Tilting at Windmills

I am listening to the Lumineers play "Stubborn Love" and I am crying. It's been a frustrating couple of days. My firstborn has been struggling for some time with some emotional issues. I've blogged about it before, so my readers should understand these are not new struggles. They ebb and flow, becoming more and then less manageable. Right now, we are in a season of unmanagebility.

He has been seeing a therapist for a month or so. We've seen her 3 times. I missed one time because I was supposed to reschedule the appointment and lost track of time (and honestly thought the appointment was a week later than it was). It's been about a month since we've seen her. The other thing is that I've been not physically well for more than a week at a time since January. This has prohibited me from seeking more answers out. Honestly, I've just been exhausted, both physically and emotionally.

One thing that the therapist suggested was to have him evaluated for OT services. Seems simple enough, but I have been running into obstacles all day. I intially spoke with the intake person for Doug's therapy, thinking that they could start a separate file for Jeremy and get him evaluated. They don't do OT, and so she referred me to a place that does. That place isn't covered by my insurance. The place that is covered by my insurance seems understaffed. I called them last week trying to get Jeremy in for an eval and it was a nightmare trying to coordinate schedules.

I spoke with his teacher last week to see if she thought skipping school to get an eval was beneficial. I thought if I opened up our availabilty, an appointment might shake loose. She mentioned the Wehde Center, it's affiliated with the school district and according to her, they do evals all year long.

I hadn't heard back from the Milestones place and so I reached out to the Wehde Center. It wasn't what the woman said that made my blood boil, it was how she said it. There was a lack of caring in her voice. She matter-of-factly informed me that the last evals of the year are being performed this Friday, but they're all full. I tried to explain that I wanted him to be evaluated for OT before his kindergarten evaluation. Oh, don't worry, she said, you can just contact his home school to let them know about his issues.

Lady, you have no idea. I don't give a fuck whether his home school knows. I have a child who has something going on and I want to get him help. I have tried to help him but can't. I can't understand what's going on between his ears, I can't help him see what my point of view is. I know that his meltdowns, his tantrums, are somewhat normal but they have become a handicap for my family. I don't give a shit about your fucking protocol--I want to help my son. I am tired of not knowing what to do to help him. I am tired of feeling anxious about taking him anywhere.

I hadn't been in a church service for like a month and a half and got to go yesterday, only to be pulled out before it was over because of Jeremy's behavior. It's beyond behavior modification. We don't let him "get away" with his bad behavior, but it's becoming more clear that he is not in complete control of his impulses and emotions. It's becoming clear that he has some sensory issues. I don't want to wait 3 fucking months to find answers out. I don't want to spend a summer inside my house because I'm afraid to take him to a public place. When he gets frustrated, he just takes off. I have a 21-month-old that is also having struggles and is very busy. I can't have Jeremy going one way and Doug the other--who am I supposed to follow?

I was angry that she didn't appreciate the toll that this is taking on me. There is a mother's tea at Jeremy's preschool next Wednesday. I'm supposed to get there at 10:50, when the kids will come into the gymnasium and present us with gifts. They are supposed to come into the gym singing. I'm beginning to understand that being around loud noises physically hurts Jeremy. He's not going to enjoy all of the noise, which means he'll fling himself on the ground and throw a tantrum (he did that at the Christmas program). I will be by myself, with Doug and Bekah in tow. Bekah can stay put if I need to attend to Jeremy, but Doug can't. He will, as soon as my back is turned, take off walking through the church. I'm literally getting sweaty just thinking about it.

So I've decided to skip the tea, even though I know it's a big event the preschool puts on. I'm going to email his teacher and let her know that I'm just going to keep him home from school that day.

My small group is planning on going camping (for us, that means staying in a lodge somewhere nearby) in the beginning of June. I was initially excited but have been getting more anxious just considering taking Jeremy that far out of his comfort zone. He got upset when we took a detour down Route 31 on the way home from church last week. Last year, when we attended a funeral for Brian's uncle in Springfield, he spent most of the trip there and back complaining that we were too far away from home. Yep, that doesn't seem like a good time to me.

You never know what's going to set him off and you never know how long the fits will last. The main concern has become his safety because he will literally just leave places. He escaped from his preschool room twice last week, he's walked away (out of sight) from Brian when they are at the park, he wandered off from me when we were at Jewel.

So for me, waiting for August to get him help seems like a prison sentence. I lost my temper with the milquetoast woman at the school district and then tried getting back in touch with Milestones. At first I got their voicemail, so I called back. A nameless staffer answered and when I explained that I hadn't heard back from them in a week, she told me that strep throat has been tearing through their office.

All of this leaves me feeling so powerless. I ask for God's help but I don't think his plan is to cure Jeremy. Jeremy isn't eating a bunch of foods that (I believe) are triggering this behavior. He basically eats fruits, veggies and the bread I make from scratch. His behavior has been the same for the past couple of years, as has his diet. I don't believe his issues are compounded by or caused by environmental issues; rather, I think there is something organically wrong with him. I'm not sure whether he will need medication, but I know that he's going to need some active therapy to help him work through his issues. I have depleted any knowledge I may have had on how to deal with him. It's time to stop troubleshooting and call in the professionals.

I have no desire, none whatsoever, to homeschool him. I think it would end very badly for both of us. I believe very passionately that education should be left to professionals. I believe it will do him a lot of good to be in school full-day in the fall. I believe it will do both of us good to have a break from each other. I also don't want him to start the year without his teacher and other administrators having a plan in place. I am afraid of him leaving school and just showing up at our door (we live a block away from the school). I am afraid that, without a plan in place, he will be pigeonholed and unable to thrive.

I see past Jeremy's "issues" and recognize that there is a boy inside there that's smart as a whip. He has a lot of knowledge and understanding about things, but the way the world works is they are not going to spend a lot of time putting up with the behavior just to get to that part of him.

Meanwhile, Doug is receiving developmental therapy and speech therapy. Luckily those appointments happen at our home, but it's one more dimension to trying to plan and carve out time to help Jeremy.

Lastly, I'm losing my mind because I feel so isolated. The only time I could get Jeremy in to see his therapist is Thursday morning, which happens to be the last MOPS meeting before summer break. I will miss the last week of BSF (my Bible study) next week to keep Jeremy home and away from school for the mother's tea. I am not able to fully enjoy small group because I can hear Jeremy in the basement, with the other kids (and babysitters) having multiple meltdowns. It doesn't bother the rest of the small group, but it detracts from my ability to enjoy my friends' company.

I feel increasingly like an island. I am frozen until I can start to understand how to help my son. Is there a support group for moms of kids like Jeremy? I have no idea because I don't have a diagnosis, so I have nowhere from which to draw strength. It's good and well to tell me to pray and ask for God's help, but he's not going to show up on my front porch, offering to watch my kids so I can go talk to a therapist. I have no wish to subject any of my girlfriends to Jeremy's behavior, so I can't ask anyone to watch him while I go get help. And really, who's going to watch 3 kids so I can go cry to someone? No one, which is fine, I get it. I had 3 kids, I should suck it up and learn to deal.

I just want to fucking help my son. He's such a great kid, honestly. Funny as hell, kind to his brother and sister, a loyal friend, smart, loving. I can't imagine what it's like to see the world the way he sees it, in such rigid little boxes. I wish I could help him see the world the way I see it, but I don't know how. It breaks my heart because I know he doesn't wake up thinking about when his next fit is going to be. He isn't consciously walking away from me because he wants to hurt me. He is ruled by a set of conditions in his head that make perfect sense to him, even if to the rest of us they are not founded in reality.

How can you fight that? I feel like Sancho Panza, Don Quixote's sidekick. He's helpless to try to explain to Don Quixote that the windmills are not looking to fight him. I am along for the journey because I fear for Jeremy's safety, but that doesn't mean I can overlook how crazy I think he is. Sometimes, though, I have to admit that he is the one leading the charge. The most I can do is ride along beside him.