It’s OK to not understand

They say, “I understand” is one of the kindest 2 words that you can say to someone. But is it? Does it really mean they understand? I have come across so many people who have said they understand our struggles, challenges, and even our joys that can come from the most ordinary of things. But do they? While people might say this with the most genuine of intentions, it might do more harm than good because it creates a roadblock in the channel for real, honest communication.

If you can’t list a different therapy that you’ve tried for almost every year of your child’s early life (and probably more), you probably don’t understand what raising a child with autism looks like. Skipping work to rush to therapies, and then in many cases, quitting your work to catch up with all the doctor’s and therapist visits that fill up your days and weeks is what you need to experience to even start being close to understanding what it is to be a special needs parents.

If you have no clue what ABA, GFCF, SPD, SLP, IEP, ETR, ESY, ASD, OT, RPM, and many such acronyms stand for and these are not part of your daily conversation, you definitely don’t understand the life of an autism mom.

If most days you don’t end up wondering why you need to fight with the school, the system, and the society for what rightfully should be your child’s; if you don’t feel like your child is almost invisible to everyone unless you shout at the top of your voice and ask them to give him the opportunities and the considerations he deserves, if you never had to advocate for your child or run from pillar to post just to get those few hours of therapy at school or an accommodation at work, there is a lot left for you to understand about what the life of a special needs parent entails.

If your child has not stayed up all night, bouncing off the walls, while you lie next to him exhausted after a day of therapies, meltdowns, and probably a seizure or two, wondering how often you have to go through sleepless nights and whether you need to medicate your kid so that his hyperactive mind can take a break and sleep, you have no clue what being exhausted looks and feels like. 

If most nights, you’ve not wondered what the future would look like for your child and found yourself wiping a tear on your way to sleep, worrying in the quiet of the night, the darkness, metaphorically and dramatically compounding your apprehensions, you have not lived and understood the life of a special needs mom. In your weakest moments, if you have not wished to outlive your child, even if it’s for a second so that you will not have to worry about leaving him all alone without your care because he might not be able to do that for himself even as an adult, consider yourself lucky.

While most parents wonder what college their kids will end up in, we simply hope our kids will find a college that will accept them in the first place. For most of us, ensuring our kids can lead an independent life is more than what we can wish for. What a lot of us work towards everyday is not their MAP scores but towards teaching them ways they can go through their day without needing assistance. If you never had to worry about the possibility of keeping your grown-up child in an assisted living facility, believe me, you are far from understanding what it is like to be a parent of a special needs child. 

Do you think twice before changing a dirty bedsheet, rearranging your furniture, or staying in a hotel on a vacation? If you are a parent of an autistic child, you do. A change can almost feel like the world has come to an end – meltdowns, anxiety, OCD, aggression, and several other manifestations of their inability to deal with the change can wreak havoc on a seemingly quotidian task. If this sounds crazy, you still have no idea what being a parent of an autistic child is like.

Me: If God appeared before you and asked you to make a wish, what would you wish for?

My hubby: That our son does not have autism anymore.

Me: hmmm

Both, a little teary-eyed (after a pause): But we will miss our son then. His unique personality, his adorable way of communication, the heart that knows no vices, the innocence that lies behind those eyes, and that smile that hugs your heart, …we will miss all of that because his autism, while it comes with all the challenges, also makes him extraordinary.

If this is not a conversation you have had in your house, you probably don’t know where we parents come from.

If you’ve not been excited over your child saying a Hi back, making eye contact during a conversation, tolerating a certain texture in food or clothing, saying his name or looking up when his name is called, smiling back, having a friend, answering a question – any question reliably, dressing on his own…the list goes on, then you do not know about the little joys that fill up our lives. You do not know what having an autistic child means.

If you think this is an exhaustive list of what having a child with autism looks like, believe me, you are far from wrapping your head around it because I’ve just gotten started! 

If after reading this you feel like our lives are miserable and feel pity for us, then MOST definitely you are clueless about what our lives actually are. We might be facing all kinds of roadblocks and challenges but if there is one thing that makes it all worth it, it’s our child. There is a lot of joy being with him. As I have often said, he is the joy in worries and the smile behind our tears. You have no idea of the love, laughter, and miracles that fill our lives if you have not lived it. So, if you do not understand, it is fine.

It’s ok to not understand our lives because you are not living it. There are so many layers to our autism story that we ourselves are unraveling every day, so if you find yourself overwhelmed making sense of it all, it’s ok to stand by and just watch, without judgment, because to judge, you need to know. You don’t need to understand, but if you want to help, all we need from you is to be there for us, be sensitive and mindful and just be kind.