Will The World Ever Understand My Child’s Disorder?

From frustrating IEP meetings, to disagreeable doctors, inappropriate church goers, and nosey neighbors. The world is full of people who think we’re making our child’s disorder up, or just misunderstand our reality altogether. The question is, will they ever understand?

No. They won’t. Actually, let me change that…probably…most likely not. Bitter pill to swallow, I know. I’ve racked my brain over this topic for a very long time, and as much as I want to be optimistic and hopeful, at the end of the day, I have to say, I don’t think so. I don’t think the world ever will understand. Disorders like FASDs (Fetal Alcohol Spectrum Disorders) oppositional defiance disorder, attachment disorder, or separation anxieties (to name a few) are misunderstood, if not ignored completely.

And it leaves us parents….who are hands on ’round the clock….who are vigilant CONSTANTLY…who see first hand how real it is…. at a loss. In our 17-year journey, we’ve been told by doctors there’s really nothing wrong with your child, glared at by school administrators when we try to explain the diagnosis, accused of making their disorder up, or just simply dismissed altogether. It leaves you feeling like you’re climbing up a mountain that’s never going to end.

So, what can we do, as we continually run into this wall of disbelief, or discredit, from a vastly misunderstanding world? Here are a few strategies we’ve learned over the years…

  1. Advocate. You and I know our children the best. We know their diagnosis, and we know the ins and outs of their disorder. We could tell you just about everything you need to know. Tell me you didn’t spend hours looking up every article on FASDs, or attachment disorders, when your child was first diagnosed? We did! This was exhausting at first, and it probably was for you too, but it left us in an interesting position: the position of advocate. We took the knowledge we gained and began to use it for advancement. In IEP meetings, pediatrician appointments, and in our community. Advocate and advance. Over and over, in every conversation. The results were not an overnight thing, mind you, but over time we slowly saw understanding take shape, and walls began to crumble.
  2. Educate. Education has two facets to it. First, there’s self-education. You must become the forefront expert on your child’s disorder. You need to know everything single characteristic, trigger, symptom, and side-effect. Everything! The second part of education has to do with helping other’s understand. We just can’t throw our hands up and conclude that the world doesn’t get it and call it a day. Even when we feel like we’re on an island and no one’s coming, we still fight. Education and advocacy hold hands with one another. Show up to meetings with literature- blog posts, case studies, current research. Read books and organize the notes you took at a conference you attended to be handed out. Do this politely, but firmly. A misunderstanding world doesn’t know what they don’t know. It’s up to us to educate.
  3. Equip. True, the world may not understand, but there are many people in your small private world who may try to understand. How are you equipping those people to succeed with your child? What about your extended family? Do they have the tools to better respond to your child’s meltdowns? How about the Sunday School teachers at your church? Have you brought them in the know with what’s really going on with your child? And then there are teachers, guidance counselors and principals. Have you worked to equip them? A few months ago, my wife and our son walked into his school and helped equip his teacher and principal to help him succeed during the school day. Even if we get figurative doors slammed in our face from professionals, we still can do everything in our power equip the people we cross paths all week long.
  4. Focus. You may not ever get a principal or pediatrician on the same page. In that case, it’s time you equip yourself. At the end of the day, you are the parent. Your responsibility to your child comes before your obligation to help a misunderstanding world understand. Remember this. Your child needs you the most.

Yes, it’s ever-so defeating to have to re-explain and re-explain and re-explain in parent-teacher conferences, IEP meetings, doctor’s appointments and therapists.  But dear parent, don’t lose hope. When one person in your child’s world understands, the result is gold. The circle widens and our child’s support system grows.

Question: Have you felt the weight of a misunderstanding world? Share your story with us in the comment section below. You can leave a comment by clicking here.

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