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.


Vanessa Johnson said...

Wow, Jenny! I could never have imagined how complicated sending a kid to school could get, but good for you for pushing hard. I also thought Down Syndrome had an apostrophe, so thank you for the education. Keep fighting!

Kel said...

If she was British then Down's syndrome would have been acceptable. :)

Sounds like a mess to wade through. I'm interested to hear more as this will be me in a few years.

Kel said...

If she was British then Down's syndrome would have been acceptable. :)

Sounds like a mess to wade through. I'm interested to hear more as this will be me in a few years.

Jennifer Currier said...

Nope. Not British. :) Though I'm curious how it is different in another country?

Hailey Murray said...

We use Down's Syndrome in Australia, too. And I did a lot of media training to use appropriate terms and always write in people-first language when speaking about people with special needs, like "a child with Down's Syndrome" and not the awful "a Down's baby" which still makes me shudder when I hear it. Must just be a quirk of the language? But keep fighting, Jen. You'll learn the acronyms. You've learned so much already and he is lucky to have an advocate like you who will never give up until you get what he needs. And of course, you are lucky to have him too. I'll be interested if you do read "After Visiting Friends," the author has some really insightful words about family and how all families have challenges, some visible, some secrets. Visible seems best to me. I love how open you are in this blog. Keep fighting, keep talking, keep sharing. It's powerful and I feel like I learn something or see something from another angle every time you write. Best of luck with "transition" and those stupid acronyms!

Becca said...

I was *terrified* of acronyms when we started out on this journey. I had absolutely no idea how on earth I'd be able to learn them all, remember what they all mean. But then I realized that they would unfold as we need them, and I could relax a bit, knowing most of them would come to me as I went along. I'm still a bit fuzzy on some of the ones I *think* I *should* need right now, and there are some that I know are coming down the pipeline in a year or so, but until then I'm content to wait patiently. :-)

P said...

I am a numbers person so I do NOT know or care about acronyms besides two letter ones. I shorten the name or MIX UP the letters (DSRTF? dSrFT-what are those words and grrr; SEPLA selpa who the f cares and they have their OWN parent / teacher exec board I hear 5 years later???!!! Oh boy -- note SEPLA is only in my area; yours is called something way different).

Then a sage mom 18 months ahead of us notes: and they change them all the time.

Then you realize teachers & coordinators & therapists & administrator & principals superintendents Spec needs school experts inclusion or maybe reading experts--well they RETIRE get sick and have babies. It's a long strange trip. Build your support and refresh & renew it but don't get too wrapped up

And best advice is to not listen to advice! Trust your finely tuned intuition.

P said...

And thanks for the script. I had that coordinators sister. Who moved to D C depressed or to follow her dreams I forget. I am going to save that & use it with my extended family too perhaps.

P said...

I THINK Down's is okay in UK but more commonly its Downs no '. Not 100% sure but thats what I see from my side of the pond.

Down's baby is all good there too; for many & used by parents with kiddies over ten often I believe & have seen (both sides of pond on Facebook actually. family & extended family). I do think many newly diagnosed & enlightened long term globally connected avocates respect or tolerate the American semantics & passion for people first.

For me I don't bristle but sigh about the INTOLERAanT view of the DS community first (discounting all future communication and ideas of said offender regardless of where professionally or globally the Said offender is). I have NO issue with its use, agree with the concepts and I do corrections and generally redirect if necessary (medical or educational contact, not passing parent at the park).

I do agree that people first is respectful and needed to preserve dignity. I HAVE struggled with "getting it" at first and still struggle with presenting the point (as highly relevant and why--I know Patti McVeys do you call me FAT Patti? No. But that's as far as I easily get.)

I had a discussion at LENGTH with friends & extended family over a FAN DSALA used at the twentywonder fundraising event (attracts a wide non-DS audience). The people first canned quips DONT TRANSLATE outside of spec needs families too readily. Spec needs don't all align but do all get offended. I'm worried about CK (cancer kid--really? Yes oh my) and think twice about "deaf child"--again okay!