Bright skinny sheets of sunlight separate fat gray clouds of the humid HomeGoods parking lot. Mim and I are going in for a long stroll and a marathon candle smelling session in the air conditioning.
We get out of our Subaru like always- she darts out claiming to have a pain in her tooth or her belly button. I run around the car to quickly deflect any oncoming reversing cars. She knows to look and she looks for cars at times and she also forgets. She is wearing high heels that she has bought at Goodwill with her “stars.” She earns stars when I need to redirect her behavior and get her back on track. The heels she chose are extremely high and flashy. A drag queen must have donated them to our Goodwill. Lucky Mim and lucky me.
In this very parking lot, I once had to bam on the trunk of a car who didn’t notice Mim and was backing into her. She can see. Her glasses work well to correct her vision, although her depth perception is not perfect. But she is visually impaired and when she is excited she may be focusing on something else like if I will let her buy jellybeans or fearing bird poop will land in her pony tail and completely forget proper parking lot behavior. The driver of the offending car was very apologetic and concerned.
Holding sweaty hands, Mim swings my arm and steadies herself on her stillettos. I see a family watching us from the sidewalk. They are probably an extended family of people waiting under the metal awning shading the Homegoods. I assume they are avoiding any sprinkles that might plop from the daunting dark clouds. The family is a mixture of adults, no kids. Grandma, Two Aunties, One husband and a grown daughter. They are weighing their options as we approach. Should they smile at the woman with the pretty little black child in distasteful shoes? Or look away?
Mim looks up as a beam of light hits her sensitive brain and she makes an expression that she wears often. She contracts to the left a smidge. Left eye squinches closed. Head cocks to the left. Dimpled cheek on left raises. Shoulder smooshes her cheek. Mouth half open to show clenched teeth. Left side of her awkward smile pulls tightly. (Her extremely mild Cerebral Palsy is what allows this interesting expression. One side tightening more than the other.) One or two of the spectators glance at each other with a question in their eye. Is that pretty little black girl disabled? Did that crazy white lady let that child with a disability where those crazy shoes to the store?
I smile warmly to show that I am a friendly crazy white woman. I stand taller. And hold her hand tighter as Mim wriggles free and suddenly drops on all fours inches from the family’s feet.
They are attempting to watch without looking obvious. I pause. The family starts using ESP and they speak without words or nods. Each of their thought bubbles connects with the thought bubble of their family member. They know. I know. She has a disability.
I hope that their ride will pull up to the curb or that the clouds will reign down on us all, because I am uncomfortable for them and me.
The sidewalk at our Homegoods is landscaped with fake grass. Green soccer turf with the teeny tiny black gravel. Mim is examining the turf on her elbows and knees. Her face is two inches from the ground. The artificial turf and the grains of black rubber are extreme sensory heaven for my girl. I know after half a minute that the incongruence of having this ground here at an entrance to a big box store is speaking to Mim’s heart. She wants to know what the hell is going on and she is figuring it out. I ask Mim “are you ready to go in the store?” She can’t hear me at first. I stand next to the strangers with my daughter humming her tiny satisfied hum. We all stand waiting for Mim to answer. She replies, “almost” after a very long minute. I wait. The family averts their eyes. What else can they do? She rises eventually and hurries into the store on her unsteady heels.
How should I handle this situation? I don’t really have the answers.
I have decided to almost never rush her. My mom superpower is that I know when my kids need me to wait. Waiting is extremely valuable when parenting all kids but especially a sweetheart with a disability. I am not talking about waiting for them to finish a video game or a tv show. NO. I wait when she needs to explore or play. Humans are hurried. No one likes to hurry. So I wait for Mim as she examines the turf.
But – I want to explain to the strangers on the sidewalk. She has a disability. I want to fill the silence. I have been envious many times of families who have a child with Down Syndrome. Everyone knows why they are doing something special. But I also, know what a gift it is that Mim doesn’t always look like she has a disability. Maybe she is included or spoken to in different ways than a child with a known syndrome simply because of her looks.
I have filled these awkward pauses before. There have been times when I have said, she has autism. I feel guilty for doing this because Mim doesn’t have autism. I am ashamed that I wanted to use the label of autism as an easy way out of an embarrassing situation because if I do – the general population will not have an opportunity to learn about cognitive impairments or intellectual disabilities unless I explain. The general population knows something about autism and so this answer makes sense and the pause is comfortably replaced with a nod. When she threw the menu at the waiter because the fried okra is cut horizontally instead of vertically like she prefers, I said apologetically “she has autism” and he smiled and nodded.
Mim has multiple disabilities. She has a unknown and unnamed genetic syndrome. She has a vision impairment. She has Valproic Acid Syndrome or Depakote Syndrome. She has a tiny bit of Cerebral Palsy. She has microcephaly. And like many others without a specific named diagnosis, she has a developmental disability or you could call it an intellectual impairment or a cognitive disability. We grew up saying mental retardation but people misuse that term so much so no one likes to be called that. I don’t say Mim has special needs. I say she has a disability. I explain to kids who ask that Mim needs more time to figure out a lot of things and that some things are particularly hard for her to learn. With an intellectual disability can come a myriad of characteristics- speech difficulties, social difficulties, sensory impairments, delays in pottying, delays in swimming, extreme difficulties with emotional regulation, fingers that can’t button, a gait that is unusual, inability to sleep or self soothe and etc. There is very little maybe with Mim. It is fast and furious- this is the best day in the whole world and this is the worst day of my life and I hate you. She believes her dreams are real and woke up angry at me that I had pushed her out of a car. She thinks it is a good idea to wear one roller skate and one in line skate to help me work at my school library. She thinks she is starving when she is tired. She wets her pants when she is crying because her tears and anger made her forget that she just needed to pee. She allows no one to speak of planes or flying because of a serious fear of airplanes. People say she has a learning disability occasionally but she doesn’t. Her disability effects every area of her life- it isn’t only apparent at school.
Mental retardation (MR) refers to substantial limitations in present functioning. It starts before age 18 and is characterized by significantly subaverage intellectual functioning, existing concurrently with related limitations in two or more of the following applicable adaptive skill areas:
communication
self-care
home living
social skills
community use
self-direction
health and safety
functional academics
leisure
work
The American Association on Mental Retardation
The book Riding the Bus with My Sister gave a great understanding of what it is like to know and live with someone with a developmental/ intellectual disability. Rachel Simon “brings to light the almost invisible world of mental retardation” quoted from Goodreads.com. Coincidentally when Rosie O’Donnell turned that book into a movie she changed the disability to autism. I was pissed at the time in 2005- way before Mim.
Mim’s birth mom had multiple disabilities including an intellectual disability. She loved Dora the Explorer and The Young and the Restless equally. She had a deep desire to meet Dora even though Dora is a fictional animated character. She depicted her love life like the character on a soap opera. She thought both were equally real and attainable. That kind of worldly understanding is hard to describe in a text book or to define in a dictionary.
It isn’t that Mim or any person has an age equivalent that can determine their outcome or behavior. Her birth mom was described as on an eight year old level. How many eight year olds do you know live without parents in a subsidized high rise in New York? How many eight year olds travel the sidewalks of a big city in a motorized wheel chair? How many eight year olds give birth to a baby and choose adoption? Maybe she is able to write and read in the same manner as an eight year old. But that number or age describes very little of her birth mom. She was eight years old intellectually with 50 years of life experience from the viewpoint of a member of the Disability Community.
Mim can be described as intellectually about half of her actual age. She is 10 years old and maybe more like 5 years in terms of social development, fine motor development, adaptive skills, communication and academics. There are many days when her emotions are stuck at age three and the tantrums are intense. She has better sense of direction than me. She can ace block puzzles on the iphone. She can convince a family of eight to do exactly what she wants. And an hour later she can scream she hates us all and wishes she was never adopted. This kind of tantrum is often prompted by either Frida (our bulldog) stepping on her toe or her swim goggles leaking. She has very little ability to play or occupy herself. She avoids kids who are playing games because she is afraid of directions, rules, eye rolls, and exclusion. She loves me fiercely and thanks me profusely for buying her fried chicken when the line is long at the farmer’s market. She should not be able to have empathy because she isn’t developmentally old enough for empathy but she does. She worries about Mum missing Aubee, since he died and so she tells us what he is doing in heaven. She cusses like a sailor- well mostly she says crap 100 times a day. She has the best memory and reminds me of incredible moments. She is a mystery. That is why she is “exceptional” or “special” because she is inexplicable. Brains are intricate incredible organs and hers is unlike any other that has been studied. She is Mim. Mim.
I describe how she learned to ride a bike when I am explaining to kids about Mim’s disability. The first year she tried, she just pushed it with her feet and ran into everything. Next, she learned to balance with her feet on the pedals for a year but she couldn’t stop and she couldn’t steer. The next year she learned to steer- but she forgot how to balance with her feet on the pedals and steer at the same time. So she steered and pushed with her feet on the ground and that worked well because she wasn’t running into things. The fourth year she was learning to ride her bike, she learned how to pedal and steer at the same time- but still no stopping. The final year at 9 years old, she could ride the bike without worrying. Now, she prefers roller skating.
But on a steamy sidewalk, in the heat of a moment, I can’t explain all that. I can’t say the words to help a family understand why my daughter has on heels and why she is putting her face an inch from this turf.
I follow Mim into the store, and wonder what I’ll do next time something like this happens. A piece of me loves it. Not average. Not boring or regular. Just Mim.
Momoirist 