Words I never wanted to say….

Yesterday, I shared a picture of B on his first day of 2nd grade this year. Here is another. We were walking to the bus stop with his sister who started Kindergarten.

B First Day 2015 PL with AliBehind those sunglasses are red, puffy eyes. The eyes of a mother who has already been screamed at and physically pushed around by her panicked 7-year-old for a couple of hours.

Can you tell I’m not really smiling? My sweet husband figured I’d want pictures later when things were okay, but this was not a brief moment of PANDAS or nerves. I can’t look back and remember the overall victory of his returning to school. It was us embarking on a daily struggle and I guess I knew it.

Our son didn’t get on the bus that day with his sister. I drove him in, we worked through the separation anxiety at the classroom with the help of a special ed teacher. I left. As promised I returned to help out at recess and lunch-his  Anorexia caused by OCD wouldn’t let him eat at the school without me there to reassure him, then picked him up after school.

We did this all week with his panic starting earlier and earlier and the turmoil in our life growing bigger and bigger, eventually it was beginning the night before wreaking havoc on bedtime, too. I ran back and forth to the school trying to make it work.

After the Labor Day weekend, the attempt to return him for the second week of school was a disaster. School refusal at it’s finest. This isn’t  ‘I don’t want to go to school’ groaning and feet-dragging like most kids sometimes do. He is 7 and weighs about half what I do, he cannot be physically made to do something. It is dilated pupils, total terror and do anything not to let this horrible thing (going to school and being separated from Mama) happen. So, all the stops come out-we see violence, aggression, rage, stemming (repetitive, self-comforting behaviors), sibling abuse, OCD patterns, etc.

So after all that, I gave up on that Tuesday morning. It seemed like it was doing more harm than good and I felt so defeated.

Once things had calmed down, I realized he had a runny nose. WHAT?!?!? How could he have gotten sick so quickly? With PANDAS, he doesn’t get sick like other kids (no fevers, less coughing, sniffling, and typical symptoms), instead his confused immune system attacks his brain more ferociously causing an increase in the PANDAS symptoms.

We know his immune system is a mess. And he is on a month-long dose of steroids to suppress the immune system-kind of like pushing reset-as we try to get the strep antibodies to a lower level. What was I thinking and why did our doctor tell us it was okay to send him back to school?!? He stayed home all that week doing workbook pages while I googled schooling options and we debated what to do and tried to decide on next steps.

Then on Thursday night, his sister vomited all night. This just happened to coincide with a vomiting bug they both had last year-the same freakin’ week! Hello!!?!? And he has remembered every detail about that week since the OCD started.  We have answered thousands of questions and soothed hundreds of fears about vomiting with questions often circling around the week he and his sister had vomited for the first times. For a long time he couldn’t go in his best friend’s house because he had been to a birthday party there that same week.

It’s been one of our HUGE OCD behaviors (fear of vomiting)-it’s a pretty common one. He also has fear of contamination-lots of worries about germs and hairs in food. These fears are what has caused his Anorexia-to the point at our last visit the doctor started talking about hospitalization and a feeding tube if he didn’t gain weight. The steroids helped immensely with an increase in appetite-and we let go of any effort to get him on a decent diet, so he has gained weight rapidly the first couple weeks of September.

You want pizza? Sure!!! You want ice cream? Here have 2 scoops, with sprinkles!!!

Anyway, sure enough, just like last year. He was fine for a few days, went to the same kid’s birthday party on the weekend, and then was up vomiting all night later in the week. At this point, i was thinking I must have been a bad person in a past life. it’s bad enough having a sick kid without them having a total obsessive fear of the sickness they have!

So, that pretty much did it. I can now officially say the words I never thought I’d say:

I am a Homeschooler.

We removed Brice from public school and are instructing him ourselves. Thank goodness he is only in 2nd grade and we can still keep up!

Looking for more information? Here’s a little, if you need to share it with your school or would like to have an idea of what PANDAS/PANS might look like in a school setting. For the most part it is an invisible illness, it is often misdiagnosed or labeled as bad behavior.

Click here, to learn what PANDAS & PANS might look like at school?

PANDAS Info for Teachers

4 Comments on Words I never wanted to say….

  1. Tracy Shudo
    October 2, 2015 at 12:59 am (2 years ago)

    What I want to say to you is god bless you. What if your son did not have you as the strong supporter you have been for him? I myself did not have issues with my son until he was 13 years old. Then all of a sudden he could not get out of bed, Sleeping 20 to 18 hours. I also did the home schooling thing so he could finish grade 8. Not the most fun thing to do when you have a child that is ill . As a mother with a ill son we do everything we have to. Its not always easy but just remember that if they did not have us then they would be totally lost. So keep your head up. What you are doing is not just helping your sons life but many… Keep it up.

    Reply
    • Ali
      October 4, 2015 at 8:33 pm (2 years ago)

      Thank you, Tracy. Sharing your story and words of encouragement mean more than you know!

      Reply
  2. Joan Kohler
    October 2, 2015 at 1:48 am (2 years ago)

    I’m a retired teacher. I taught all ages and mostly every subject, but more than half my years were spent teaching what was called emotionally disturbed or ED students (elementary K-5) I think it takes one to know one. God Bless those special people who teach us so much. Please email me if I can help. I can send free of charge materials that may help. Bless you for home schooling. public ed is not for all.

    Reply
    • Ali
      October 4, 2015 at 8:31 pm (2 years ago)

      Thank you so much, Joan! We are finding our feet as we go. I did join a local ‘umbrella’ group to help me get started. I’m sure I’ll post a bit more once I figure it out. Thanks again for your kind offer. Ali

      Reply

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