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! ❤️
