We’ve all heard the clichés, “Life is full of challenges.” “Life only gives you what you can handle.” “This is only a phase.” But what happens when life gives you more than you can handle and you learn that it is not only a phase? Only parents of special needs children can understand the obstacles (& celebrations!) they face on a day-to-day basis.
Many years ago, I met a young mom and her son who had surmounted more hurdles than any family should endure. While picking up the pieces from the sudden death of her husband, she learned about the multiple learning, attention and behavior challenges that her son was facing. Her attempts to put him in a traditional school environment failed because she was not only contending with learning challenges but with significant grief and trauma. Opting for homeschooling, she sought out services to support her as his learning coach. This well-meaning attempt ultimately failed because he needed teachers with specialized training in complex learning issues. When he was eventually diagnosed as being twice exceptional (2e), this amazing mom joined a supportive network and put together a team of people to support both of them through his educational journey. I was fortunate to have been a part of their team. Being a part of that team was complicated because outsiders couldn’t possibly understand what was going on with this angry, sad child. In reality, it wasn’t their place to know. The unfortunate truth is that, as humans, we attempt to rationalize things that we don’t understand which often leads to judgment about others’ handling of situations. I watched this poor woman’s valiant efforts to make the outside world see her son through her eyes. I remember the day that I was put in the position to advocate for this little boy and all that came out was, “you haven’t walked a mile in their shoes.” I said nothing more.
Stories such as the one above have been a part of my day-to-day existence for nearing 2 decades.
When we have children (through birth or adoption), we all have thoughts and ideas about what our children may become. We dream. We plan. We hope. We prepare. We enroll our children in preschool and then into elementary school and hope that all goes well. For many children, the rights of passage are seamless. For many, however, the dreams begin to change. We realize that our child is struggling. He/she can’t read as well others. He/she can’t make or keep friends. He/she hates going to school. So, we do as every parent should do – we elicit help from the people we know and trust – the teachers, administrators, etc. For many, this team is successful at creating a plan to work on whatever issues are uncovered. However, for many, many, parents this is the beginning of a long journey inclusive of professional evaluations, specialists, tutors, and more. We realize that we have to redefine “phase” and accept it as our new normal.
From the first evaluation which defines the challenges parents have identified for years, it is a time of relief but also a time of “how can we fix it?” We go from professional to professional gleaning as much insight as possible to help us find a “cure.” For most issues, there is not a cure, but a systematic plan of events that will yield favorable outcomes. We trust those making the recommendations and hold our breath that the plan is successful. Then, we begin to dream again… the “what if’s,” “when…”
Parents of special needs children, mine included, have many stories to share. My own highly educated parents (Duke and University of Richmond alums) wondered if I would ever graduate college or be able to hold a job. My learning disability diagnosis was scary and they felt alone. None of their friends or siblings had children with LD’s. Everyone would say, “but she’s so smart. Are they certain?” The truth is, and always was, that I am smart. But, I learn differently. I had some great teachers along the way who understood my strengths and my challenges. I also had some not-so-great teachers who didn’t “get it” at all. As parents, we can usually identify the “rock star” teachers, those who are “good” and those who really should reconsider a career change (trust me – they know it, too!). For students who have LD’s, the teacher(s) can make or break the child’s year, and, sadly, the child’s self-esteem. I remember, as if it were yesterday, my 6th grade teacher publically asking me, “why aren’t you more like your sister?” Strangely, despite his lack of common decency, I think of him quite fondly. BUT, I always remember him as “the teacher” who made me realize how different I was.
Each year, as part of accepting that the “phase” is not just a phase, parents hold their breath and hope, beyond hope, that this year’s teacher will be the one who understands and goes that extra mile. They hope the homework will be manageable and that they won’t receive that “dreaded call,” the call that relays what is going wrong. What if, for once, parents only received feedback that was positive? Can you imagine what that would feel like? Walking a mile in their shoes…a positive note could be life-changing to the recipient.
Parents of special needs children are constantly striving for balance. Balancing school, homework, extracurricular activities, social time, tutoring, therapies, etc. Ask the parents of a special needs child and they will guide you through the complex puzzle that is the day-in-the life for their family.
Along the path to understanding, parents learn the do’s and don’ts, the scientific lingua, the strategies that work and the people who understand their challenges and embrace their journey. They learn alternate ways to help and they learn how to navigate (or circumvent) a system that is not structured for their child. These experiences, while often challenging, overwhelmingly lead to greater empathy for others and, most importantly, priceless life lessons.
They say that it is not ability that predicts life-long success but work ethic and motivation. For many children who learn differently, success changes after high school, as it is often the K-12 system that is so difficult. For many of “us,” the most exciting time is seeing what we have gleaned along the way from years of working harder than most of our peers. Many of the children I have known throughout my career, those who struggled far more than they should have, are some of the most successful adults I know. I would love for them to share what it was like to walk in their shoes (and they are some big shoes to fill!).
And finally, to the parents of the special needs child… continue what you do best – educate yourself, advocate for your child, and help your child understand the immeasurable gifts that come with learning differently!
Dana Herzberg, M.Ed.
JGS Founder & Head of School