What I knew about autism two years ago was textbook at best. I knew that autism is a sensory processing disorder and that symptoms often present in young children. I knew that prevalence is higher in boys than girls. I knew of the common symptoms such as rocking, speech delays, rigidity, and social implications. I learned these things from a textbook in college.
What I know about autism today is vastly different. Today my information comes from the front line as I stand beside my 4-year-old son with Autism Spectrum Disorder.
My autism education in an ongoing process. I learned many things right away; survival tactics if you will. Other things trickled in more slowly as we began navigating the spectrum. And there are many things that I am still learning.
I keep these lessons close to me. I use them to navigate our journey forward.
These lessons do not come from a textbook. They come from the head and the heart of a mother standing beside her child. Learning. Surviving. Embracing the spectrum.
Lesson 1: You will never know what autism feels like. I need my son to show me his world; just as he needs me to show him my world. But we are both just visitors in each other’s worlds. And, living in a different world from your child is unnatural and scary. But that is what parenting a child with autism is like. We are both trying and struggling to exist in a world that is unfamiliar to us.
Lesson 2: Autism sees no boundaries. Despite all of your defensive efforts autism will spread into every corner of your life. That is OK. It is better to know that it is everywhere than to wonder when and where it may appear.
Lesson 3: Choose your team wisely. You cannot walk this journey alone. Surround yourself with people who will build you up and make you stronger.
Lesson 4: Symptoms and behaviors come and go. And sometimes, when you think they are gone…they come back. This is just a fact. You can strategize and redirect until you are blue in the face. Sometimes behaviors will go away. Sometimes they will stay away. Sometimes they will come back.
Lesson 5: Stop apologizing! You do not owe anyone an apology. Not for the behaviors of your child. Not for your own struggle to hold it all together. Not for the appearance of your house. Not for the unanswered text messages. Not for the doubts and fears that live inside of your heart. If you keep apologizing, then you will keep believing that you are doing something wrong. You did not choose this path; you were chosen. Stop apologizing!
Lesson 6: Everyone needs a break from time to time. Breaks are not a sign of weakness. Breaks are the way we lift our heads high and live to fight another day. It is easy to get caught up in the schedules and the treatment hours and the progress. Sometimes I look at my little boy and wonder how I ask him to do all he does each day. So I divert from the schedule, and I give him a break. And, I give myself a break.
Lesson 7: If you have a power struggle with autism, you will lose. Your child is not in control, you are not in control; autism is in control. Pick your battles. Care less about controlling the autism and care more about controlling your reaction to autism.
Lesson 8: Do not let yourself be fooled by a good day or week or month. There will be harder days ahead. Find a balance between optimism and reality. Be unapologetically optimistic when things are going well. CELEBRATE! You and your child put in a lot of hard work and you deserve the good days. But, while you celebrate keep your mind and your heart ready. Stay focused and prepared for the harder days ahead.
Lesson 9: Some of the pieces you love the most about your child may be the autism. You have to take the bad with the good. And believe me, there is plenty of bad. But there is so much good too.
I love the careful and methodical way my son looks at things. The way he sees through to the core of everything. I love the way he guards the words “I love you.” He seems to know exactly when I need to hear them the most. I love the way his energy changes when he feels safe and secure snuggled next to me. I love the way that he catapults himself into the world, oblivious of his crash landings. This are pieces of him. Pieces of his autism.
Lesson 10: This journey is a marathon and not a sprint. There is no prize for getting to the finish line first. Why? Because there is no finish line. Autism is a journey that has no end. It takes you to the point of defeat and then it pulls you back. It shakes you to the core and then wraps you in a gentle and familiar hug. It is your villain and your hero. Your sentence and your pardon. It becomes the only thing you know to be true, and there is a comfort in that unexpected certainty.
These lessons are my keepsakes from this journey. Proof of obstacles overcome. Testaments of triumphs and defeats. There is so much more to learn. So much of this journey still lies ahead. So many obstacles. So many triumphs. So many defeats.
But each day I step into this journey a little wiser. A little more filled with the lessons I have learned along the way. A little more ready to face the road ahead.
No, I did not learn these lessons in a textbook. But they do represent something that is real. The quest. The pain. The perseverance. The power of love.