strength. I avoid paperwork and red tape like the plague. Until I had Elijah. My Mama Bear instinct kicked in and I was warned: You might have to fight for what you want. That worried me. (Again: Not my strength.) We ended up with an RC Coordinator who, while very good at his job overall, does. not. return. phone. calls. promptly. I should say now, that in the big picture of things, I'm glad we got who we got. I learned to be the squeaky wheel. I even learned how to make phone calls and to leave voicemail messages that go something like this: "Hi _______________! This is Jennifer Currier, Elijah Currier's Mom, I left you a message on Monday and Thursday of last week and haven't heard back from you. I really need to hear back from you this week as SOON as possible. I am going to begin my call and email campaign, EVERY. DAY., MULTIPLE. TIMES. A. DAY until I hear back from you. SO, perhaps you can call me back sooner than later. Thaa-anks! :) Love you... mean it... bye! (Ok, I didn't really say Love you, Mean it. But you get the gist.)

In the course of "fighting", I have learned a lot about the system that is in place to help children with special needs and their families.  Let me just say...there is a LOT of "lingo" that goes with it. But, nothing prepared me for the impending round of assessments to get Elijah ready for preschool. 

I met with our RC coordinator and a representative from the Los Angeles Unified School District (LAUSD) to have what is called a "Transition Meeting" to begin to prepare the paperwork for Elijah to be transitioned out of the RC and into LAUSD- into a preschool program, where he'll only receive services that help him to "navigate the classroom".  So, over the next 4 weeks Elijah has APPOINTMENTS: He has an Audio/ Hearing And Health Screening next week, he has a discharge meeting with the program he is currently attending, I am taking a tour of two of the available LAUSD programs that he might be able to attend, and then Elijah has a 2 hour assessment by a team of psychologists, physical and adaptive therapists, a speech therapist, and an occupational therapist to assess what he be capable of and what he'll need to begin preschool. Cleansing breath.

I attended the transition meeting without Elijah- giving my perspective of where he's at and what he's doing. They had the paperwork wrong. The LAUSD representative passed me a printed sheet to approve. I read: Elijah sat up at 15 months, crawled at 12 months and walked at 12 months. I was like, "Whoa Nelly!" Elijah isn't walking at 2.9 months, much less at 12 months!!!! The service coordinator and LAUSD representative suddenly looked at me, alarmed. Why not?? Umm.."Well", I said, "He seems to have particularly low muscle tone in his core...maybe even lower than typical for other kids with Down syndrome....but he is getting there. He is cruising and walking with some support, but he just isn't there yet." The two coordinators breathed a big sigh of relief. I continued to read: Child is diagnosed with Down's Syndrome. I stopped, looked up at the LAUSD representative, took a breath and said, "Did you know that it is not called Down'S Syndrome?? There is actually no apostrophe "s". It is called Down. syndrome."  She said, "REALLY??! I had no idea. I thought it was based after the doctor who discovered it." I told her that yes, it is just Down. I also didn't realize the difference, but when we received Elijah's diagnosis, that I researched it all and learned that it is Down syndrome, not Down's. We continued.

I escaped the transition meeting unscathed. It was fairly harmless- just a meeting to discuss briefly where Elijah is developmentally. I was told we would be contacted for appointments and assigned an LAUSD representative. I spoke with our Representative on the phone this week. She seems knowledgeable and prompt. She emailed me a confirmation of Elijah's assessment meeting. I wrote her back asking if we could tour some of the available programs, and asked about one in particular that I had heard good things about. She wrote me back and said, "Oh...well, if it is the KIT program, that is designed for our AUT children. The PSM is the same as the other program you'll see and  the PCC is what we'll discuss but is not typically recommended for our incoming 3 year olds." I was like BTFU (Back the fuck up)...WTH (What the hell) are you talking about??? LOL. (Instead, I wrote, I have NO IDEA what you just said. Please repeat: In English.)

I'm getting the vibe that it's a whole new world. kinda sucks. I was just getting used to the old world and had finally figured that one out. Now I'm all.... WTH. LOL. I need a BFF who can BYOB.

I know I made no sense there, but frankly those are the only acronyms I know. I need to figure out how to help my son get what he needs. I don't need another acronym. I need another acronym like I need a hole in the head.

Which is...well, not at all.

P.S. When I spell-checked this blog, all of the acronyms were highlighted in bright yellow as being Wrong.

That was my point.

Wednesday, February 20, 2013

When life gives you dead animals...put on the gas mask

There's that saying, "When life gives you lemons, make lemonade!" But, it's not ever as if life does give you lemons. What's wrong with lemons? How did a lemon get a bad rap? Why is it that the poor citrus of lemon goodness got the reputation of being the bad one? Your car is bad, must be a lemon. Doesn't make sense to me. Perhaps because I am in the extreme camp of lemon loving.  And after this week, I say that if "Lemon" is really the best negative these people can come up with, then these "sayings" were really written by people who have no business writing "sayings".
Jus saying.
How about, "When life hands you a dead animal, decaying and rotting under your house for a week, then...put on your friggin' gas mask and get that sucker out."?? I think it has a great ring to it. But, maybe that's just because that was my week.  And this was my husband:


What? You don't own a gas mask?? That is because you do not have the extreme pleasure of being married to my husband: eccentric, historian, lover of all things...things, brainiac, weirdo. (Just kidding, honey. I love you and am extremely grateful that I did not have to be the one to crawl under our house to remove the perpetrator. But if I had, I totally would have stolen your gas mask to do it with...I mean, what else is it good for?? ) (Who am I kidding? I would have made chili and burned candles until the smell was gone 3 months later. There would have been no gas mask. No dead animal retrieval at all...)

So... all of that was by 8am. 8. a. m. I should have taken the hours between waking and 8am as a sign.

On the way to take Elijah to program today, I stopped at a stoplight as large wafts of radiator-smelling smoke began enveloping my car. Temperature gauge remained in the steady, so...??? I was already warned that my radiator had a small hole and would need replacing as soon as I had the freedom to leave the car for a whole day. I still owed my mechanic a balance, so I thought now was as good a time as any to get caught up on payment. I drove in under my puff of smoke. These guys love me, but they'd rather never see me, and I feel the same. This place has become a virtual second home. I help myself to coffee. I use their stinky bathroom. We talk about our kids, exchanging stories of whose kid did what and we remind ourselves that we're just not alone in this endeavor called parenting. It's not entirely unpleasant.

Two hours later, I had the car temporarily fixed (still need to take it in for that full day radiator replacement) and I was on my way.

I forgot to mention: All of this happened while my Mother in Law was in town. My Mother in Law, who we see about once a year. Welcome to our stinky house and our broken cars! Make yourself comfortable! Luckily, I am incredibly blessed by a Mother in Law who easily rolls with the punches and manages a nearly straight face as her son dons a jump suit, gas mask and long rubber gloves to retrieve a dead animal from under the house. Love you, Bev!

(We did manage at least one touristy, fun outing to the La Brea Tar Pits...)

La Brea Tar Pit

We sent Charles' Mom off with love and delved straight back into our busy, daily lives. We have been needing to create a living trust for some time now, and the time had finally come to get the wheels turning in this regard. We made an appointment with a referred lawyer and showed up for our appointment last week. The lawyer came out to the waiting room to greet us, asked a couple of questions and when she noticed that we needed a Special Needs clause she asked what the diagnosis was. I told her our youngest son has Down syndrome. She flipped her hair and said, as she was leading us into her office, "Well, they say that's the Cadillac of all Special Needs!!"

I snort laughed. Or maybe I was having a slight smell memory of the dead Possum we (read: my husband) found under our house. What I should have said (I always, ALWAYS think of the best things to say only after the jaw dropping occasion) was, You shouldn't say that. You shouldn't EVER say that again. me. It only works if you might be saying this to an expectant Mother who is feeling devastated by a diagnosis of Down syndrome. Then, and maybe only then, might it be taken in a positive light. I'll just say this: Once a person has a child...with ANY kind of special need, they are IN IT. They have a balanced life just like anyone, with maybe a few extra low lows, but also maybe a few extra high highs. They don't need to be made to "feel better". One could argue that the person is just well meaning and trying to be kind, but I would counter with, What do they have to be "well meaning" and kind about? That is where most parents who have a child with special needs, feel their spines prickle. How about treating them like any other child? How about treating a diagnosis as any other trait, like blond hair? We can revisit and rewrite our lawyer's question and response: What is his diagnosis? He has Down syndrome. (insert new answer) Oh, okay.
It's just so much simpler than most people make it.
No gas mask necessary. :)