IEP, IFSP, PT, OT, LMNOP...RU KIDDING ME?

Short answer--no. I am not kidding you. When you have a kid with "issues", your life becomes a series of acronyms/initialisms/whatever the appropriate terminology is (I'm going to say acronym!) I've been thinking about them a lot lately because I have an IEP meeting this Friday. What is an IEP, you ask? I am here to answer that question! (And, OK, whenever I hear IEP, I automatically start singing, "You down with IEP? Yeah you know me! You down with IEP? Yeah you know me!") Sorry,  I was a teenager in the 90s, I can't help it.)

So I guess the question is--where do I start? I suppose I should start at the beginning--with the MRI. That was probably the one that started it all. Everyone probably knows what that stands for, right? MRI stands for Magnetic Resonance Imaging--it's a medical imaging technique used in radiology to visualize internal structures of the body in detail. Curtis had an MRI of his brain and it provided the neurologist with the information she needed for his diagnosis. The MRI set us up for the rest of the acronyms that would pretty much become part of our daily life. I'm going to try to list every stinkin' one that is or has been a part of Curtis' life. Hopefully I can remember them all! I'll try to give a brief definition (pulled from wikipedia or some other website) and then I'll let you know how it plays a part in Curtis' world. I'm going to try to go in chronological order, too. Let's see if I can manage that. 

Sound good? Here we go...

• PT--Physical Therapy. PT is a health care profession primarily concerned with the remediation of impairments and disabilities and the promotion of mobility, functional ability, quality of life and movement potential. We also call a physical therapist PT, as in "Curtis sees a PT 3 times a week" (and he really does see one that many times).
• AzEIP--Arizona Early Intervention Program. This was the program that we called when we first got the diagnosis. I found them on the internet (yes, the neurologist nor their office staff gave me any info--sad, right?) I had no idea what was going on or what to do and these two ladies came to my house, loved on Curtis, and explained everything.
• IFSP--Indivual Family Service Plan. This is a plan for special services for young children with developmental delays. The plan is made with the help of a service coordinator from an early intervention program. An IFSP only applies to children from birth to three years of age. Once a child turns 3, an IEP is put into place (I'll tell you what that is later). The IFSP includes goals and how such goals will be met--basically, which therapists will be assisting the child to meet the goals. Curtis had his first IFSP at 9 months old!
• OT--Occupational Therapy. OT is the use of treatments to develop, recover, or maintain the daily living and work skills of patients with a physical, mental or developmental condition. We also call an occupational therapist an OT, as in "Curtis sees an OT 3 times per week" (and he really does!)
• SLP--Speech Language Pathologist (otherwise known as a Speech Therapist). I couldn't find a good definition online, but I think everyone knows what a speech therapist does. Curtis sees his speech therapist twice a week when he goes to preschool. He is currently working on "consonant clusters" and the /k, g/ sounds. 
• CP--Cerebral Palsy. Curtis has spastic left hemiplegic cerebral palsy. Some people, especially on sites where this is any sort of chatting or talking about different types of CP, will further reduce it to LH for left hemiplegia or left-sided hemiplegia.
• SDRC--San Diego Regional Center. This is the organization in San Diego that helps people with developmental disabilities. I met with a service coordinator from SDRC when we first moved back to San Diego and they helped us get PT, OT, and speech services set up for Curtis. I had/have a lot of personal issues with this organization--I won't go into it in depth here. Our state is broke, which is sad, and I think the program has suffered greatly because of it. They are disorganized and dysfunctional to say the least. Unfortunate for those who need their help.
• EEG--Electroencephalography. OK, I could get all scientific on you, but this is basically the test they do to test for seizure activity in the brain. Curtis had his EEG at age 2.5. His results were negative for seizures, which was great news considering kids with cortical dysplasia usually have seizures. We're hoping it stays this way!
• CCS--California Children's Services. The California Children's Services (CCS) program provides diagnostic and treatment services, medical case management, and physical and occupational therapy services to children under age 21 years old with CCS-eligible medical conditions. Examples of CCS-eligible conditions include, but are not limited to, chronic medical conditions such as cystic fibrosis, hemophilia, cerebral palsy, muscular dystrophy, spina bifida, heart disease, cancer, traumatic injuries. At first, we were told we didn't qualify for these services since we had insurance and didn't meet the financial qualification. Alas, his medical diagnosis makes the financial requirement unnecessary. All these hoops, people! I'm telling you. It's complicated. You should see my files.
• MTU--Medical Therapy Unit. This is where a child receives their PT and/or OT services through CCS. There are usually several MTUs throughout a county and you are assigned to one based on your location. Ours is located about a half hour away. The drive it kind of a bummer and we are always late because it's in the morning not long after I have to get the other two kids off to school. Mornings are generally not great around here!
• IEP--Individualized Education Program.  An IEP defines the individualized objectives of a child who has been found with a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would. In all cases the IEP must be tailored to the individual student's needs as identified by the IEP evaluation process, and must especially help teachers and related service providers understand the student's disability and how the disability affects the learning process. Curtis' first IEP was put into place at age 3. This is when his services through SDRC were stopped and services through the school district began. The transfer process was scary and nerve-wracking. We had to go through a whole new set of evaluations, have meetings, set goals, sign stacks of paperwork, etc. We also had an unfortunate lapse in services. Curtis turned 3 in June and the school year didn't start until mid/late August. Legally SDRC didn't have to provide PT/OT/speech for him after June 19th, 2011. And they didn't. So we had to pay for 2 months of services out of pocket. Not cheap. Not fun. But definitely necessary.
• APE--Adaptive Physical Education. A carefully designed physical education instructional program for a learner with a disability. Basically, it's a half hour mini PE class for Curtis and a few other kiddos. They each have specific goals that they work towards. He has APE at school twice/week. I honestly don't know why they have this AND PT. I guess APE works more towards playground type goals. Whatever it is, I've watched sessions before and Curtis loves it. They play music and have fun. It's all good.
• IPP--Individual Program Planning. From the California Department of Developmental Services (DDS--ack another one!) website--the IPP "assists persons with developmental disabilities and their families to build their capacities and capabilities". This is some random meeting that I had with a new service coordinator from SDRC after our original coordinator was dumped (don't ask, she was no good). We did this when Curtis was 3--just after he started receiving services through the school district. I guess it was just a "re-grouping" sort of meeting. We were no longer getting services from them, so it wasn't an IFSP anymore. I don't know. Kind of useless.
• ESY--Extended School Year. In order to prevent any sort of regression, the school district provides some therapy services during part of the summer. This is called ESY. I think last summer Curtis had something like 3 weeks of OT and APE. No speech, which was a bummer. But something is better than nothing!
• FAPE--Free Appropriate Public Education. I honestly had no idea what this was until our IEP meeting last summer. Here's the definition: an educational program that is individualized to a specific child, designed to meet that child's unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit. Because of this, Curtis was allowed to be placed in the mainstream preschool class and be pulled out for his therapy sessions. It's confusing, but he still falls under special ed as he has an Orthopedic Impairment (OI--there's another one!). So Curtis' preschool was paid for by the school district, which was something I was not expecting. Now, this year, it could be something different. I was warned last year that since he's turning 5 this June, they might decide he's ready for kindergarten (he's not) and if I choose to keep him in preschool another year, it will be on my dime (that's fine with me). So we'll see how that goes--I'll know at the IEP meeting on Friday!

Now do you see what I mean about the craziness of all those acronyms/initials/whatnot? It's a lot to remember, right? And if you don't know what they mean and you have a child with disabilities--take my advice...you better learn them fast! Because, trust me, the doctors and therapists and teachers will all expect you to know them. Some people need to know more, some need to know less, and some are specific to certain states or areas, but some (like IEP, IFSP, PT, OT) are known by every parent of a child with a disability. It really is our second language. Get us in a room together and it is like we are speaking in code. Come to think of it, we should be able to count it as a language. You know, on an application or whatever. If someone could come up with a cool name for it, I think it should have a place down there right amongst French, Mandarin, Yiddish. Why not? For some of us, it's taken years to learn and perfect this language!

But, honestly, I wish my mind wasn't bogged down by all these letters and this 'secret language' sometimes. All of it makes my head mushy. And I probably wouldn't be thinking about these acronyms and all of this craziness if I wasn't worrying about this IEP meeting that's happening...tomorrow. If you know about those meetings, you know they are just--ugh. The meetings are pretty stressful, even if you are confident that things are going to be OK. And I am pretty confident about tomorrow. But you just really never know. I'm hoping things stay more or less status quo for Curtis for the coming school year. He's happy with his preschool and his therapy routine and my hope is that they are cool with things staying the way they are--only having him move up the next level of preschool, of course. I'm hoping they don't spring any big changes on me. So...

if you can--keep your fingers crossed for us for tomorrow!


And because I don't like blog posts without photos...

 This is my super fancy filing system for holding all of the acronyms in our life. This box holds all the IFSPs, IEPs, PT/OT/SLP evaluations, and various other shenanigans. All very important stuff. I refer to it all the time. I'm going to need another box soon.

 Curtis thought the box was pretty cool. "MOM! I see my name!" He proceeded to try to rip out all the files and mess up my whole system, but I distracted him with shiny things and candy :)

The Boy Who Grew Gills

I haven't really even been blogging long enough to include a link to the post about the swimming lesson mishap. You can just scroll down a bit to read about how they were, well, sort of a disaster for a while there. But, in case you don't want to scroll--here is the post.

Luckily, the swim instructors know what they are doing. Curtis' instructor has been in the water teaching kids for a long time, so when I approached her after his second lesson of full blown crying and asked her what I should do, I knew I would take her advice--whatever it was. What was the advice? To disappear. And that is what I did. The pool we go to has an area, right next to the pool (so I can still see everything and take a million photos and video) that is blocked off with some fencing. So, on that first day after she gave me my instructions, I just plopped Curtis in the pool, told him to have fun, and walked away. And guess what? He did fine. He did great, in fact. He had his best swimming lesson ever. And every lesson since then has been just as good, if not better. Now he doesn't want to get OUT of the pool! He actually cried yesterday because we had to LEAVE! He wanted ONE MORE TURN! Come on, kid, make up your mind! haha! Clearly, I'd rather have him crying because he loves it so much rather than screaming and shedding tears due to fear and the fact that he hates the water and wants to be out of the pool. So I'm OK with a little fussing over not wanting to get out of the pool. But only a little fussing. ;)

So, here it is--May 23, 2013--and I'm going to post a few videos of Curtis swimming. I can't believe it happened so fast. Mind you, we are still in the very early stages of swimming lessons! But I am honestly blown away by how quickly he picked this up. He is kicking his legs and moving his arms. The boy is on a mission! We are all so excited--big bro and big sis ask to see videos after every lesson (yes, they know I'm standing there, hiding, taking videos and photos--ha!)

Want to know what else is kinda cool? His OT told me the other day that his left hand seems like it's opening more and is more relaxed. She asked what we were doing differently and when I mentioned swimming her eyes lit up and she said, "I bet that's it! The swimming makes their body feel so different and he's moving that arm and hand around in the water so much!" How crazy is that? It could be totally unrelated--who knows--but both his OT and PT agree that swimming is great therapy for him. 

Here are a few videos for you of our little fish:

Make sure you put these videos on full screen mode since they were shot with my phone and from behind the secret fence so the quality isn't great. (Full screen mode is the little open box in the lower right-hand corner of the screen, just click on it and it will open the you tube thing up to full screen)--another tip is to click on the gear in the lower right corner and change the quality from "auto" to "480". This will make the picture MUCH clearer!

#1: Longer of the two videos, he's the one off to the right near the white thing on the side of the pool. He is swimming toward his instructor in the black baseball cap (and he disappears behind the blue milk crate for a second)

#2: Short video--again, make it full screen. You see him swimming to his instructor in the black cap.

Holy Shirt! And pants, and shoes, and...

Clothing. 

I think it must be every hemiplegic kid's nemesis. Have you ever tried getting dressed one-handed? If not, I think you should try it one morning. I did it, and I can tell you that it's not easy. Now try getting undressed. Try to put socks on. Try getting your pants down when you need to go to the "potty" really, really bad. ACK! It's so frustrating! 

Curtis is just getting to the age where he wants to dress and undress himself. "No, I'll do it all by myself, Mom!" is something I hear on a daily basis. Multiple times a day, actually. Sometimes I love to hear it. It means he's becoming more independent, that he wants to try more things and do more on his own--that's a good thing! But other times, like when we're trying to hurry out the door and he wants to put his own socks on and I know it's going to take eleventybillion hours to do it, I have to admit that I just sort of wish he'd let me do it. But I have to let him try. He's a big boy now. He has to know how to do these things.

There's kind of a lot of little things that these kids of ours have to know how to do. I mean, think about it. Underwear, shirt, pants, socks, shoes--all going the right direction or put on the proper foot. And don't get me started on buttons, snaps, those little hook things that they have on some pants instead of buttons or snaps, zippers, shoelaces, velcro, blaaaaaaaaaaomgsomanylittlethingsmyheadisgoingtoexplodehowwillheeverlearnitall! Phew.

So, I made a little list of the things he CAN do. And I'm pretty impressed by it, actually. For an almost 5-year-old with a functional right arm and only a "helper" for his left hand/arm, I think this is pretty darn good!

As of today, this is what he can do all by himself:

• put underwear on (OK, sometimes they're backwards, but we're cool with that) and take them off
• put elastic waistband pants or shorts on (again...backwards is OK here--we switch them sometimes before leaving the house) and take them off
• pull elastic waistband pants or shorts up and down well enough and fast enough to go potty on his own (not going to lie--I have to clean the bathroom floor more than I care to, but he IS a boy so I'd probably be doing that anyway)
• take socks off
• take shoes off

And this is what he can do with a little help:

• put socks on (this is pretty huge--socks are really hard to put on, especially when they're so small!)
• put a shirt on and take a shirt off (again--really hard to do one-handed or even with a helper hand)
• put slip-on shoes on (he can get the right one on, but not the left)

These are things that we work on daily. I wish we could say that we work on ALL of these things EVERY day, but, honestly, there just aren't enough hours in the day sometimes. Luckily, he does work on most of these things every Wednesday morning in occupational therapy at CCS (California Children's Services). Just to explain, his occupational therapist at CCS helps him work on what they call "medically relevant" things--like dressing himself. Her main purpose is to work on self-help skills or "activities of daily living". So she does different activities with Curtis to improve the function of his left hand and arm so he can do things like put on his own shirt and zip his own zipper--stuff like that. This differs from the occupational therapy that he gets twice/week through the school district, which is, obviously, geared toward helping him be successful in a learning environment.

I thought I'd include a little video that I took of Curtis practicing putting a shirt on last week at therapy. His therapist usually starts every session with him putting a shirt on. Sometimes she gets him to put shorts on and we also usually have him take his socks and shoes off and then put them back on. This will give you a good idea of just how hard he works. It might not look like much...but it's huge progress! (And notice how patient he is with himself, I love it.)

Note: we really aren't supposed to video in there, but no one else was in the shot, so I was given the OK. 

Also, there is lots of background noise in the video so you might just want to mute it--there were other people in the room that were talking REALLY LOUD and we were saying nothing, really, so if you mute you won't miss anything.

Enjoy!

Inspiration

Curtis has always been a timid little dude. He's always seemed to know his limitations. Which is something I've been grateful for. He's cautious. Maybe too cautious. But, again...I'm OK with that. Or, at least, I was OK with it.

He's getting older. He'll be 5 years old in less than two months! (Don't get me started...I have no idea how that happened so fast). And although I would still like for him to lean more towards being the "better safe than sorry" type, I also want him to try new things. I want him to push his limits a little. I want him to challenge himself. You have to understand--when I say this, I don't mean that I suddenly expect him to take HUGE risks. We're talking about a kid that just recently gathered up enough nerve to go down a slide. Baby steps.

Last week brought along something new for Curtis...swim lessons. No, it's not the first time he's been in the water. We are a water-loving family. And this kid is no exception. He loves water...

 Curtis in Grandma and Grandpa's pool--one year old

 on vacation--17 months old

 at the beach--21 months

playing in the Flathead River--2 years old

swimming at Grandma and Grandpa's again--age 3

vacation--4 1/2 years old

But swim lessons? This is new territory. Something different. I was unsure how he'd like them, to be honest. He doesn't mind having water poured over his head in the bath. He's OK with taking showers. But he isn't fond of going under water in the pool. I knew this would be a challenge for him. I also knew, from experience (my oldest went to this school when he was a baby), that this swim school would get his head under the water on the first day.

To my pleasant surprise, the first two lessons were fine! In fact, he loved day one. Loved it! He couldn't stop talking about it. Lesson two was good, as well.

Photographic evidence:

 Perfectly content--swim lesson #2
 

And then came lesson #3 just this past Monday. He cried almost the whole time. "I'm done, mom?" he asked repeatedly during the last 20 minutes of the 30 minute lesson. It broke my heart. I wanted to let him give up, I really did. I hate to see him scared and upset for any reason. I saw him tense up every time the instructor began to tilt him to the side to ease his face under the water. She is so gentle and so sweet, but as soon as he was done with his turn, he still cried.  

 Unhappy--I mean, does this break your heart or what?

So listening to him cry almost the whole time made me really upset, naturally. And it sounds awful, but I found myself sitting there wondering if this is all for nothing.

And then, of course, my mind wanders and I started to think about other activities, other sports, and whether he'll ever be able to "really" play them. Or whether he'll ever even WANT to. Maybe he won't want to because there will be something about his disability, his CP, that will hold him back. He'll think he can't do it, so he won't even want to try...that sort of thing. And just the thought of that makes me really sad, of course, because I loved playing sports as a kid. I loved being on a team. And I really think Curtis would like to play a team sport! But what if he just can't? I mean, he plays soccer in the backyard with his sister. And we play t-ball out back. But can he play on a team? And what about that swimming??

I swear to you, all of this garbage is going through my head on Monday after that ill-fated swim lesson. And I'm getting bummed. Curtis is napping...pooped out from all that swimming and crying. So I decide to hop on my phone and go on Facebook and look at this new group I joined a few weeks back. The organization is called CHASA and it stands for Children's Hemiplegia and Stroke Association. They have a regular group on FB where you can post questions or comments and then another page called the "Happy Place" where you go to post awesome things that your kid has done or achievements they've made or milestones they've met...things like that.

So I jump on the "Happy Place" (I needed some good news) and the first thing I see is this video of a little boy, Connor. He is 9 years old and he plays baseball--on a regular team. He has right-sided hemiplegia (so the opposite side from Curtis). The video below is of him hitting in his first RBI. You have to watch this, I think it's just awesome...

(A big thank you to his mom for allowing me to post this on the blog.)

So I watched this (OK, so maybe I watched it like 5 times) and all my doom and gloom went away. It was just the thing I needed to see and at just the right moment. Curtis can do these things, he really can! If you've been on his new FB page then you've seen the little video I posted of him hitting the ball off the tee. I mean, why couldn't he play for a team? What was I thinking? And he loves the water, so it's just a matter of him getting over his fears and whatever weirdness is going on with these swim lessons before he can learn to swim. Right? Why am I giving up on him so easily? Why am I second-guessing him and his possibilities?

I just have to say that this is why I love, love, love this new group that I've found on Facebook. Seeing the things they post about their kids (kids just like Curtis!) and what they can do has given me so much hope! I recently asked if any of their kids could swim and several of them responded that, yes, their kids swim, and they swim well. Some are even on the swim team for their school. Wow! Talk about inspiration. 

Time to push the limits, Curtis! You can do it, dude! If you can go down a slide--something we thought you'd never ever do, not in a bazillion years-- then you can do anything!

--I wrote this post on Tuesday, April 30th but didn't publish it. 
Curtis had another swim lesson today, Wednesday, May 1st. He cried again. We made him push through the lesson, though. I asked the instructor what would help--should I get in the pool with him or should I disappear? She suggested disappearing, since he looks at me right after he's done with his turn and says, "I want my mommy!" Ugh. I had to hold back tears today. It was awful. I was both sad and frustrated. Tough day. 
But...I'm not giving up on him! I look forward to sharing videos of him swimming one day! 
Stay tuned...