When a child is born, the comments are inevitable. “Look, he’s got his Father’s hair.” “She’s got her Mother’s eyes.” Shocking recognition of what all learned in biology. Physical traits are heritable. In our home, my wife and like to chide each other over which of our own bad qualities we cursed our offspring with. Increasingly, science is locating and identifying genetic variances that appear linked to many, if not most, developmental disabilities. Fragile X, Williams Syndrome, Angelman Syndrome and many other disorders have been traced to specific chromosomal variants. Some are actually named after the variant: like Trisomy 13 (Patua syndrome) and Trisomy 18 (Edwards syndrome).
Absent some mutation, it’s likely that one or more of the traits that comprise your child diagnosis were passed on by or through you or your spouse. Why, do I have to bring that up. Parent shaming, finger-pointing, blame casting? No! It’s to give you a moment to “reflect” on how your child is in part a mirror in which you may gain some insight into yourself. And, that could be a very important thing to consider in your role as an advocate for your child’s educational rights. Your child needs the best team possible advocating for them. And, part of building a team is recognizing and playing to your strengths while delegating in your areas of weakness.
A few years ago, our daughter’s academic struggles caused us to briefly redirect our attention from the day to day battles stemming from our Son’s autism. We had long suspected she might have dyslexia or some other SLD (Specific Learning Disability), but any formal assessments had been delayed and obstructed by our schools “helpful” tactics. First, there had been a SIP (Student Improvement Plan), then an SST (Student Study Team), then a 504 Plan, then and IEP, finally she had been exited out of special education services altogether. All without any formal assessments (Remember, back in my first blog post “The Folly of Ego” I mentioned these blogs and podcast series were in part my penance for my own mistakes and arrogance). When the assessments were finally done, and with subsequent medical follow-up, we had a formal diagnosis of ADHD. As is my want, I dove into all the literature on ADHD. I learned the signs and symptoms. I learned the often-ignored impact ADHD has beyond education, on sleep, social relationships, vulnerability to anxiety and/or depression. At the end, I emerged having had an epiphany. I shockingly revealed to my wife and daughter the insight I had gained. “Hey, it almost sounds like I might be a little ADHD!” Both my wife and daughter laughed and replied, “and, you’re just figuring this out now?” My friends were similarly less impressed with my self-diagnosis than by my lack of self-awareness. Now, I never followed through and sought a formal diagnosis, and don’t label myself “ADHD” as the flood of adults with self and internet diagnoses can annoy those with real medical diagnoses. But, I did begin to realize I had developed a combination of habits and systems to allow me to succeed despite my tendency to get distracted, disordered, procrastinate, and overly complicate simple projects.
Successfully advocating for a child with learning disabilities is taxing at best. It requires organization, persistence, and consistency. It can mean wading through mountains of paperwork, gleaning meaning from complex psychological assessments. It calls for a thorough understanding of available resources, treatments, and accommodations. And, finally the ability to appreciate others perspective, motives, and priorities. As you read through this “job description” of an effective advocate you might notice that weakness in many of these skills or qualities are symptoms of, or impacted by common developmental and/or learning disabilities. Thus, the importance of your child as a mirror. Despite the often isolating impact of a disability on a family, none of us are alone. The network of professionals, parents, and programs is wide, deep, and robust. Just as with our children, it is important to play to our own strengths and recognize and account for our weaknesses. Nobody i
s “the complete package” and if we fail to recognize our own individual weaknesses it undermines our ability to effectively advocate for our children
If you look at your child as a mirror and can identify some of your own weaknesses, you can reach out and build a support team (whether it be professionals, family, or friends) whose strengths and weaknesses complement each other. If your lack of organization impacts or adds stress to your advocacy mission, find someone whose OCDish tendencies offset your ADHDish traits. If you are perplexed by the school’s negative response to your approach, attitude, or style (perhaps your helpful observation that they were incompetent, evil, or unqualified), partnering up with someone known for their empathy or finesse might strengthen your child’s “team.” Even the easily understandable difficulty in retaining your composure or holding your tongue when you feel your child’s future is being threatened argues against going it alone. I myself have brought in outside counsel to represent my own Son when I realized my own anger was clouding my professional judgment and I risked becoming part of the problem rather than part of the solution.
You never want to look back at your efforts on behalf of your child and realize that, despite your best intention, you hurt the very child you wanted to help. Too often parents inadvertently provide the school with ammunition that is used against their child, and many due process rulings are rife with comments about the parent’s obstructive or hostile comments and conduct. That may mean you need to look deeply into the inner mirror your child provides and seek your own services, supports, accommodations, or modifications so that by recognizing and identifying your own weaknesses, you can build a team where the whole is more than the sum of the parts.