10 Years of Learning to Parent My Neurodivergent Kid
A letter to the fierce, brave and loving parent I was 10 years ago.
What Would You Tell Your Younger Self?
In what areas do you recognize that you still need to grow?
I’m always learning and growing. A decade of parenting my kid through diagnoses of autism, anxiety and ADHD has been a fierce awakening.
2021
I was sitting with a friend of my parents at a family gathering, feeling awkward. Pausing in thought, I was confused and disoriented. This acquaintance had just made a remark about my son.
“It’s incredible what you have done with him!”
It was meant as a compliment. My discomfort and people-pleasing caused a desire to squirm my way out without causing offense. My commitment to justice and respect sparked a need to preserve my son’s dignity. I paused to think about how to respond. Still unsure, I pulled up one of my standard responses, “He is an amazing kid.”
Not good enough. They countered, “…but the way you’ve worked with him… he’s so engaged, communicates so well…” They looked imploringly into my eyes, smiling with encouragement. I tried again, “Thank you. He works really hard.”
This person, whom I feel warmly towards but rarely see, shook their head. They so wanted me to acknowledge my role as savior. It was so important to them that I take the “compliment.”
They so wanted me to acknowledge my role as savior.
Sighing internally, I tried to end the conversation with another of my standard phrases, “Who better than us to parent him? He chose us because he knew we were ready.” I saw the shift in their eyes, somewhat satisfied and somewhat bewildered, and I hurried to change the subject.
I felt icky. How much to try to educate over dessert and Chardonnay? How much to call out ableism?
I have more experience and confidence calling out racism when I see it. The relative who makes a racist joke, without the awareness that they are doing so, will hear from me swiftly and eloquently.
So why couldn’t I speak up more forcefully as an ally to my son? Parenting a kid with autism, anxiety, and ADHD — while working with my own anxiety and SPD — I’m still getting my footing, and learning how best to navigate one of the last bastions of bias still acceptable at dinner parties.
Conversely, how truthful was I really being to myself? Is it really true that “He chose us because he knew we were ready?” He may have chosen us, but honestly, we were not ready for my son.
2011
10 years ago, I was 42. This is the memory that rises to the top — a more intimate dinner table conversation. Our 11 month old son was sleeping. It had taken hours for him to settle into sleep, and I guessed that we had a window of 45 to 90 minutes before he would be awake again. I knew I should catch some rest while I could, but this was a conversation that couldn’t wait. I sat my husband down.
I was shaking. It had been so hard to become pregnant the first time, I don’t know why conceiving again felt like an imminent threat. The fear of having to go through another year like 2011 overwhelmed me. I just knew I had to sit down and talk about the future.
Through tears, I told him I didn’t want to have another child. He took it well. He could see how exhausted I was, how my moods were swinging wildly, how I could barely hold it together when our son woke up a dozen times a night. Unlike both of them, I couldn’t fall back asleep easily.
There were so many aspects of parenting that were hard and unexpected that I was barely functioning. Our son was intense and we couldn’t tell what was triggering him. Of course there were joyful moments, but I was forgetting how to feel happy.
I was the one who had always envisioned having two kids. I had a lot of fantasies about parenting that weren’t bearing out. I was waking up to reality.
Right then, I had one agenda: Make a plan to never get pregnant again. We decided that if we wanted to have more kids in the future, we would adopt. I knew we wouldn’t. I knew then that I would devote my energy to learning how to be the best parent I could to our son. I didn’t know much back then, but I knew I had to show up fully for him. Whatever that meant, I knew there wasn’t room in our family for more.
We were so in love with him, but it was hard from the start. I felt completely fulfilled and completely overwhelmed at the same time. He was the kind of baby who needed to be held upright and bounced most of the time. Nursing was hard. He dropped off his weight curve around six months. He didn’t sleep much. I had concerns about his development.
A Letter From 2021 to 2011:
Dear Kate,
Your fierce love and courage will see you through. Your life is actually going to get harder before it gets easier, but you will have this experience to draw on to prove to yourself how resilient you are. You will sleep a consecutive 9 hours again, eventually.
- First, you will sleep train, and it will be awful.
- Then, you will self-refer to Early Intervention, where you will start to learn about the special education system and meet an incredible Physical Therapist who will set you on the path to understanding your son’s needs better and better.
- You will need a small heart surgery (but they won’t tell you until afterwards that you can’t lift your son for two weeks).
- Then, you will learn more about special education and become a more effective advocate.
- You will meet other parents, and some of them will gently call you out on your ableism. You’ll thank them and go learn from autistic self-advocates to do better.
- You will read everything in sight that helps you understand your son’s diagnosis and the special education process. Your brain will grow so fast it hurts.
- You will become a more enlightened person through the act of fiercely loving your son — way more than you ever could through yoga and meditation.
- You will surprise yourself by writing a book about your experience to help other parents of atypical kids.
- Your kid will surprise you, period.
Most of all, I’m writing to tell you this:
Be kinder to yourself.
Your son needs to see you be kind to yourself. Nothing is as big an emergency as it seems from your perspective now. You are supposed to make mistakes, that is how we learn and grow.
You aren’t alone.
Already you’re reaching out, building a network of friends and professionals you can trust. Lean into that support and ask for more help. It is okay to take breaks and work less. The most important term you will learn is co-regulation. Listen for it.
Attune to your son.
He is wise and will teach you how he needs to be parented. His growth, creativity and empathy will bring you to tears. His rage will, too. He will need you in different ways.
There will be other guides to help you become more fully yourself. You will gingerly step into leadership, forced by a global pandemic.
Tune out the noise.
Many voices will contradict your intuition, but it will prevail. Yes, your marriage will survive. Please give it some attention when you can.
Be patient with yourself, your husband, and your son. Be even more patient with extended family, old friends, and acquaintances. It will take them longer because they are not living this life with you. Remember that every one of us has our story.
Your parents will get older and need more, just as your son’s challenges become more nuanced. It is evolving… Let’s not think about adolescence quite yet.
Avoid comparison.
You will watch your nieces thrive and all the feelings will be there at once. You can hold the complexity. You can, because you love so fiercely and that love ignites you to be present, wholehearted and brave.
Now stop worrying about what might have been.
Our family feels just right. Get out there and live your life. Oh, and buy stock in Pfizer and Moderna.
Love,
Kate
How Has Your Perspective Changed?
These two moments are frozen in my mind: Sitting at a table in an intense, uncomfortable conversation with another human. That is where the similarities end. My husband empathized and was open to my perspective. Looking back on that moment ten years ago, I have so much gratitude that we made that decision together. Our family has grown in wisdom and kindness rather than numbers. It really does feel just right.
Our family has grown in wisdom and kindness rather than numbers.
My acquaintance just hasn’t had the opportunity to learn everything I’ve learned in these utterly transformative ten years. Not yet! I can educate, but I can’t transmit my experience, because we built up to this point. My son is not a piece of clay to be molded. We have overcome one hurdle at a time, together. Each time, we have grown.
We are committed to seeing each other in our wholeness, and we are on this journey together, the three of us. I don’t know how to transmit that at a dinner party, especially to someone who isn’t ready to take it in. Ten years ago, I wasn’t ready either. I didn’t feel equipped to parent my kid, but I do now. So I can patiently explain that all lives are complex, and if anything is incredible, it is what my son has done with me!
I still have a lot to learn about advocating for disability rights within our entrenched, ableist culture. Maybe ten years from now, I’ll look back and reassure my 2021 self, “You’ll get there.”
What would you tell your younger self? How has your perspective changed since you realized your kid was different, and how much do you recognize that you still need to grow? What is your relationship with Neurodiversity? Feel free to tag me, I’d love to read your letter.
Thank you for this prompt Jillian Enright.
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