The tough gets tougher

Clearly I’m not a great blogger.
I apologize if you are someone who actually reads this!
My last post was April 2018–nearly one year ago. Crazy.
So much has happened since then. Curtis finished out third grade. He had a great year. He made new friends, loved his teacher—just had an all-around good year.

Summer was fun and went by much too fast, as always. Curtis spent about a week in Oregon with his brother and sister and dad. They all visited with his dad’s side of the family and had fun camping and exploring Oregon and the Oregon coastline. I have never been away from any of my kids for longer than a day or two so that was an adjustment for me!! After a week, I picked the kids up in Portland and we went on to explore Seattle then went off to Montana to visit with family.

It was a fun summer trip, but not without its challenges. Curtis’s behavior was all over the place. He was almost impossible to bring out to restaurants and was having more frequent bathroom accidents. I always made the excuses of “he’s out of his routine” or “he’s tired from walking around/staying up late”—but I knew this wasn’t “normal”. It was just hard to travel with him—and his siblings were becoming increasingly frustrated with being around him a lot of the time. Not an ideal family situation and not how anyone wants their vacation to go.

We finished up the summer and prepared for everyone to start their new school year!
Curtis is now in 4th grade. I had high hopes for this year—I knew it was going to be more challenging, but we had everything in place in his IEP. We had such great second and third grade teachers and are at such an amazing school.

It wasn’t long before the bubble was burst on that dream. Nothing was working out. His teacher didn’t seem to understand Curtis and his needs and we had a lot of drama very early on in the school year (think “emergency” IEP meetings and lots of discussions with my advocate). There were a lot of safety issues that weren’t being addressed at the school and it took months to get things back into place with that. I won’t go into specifics—but let me say that no parent should ever have to put up
the fight that Curtis’s father and I did for 2-3 months. Meetings, emails, phone calls, signatures—not to mention the anxiety, stress, and sleepless nights. Luckily, most of the school issues have resolved. Yes, it’s mid-February, but they’re resolved.

During this time, things at home with Curtis we’re getting increasingly worse. More bathroom accidents, memory problems, behavior issues. He was at a neurologist appointment when I brought this up. The neurologist was still concerned that he might be having seizures but she didn’t want to make him go through another video EEG. Instead, we increased his seizure meds—by half a pill then a full pill. The change was almost instaneous. He went from having bathroom accidents 4-5 times per week (maybe more) to none. He no longer asked me questions like, “did I go to school today?” after spending a full day at school (yes—those moments scared me—how could he forget a full day of school? But he was. And more than just a few times). We have kept his seizure meds dosage up. Since then he’s had one episode where he’s had an accident and seemed to have memory loss after. We are continuing to keep an eye on this, but assuming he’s having episodes of seizures. This, of course, terrifies me.


A few months ago he had neuropsych testing done again, too. The results came back mostly the same. She still gave him a diagnosis of ADHD (impulsive type), among other things. He has learning disabilities. He has a lot going on. We have seen a lot of outbursts with him recently, he’s always been impulsive, and most of the school-related stuff was spot-on. So, basically— a lot of what she said fit with what we’ve seen. And, honestly, the 30 page report was A LOT to digest. Still trying to process most of it.

We only have about 4 months left of school and Curtis still doesn’t entirely seem to have found his groove this year. Socially he’s struggling. He only has a few kids that will even give him the time of day and I think his outbursts sometimes make those relationships rocky. One of his best friends from last year was a little boy that had just moved here from another state. That kiddo moved away again. His longtime best friend is still around—but this year things are not the same somehow. As he is getting older, Curtis is more aware of his differences—and the other kids at school are less understanding and less interested in making sure that he is “part of the group”. I am concerned that Curtis will literally have no one to spend time with. The thought devastates me.

Curtis is a tough kid. I have done so many things to try to understand him and his complexities. It’s so, so hard. I can put him through a 72 hour EEG and a 6 hour neuropsych rest. I can get a 30 page report that tells me all I should want to know about how he thinks and learns and I still feel like I can’t figure him out a majority of the time. Maybe I never will. Like I said, he’s tough a one.
But not so tough that he doesn’t deserve love. And my fear is that, especially as he gets older and bigger, people around him will stop wanting to try to understand him. They will only judge him. They will see his shortcomings and failures and instead of giving him a chance, they won’t bother.

You can’t protect your kids forever—isn’t that something they say? But I’ll try. I really will. Even if I seem overbearing and whatever else. I’ll try to protect him forever. And I’ll also hope that even though he’s having tough times now, and will surely have tough times in the future, that people can see him and show him love. Because it’s the only way to make it through the toughest of times! ❤️

Summer, School, and other Stuff

It's August and summer is coming to a close. I know I say it every year, but it really seemed to go by so fast. In 11 days, Curtis starts kindergarten! My mind is blown! On Tuesday he goes in for his little kindergarten "assessment". My biggest concern? The fact that we have to be there at 8:00am! (We've been sleeping in until 7:30 or sometimes even 8:00am, which is late in this household). 

I had to start a whole new system for school paperwork for Curtis now that he's starting kindergarten. If you recall, I showed you my system for all of Curtis' "stuff", including his school IEP papers, in this post. That filing case is filled to the brim and about ready to burst. And even though there is a method to the madness, it really is a mess. In kindergarten, Curtis will still have an IEP (he already has on in place, actually). I also met and spoke with the school nurse over the summer to discuss his medical needs. We had spoken on the phone prior to the seizure, but after the seizure I found out that getting him to school would require a lot more paperwork. I filled out what I could and the rest went on to his neurologist and pediatrician. 

In any case, here are a few photos, because they always seem to shock people (including me) when I show them all spread out. 

Here they are in their folder 

And all spread out...

Yes, that is just the preschool years paperwork. 2 years. Crazy, right?

Here is what we have going for kindergarten so far... 

And this is the new set-up for kindergarten paperwork. It's more portable (so I can take it with me to IEP meetings, meetings with the school nurse, even to his doctor appts if I have forms that need to be filled out).

crappy iphone photo, apologies

I won't even bother with getting into my fears and anxieties over the start of kindergarten (maybe I'll save that for another post on another night). They are there, as they would be even if everything about him was "normal" health-wise. It's just how it is. I'm accepting these feelings and trying to not let them overcome me. Believe it or not, I'm actually sleeping well at night. Will that change as the first day draws nearer? Probably. But I think Curtis can succeed in school, as long as his health remains stable. And so far we seem OK with that...

After the seizure I kept a very close eye on Curtis (still do, obviously). He did have some strange activity, especially while sleeping. Lots of movement, strange things with his eyes and lots of head movements, leg movements. I was told to take videos and so I did. Tirelessly. 

This is a photo of my computer while I'm watching a video of Curtis sleeping. I'd set up a camera and record him napping, because that is when he'd jerk and move around the most. Then I'd watch the video.

I must have spent hours taking and looking at videos. Some will be shown to the neurologist and discussed with her. Maybe this was side effects from his meds? Or seizure activity? Most of it has settled down now (he's still sleeping in our bed)--all I really see from him now is leg jerks, like restless leg syndrome. During the day he has seemed fine and I haven't seen anything that resembles a seizure. I did see what appeared to be one or two absence seizures right after he came home from the hospital. But nothing since. 

Curtis had an MRI last week. This is something that was scheduled after he left the hospital in May and they ordered it just make sure that nothing new was present in his brain. I don't know the results yet, but I will be getting them tomorrow at his neurology appointment. We haven't seen his neurologist since his hospital stay after the seizure. I'm assuming that no news is good news, but I will give an update on that on the Facebook page tomorrow or over the weekend. Going in for that MRI was stressful, no doubt, but Curtis was a champ. 

Post-MRI popsicle

Those sleepy anesthesia eyes...

My boy is such a trouper. He was so scared to get on the bed to even start the process. He cried and cried (as did I). But when it was done, he was completely fine. No tears, no problems at all. God, I love him! 

Moving on to several totally different subjects and a lot of photos all at once :)

In case you don't follow on Facebook or Instagram...or even if you do...

This has been our summer...

Curtis graduated from preschool

And he turned SIX!

We renewed our Legoland passes and his love affair with Benny and the Spaceship! continues :)

We just got back from our annual summer family vacation in Montana, which is always amazing. Curtis once again let loose and did some things he doesn't usually do. You can read about our trip last year here. He loved the canoe and the paddleboard and did both on his own a bit. He swam in the lake in our "secret spot" all on his own, which he's never done before. He's really showing some independence (just another sign that he's ready for kindergarten)! 

Standing on a paddle board in some shallow water--great for testing balance

Lake McDonald, Glacier Park...playing with rocks and sticks

We have been having some issues with loud noises and at first Curtis didn't like riding in the boat because he thought it was too loud...

But he warmed up to it pretty fast...

And soon was going crazy with me and loved to go fast :)

Venturing out of the boat and into the lake to swim! So brave!!

Swimming with big bro and sis in the lake! They were so excited!

We have been going to the beach and swimming and doing some school shopping--soaking in the last few days of summer. 

What's Right for Lefty?

Curtis has always been my most lovey-dovey child. He is the only one of my three kids that has ever told me that I'm his best friend. He is the snuggliest. He loves to hug. He also says, "I love you", way more than the other two ever did at age 5. Lately, just over the past few weeks, he has started this thing where he will grab me, look me in the eyes, and say, "I love you, Mommy". He does it just about every day. He's realized that if he gets me to stop what I'm doing and if he looks right at me when he says it, it will be more powerful. And one other thing--it's not always "Mommy". Sometimes it's "Mom". That sure sign that they're getting older--that transition from "Mommy" to "Mom". Heartbreaking. *sigh*

Anyhow...my point? My boy/my little lovebug/my best friend is getting so big! 

Curtis will be finishing up with preschool in June. His last day of preschool will also be his 6th birthday. It will be a miracle if I don't shed a tear on that day.

As Curtis makes the transition to kindergarten, there is so much to think about. It wasn't like this with my other kids. They just finished preschool and off to kinder they went. It's so different when you have a kid with special needs. There are so many decisions that have to be made along the way. My head has been spinning. My anxiety has been high, this past week, especially. I've tossed and turned at night. Sometimes I wish I could trust that it will all work out on its own, but I know from experience (my own and that of others) that you can't do that. It is my job to know what is going on with him and to be involved with this process. It is my duty to make sure that his plan for kindergarten is appropriate. It's a stressful task.

For the past few months, Curtis' therapists and teachers at school have been examining and evaluating him. He has been evaluated for both his triennial evaluation (his initial eval was when he entered the school system in 2011, so this eval is required since it's been three years) and for his transition into kindergarten. He's had speech, physical therapy, occupational therapy, and adaptive PE evals. He's been observed in the classroom setting and on the playground. I wasn't happy with a recent speech evaluation that they performed (or rather, with the lack or preparedness on the therapist's part), so I made sure that they had everything they needed ahead of time (doctor records, previous therapy evals, etc.). Can I just take a moment to tell you that if you have a child in the school system (any school system) that is undergoing evaluations of any type--make sure that the people doing the evaluations have the background information on your child. This can be very important! Other than that, I've just had to wait until they were done. I don't know that it will ever get easier to know that Curtis has to sit through those tests. I have been there when he has taken some of them--and a few of them we even filled out at home. It's all very unnerving. Some of it necessary, yes.  

The big meeting to discuss all of this is coming up. Is Curtis ready to move on to a general education kindergarten classroom? Yes. I know he is, no doubt about it. My biggest concerns for Curtis entering kindergarten at this point are 1) safety and 2) falling behind academically due to his lack of fine motor skills. I already know that they don't want to provide him with an aide in the classroom. Am I OK with this? I don't know. Honestly, I don't! Does he need the aide for all of the little tasks in the classroom, or will this just become a crutch and prevent him from progressing on his own? I just don't know. I suppose no one really does. It's a wait-and-see game, and I hate that. I'm a planner. I don't like "wait-and-see". 

If you had asked me a few months ago how I thought Curtis would fare in kindergarten without an aide, I probably would have said I thought he would be OK. But here we are, a month away from finishing up with preschool and there are still things that Curtis has difficulty with--things that "typical" kids his age should be able to do without much assistance from their kindergarten teacher. A few of my concerns: 1) He still has what I would consider a lot of difficulty with writing. He can print some letters, but he can't write them on a straight line. He has trouble grasping the pencil properly. I work on it with him and his OT works on it, but it's just coming along really slowly. 2) Cutting with scissors--straight line cutting is fine, anything else is a mess. And he gets frustrated and ends up ripping the paper. He'd never be able to do a cutting project (or any two-handed project) without one-on-one help in the classroom. Basically, any sort of fine motor skills are still an issue. He's getting better, but he still needs a lot of help. 3) Potty issues. We are still dealing with semi-frequent potty accidents. Some of this is because he has a hard time getting his pants on and off, some of it is just because. I can't get a straight answer out of any doctor as to why he still has potty issues at almost 6 years old. 4) Playground safety. Curtis+ 80 other five and six-year-olds running around like crazy people=danger. His balance is improving tremendously, but it's definitely not 100%. And he gets nervous around large groups. A bunch of little kids jumping and pushing each other on that playground structure just gives me anxiety. End of story.  

Curtis IS doing really great with a lot of things, however. He is beginning to read. I am blown away by all of the sight words he knows. Socially, he has come a long way since he first started preschool. He loves to be in the classroom environment. He also loves to make friends and to be around other kids. He is SO excited for kindergarten (even though I'm not sure he understands it just yet...I'm still trying to explain to him that all of his preschool buddies won't be there). And I'm excited for him.

I don't know yet what the therapists and teachers will suggest for him. My goal? A kindergarten environment that will be both safe and that will provide the best scenario for him to succeed in the classroom. Let's see what sort of plan we can come up with. He will be getting an all new "team" since he's going to a new school next year and I'm hoping to meet a few of them at the meeting. Fingers crossed that everyone is on board to do what is right for Curtis!

 

Quick School Update

I just realized that some people aren't on Facebook and therefore don't get the little updates that I post on the All About Lefty Facebook page. 

In my last post, I talked about Curtis' upcoming IEP meeting. I was nervous. Always am with those things. Long story short--it went great. Curtis will be at the same preschool next year, but we will be bumping him up to the 4 year old class. He will continue with PT, OT, APE, and speech. The OT and speech will decrease to one half hour session/week instead of two half hour sessions. APE will remain two sessions/week. 

Sometime during January/February of 2014 we will be meeting to discuss his transition to kindergarten. Just the thought makes me anxious. I really want him to go to the same elementary school as his older siblings. I think that shouldn't be a problem. As long as he continues to do as well as he's been doing, there's no reason for him to go elsewhere. If something changes and he needs more assistance, there are other schools within the district that might be a better fit. Of course, we will pick the school that is best for him. Even though I know big bro and big sis would be devastated. They've wanted him at their school for so long. So this next year I'm really going to try my best to get Curtis physically and socially ready for that leap into kinder. For his sake and for big bro and big sis. Hoping we can make that happen! 

For now, we're just happy with where we're at for next year. 

Summer starts in two weeks. 

Curtis turns FIVE in 10 days.

WOW!

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 :)