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! ❤️

School Daze

I am happy to report that we are done with week 3 of kindergarten! Curtis is a happy camper. In turn, mama is also a happy camper.

Here are some photos from the first day of school--

(many are repeats if you follow us on Facebook or Instagram) 

 Curtis meeting his kindergarten teacher...

Testing out his new playground...

Below is a photo from his first ever "Circle Time" in his kindergarten class. The parents were allowed to stay in the back of the room while the teacher read a book to the kids. The story was "The Kissing Hand", and it was impossible to hear the teacher read it without getting tears in my eyes and a huge lump in my throat. In fact, I was cussing her out under my breath. I wasn't alone. Curtis is in class with a few kids whose moms are my dear friends. We looked at each other with frowny faces and red eyes. These are our babies--the youngest of three kids for each of us. We wanted to run out of the class so they wouldn't see us crying, yet at the same time wanted to savor this sweet moment--to cherish every last second and stay in that room as long as we could before the last "goodbye" and hug. When the story was over, the kids were allowed to come and give us a kiss on our hand so we could keep it with us all day. Curtis choked up for a second when he said goodbye to me and I thought I was really going to start sobbing in front of everyone. I thought he might lose it, too. But then he turned around...brave boy...and he went back to his class. And I turned on my heels and bolted out of the class so neither one of us could look back.

And then...6+ hours later...we were reunited. I could not wait to get this boy back in my arms!

So how have the first 3 weeks of kindergarten been for this boy? Mostly FABULOUS. He is always all smiles when I pick him up. We have had great reports from his teacher (whom I absolutely love so far...thank GOD). The school staff is AMAZING, and SUPPORTIVE in any and all ways that I could ever have hoped for...I am so grateful for all of them. 

 I won't lie to you, though. We have had some issues. #1--we've had a few potty problems. We (teacher, nurse, supporting staff) all are still thinking that it's adjusting to new routines. The teacher and the rest of the staff are working on reminding him to use the potty. I'm working on limiting drinks before school and having him use the potty prior to heading off to class. Fatigue could also be a factor. This leads me to the next problem...#2--he's tired. Just exhausted and in a daze at the end of the day. And a sleepy Curtis is a grumpy Curtis and a grumpy Curtis is not a fun Curtis. By the time we walk home he is often crying and/or screaming at me and/or his siblings. It's a mess. With after school activities we really don't have time for naps anymore. It's an adjustment. We're still working on it. 

As far as class work goes, he seems to be doing OK. We have a formal meeting coming up in a few weeks. It's his 30 day review, and I'll be meeting with his teacher, therapists, and case manager to see how he's doing. I know he needs A LOT of work on his writing still. I see the sheets that come home and I know they are already working on it with him, but he has a long, long way to go. We are still working on it at home a little, too, when I can get him to cooperate with me. He always works much better with his therapists!

Here is a little project he worked on during the first week of school. It's a house depicting the members of his family: light blue=dad, green=mom, purple=sister, blue=him and his brother, yellow=his pets (he only included the cat and dog, no room for the 7 chickens).

So--during the second week of school I received an email in the middle of the day from his teacher. She wrote to tell me that they pulled the tricycles out during recess. The only problem? Curtis' seizure action plan has a note stating that he must wear a helmet when riding a bicycle (or a horse!). So...Curtis was not allowed to ride the tricycles and I needed to bring in a helmet for him to use at school. My initial thought? "This is crazy! It's a tricycle!" 

The seizure action plan form that his neurologist filled out had a few things that were pre-set, standard items already filled out on the form. Examples: "always wear a helmet when riding bikes or horses", "never leave alone in water", "don't linger in high places". I did not think that "bike" included tricycles. I mean...how far is he doing to fall off a trike?? Nonetheless, I know the school rules and told them I'd call the neurologist and hopefully they'd send me a note saying he could ride a trike without a helmet. What was my big deal? I didn't want him to be the only kid on the playground wearing a damn helmet! Sounds stupid, but, yes, that was it. I just really would rather he not stand out in any way if at all possible. However, in the meantime, I sent him to school with a helmet. He loves to ride trikes and I didn't want him to miss the opportunity the next day while we waited to hear back from the neurologist! (See below...in our driveway on his own trike.) 

So I left a voicemail with his neurologist and a day later heard back from her assistant. Here's the deal--she DOES want him wearing a helmet. Even on a tricycle!! 

Wow. Lesson learned.

Here he is at home...now wearing a helmet at all times on his tricycle!

More fun happened during that second week of school! We received a call one morning that Curtis was stung in the face by a bee. He went to the nurse's office and said he felt OK to go back to class but they called to let us know it happened. I'm proud he was so brave to stay in class!  Not sure my older kids would have chosen to do so!

This is a photo of him from later that night--he was stung right below his left eye. You can see how it was starting to swell up later that night. 

So...the next morning when he woke up it looked like this!! YIKES!!!

We decided it was probably best to not send him to school looking like this. He went to the pediatrician in the morning and checked out OK and ended up back at school at around lunch time. It took a good 4 days for the swelling around that eye to go away. Terrible!! My poor buddy!

As if things haven't been crazy enough with trying to adjust to new school schedules and running around AFTER school with big bro and sis to all their stuff--Curtis just decided this week that he absolutely had to get back to swim lessons. I agreed that he was long overdue! We have been meaning to get him back for weeks now, but couldn't figure out how to work them in. Well, there's no time better than the present, and we squeezed those lessons in. Thursday was his first official day back at Callan Swim School and he did great. All the swimming at grandma and grandpa's this summer surely helped!! 

{Sorry, no swimming photos--next time!}

We are ready to tackle week 4. I think every week is just going to get better and better. Will we/he figure out the potty issues? Yes, (god, I hope so!). Will the fatigue and grouchiness go away? I think he's still just adjusting so, yes, I do think it will. The academic stuff? Handwriting and whatnot? He is finally starting his therapy services and I just know that I will start to see a huge improvement once those go into full effect (especially once OT gets cracking!) 

Like I said at the beginning--he's happy. He wants to go to school and is comfortable there and hasn't cried or whined or ever said that he doesn't want to go. To me, that is success! That is half the battle, maybe more than half the battle! The other things we can work on as long as he's content with being at school. 

So, I say YAY!!! 

The Night Before The Big Day

Well, this is it. Tomorrow is the big day. Kindergarten. The day we have been working toward and preparing for for so long is finally here. 

I know in my last blog post I said that I was OK. That even though I was thinking about his first day, my anxiety wasn't consuming me. Well, as of a few days ago, it started to consume me. Insomnia (my old friend). Mini crying spells in the middle of the day. More crying at night. Constant stress and anxiety throughout the day with all the "what-ifs" going through my head. It's just so hard sometimes--the struggle between knowing that I have to give him a chance to do everything that any other kid would do, but at the same time wanting to protect him and keep him safe. 

When you have a child with special needs, sometimes you forget how "different" they are until you see them around a large group of "typical" children. Curtis hasn't been in school for a few months so I really kind of forgot how he stacked up to other kindergarten-aged kids. On Friday, his school had a pre-arranged kindergarten play date. They do this every year on the Friday before school starts, which is the day the kids get their teacher assignments. It's a chance for the kids and parents to hang out and say hello before the first day of school. Curtis was excited to go see a few friends of his, and the park where the play date is always held is right around the corner from our house. Within the first 2 minutes of being there, I was reminded of how different Curtis is from other 5 and 6 year olds. These kids were running around. Jumping. Racing up the play structure and speeding down the slide--lightning fast! Up on a grass hill they were playing "duck, duck, goose" and Curtis sat down to join while I stood back and watched. He sat there in amazement (as did I) while these boys and girls ran so fast around that little circle. And I felt so sad. Curtis will never run like that. Or jump like those other kids, or go up and down the play structure so fast. In fact, he was so overwhelmed by it all that after the first few minutes he just wanted to go home. And I didn't blame him. Because I did, too, a little. All those kids moving so fast worried me. I kept thinking that if one of them bumped into Curtis he was going to fall down and cry. And then I thought, "What if that happens when he's at school and I'm not there to comfort him after he falls?" Ugh. Anxiety. 

I just have to take a deep breath and keep my fingers crossed that he'll be OK. Hopefully he finds some other kids in his class that are a little more low-key and they can all play in the sandbox together!

So how does Curtis feel about school? He could not be more excited. When we went in last week for his little assessment at the school, he was disappointed to find out he wasn't staying there for the day. 

Tonight, we got his new backpack--a Christmas present from last year (thanks Aunt Laura and Uncle Loyd)--and stuck it on the hook next to his big brother and big sister's backpacks. Yes, he has a crazy spiky backpack--and he loves it!! 

Then he asked if we could get the lunchboxes out, so we did that, too. He's been wanting to get his lunchbox out and use it ever since it came in the mail about 3 weeks ago.

We also have his outfit all picked out and waiting. His big sister helped with that. I don't think Curtis really cares about that all too much--ha!

Also, to update on the post from last week for those of you who don't get the Facebook posts--Curtis' MRI came back the same as it was when he was a baby. Nothing new, which is good and what we all expected. His next neurology visit is in 4 months unless something happens before then (no thank you!) The neurologist wrote up Curtis' seizure action plan for school while we were there, too. Of course, while I believe the school staff is great, I really, really, really hope that plan never needs to go into effect. 

This sweet boy of mine...

He is snoozin' up a storm tonight and ready to take on kindergarten tomorrow. Even with all my fears, I am so, so excited for him. He's been looking forward to being a big kid and going to his brother and sister's school for so long. Now the day is here. 

Good luck, lover! We are cheering for you!!

xoxo

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!

 

Overdue December Update

I just realized that I never updated after my last "vent" post.

So we had the meeting and I think it went well. 

The good news: there is a new OT at the school and so far I like her A LOT. She seems really with it, on top of things, etc. Complete 180 from the other OT so far. She totally agreed with me about the handwriting goal and said she was "surprised that he didn't already have one." We added it to his IEP. Boom. Just like that. Easy-peasy. Yay.

In the end, I didn't push adding extra hours of OT because they showed me that he was already almost caught up on hours. I have the OT's email and she responds when I email her (something that never happened with the other OT) and see I her around the school (also something that never happened with the other OT)...I'm feeling comfortable with her and with the team's promise that they will "stay on top of it". Trust me...I will keep on them! 

Curtis' speech therapist came in and said that he is doing great. She is going to do a formal evaluation on him in a few months and we are all meeting again to review that evaluation. It is her belief that he will be ready to be released from speech. I have talked to some friends who have kids or have had their kids in speech and they have mixed feelings about this. If anyone has any advice for me about this, please let me know. Curtis has been in speech therapy since he was a baby. On the one hand, I think I'm almost afraid to let him leave speech therapy. Like--what will he do without it? Will he be OK? And on the other hand, I think--WOW, look at him! I never in a bazillion years thought he'd make it this far. To think that we went from being told he may never speak, to having him bounce out of speech therapy before he starts elementary school. It's really unbelievable.    

His preschool teacher was at the meeting. I had told her a few days before that I didn't think she needed to be present at the meeting, but now I'm glad she was there. She really backed me up on a few things, which was great. She also piped in that Curtis' social skills were really "blossoming" this year. It's always nice to hear things like that.

We are all meeting again in a few months. That is when we discuss the speech eval and I think we might also have an early chat about kindergarten. I did ask if they thought he'd be placed in a kinder class at his brother and sister's school. Unfortunately, they can't really say--it's all a matter of what is best for him and every school in the district has something a little different in terms of what they offer for kids with special needs. Of course I want the best fit for Curtis, but I'd be lying if I said it wouldn't be a huge disappointment for him to be at a school other than our "home school". His big sister, especially, would be devastated. We'll cross that bridge when we get there, but we are getting there so soon! EEK! Unreal. 

Other news: Curtis is still swimming, although he's been sidelined a few times by ear infections. I have to be more diligent about putting in swim ear drops after his lessons. He has had outer ear infections, or swimmer's ear. They clear up fast, but are no fun while they are there. He is still working on his front breath and they are also now working on teaching him some elementary back stroke since he is so good at floating on his back! 

A few other photos just for fun--

 Here he is giving Santa his detailed list...

Somehow caught my cutie all alone on the steps after we saw Santa and got this shot...

 I hope everyone has a great holiday!

The Handwriting Saga

I'm going to warn you in advance that this is a bit of a
vent post.

I was worried that the day would eventually come, I just wasn't expecting it to happen so soon. The proverbial ball has been dropped, and, unfortunately, Curtis is one of the kids that is affected. 

Here we are in the middle of November and Curtis' occupational therapy (OT) through the school district has been lacking, to say the least. As you might remember, his school unfortunately lost their amazing occupational therapist at the end of the last school year (she moved to another state, such a bummer!) I had high hopes that this school year would be OK, however, as I knew she had left detailed information about Curtis and all the other kids she worked with. Apparently, the transition wasn't so smooth. I received word from Curtis' preschool teacher about 6 weeks ago that he wasn't being pulled from class for his OT services. Or, at least not as frequently as she thought he should. When I questioned Curtis' case manager about this, she emailed the therapist and asked her to get in touch with me with more information about his OT schedule and how everything was going. 

What I heard back from the occupational therapist didn't sound very promising. At all. She told me she had "scheduling challenges" and that he did "not have a consistent OT service time". Apparently, due to multiple assessments and meetings, she had missed service times for the children needing therapy--including Curtis. Wait...WHAT?? Most of his OT support was, in fact, being worked in with his motor lab time, I was told. ("Motor lab" is where Curtis goes twice/week before school to work on gross motor activities--it's like physical therapy/physical education). I'm fine with them doing both fine and gross motor activities during motor lab, but I'm not OK with them completely replacing traditional OT with this combo of OT and motor lab. Especially without my consent. This type of OT is so not what was planned when I signed his IEP last May. And it is so not the same kind of OT he has had the past two years through the school district. 

Honestly, all I can say about this is, "What the hell is going on here? How can they suddenly make these changes? And how is it that it's now been 3 months into the school year and there is still not any sort of OT schedule for my child? How is this acceptable?" 

In the meantime, Curtis has become very interested in writing letters. I shouldn't really say "in the meantime"--he's been interested for several months, really, but he's become obsessed with it recently. He tries to write his name pretty much any chance he gets--he does an OK job, but requires quite a bit of help. In his preschool class, they are starting to work on writing their names and working on the basics of holding a pencil properly and have even started to keep their own little journals where they can practice writing their name and draw little pictures. Great, right? Yes--except when Curtis' teacher showed me his journal, she expressed some concern. I guess there was a page where they were to write their name and Curtis' just looked like scribbles. I could see some attempts at letters, but no one else could probably notice that the thing in the corner was a "C" or that the scribble to the side was supposed to be an "S". Her reason for concern? Well, she said that Curtis could do better than that last year. My child is regressing? Is this from lack of OT? I don't know. Maybe it's just a coincidence. Maybe I'm crazy, but I'm also upset. Angry, yes, but mostly just sad. OK, that's not true. I'm pissed. I guess I'm both.

I don't have a photo of the journal. I wish I did, but I don't. You wouldn't see much, anyway. Just scribbles.

I do have this picture--

"Curtis"--written by Curtis, with help, on 10/3/13. It's not bad, but he needed help with the C, starting the U, and the entire S. (that's a donut above his name, by the way, heehee)

Back to the story...and this is where it gets silly...

Before his teacher even showed me the scribbles in the journal, I had emailed Curtis' case manager and asked if we could get the therapist to help him work on handwriting skills. So the afternoon after I talked to the teacher about the journal, I heard back from the case manager. That's when I got the news that the new OT is no longer at the school! She's gone! She "didn't work out." Really? Well, that's a shocker. Now there is another new OT. Awesome. So, what does this mean? Will she have to evaluate Curtis before anything gets done? If so, how long will that take? And how long before she can get a "consistent OT service time"? UGH! I'm taking deep breaths and hoping for the best. No, really, I am.

**deep breaths**

Realizing that all of this could take a long time, and Curtis could be sitting around waiting to be taught, I decided that I had to step in and do something. So Curtis and I (and his big sister, the little teacher-in-training) have spent the last few weeks using a great iPad app called "Wet, Dry, Try" from the Handwriting Without Tears (HWT) program (a great, great program!).

Some photos of Curtis practicing an uppercase "I":

 

 

I also bought some of the supplies (little chalkboard, chalk, My First Schoolbook, and Teacher's Guide) from their website so I can start working with Curtis at home while the school system gets "situated", shall we say. I'm really, really hoping that Curtis can go to kindergarten next year and I really don't see why that dream can't come a reality for us without continued, consistent hard work. True, he will likely need the assistance of an aide--in fact, it's something that I want for him considering his physical limitations--but Curtis should be able to do many of the things the other kids in a mainstream class are doing. And I believe that one of those things is writing letters, numbers, and his name. Definitely his name! And the fact that he is practically begging to sit and learn to write--we have to teach him! I'm not an occupational therapist, nor a teacher...but I will try my best to do what I can.

Videos of Curtis using the app...

I have to take a quick second to say that I'm so grateful that Curtis has such an amazing occupational therapist through CCS--she has really helped us these last few weeks (no joke, Curtis has been crazy obsessed with trying to write letters and his name). Even though they are not supposed to work on school-related therapy needs, she has allowed him to work on it a little bit during their therapy time each week and she has told me what she knows about the HWT program, she gave me suggestions for what items to buy from the website, and she even let us borrow a CD with songs about writing letters that she has from the program. She's really great.

So Curtis has been using this app for about 2 weeks, and here is an example of how he wrote his name yesterday--and he wrote it all by himself!! Big sis had him write it in 4 different colors :)

See those uppercase "R"s? He had never attempted one before the HWT app came along. Now I guess he's some sort of pro at them. The "U"s with the little line coming down are still my favorites, with the "i" coming in a close second :) I think he's doing awesome. I can't wait to see how much he improves after we get the set in the mail from the HWT program! 

So back to the school situation...I've already told the case manager what I want for Curtis in the months to come and we are working on getting a date set for a meeting. Since he's missed so much therapy so far this year, I want them to double his therapy (going from one day/week to two days/week--mind you, he wasn't even doing one day/week). I don't want all of his OT combined with motor lab. I want him focusing on writing skills (while working on other fine motor skills, as well) so he can work along with his peers in class and be prepared for a kindergarten setting. Curtis is ready to learn and to be taught. It's time for them to be ready to help him. Enough with the inconsistent schedules and the lack of time for the kids that are there because they need their time. Enough. Get it together.   

I don't think my requests are unreasonable. I don't think I'm asking for too much. Do you?

I'll keep you posted on progress and how the meeting turns out. Wish us luck! 

Becoming Beast Boy

I haven't posted in a while. It's not because there's nothing to say or write about. It's because I'm still trying to adjust to the kids being back in school and their after-school schedules and the homework and everything else. Yes, it's sad, I know. They've been in school for a month, I should have this figured out by now. But I feel like I don't have free time for anything. And that is the complete and honest truth. Laugh if you must. I am getting better...I actually think that I have things under control now that I have bought a {HUGE} new desk calendar and have several note pads around the house to remind me of, well, everything. Fingers crossed. I never thought 2nd and 4th grade homework and soccer practice, swim team practice, (well, and therapy and swim and preschool for Curtis) would make me so messed up in the head!

The point is...the blog...and most other things...have taken a back-seat due to my frazzled nature. After the craziness of the day has worn off and the kids are in bed, all I can do is shower, eat, read one of the two books I'm currently reading (love them both!), and pass out. That's another problem, you see--I go to bed too late. Midnight, usually. Then up at 6:30am. So I'm tired and frazzled and usually pretty out of it most days. Or every day.

But let's talk about our boy...

Curtis has been fabulous. So much fun stuff has been going on with him, I really didn't know what to post about. I'm pressed for time tonight, and this is a busy week for us (in addition to all the usual stuff, we have parent-teacher conferences at my big kids' school--which means half-days all week--and Curtis has his Everybody Plays photo shoot on Wednesday!) I decided that I just had to talk about his new identity. I couldn't go another day without letting everyone in on it. 

Curtis is no longer Curtis. He is now Beast Boy. 

Beast Boy

Doesn't it look just like him? 

Beast Boy is a character from "Teen Titans Go!", which is Curtis' new favorite cartoon. If you've never seen it, you should. It's pretty funny. It's a continuation of the "Teen Titans" series, which first aired 10 years ago (this show is cuter if you ask me, but I'm not a superhero super fan so what do I know?)

And Curtis' dad (my husband) is no longer "Daddy", he's now Cyborg.

Cyborg

It's hysterical! The entire family actually has a spot on the show--there are 3 boys (Beast Boy, Cyborg, and Robin) and 2 girls (Raven and Star Fire), so it works out perfectly. But the only two that have had their names really stick are Beast Boy and Cyborg. Curtis, at times, will insist that we call him Beast Boy. During those times, he won't respond to "Curtis".

Example: 

 Me: Curtis, do you want some milk?

Curtis: Say, "Beast Boy, do you want some milk?"

Me: ???

Curtis: Mommy! Say, "Beast Boy, do you want some milk?"

Me: Beast Boy, do you want some milk?

Beast Boy: Sure!

And when he sees Daddy, he calls out, "CYBORG!", even if we are in a public place--he will yell it as loud as he can. Definitely has earned us some strange looks.

I'm not going to lie--there are times during the day when I roll my eyes. I do get a little annoyed having to correct myself 100 times during the day. I, at times, forget that my child is Beast Boy and not Curtis. Sometimes he corrects me and sometimes he doesn't. When he does, he's not always that polite about it (see above). He's also majorly obsessed with the TV show and will try to watch the same one over and over and over again--so I have to cut that off (obviously!) But, really, it's the cutest thing. I have to go with the flow here and laugh about it because it is just too funny. Big bro and big sis are getting a huge kick out of it, too. 

Sis made me take a video of him today while he was dancing at the beginning of his favorite episode (Burger vs. Burrito). See if you can hear him talking about how he's Beast Boy and Daddy is Cyborg. Turn the volume up so you can hear his little voice over my loud one!

I wish I had more videos of him as he did his Beast Boy and Cyborg activities during the day. I don't use the video camera feature on my phone enough! I'm glad sis convinced me to shoot this today. 

I bet you can all guess what he wants to be for Halloween. And of course there are NO Beast Boy costumes out there. Homemade costume? Say it ain't so!! Probably one for Cyborg, too. AHHHH!!!!!

Have any of you had a child so obsessed with a character in a TV show or from a book or from...anywhere? My other kids have loved shows and movies before, but I don't know if either of them were ever quite like this. It's new to me. 

It's time for the little beast to go to bed, so off I go.

I really, really want to show you all his new swimming trick. I need video of that, though, so bear with me. I have to plan ahead and bring my video camera so I can get a decent video. Hopefully this week! He's been working hard and making a lot of progress--working on taking a breath--but in a "special" way. Stay tuned!

One more year

Ever since his last day of preschool, Curtis been asking when he gets to go back to school. Today the day finally came! He was so excited. I couldn't even get any good photos because he didn't want to sit or stand still. Every photo I took with my phone came out blurry. 

With big bro and big sis before they took off for their first day--also today.

Luckily for Curtis, he is at the same preschool, with the same main teacher, in the same classroom, and with most of the same kids. So the transition to pre-K, at least on this first day, was not huge. There were no tears. I didn't have to show him around. Or make any introductions. Everything was familiar and comfortable--for both of us. It was nice.

He picked out his shirt--"Kabooom!" I think he was ready to go, don't you?

When I picked him up, he was happy to see me. "Mommy!" he yelled and came running up to me, collapsing in to my arms. It feels so good to still be needed...my big kids don't do that anymore. He had tired eyes. I almost thought for a second that he was going to cry, but he didn't. I was worried that a busy day of fun and play and a new routine might result in a potty accident (or two) during the five hours of school, but that didn't happen, either. So proud of him. He really is my big boy. My little boy, always--but my big boy, too.

I've been thinking about this final year of preschool (pre-K as my big kids insist on calling it) a lot in the last few weeks. I'm trying not to stress about the fact that kindergarten is only a year away. ONE YEAR. Twelve months. It seems like a long time, but is it? Is it enough time? Will his social/fine motor/gross motor skills all be "just right" for him to be in the "regular" kinder class at his big brother and big sister's school? 

Sometimes it's hard to take notice of how much our kids have grown and changed in a year. Of course we can measure physical growth--pants get too short, shoes no longer fit, and belly buttons poke out of shirts...all things that let us know that they are getting bigger, taller. I remember seeing cool photos people posted on Facebook and Instagram last June that showed side-by-side images of kids on their first and last days of school.  Some of the physical changes in the kids were really extraordinary. How can 9-10 months change our little ones in so many ways? They lose their baby fat, they earn more freckles, their hair gets longer or they change it completely with a new cut. They are different. You can't go back--they are forever changed. Even seeing photos of other people's kids go through this transformation amazes me. It just goes so fast. That old saying that everyone warns you about. Oh, the truth.

But what about the other changes? All those things you can't see in those first and last day of school photographs: new social skills, maybe some physical challenges that were overcome, and how much they learned in school that year. When I start to worry about next year, I tell myself to think about Curtis and this past year of preschool--I feel like I have to keep reminding myself how much he grew and changed during that year. And I need to focus on the idea that similar changes and similar growth will likely occur this coming year. His "pre-K" year. This is not to say that I will become lazy or that I will stop paying attention to his progress. His therapy--speech and OT, at least--have been cut in half at school this year, based on how great he was doing last year. But what if he isn't doing quite so well this year? Something will have to change. I want to make sure he is doing as well as my other two kids by the time they were entering kindergarten! If I feel the need to push for more of anything, I will. If he needs more "work-at-home" help, I'm there.  

Anything. Whatever this boys needs to get him prepared for mainstream kindergarten, I'm there. Always.

And that is not to say I'm opposed to the other school options--kinder with the help of an aide, kinder at another elementary school within our public school district, placement in the special day classroom at our school, and, possibly, private education. I'm not opposed to any option! I've always said that whatever is best for my boy is what we will do. 

I won't lie--the thought of him going into kindergarten puts a feeling in the pit of my stomach that I can't describe. It's like nothing I've ever felt before. I don't know why. Am I worried that he won't succeed? That he won't make friends? He's already proven that he can do both. So I think that while I need to be cautious, diligent even, when it comes to his learning and "skills" during this year of pre-K...I also need to let him go about his business. I need to let him grow. 

He still has one more year.

KA-BOOOM!

The Best Part Wasn't Even In the IEP...

I just had Curtis' IEP meeting, as you recall, and it was awesome. The therapists and his teacher went on and on about how much progress he's made. How much he's grown. How amazed they are by him and all his achievements in this past year. No doubt, everything I wanted to hear. We all agreed that we are proud of him. Considering how unsure I was at the start of the school year, I was so happy to hear all of this at the meeting that concluded the year. He had reached several goals on his IEP.

Stepping aside from that for a minute, I want to talk about something really cool that happened this past weekend. Curtis went to a birthday party. I know what you're thinking--what? Big deal! Yeah, OK, so he's been to a bazillion birthday parties in his almost-5-years of life, but this one was different. What was so special about this birthday party was that it was all his own. And by that I mean his older siblings were not invited. In the past, Curtis has gone to parties for kids his age, but his siblings have also been invited because the kids having the party were family friends. The party this weekend was for a friend of Curtis' from preschool. In fact, it was for one of his best little buddies from school--a kid that he connected with from the beginning of the school year. And I can't even tell you how much fun it was to watch Curtis at this little pirate-themed party. Seeing him run around the park with all of his friends from preschool was like a dream come true for me. To help you understand, I'll have to take you back in time about 2 years, if you don't mind, to the first IEP meeting I had with the school district...

During that first meeting, they tried to convince me to sign Curtis up for his first year of preschool. He would, after all, be 3 years old by the start of the school year. But he was unprepared in so many ways. I won't go into too much detail with all the things I was worried about, but the fact that we hadn't started potty-training, his speech issues, and problems with balance were a few. All of those were issues they said they could "deal with" considering he was special needs. I didn't feel comfortable putting him in class, though, with a group of "average" three-year-olds that were potty-trained, had a good vocabulary, and could navigate a playground like nobody's business. And I didn't want him to be "dealt with", I wanted him to more or less slide right in. To fit in.

Besides all of this other stuff I was worried about, however, I had another concern. Curtis was lacking in social skills. Sure, he had older siblings, so he was always around other kids, but that wasn't the type of socializing he needed. He had never been part of a play group. He never went to toddler music class like my other kids. The time that should have been spent doing those things--the type of things that help socialize babies and toddlers--was instead spent mostly in therapy sessions. No other children were involved in those therapy sessions, it was me, Curtis, and the therapist. Even our trips to the park weren't spent interacting with other little kiddos. That time usually involved me shadowing him everywhere--to help him up and down every little step, to make sure he didn't trip, to be there just in case any other kid bumped into him and knocked him off balance. Park time wasn't social hour with other toddlers, it was Curtis and Mommy time. In fact, almost every hour of every day was Curtis and Mommy time. I never had a problem with this, I loved it, but I now realized it was a problem for Curtis. Before he started school, he needed to be around kids--lots of them! So in addition to the potty-training, I had to get him socialized.

Luckily, he's a pretty social kid! And I completely lucked out that our city's Park and Rec. Department had a PRE-preschool "Mommy-and-Me" class. I spoke to the teacher and she made an exception on the age limit for Curtis (max age was supposed to be around 3 yrs old, if I recall, and they let him go until he was around 3 1/2). It was perfect for him. He learned the basics of preschool: circle time, snack time, singing little songs, and how to share and play with kids his own age. It was great. Still--it was "Mommy and me". I was there to help with any problems. Always there.

Then I blinked and it was August 2012 and time for real preschool. Lo and behold, I still had my doubts. Had I done enough to get him ready? How would he feel being around all these new kids? Would the other kids like him and want to play with him? Would they notice things about him? That he couldn't or wouldn't go up and down the play structure like they did? That he walked different? That he couldn't run as fast or jump as high or ride a tricycle? If they did notice these things, would they ostracize him? Would he be an outcast? I spent hours (maybe days...OK, maybe the whole summer) worrying about these things. Wondering if the kids would accept him. Constantly going over and over all the different "worst case scenarios" in my mind. And do you know what? Here is what happened when those little 3 year old kids met Curtis and spent time getting to know him--nothing. And I mean that in the best way possible. All of those things I worried about and spent countless hours awake at night picturing in my mind--none of them happened. At least not that I am aware of. If a kid made fun of him or decided to not play with him because of his differences, no one ever told me about it. All I ever heard from Curtis was "my friend played with me today" and "I played on the swings with my friend" and "I have a new friend!" And all that I ever saw were smiles.

 So as I was sitting at this birthday party last weekend, looking at the kids from Curtis' class, it dawned on me. These kids in his preschool class--his very first "for reals" class EVER--are so special. Why? Because they all looked at my little boy and they loved him. They didn't see any differences. Or if they did, they didn't care. They saw a little boy that wanted to play and laugh and have fun, just like they did. He wanted to run and jump and look for bugs and play dress-up and ride tricycles and roar like a lion. He wanted to explore. He wanted to learn. Just like them. They have spent the last almost 10 months with him and they have helped him become a "regular" little boy. I have no doubt that they helped him get over his fear of slides. I also have no doubt that they are the reason he now tells me, "No, I want to do it all by myself, Mom!" They taught him what it was like to be a 3 or 4 year old (yes, temper tantrums and stubbornness included). During the recent IEP meeting, his teacher told me about one day when a little boy in the class was teaching Curtis how to stack magnetic blocks using two hands, because Curtis was trying (and failing) to do it with only one hand. She told me how patient the little boy was with him and how Curtis watched and listened and followed his lead. So these kids are even acting as therapists--haha! But, seriously...so damn amazing, I'm telling you. And they don't even realize it, these kids. How could they? They're just being kids. Playing. Having fun. When I picked Curtis up from school the other day, one of the little girls in his class yelled out to him, "Bye, Curtis! I love you!" I mean, give me a break. I almost lost it right there. They love him. And the feeling, I assure you, is mutual.

A few weeks ago, if you would have asked me how Curtis has changed or grown since starting preschool last August, I might have given you a list of things like this: he can now go down the slide on the playground, he can ride a tricycle, he can use scissors to cut a straight line, he can draw a "+" and a "o". Things that would show up as goals on an IEP, basically. 

Now I am thinking beyond that. Curtis now has his own friends. He gets invited to birthday parties--ones that his big brother and big sister don't get invited to. He has kids that get excited to see him at school and ask him if he wants to play the second he shows up. He has little girls that tell them that they love him (teehee). All of this...this is all big to him. It's made him a different kid. I know that all that other stuff--the pages and pages of stuff that is in the IEP--is crucial, don't get me wrong. But none of this cool social stuff that happened was even in the IEP. It just happened! And I think it's just as important. Curtis has grown and made progress simply by being around those adorable, sweet, fun little kiddos that he calls his friends. His buddies. 

They are awesome. I will never forget them for changing my boy. 

Photos from the party, you say? OK...

See that last photo? I think he's telling you he's going to be 5. Next week. Someone hand me a tissue, the waterworks are a-comin'...

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!