Parenting a child with a hidden disability
My story begins 17 years ago. I had the most beautiful baby boy. He loved life. He loved people. He had big blue eyes and a big toothless grin and an even bigger heart. He was always the one to make sure you were ok.
As he grew, he was excited to go off to school. He loved pre-school and Kindergarten. He loved the social pieces of school - he had friends and life was good. But, I started noticing that he was not as learning as fast as I thought he should be. I began questioning his Kindergarten teacher and she told me he was fine. “Boys don’t develop as quickly as girls and he’ll catch up.” - I began hearing that a lot. I would ask, “Does anyone else have a problem with him falling behind?” and they would reply, “He’s a boy, He’ll catch up”. School got progressively harder for him. Even though I advocated for him, often it was a struggle. Then I got the first letter to invite me to an IEP meeting. The notice listed the principal, teachers, guidance counselor, special ed. on one side of the page and only me listed on the other side. It was overwhelming to look at it and I felt alone.
As he moved through school, it got harder every year. I didn’t get a lot of support. Then behavior started to rear its ugly head. We went from “He’ll catch up,” to “His behavior is the cause of everything.” No one seemed to care about what caused the behavior.
He began to hate school and lose friends. Life became a struggle for him. He was being told everything HE was doing wrong. The school was not taking any responsibility for things. I would get calls from the Assistant Principal saying “He did it again!” I would ask “What caused it?” The response would be “I don’t know.”
We came to understand that when he would get overwhelmed and scared he would act out. He decided it was better to have people mad at him than to think that he was stupid. He was not stupid…he couldn’t read. In sixth grade he was suspended out of school 8 times. That is where all students that have a learning disabilities should be - NOT!
My son looks perfectly normal. He is athletic and on his good days out going. However, he suffers from ADHD, Impulsivity and Anxiety - along with a learning disability. In 6th grade reading at a 3rd grade level. He was not going to catch up unless something changed.
The last time he was suspended I was sitting right there with him. When we got to my car that day he just starting crying and saying he just could not do what they were asking him to do. Again he got suspended because of his behavior. Which was not the root problem! We made the decision together to look for a new school.
He started at a local charter school in 7th grade. He struggled, but they worked with him to help him find solution to make school work. He made friends and began to not hate school. This was a kid that was lovable, outgoing and willing to work if he thought you cared. When he arrived at the charter school he was angry, hurt and scared. In the two years he attended he got in trouble once! He did a very age appropriate thing that we were thrilled about. Not because he got in trouble but because he was doing “normal” things!
Looking back at his struggles and our lack of knowledge - I can say that knowing your child is key. If he is upset about something that seems silly it probably is not that at all, maybe it was something that happened an hour, day or week ago. But, if you have a good relationship and can talk to your child the underlying problem usually comes out.
The one thing that used to help me was to go in his room and watch him sleep. He was so beautiful. Remembering that feeling when he was upset was key. Acknowledging his feelings. Acknowledging my own feelings. Living week by week, day by day, minute by minute, sometimes second by second.
I cannot imagine my life without my son. With all his struggle there is as much joy. It is easy to focus on the bad but imperative to focus on the good.
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