Year one.
When I had Samuel, there were about 5 other children born that same year, 4 of them around the same months, October to December. I remember that by the time he was 18 months old, not yet talking and just learning to walk, I started feeling very concerned. I had no experience with children with disabilities, and I wasn’t aware of autism.
Samuel was 4 years old when he finally got his diagnosis. I remember receiving the news like a fog I couldn’t see through. Everything I thought I knew about my child, and honestly, about myself, suddenly felt uncertain. Nobody handed me a roadmap.
I remember going to church with Samuel and watching children move away from him. I remember adults making unkind comments. I remember not knowing a single person I could lean on or learn from. Nobody sat me down and said, “Here is what this journey will actually look like.“ I was just expected to figure it out, and for a long time, that’s exactly what I did. Mostly in the dark. Mostly alone. Mostly praying I wasn’t doing it all wrong. Mostly with my protective shield up. Mostly in anger. Mostly in frustration.
Years later, I write this not as someone who has it all figured out, trust me, I don’t, but as a mama who has walked long enough on this road to look back and wish someone had said a few of these things to me when I was standing at the very beginning of it.
So if you are in year one right now, this one is for you.
1. The grief you feel is real, and it’s okay to name it
When Samuel was diagnosed, I was consumed by grief. Deep, heavy, unspoken grief. For a long time, I would grieve when I saw children his age. I grieved what his life would be. I grieved my own life. I grieved my expectations for him. I grieved my career and personal goals. In my case, grief is seasonal — it’s almost revolving in a way.
What I’ve come to understand is that the grief was never about Samuel. It was about my hopes and dreams. The picture I had painted in my head of what his life would look like. The milestones I assumed would come easily. The future I had quietly planned without ever asking him what he wanted. Grieving that picture is normal. It’s human. But please, do not let the grief become the lens through which you see your child. Because the life that replaced my picture? It has been more beautiful, more surprising, and fuller than anything I could have imagined on my own.
Permit yourself to grieve. It’s normal. But then lift your eyes, don’t make it a permanent stop.
2. The sleepless nights are real, and Melatonin exists
I say this with full love and a little laughter directed at my past self: nobody told me about Melatonin.
In those early years, Samuel and I would be up for days. He wasn’t just restless, he was jumping. Stimming. Full of energy at 3 am while I was running on nothing, still showing up to work, still parenting his brother, still trying to function as a human being, still going through a very challenging divorce. And I suffered through it in silence because I was afraid of giving him “medication” and because I simply didn’t know what I didn’t know.
If you are in the thick of sleepless nights right now, please speak to your paediatrician about sleep support. You cannot pour from an empty cup, and you are no good to your child running on fumes. Take the help.
3. Not everyone gets access to your child, and that is not cruelty; it is protection
This took me years to fully accept, but I will say it plainly here so that maybe it won’t take you as long: not everyone deserves a front row seat to your child’s life.
I learned early that the village cannot always love your child unconditionally, especially during the hard moments. During the meltdowns. During the stimming. During the behaviours that make people uncomfortable. Some people will stare. Some will whisper. Some will say things that will break your heart. You do not have to keep making space for those people out of politeness or obligation.
I say this with all love: even your parents, your partner, and your siblings do not automatically earn the right to be in your child’s inner world. That access is given, not assumed.
Protect your child’s peace. Protect your own. Be selective, and be unapologetic about it.
4. The system is not designed for your child, go in knowing that
I walked into Samuel’s early school years expecting the system to meet us where we were. I believed that if I communicated clearly, advocated respectfully, and worked with the professionals, everything would work out fairly. And some of it did. But I also learned, the hard way, more than once, that the system is built around a neurotypical standard that our children simply don’t fit into.
Go in with your eyes wide open. Know your child’s rights. Document everything. Ask questions even when you feel like you’re being “too much.” Do not sign an IEP unless the support your child needs is properly documented. You are not too much. You are your child’s first and fiercest advocate, and nobody else will fight for them the way you will.
5. Do not set a ceiling on your child based on who they are today
This one is personal.
When Samuel started high school, I quietly adjusted my expectations based on where he was academically. He was years behind. The gap felt wide. And so in my head — without ever saying it out loud — I built a smaller future for him than he deserved. I am so grateful that Samuel did not get that memo.
He graduated on time. He went to college. He passed his G1. He competed in the Special Olympics. He did every single thing I had quietly decided might be beyond him, and then some.
Your child’s starting point is not their destination. Please stop measuring their future by their present limitations. Give them room to surprise you. They will.
This is still an area I struggle in, and I will one day write about how I changed Samuel’s college program because of my own fear. But as we learn, we make changes. He will return to pursue his passion once he finishes his current program. I have learned to be kind to myself when I’ve made a mistake or placed my own limits on myself. Now I’ve made the conscious decision to always remember: Samuel is the author of his journey. I am simply a guiding light.
6. You will be your child’s greatest student
Everyone talks about what you will teach your autistic child. Nobody warns you about what they will teach you.
Samuel has taught me more about patience, resilience, unconditional love, and the beauty of a different kind of mind than any person or experience in my life ever has. He has taught me that dedication looks like cleaning the house even when you are sick, because it is your scheduled day to do it. He has taught me that love doesn’t always come in words, sometimes it comes in presence, in loyalty, in showing up. He has taught me that joy doesn’t require explanation.
I came into this journey thinking I was the teacher. I was wrong. I am the student. And I am grateful every single day for the classroom.
7. Your support may become lean, right when you need it most
I won’t sugarcoat this one. There will be people who disappear. Friends who don’t know what to say, so they say nothing. Family members who love you but cannot fully enter this world with you. A community that doesn’t have the language for what you are carrying, so they keep their distance.
In my culture, we don’t always talk about these things openly. Disability isn’t always discussed. Struggle isn’t always shared. And so I found myself carrying something enormous in near silence, surrounded by people who cared about me but couldn’t quite reach me where I was.
What I want you to know is this: their absence is not always rejection. Sometimes it is fear. Sometimes it is ignorance. Sometimes it is their own limitation. Try not to let it harden you — but also, do not wait for them to show up before you take your next step.
Find your people, even if they are strangers on the internet. Find one parent who understands. Find one space where you don’t have to explain yourself. That community exists. And when you find it, hold onto it.
Year one is hard. It may be the hardest year. But it is not the whole story.
Hold on. Keep going. And on the days when you cannot do either, rest, cry, let it out, and then get back up. Because your child needs you, and you are more capable than you know.
Shalom. 🌿