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 :)