Sick to My Stomach

I know, I know. First my heart is breaking and now I'm sick to my stomach. What next?

I had such high hopes thinking about Finn starting kindergarten. Now I'm dreading the school day tomorrow like I have never dreaded a school day before. Even more than that one time I went to class at Ohio State and realized a paper was due that day and I hadn't even started it. It's that bad.

I'm pretty sure I haven't posted here about this, and I'll go into more detail in another post, but last spring we found out Finn has something called Sensory Processing Disorder (SPD). Here's a brief description of what it is:

"Sensory processing (sometimes called "sensory integration") is a term that refers to the way the nervous system receives messages from the senses and turns them into responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation– "sensory integration."

Sensory Processing Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, Ph.D., likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.

SPD can affect people in only one sense---for example, just touch or just sight or just movement---or in multiple senses. The disorder may lead one child to over-respond to sensation and another to under-respond. Sadly, misdiagnosis is common because many health care professionals are not trained to recognize sensory issues. These sensory issues can drive some children to seek sensation (which can look like hyperactivity) and others to avoid sensation (which can look like aggression or withdrawal)."


For a long time, Finn has been hugely sensitive to sounds that the rest of us think are loud, but don't cause us too much discomfort. We wondered if the chemo had caused Finn's ears to be OVERLY sensitive to sounds, so we took him for a hearing test in May. The good news was that his hearing was normal. But the audiologist suggested that Finn be evaluated for Sensory Processing Disorder. Ironically, I knew what it was because a friend's daughter had been diagnosed with it last year. She has been a great resource for me (thanks, Robin!) and her daughter's success with treatment has made me feel really positive about the future outcomes for Finn.

So this summer Finn went through the evaluation process with a local occupational therapist and he will begin OT some time this fall. His issues tend to focus around over sensitivity to noise and light and he's very sensory seeking--playing rough, breaking things unintentionally because he literally doesn't "know his own strength," etc. But basically, when he's around loud noises, his system overloads and he struggles to function. Going places with loudspeakers or buzzers is next to impossible. It's not a big deal. He knows it will bother him and he just chooses not to go certain places.

We were concerned about trying to get some strategies to help him as he started school, but never in my wildest dreams did I imagine that he would have such a negative reaction to school. To me, it all goes back to the SPD. Starting kindergarten has really brought out a whole host of problems.

Pretty quickly after the excitement of the first day wore off, Finn has said each day that he doesn't want to go to school. As it is with 5 year olds, we've had trouble really pinning down the reasons why. At first, the fact that he missed me seemed to the biggest issue, but we had expected that. We walked in with him the first few days, as the other parents did, too, and then we've tried to pull back a little each day.

Finn's teacher is a young man who is in his first year of teaching. So far I've liked what I've seen and heard about him. But on Friday, everything came unglued.

On Thursday, I could tell that Finn's teacher was not happy that I was inside the school with Finn when the bell rang. I had come to school early to help the librarian at the book fair, and because we had arrived before the "approved" time, I brought the boys in with me. I didn't think it was a big deal, but the teacher made a point of telling me that "we're trying to all meet outside." Well, OK, I thought, but what was I supposed to do? Leave my kids standing outside unsupervised for 20 minutes? I had to do the same thing on Friday and the teacher seemed annoyed again, even after I explained about working at the book fair. I guess I won't work at the book fair for the time being since it's causing so many problems.

On Friday morning, Finn was very upset and adament that he didn't want to go to school. It's so hard when they do that. After talking to him and asking questions, it appears the the lunch room is root of the problems. There are 110 kindergartners in there at once. It's loud, they're herded around like cattle, they have about 15 minutes to eat, the lunch room staff flash the lights to get the kids' attention, and the lunch lady goes so far as to whistle shrilly on her fingers to get the kids' attention. I know this because I went to school for lunch Friday. It's a total recipe for disaster for an SPD kid.

After Finn was so hysterical about not going to school and being upset about lunch, I thought I would go to lunch and help walk him through the process, explaining about each step and why certain things were going on (the school really encourages parents to come to lunch with their kids and visit). When I got to school, I saw Finn's class pass by. My plan was to stay out of sight and only make an appearance if he seemed to have problems.

I peered around the corner and saw that Finn was crying. Sobbing. No one was offering any comfort or even talking to him. I went to him and asked what was going on. In hysteria he told me he didn't want to go into the lunchroom, that he wanted to go home. I told him I was here to eat with him and help him in the lunchroom. He pulled it together, but only briefly. As soon as we got into the lunchroom, he was melting down in a way I have never seen him. He was crying, asking me why the lights were off, what was all the noise, why were they shutting the doors. Everyone just scatters and grabs a seat. It was clear to me he was confused about where to even choose a seat in the melee.

We chose a seat with some girls he knew. He couldn't even get it together enough to open his lunch and start eating. Because the monitors walk around saying "10 minutes! Hurry up! 5 minutes!" he was panicked. Truly, it was heartbreaking. He didn't know what to do. I was just talking him through the steps, "Sit down, open your lunch box. . ." when I got a tap on my shoulder. It was Finn's teacher who was very unhappy that I was there, saying that he had given Finn "multiple chances during the morning to settle down and do his work and he wouldn't do it" and that I needed to just cut the cord and say goodbye quickly in the morning and that I was creating all sorts of problems with Finn in the morning. He went on to say that now my being there was rewarding Finn's "bad behavior" in the classroom and that I couldn't come to school for lunch again until Finn got a grip and could go through the morning without missing me. Excuse me? WTF?

Now, to be fair, Finn's teacher only has the bare minimum knowledge of Finn's background. Because the start of school is always so frantic, I have only had time to mention some of Finn's issues in passing. We were supposed to meet last week to discuss things, but with Finn being sick two days, which just added insult to injury in the adjustment department, we had to postpone. I have requested a meeting, but Finn's occupational therapist isn't available until Tuesday, and I think it's imperative that she be a part of this discussion, and that means another day of Finn having a nervous breakdown at lunch.

So when Finn's teacher was telling me all of this in the lunchroom, I expressed my surprise that there was an issue in the classroom where Finn was upset--I had no idea. But then I tried to explain that Finn was overwhelmed in the lunchroom and I was trying to help him interpret what was going on in there. Finn's teacher insisted that it's his job to do help Finn do this and that I'm not letting him do his job.

I'm sorry, but if it's day 5 of school and my kid is becoming more hysterical by the day, something isn't working. One thing we've noticed with Finn's SPD is that the learning curve is very stretched out. What a typical kid may figure out after one or two times of demonstration, Finn may take weeks.

So we stood there in the cafeteria, Finn hysterical, the teacher pretty much dressing me down in front of the whole cafeteria of kids and the entire kindergarten staff and people on lunch duty. Then he called Finn over and told him that I wouldn't be allowed to come to school until he (Finn) stopped crying and missing me. Well, as you can imagine, that sent Finn over the edge. And so much for the teacher saying it was his job to help kids in the lunchroom. The teachers walk the kids in and leave. He apparently thinks that walking them down there and telling them what to do is enough. And it may well be for some, but it's not going to work for Finn.

So I did end up staying to see if I could stem the tide of disaster. I have to confess, I had originally planned to stay and eat with Declan, too, but I felt so unwelcome (and this is totally contrary to the school's policy by the way because they tell parents all the time to come and have lunch and go out to recess with the kids) that I left. I went home and, embarassingly, spent the rest of the day crying and venting to my mom and sister, who both taught kindergarten (my mom for 30 years so I pretty much defer to her). In fact, I half wondered if my mom would tell me that I was way off base going over there today. But no, she had thought it was a good idea and was appalled when I told her everything that had happened.

I am so disheartened. I do so much volunteer work for the school, the PTA, and even at the district level and I feel like this is how I'm repaid--made to feel like a hysterical mother who doesn't know what she's talking about. First, I do already have a 3rd grader so I've been around the block a few times. Second, I feel like I have a knowledge of Finn and what works with him that extends far beyond what normal parenting requires. It's just a function of how our lives have been these last four years. With all of my volunteer work, I've always hoped that I would create a situation where people at the school know me and when I have a concern, it's taken seriously because I'm not some random parent who's never around. Just the opposite. Now I feel like a doormat who has done all this work and they still they're just dismissing my concerns and berating my parenting.

Now, in a week's time this may be a non-issue. Maybe when we meet with Finn's teacher he'll have a better understanding of how the SPD is dictating Finn's reactions and he'll help us find some solutions. But right now I truly feel broken.

I'm going to swear here, so avert your gaze if you think you might feel offended. I feel like Finn has had nearly four years of shitty, unhappy things happening to him. Why does kindergarten have to be a shitty, unhappy thing, too? If it means we have to take some extra time and eat lunch with him until he's comfortable with the process, what's the big fucking deal? Really. I'd love to know.

So now I just need to take a deep breath and let it go and prepare to meet with Finn's teacher on Tuesday, and I need to get through Monday somehow thinking of Finn having a meltdown in the lunchroom. It may possibly be more than I can bear. I am literally sick to my stomach. If I had some balls I'd gently tell the teacher tomorrow that I will be in the lunchroom on Monday. I feel sick.