In 2004 our lives, and parenting, changed forever when we realized we were parenting a child with special needs. To say it’s been a journey is an understatement. Part of the challenge has come from our encounter with professionals who fail to understand, or know how to handle, the special needs our children have.
Honestly, the list is too long to recount. In 11 years of parenting children with special needs, namely Fetal Alcohol Spectrum Disorder (FASD) and Reactive Attachment Disorder (RAD), we’ve lost track of the amount of times we’ve sat in an office, a conference room, or our own home and looked into the blank stare of a therapist, police officer or teacher. Nor can we even begin to list the negative, off-handed, demeaning, or accusatory statements we’ve received.
Unfortunately, this happens all the time when you’re raising children who deal with disorders like FASD or RAD. Granted, we’ve also encountered many professional people who get it, get our children, have a heart to help, and that is refreshing. They tend to be the exception, however, and not the rule.
From our 14-year parenting journey here are 5 professionals, we’ve personally encountered, who often misunderstand special needs:
- Police Officers. We have encountered this on more than one occasion. Because our oldest son suffers from FASD we’ve dealt with severe behavior and even violence from him in the past. The police have had to get involved on more than one occasion. For years we dealt with a string of officers who just didn’t understand FASD or the related diagnosis ARND (Alcohol-Related-Neurodevelopmental-Disorder) and their reaction was evidence. One officer gave him fist bumps and made him “promise to stop hurting his mom and siblings.” Another accused my wife of not being able to handle him and proceeded to sit my son on the hood of his cruiser and place stickers on his shirt. It wasn’t until last year when we finally encountered an officer who understood what our son suffered from and what we were going through. Unfortunately most of our nation’s law enforcement agencies have not spent adequate time nor resources on training officers to understand these needs.
- Therapists. We have seen vast misunderstanding with numerous therapists over the years. In 2012 My wife and I had hopes that a new therapist would help our son because the last 2 had missed the mark entirely. However, it was clear that she also didn’t get it. Instead of trying to understand where he was coming from or what was going on with his brain, she began to ask him questions like, “Do you feel safe in your home?” (He looked at my wife with a confused look when she asked this), “Do you miss your mom and dad? Is that why you’re acting like this?” (It had been 8 years since he came to live with us and almost 5 since his adoption was final). Much like police officers, therapists are not educated on common special needs that adoptive and foster parents deal with on a regular basis.
- Teachers. For years we dealt with teachers who did a disservice to our child by failing to communicate with us on what was really going on in the classroom, and some of the issues they were dealing with. One afternoon, my wife received a phone call from our son’s resource teacher who bluntly told my wife, “Make sure you feed him everyday!” Kristin nearly dropped the phone. We’ve also had teachers who failed to understand the ins and outs of FASD and their reaction to our son showed. In recent years, we have been blessed to have teachers who took the time to learn about FASD and how it manifests itself in the classroom.
- Pastors. I can point fingers at this profession because I was in this profession for nearly 2 decades and I saw major misunderstandings of many special needs, not just FASD or RAD. Churches are just ill-equipped to handle them. It became my goal, toward the end of my career as a church worker, to enlighten and educate. Ministry training doesn’t include preparation to minister to families raising children with special needs, although it’s extremely common in today’s church, especially larger congregations.
- Doctors. We lost count of how many doctors looked at us oddly, or disagreed with us, when we shared that our son was drug and alcohol exposed before birth and it was causing severe behavioral issues. They disagreed that this had caused brain damage, and often blamed us for bad parenting. Frustrating, as you can imagine. Many doctors, even today, still tell women it’s okay to consume alcohol in moderation while pregnant. As far as we’re concerned, this is Russian Roulette with a child’s life.
Okay, inhale and exhale slowly. We’re pretty certain you’re feeling hopeless as you read through this list because you’ve encountered a misunderstanding professional a time or two. The biggest question we receive when we talk about this subject, or write about it, is “How?” How do we change this? How do we help a doctor, pastor, teacher or therapist understand our child’s special need?
Great question! The answer is found in three areas: educate, communicate and resource. When we discovered, years ago, that one of my son’s teachers had been giving in to his claims that we weren’t feeding him at home, we printed material off from the internet, that exhaustively explained the effects of ARND, FASD and malnutrition, and shared it with her. We took every opportunity to meet with principals, aids, and special-ed teachers, to educate them in a polite and respectful way, on what his special need really was. We’ve shared books and documentaries, even movies and podcasts with therapists and counselors as well.
Two of the best resources we know of, especially when it comes to RAD and ARND, are the book, The Connected Child, by Karyn Purvis, and the recently released documentary, Moment To Moment, directed by Gabe Chasnoff. Out of all the resources in the land, we believe these two are the best. They hit the target. (Click on either title to purchase!)
Remember- education, communication, and exhaustive resourcing are your best allies when dealing with professionals who misunderstand the special need your child has. This includes all special needs, not just FASD or RAD. One more thing- stay calm and composed when you are communicating with them, even if it seems your words are falling on deaf ears. If you go in to an IEP meeting, or conference, guns blazing, you will not be heard. Trust us. Instead of understanding the special need your child has, they’ll start to believe you’re the one with a special need!
Question: Are you raising a child with special needs? Have you encountered a misunderstanding professional? Share your story with us! You can leave a comment by clicking here.
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