Recently I met one of our Texas congressmen and asked his opinion on special needs kids. He said, “I believe how we treat the special needs community is a direct reflection on our character as a nation.”
I couldn’t agree more.
To be clear, no one is prepared to have a special needs child. Whether it’s deafness or autism, Down syndrome or cerebral palsy, families are thrown head-first into a whirlwind of doctor’s appointments, therapies, disappointments, missed milestones, and fear.
Fear of the unknown. Fear of the “what if”’s. Fear of abuse. Fear of mistreatment. Fear of bullying. Fear of rights violations.
But the biggest fear is the fear of “will my child ever…?” Will he ever go to college, date, get married, have kids, get a good job, have a career, have friends, be invited to birthday parties, be included?
The list is endless, and it is this list of “will my child ever” that causes us to grieve every day. Because every day there is a new thing we didn’t think about, a new thing we didn’t realize, a new thing for us to say “my child will never do that, be that, or have that.”
While some people may not have a reality of experiencing what special needs parents and families go through, I would hope they would have a heart for it. I would hope they would raise their kids to be kind, but unfortunately that’s not always the case.
I would hope the teachers, administrators and paraprofessionals who are responsible for educating this special community would do it with vim and vigor, but that’s not always the case either.
Personally, I have been very blessed with incredible teachers and administrators, but that wasn’t always the case.
I was happy to leave a highly dysfunctional and horrific school district behind me when I left California. Because of them, I know firsthand how a parent can place their trust in their school, only to discover that they are in an adversarial relationship—but no one told them, and they found out the hard way.
I know firsthand how helpless a feeling it is when you can’t get simple things done for your child that the law requires but the answer from school officials is still “no.” I know firsthand how isolating it is as you look around and see how happy everyone else seems to be and you can’t understand why you’re the one having the battle of your life.
Well, I’m here to tell you, you are not alone. I’m here to tell you to not take “no” for an answer.
I’m here to tell you that nothing happens in a vacuum and you are not a silo.
I’m here to tell you to learn the law, read the procedural safeguards, hold everyone’s feet to the fire, and never, ever give up.
Your children cannot advocate for themselves. You are their voice. You are their flag carrier. You are their champion. You are the trailblazer. You are the difference maker. You are the hope.
So be the hope. Embrace the battle. Know that you are the expert on your child, and no amount of degrees or opinions can take that away from you.
One last thing: don’t be afraid to talk about what you’re going through. You might discover there are many more people than you think going through the exact same thing, and you will quickly find a support system, a network, and solutions.
Every special needs child deserves the “A Team,” and while that will look different for each child and their circumstances, what remains the same is the requirement for the heart, compassion, and dedication of those team members to be the hope right alongside you.
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