“Bravery is being the only one who knows you’re afraid.” – Franklin P. Jones

I have been told recently that not everyone who has an opinion has the courage to raise it, and many people do not speak up when they have something to say but instead bite their tongues. Since that idea is totally foreign to me, I thought I those folks need to know why we parents need to speak up.

My role as an autism parent has typically been the underdog. No matter who I’m talking to, be it a doctor, educator, IEP team, principal or politician, they always have more experience, more knowledge, more education or more people on their side. Now that I think about it, that’s pretty daunting. Luckily, I’ve always been confident enough in the evidence of my senses and my own knowledge to speak up. You will have to do the same. Bravery consists of doing the right thing even though you’re terrified. If you’re not afraid, its not brave.

I’m not sending you into the lion’s den without some help. Physicians do have more knowledge of the human anatomy and more education than most. Educators have more exposure to a wider population of children than most parents. IEP teams will always outnumber you, as that is part of the tactic. Most politicians will overpromise and underdeliver, all the while selling you on the reasons you should vote for them again. There are a few areas, though, where we as parents are the true expert.

1. We know our children. No therapist, doctor, educator or team will witness your child for the amount of time you will or in the multitude of settings you do. If any of them try to gainsay your knowledge then they need to be reminded of how little exposure they have to your child. Doctors see your kid for 1-4 hours, depending on the practice, and know your child well enough to diagnose every aspect of him? Absolutely not. The diagnosis is a meta-analysis of all known and disclosed factors that will help define a condition, not a statement of who your child is or what he will become. Educators, even if they see your kid 8 hours a day, do not know what he is like away from school. Remember that you are the absolute expert on your child with one exception: your child himself.

2. Nobody can predict the future. When professionals start telling me how my son will fail I smile politely and mentally file it under “Nostradamus” because they are right about that often. If anyone on your team could predict the future they would be playing the stock market. What I do listen to, and where you should try to refocus them, is on your child’s current challenges and how to address them. We constantly remind our team that we expect Raymond to be successful and their role is to support that.

3. There are no bigger issues in that moment. When you are in with your therapist, IEP team, teacher or doctor your child is the reason you are there. We have been told several times that helping our son would be somehow unfair to other children, or that asking people to accommodate is too difficult. Our answer has always been “if not now, when?” The fact is that our kids have autism, and will have it their entire lives. Teaching people to accommodate now is an investment in the society our kids will need to succeed. If someone says that in an IEP meeting, which is quite common, the response we used was “you can discuss the other childrens needs at their IEP meeting. This one is for our son.” That’s the last time we heard that excuse.

I hope this helps. Many times I think of Robert Frost’s “Stopping by Woods on a Snowy Evening.”

The woods are lovely, dark, and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

Walk your miles bravely.

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