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. This can be a bitter pill to swallow, I know. It is good to begin with an attitude of hopefulness but at the end of the day, many people will not understand your child’s struggles. 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…. at a loss. In our 17-year journey, we’ve been told by doctors there’s really nothing wrong, we’ve been glared at by school administrators when we try to secure accommodations, gossiped about by neighbors, or just simply dismissed altogether. It can leave us feeling hopeless.
So, what can caregivers do? Here are a few strategies we’ve learned over the years…
- Advocate. We know our children the best. Caregivers have to understand a child’s diagnosis as well as strategies to support them well. We can take the knowledge we have gained and began to use it to support our children in IEP meetings, pediatrician appointments, and in our community.
- Educate. Education has two facets to it. First, there’s self-education. To the best of your ability you must become the expert on your child’s disorder. You need to be able to recognize every 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. Education and advocacy hold hands with one another. Show up to meetings with literature- blog posts, case studies, current research. You are the connector between your child and everyone your child works with. Do not assume that each person your child comes in contact with has the same education. Keep learning and keep passing on all that you learn.
- Equip. True, the whole world may not understand, but there are many people in your small private world who will try to understand. How are you equipping those people to succeed with your child? Do they have the tools to better respond to your child’s meltdowns, symptoms, accommodations? 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.
- Focus. You may not ever get everyone on the same page. In that case, focus on those who are trying, and support them as they support your child.
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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