Why I Don’t Blog Anymore

Last night David asked me why I don’t blog anymore. I don’t have a great answer, but I suppose some sort of explanation might result in a blog post, so here goes.

My brain seems to have trouble staying focused long enough to string multiple paragraphs together coherently. It’s hard for me to determine the exact cause for the current state of my brain, but it has been a steady problem over the last couple years and three situational things could be the culprit: having a second child who is a lot of work, relearning life after a child’s cancer treatment, changing careers into something that requires quite a bit of creative energy.

Likely any of the above could be to blame. I’ve also had struggles with managing depression and anxiety over the last couple of years, and I was diagnosed with ADHD fairly recently. Finding the proper medication to manage these conditions has been a nightmare and I’ve mostly given up. I’ve thrown my hands up in the air and I’m just muddling through with subpar depression medication and zero ADHD medication. Which is exhausting.

Needless to say, I am thoroughly frustrated with life and the fact that I often can’t seem to get my words out (other than through a litany of complaints) doesn’t help. As David pointed out to me, though, writing is (was) my outlet and it seems to be a need for me. So even if this is a disjointed litany of complaints, it will at least be beneficial to me (hopefully).

If you’re reading this, thank you in advance for bearing with me through this.

Motherhood is Maddening

I don’t like being a mother. There, I said it. Don’t get me wrong: I love my kids. My heart bursts with love for them. I’m not sure who I would even be without them. I am grateful for their existence beyond anything.

But the role of motherhood is maddening. I am terrified of losing my kids, whether it be through cancer or some heinous crime like violence in schools or trickle down effects from an insane orange dictator. Fearing for your kids’ safety constantly is crazy-making.

Motherhood is exhausting. It is primarily up to me to monitor my kids’ food intake, to stay on top of their vaccines and appointments, to make decisions about schools and IEP goals and assessments and extra-curricular activities, to keep track of clothing they grow out of and replacements of said clothing. I know I should ask for help more often, but regarding that I point you to You Should’ve Asked.

Motherhood is staring your own failings in the face every day. Jack is struggling with depression and anxiety. Despite telling myself that he at least has a mom who gets it and can help him navigate it all, I am still constantly heartbroken over it. I am a contributing factor. I knew going into parenthood that there were risks and that mental health problems run in my family. I should be doing more to help him. He needs better therapy (Kaiser just doesn’t cut it) but I can’t seem to find the time or funds for it.

Even as I’m writing this, I’m telling myself, “You are only one person and you are doing your best. You love your kids and that’s what matters. You don’t have to be a perfect parent. Your kids will be fine regardless.” Even that adds to the crazy-making!

And let’s talk about my second-born for a moment. I struggle with him. He is highly active and into everything and doesn’t sleep. Since Dez has been born, it has become RARE for David and I to sleep in the same bed. Bedtime with Dez is long and drawn out and exhausting, often involving tears and anger and throwing things. It has gotten better, 3 and a half years in (at least he sleeps through the night most nights), but that is all relative. (Please, do not give advice on this. We have tried everything. EVERYTHING. EV.ERY.THING.)

Dez is the type of kid who will purposely do something after you told him not to. If you try to discipline him, he will laugh right in your face. He is a limit-tester and he gets away with too much because we are simply beaten down. We’ve taken him to two different events recently and each time only stayed an hour because it’s just too exhausting to manage him. Even when it goes well, we head out early because anything could happen.

Dez is also smart and sweet and funny, but damn! He is a tiny terror and has me completely relearning and questioning what it means to be a parent.

Being the Parent of a Cancer Survivor

While Jack is much easier than Dez in many respects, he clearly has his own challenges. Obviously, cancer is to blame for the biggest challenge of them all!

It’s been over 2 years since treatment ended and life has improved dramatically. Jack has had only 1 absence from school all year, a huge change from the years where he rarely made it to school a full week. He is rarely sick and when he does get a cold, he recovers more quickly than any of us. (Caveat: I still freak out inside when he does get sick or is feeling “off.” I’ll never get over the cancer diagnosis.)

But the fallout is rough. Mental health issues, learning disabilities, and a general feeling of being different from others around him. He is having quite the existential crisis and asking questions about the meaning of life much too early.

The needle phobia, on which we spent thousands of dollars on a therapist who specializes in exposure therapy for phobias, never fully went away and only got stronger after we quit therapy (partially due to finances but also due to having made significant progress).

We finally tried medication to try to address the needle phobia and steadily increasing anxiety, but that was disastrous. I knew that Jack had odd reactions to medications when he was on treatment, but those odd reactions have continued. One med meant to help with anxiety and ADHD instead made Jack extremely anxious and suicidal, and another had him falling asleep and nearly fainting at school.

We decided to that perhaps we would wait until he is older to try any other medications…

And finally, after over 6 months of torturous failed attempts to get a blood draw that left us all dejected, Jack’s oncologist said we could stop trying. That doesn’t eliminate the problem (he will need a blood draw at SOME point), but at least we’ve gotten a reprieve.

Now that we aren’t managing cancer treatment, we are managing school. In many a childhood cancer survivor’s case, that means things like special education through an IEP. Due to the timing of Jack’s cancer, we have no idea if he would have had these issues if it was not for the cancer. I try not to dwell on that thought much, but it creeps in from time to time.

We recently went through a triennial evaluation at Jack’s school where Jack was evaluated to determine whether services were still needed for him. This is routine for all IEP students, but it is still nerve-wracking for parents. It was suggested by the school psychologist that services may be reduced or taken away because Jack was doing so well (nevermind that he was failing at the beginning of the school year and the IEP is what keeps him afloat), so that was a big stressor. Finally the school psychologist changed her tune when she heard from Jack’s math teacher and his special ed teacher that he often gets overwhelmed in class and hides under his desk. In the end, we were able to keep all the resource hours in Jack’s IEP and the team added a weekly check-in with the school psychologist.

Based upon the fact that my child is getting overwhelmed and his response is to hide under a desk, combined with the atypical results in the educational assessments (along with the odd reactions to medications and a few other niggling things), I finally crawled out of my place under a rock and decided to get Jack assessed for Autism Spectrum Disorder. I have no idea what the results of this assessment will look like. I go back and forth on whether this is a giant waste of time, but in the end it’s good to at least rule it out, I guess? At least we’ll know whether Jack is just unique or if he has more significant neurological differences that aren’t explained by what we know so far.

Hence, Why I Don’t Blog Anymore

Between the overwhelming number of things to manage in life, the sensitivity of the topics I am addressing, and the sheer fatigue to overcome…is it any wonder I don’t blog anymore? It all comes out as emotional vomit.

I want to write, though. I am going to try, but I will make no promises. There’s a lot of living to be done.

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No IEP For Jack

David and I met with a team of teachers and specialists at Jack’s school on Tuesday to go over my request for IEP assessments for him. Even with the 504 accommodations in place, he has had increasing difficulty completing schoolwork, gets very frustrated and can’t seem to stay on track with homework, and he fights fatigue and physical discomfort constantly. From day to day, and sometimes even moment to moment, Jack can’t remember what he is supposed to be doing or how he is supposed to be doing it. This is particularly a problem in math and it often takes him an hour to do 2-3 math problems for homework, if he hasn’t been reduced to tears and stormed away from the table.

In preparation for the meeting, I printed out loads of information on learning disabilities and the effects of cancer treatment on students, including information on dyscalculia. I also had a one page write-up about Jack’s strengths and the challenges we’ve noticed. I did end up sharing the strengths/challenges page, but never got around to the other stuff because, essentially, none of it matters – Jack is doing too well in school (between 90-100% in all areas) and would be very unlikely to qualify for any special education services.

To put it more plainly, Jack’s loss of abilities/skills won’t qualify him for additional educational services unless/until he starts failing in school. He can go from being an A student to a C student and still not qualify. In fact, he needs to be 1.5-2 grade levels behind his peers in order to qualify for services under IDEA.

Furthermore, at this point in time Jack is still missing so much school that the specialists who would do the assessments would be unable to say that the issues he does have are related to learning disabilities (brought on by a health impairment) and not just due to his lack of attendance.

That’s a bit backward, if you ask me. Part of the reason he has low attendance is that he struggles so much in school already and wears himself out. If he attended school even on days he’s clearly exhausted and not up for anything, he would likely fail in his schoolwork more noticeably and thus qualify for services…but at the cost of his health.

That’s just not worth it.

So, right now, Jack won’t get an IEP. He still gets the 504 accommodations, thankfully. Some new accommodations were added, such as visual prompts to keep him on task, a tutor 2 hours a week, and inclusion in adapted PE (which isn’t limited to IEP students) once a week. He is to work on homework for no longer than 40 minutes each day regardless of how much he finishes (unless he feels like doing more).

I am conflicted about the success of the meeting. It’s hard to feel positive when it feels like things won’t improve much (if at all) as far as school goes. The struggle will still be there; we’ve just been given the OK not to fight so much.

On one hand, I’m proud of Jack for finding ways to keep up in school. He is fighting hard to be a good student and keep on learning. He has come up with creative ways to do those things. I’m in awe of him for how he is handling all the challenges he faces.

I also understand that there is limited availability for special education services. There are many other kids who need those services more than Jack does. We are very lucky that Jack isn’t struggling more than he is.

On the other hand, I wish he didn’t have to fight so hard in school when he also going through so much healthwise. I wish that the emotional impact of the extra effort he puts forth in school was taken into account. It would be nice if his personal potential was a little more important than just teaching him the bare minimum necessary to get to the next grade.

We are set to meet with the 504 team again in April to see how the accommodations are working for Jack. If things get worse, we can always ask for the IEP assessments again and maybe at that time attendance won’t play into it. There will also be different curriculum being taught at that point in time, so Jack’s academic performance may be different (especially as his chemotherapy dosages are increased again – he is currently on about 40% of what he’s supposed to be taking).

I’m still hoping to get Jack help in other ways. I’ve got an application in with our county’s Children’s Services department because Jack may qualify for occupational therapy through them. I am also getting him set up with a pediatric therapist next week, which may be helpful in reducing his stress and anxiety over school.

And, well, who knows – this could all become a non-issue in 13.5 months when Jack finishes treatment. One can hope, right?

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