Always Read the Fine Print

Yesterday, Robert and I attended Boo’s annual IEP meeting. Like everything else during the pandemic, it was via Zoom. I have to give major props to his teacher for being able to pull together an IEP for him when she had only worked with him five times in person. As a teacher and a parent I have sat on both sides of the IEP table. I have watched parents collapse in tears out of sheer frustration of trying to get their child’s needs met. There have been times when I have wanted to tip over the table just to get my point across. Nonetheless, I have always tried to be as professional as possible, both as teacher and a parent. In 16 years of IEP meetings I have never lost my cool, until today. We were discussing Boo’s hopes and dreams for what he would do when he left school. His teacher read from the page, “Boo hopes to move into a group home on a farm because he likes animal.” My immediate reaction was along the line of “What the hell?” There has never been any talk about Boo living in a group home. I am his primary caregiver and it will stay that way. The teacher looked at us, we looked at her. “No, just no.” I said. ” Okay,” she said, we are just deleting that part.” “Thank you.” I replied. “So” she continued, “I see he does not qualify for ESY.” “What?” I snapped. “He most certainly does. He did not attend last summer because he hated online school and we opted out. He has always qualified.” “Oh, interesting,” she said. “Well he certainly does qualify, so I will just put him back in. Has he always attended ESY?” “Every year of his academic life”, I answered. The rest of the meeting was uneventful and relatively pleasant.

I came away from this meeting remembering what I have always told other parents. Never sign an IEP at the meeting. Take it home and go through it with a fine tooth comb. If you do not agree with something, do not sign. Put your disagreement in writing, call another meeting, make a paper trail. If something in the meeting does not make sense to you, stop the meeting and ask for clarification. These people are on your child’s team. You and they are his advocates. Advocate for him, or her.

I was musing to a friend how on earth the goal about living in a group home on a farm managed to end up in Boo’s IEP. She said in high school teachers are trying to prep the kids for the outside world. Sometimes they ask leading questions about what the student may want. Sometimes they put words in their mouths. Sometimes they just copy something from another IEP. In Boo’s case, I think it is the latter. Boo has no way of knowing what a group home is. He has no words on his device for that, or farm, for that matter. Yes, he likes animals, but we have plenty of those at home. The whole thing was patently absurd.

IEP meetings are hard, even when you have the best team of people doing the best they can for your child. In the same meeting I was told that Boo is both really smart and deeply, deeply disabled. In my heart, I know these things. I have known them for a very long time. But, it never makes hearing it any easier. I would not change Boo for the world, but I will try to change the world for him. If I had a magic wand, I would not get rid of his autism, because that is intrinsically a part of who he is. But, I would wave that wand in an instant if I could make his life easier.

Boo is so happy to be back in school, even if it is only two days a week. Sadly, in person school is going to go back online for two weeks due to staff members with Covid. Boo is not going to understand why his bus will not come. I hope and pray that this is only a two week hiatus. Boo, and his classmates, need to be in school. I will really have to step up my game until the end of the month to keep him happy and engaged. He has a new Touch Chat app on his iPad that he is learning to use. He has not had a seizure in almost a month. He is slowly gaining weight. He is happy. It seems cruel of fate to take school away when he has only been back for two weeks. Pray for us that I can keep him engaged and happy.

As always, be good humans. Stay safe, stay in touch. And, always, always, read the fine print.