I’ve read them too. “The Ten Hardest Part of Being an Autism Parent” or “The Ten Things NOT to Say to an Autism Parent”, etc. etc.
While I understand why people are trying to speak out to help others understand Autism, one size does not fit all. Just as ASD is exactly that– a spectrum– families, spouses and children experience Autism in a completely different way. There are hard parts. There are hilarious parts. There are frustrating, beautiful, victorious, terrible and amazing parts of Autism.
Many believe that Autism kiddos are stuck at home all day long banging the back of their heads against the wall or spinning toy cars round and round for hours on end. The truth is you have encountered SEVERAL people with Autism and haven’t ever known. The beauty of a spectrum disorder is the spectrum! There are some very low functioning children (and adults!!) and also those that are high functioning. While we’ve been experiencing high functioning Autism with Lucy thus far, she constantly changes with progress and sometimes, falls much farther behind.
But if you didn’t know this already… there is all of those things in parenting a typical child as well.
I will NEVER say my job as an “Autism” mom is harder than that of a “typical child’s” mom. Being a parent is hard. Period.
While my job as an Autism mom may not be “harder,” it does look much different.
1. Perfection. Don’t you dare mess up Lucy’s line of toys she’s spent so much time perfecting. Don’t move a toy without her knowledge.
2. A meltdown is not the same as a tantrum. Lucy needs LOTS of processing time. She needs time to herself, don’t talk to her or touch her. Don’t have expectations. She is NOT being naughty, she is over-stimulated, needing sensory input or processing time to understand why she isn’t getting what she wants.
3. Little sister syndrome. Autism does not only affect Lucy. We have to embrace it as a family. Unfortunately that sometimes comes with downfalls. Often Eleanor is left out. Lucy requires more appointments, one-on-one time, different punishments, and honestly, more attention. I find myself talking about Lucy more than Nora because I have unique struggles I share. I believe it is a privilege and responsibility of mine to share my experience as an Autism mom to spread awareness and equality. (Side Note: it absolutely HAS to be mentioned that though Lucy is the one with a “disability,” Nora is absolutely my most difficult child. She has a temper, sass and high-maintenance personality like you wouldn’t believe and she WILL be the one keeping me up at night. She is my real-life sweet and sour patch kid. So sweet and so wonderful, but such a terror! Ha!)
4. Transition. She goes to school five days a week and five days a week it’s hard to get her out the door. She knows the routine, but that doesn’t make it easier to go to one place to another. We need to plan for extra “stress” time. There are no trips unplanned. And if there ABSOLUTELY is, there is bartering, endless discussion and lots of “It’s okay, you’re fine.” (But am I just telling myself that?)
5. Grooming. Hair brushing, brushing teeth, trimming nails… INSANE. We’re talking every trick in the book. Want a freaking pony? I’ll buy you one if you just let me brush your hair. Distraction is key. Let’s watch a movie, drink some juice, eat some popcorn, talk about funny things and I’ll possibly get one fingernail trimmed.
6. Money. I recently spent $68 on a weighted blanket. And honestly, that’s money I don’t really have for a blanket. Four trips to her psychologist (after insurance paid their portion) cost me more than $600. There’s no cost to my daughter’s needs, but….
7. Pain. I’ve witnessed, on several occasions, trips, falls, head-bonks, with no tears and adamantly shouting, “I’m fine, I’m fine.” And also watching the dog brush up against her while she cries, “Piper biting me!” It’s hard to tell someone else what hurts. It’s hard to explain pain to someone who feels it differently.
8. Abrupt changes. Changes in schedule, people, sudden noises… Ahhh!!!! Don’t even get me started about a trip to the dentist or doctor.
9. Friends. “Does not engage.” “Does not perform at age level.” “1 out of 5″….. it wears on my heart and soul. I want her to find others that truly love her. I pray that children look past her quirks and embrace her.
10. Poor communication. More than half of what Lucy says it rote memorization, or things she’s heard on movies, song lyrics, or something she’s overheard. Another issue we deal with is her comprehension skills. She often needs additional processing time.
“What did you do at school today?” I’ll ask when I pick her up at the bus stop.
“Dad is in the silver car!”
“Yes, Lucy. But listen to what Mommy is asking. What did you do at school today?”
Silence. Typically this causes issues when we need to know what she wants, what she feels, if she doesn’t feel well, as well as others having the expectation that four-year-olds are able to communicate independently.
11. Love. She hugs and touches Devin and I. It is apparent in her words and actions that she “loves” us, but if you watch closely lots of hugging typically indicates her needing sensory input. She rubs my neck, softly pinches my arms, hugs, hugs hugs. “I love you SO much. I just love you, Mommy.” Beautiful. But does she understand what she’s saying? Or just like most of what she says, is she rote memorizing sweet phrases to share with others? That’s hard. Maybe that’s the hardest. But it’s also the easiest to roll with. I’ll let her hug and love on me all she wants because I need it.
I can go on and on and on and on and on about how amazing Lucy is. Trust me. But it is hard. Being a parent is hard. Being an Autism parent is hard. I never know if what I am doing is helpful or hurtful, but who the hell ever knows what they’re doing?
I will tell you one AMAZINGLY HUGE difference between a typical parent and myself. Our victories are much sweeter. Ever squeaked in total excitement because you watched your child say, “hello”? I have. Ever experienced insane joy after hearing that your kid participated, even in the slightest bit, at circle time? I have. I’ve felt tears well in my eyes after watching the “tiniest little things” that, in fact, are HUGE strides for her.
Proud can’t even begin to describe how I feel. Proud and tired. But then again, maybe that’s what all parents feel.
P.S. I want you to know that I would NEVER change anything about my happy, silly, beautiful daughter. Having Autism is what makes her unique. And though it may be challenging at times, we’re so blessed to be invited into her world.