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The Holes in the Road to Autism
By Kristi | Published | No Comments
In life, we encounter and travel different paths. As a parent of a child with autism, those roads can lead us in many directions. Over the years of parenting I have found three common obstacles that I like to refer to as the potholes, rabbit holes, and the sinkholes of autism. Each has played an important role aiding me as both an advocate and parent. Recognizing their presence and knowing when to swerve, back up or even turn around has been a life lesson, one that still continues like many roads in life.
As a member of several autism groups on Facebook, I often read posts from parents encountering those bumps, many concerning children starting school, young parents with so many fears and unknowns, or those my age with adults with autism. While we may be on different paths, each of us will continue to confront our own potholes, rabbit holes and sinkholes. Knowing they exist and preparing for their arrival is how we survive them.
Speaking of social media, while the support and encouragement from others on the journey can be very uplifting, at times it can also be a rabbit hole. Seeing posts from other parents who have tried strategies and therapies with great success can scatter us in many directions. That is not to say that there aren’t many with merit but take it one step at time. Do your research and obtain as much feedback- both pros and cons, to make an informed decision. I have said this numerous times, if one thing worked we would all be doing the exact same thing. Going off in numerous directions depletes your energy and focus. One approach, one day at a time gives you a consistent picture and clearer direction. Fragmenting our efforts, following too many opinions or directions can lead to the worst rabbit hole of all. You began to doubt yourself, your abilities, your advocacy, and sometimes even your child. Welcome the experiences of others as there is much you can learn from them, but trust in yourself as well. Rabbit holes are for the rabbits.
I have found over the years that potholes happen with more regularity and are in some ways just a part of life. You are driving along, usually on a familiar road and bam, you hit a pothole. It was in the distance but you didn’t see it in time. Now it has your full attention. My potholes ranged from unexpected behaviors, challenging IEP meetings, inconsistent resources and supports, battling SSDI and SSI, lack of medical professionals with autism experience,advocacy that fell on deaf ears as well as ignorance and misinformation about autism to name a few. I would like to say those potholes have all been filled, yet I still encounter them on a regular basis. What has changed is my awareness of them and which direction to head. Instead of throwing my hands up in the air or getting angry, which was quite often, I now look for a way to fill the pothole. My son has limited verbal expression, so behaviors are often how he expresses anger of frustration. I’ve come to accept it and continue to look for ways to help him self advocate. It’s not perfect and never will be, but I’m ok with it. It’s a pothole I will refill, time and time again. Challenges at school, home programs, and vocational require our knowledge and expertise. Collaboration is key, especially in times of adversity. Remember you are advocating for your child and you want those on the other end invested in your child. Conviction, kindness and compromise will help fill those potholes. No one wins if the pothole just gets bigger and bigger with a my way or the highway approach to prove who is right or wrong. I know this one is challenging and that’s not to say I didn’t have my fair share of battles. I soon learned that when I encountered a defensive response, we were headed in the wrong direction. It’s ok to ask for help filling your potholes, in fact I recommend it. It is difficult for someone to feel defensive with you when you’re asking for help, but very easy if you are confrontational in your approach. We will not always agree on the best approach to fill the pothole, but doing it together lightens the load. The potholes are there for a reason, to help us navigate the road ahead.
In nature a sinkhole is a depression that eventually collapses when the burden becomes too great to support the land above it. When parenting and advocating for autism there is a similar paradigm, those times when we feel the bottom has dropped out. I feel certain many of us have experienced this at some point along the way. A sinkhole is unexpected and frightening. For most of us the diagnosis of autism was the first sinkhole. Our world turned upside down and the reality that we had no control or little knowledge of what lay ahead. Scrambling to find our way out and then once we reached the surface not knowing which direction to turn. I look back over 25 years and still wonder how we made it out. Every time I see a post from a struggling parent I’m reminded of it. So those of us who have been in that sinkhole throw a line and do our best to help them out. It’s the upward climb where you gain your insights, abilities and fortitude. And yes, it is an exhausting climb, but you do it, time and time again if necessary. Most importantly, ask for help in any shape, size or need. When we encounter the sinkhole it can shake us to our core and make us doubt ourselves. But in every sinkhole there is ground to place your feet and steady yourself. Look for the rope, grab it and start climbing.
Life with autism is an experience filled with lessons of unconditional love, both given and received. It teaches patience and perseverance in ways we would have never imagined without it. With any journey the road at times is met with bumps, pitfalls and holes of various sizes. So the next time you hit that pothole or find yourself going down a rabbit hole the most important thing to remember is this:
You are always your child’s best hope and champion, so don’t lose sight of that along the way.
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