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…
- Advocate. Fact is, you and I know our children the best. We know their diagnosis, and 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! We became the foremost experts on our child and his particular disorder. 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. There’s still much to do but little by little, light is shining over a world that is mostly dark when it comes to our reality.
- Educate. Education has two facets to it. First, there’s self-education. You must must must become the forefront expert on your child’s disorder, as I just talked about with advocacy. 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. I was pretty blunt with the beginning of this post, but the truth is, you just can’t throw your hands up and conclude that the world doesn’t get it and call it a day. Even when you feel like you’re on an island and no one’s coming, you still fight. You still show up and work to educate even if it feels like you’re like a video game character who’s reached the end of the game’s code and is now running in place. 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.
- Equip. Yes 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 Kristin 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.
- Focus. You may not ever get a principal, or pediatrician on the same board with what’s actually happening with your child. You may print out every single piece of internet document you can find on Fetal Alcohol Spectrum Disorder and still be on the receiving end of an uncaring therapist looking down their nose at you. In that case, it’s time you equip yourself. At the end of the day, you are his dad, you are her mom. Your responsibility as a parent comes before your obligation to help a misunderstanding world understand. Remember this. Because it’s easy to become so focused on getting your child the help she deserves, or the services he needs, that you forget that your primary role is to take care of them.
Yes, it’s frustrating to feel like every single encounter with a professional yields a brick wall you’re continually bumping into. And it’s ever-so defeating to have to re-explain and re-explain and re-explain in parent-teacher conferences and IEP meetings even when you’ve already explained everything there is to explain. Lord knows we’ve been there and we’ve felt that same depth of hopelessness. But dear parent, don’t lose hope. Yes, we live in a world that sometimes grossly dismisses us, our expertise on our child’s disorder, and the reality of our lives everyday. It’s going to happen. Count on it. But there are ways you can turn continual negative circumstances into something positive.
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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