A Day In My Life With A Special Needs Child
Let me share with you what it’s like to experience just trying to eat lunch at a freaken Coco’s restaurant with Shae, my son who has autism.
So, the other day I am in out, trying to eat lunch with my Tio and my best friend. Shae is in his stroller where he feels safe. I’ve got all the gear prepared to handle any tantrum or fit he may potentially throw.
I’ve got his iPhone 4 equipped with ABC mouse, all five apps, YouTube “marble run” videos at the ready, I’ve got his chuppie (pacifier in Spanish) his flax milk in both a bottle and a cup … *both sensory items.
I’ve got snacks the color and texture that Shae prefers. And I ordered him mac & cheese and French fries, both on the “Shaeland” approved carb list for kids who hate items that are colorful. Shae likes foods that are white or plain in color. With the exception of watermelon which is red … thank goodness for that …our saving grace.
We order and it’s hot in the restaurant. The waitress is sweet and brings us whatever we need when we ask. She brings us a high chair and I reluctantly put him in it knowing Shae doesn’t do well in high chairs but holding out hope that maybe today will be different.
I put him in between me and my best friend who he really loves. I guess she just gets him. Shae is excellent at reading people's vibes. He truly knows when someone likes him and when someone doesn’t, including me and his dad. Lol.
Shae starts up…he throws a crayon on the floor, then a second. He drops his cup on the ground slowly and deliberately while looking straight at me. I tried putting him back in his stroller and offering him everything. He screamed and cried which is always horrifying for any mother because we do not want to ruin everyone else’s meal . TRUST ME, WE DON’T.
He is becoming “disregulated” a word that best describes what is happening when he is feeling overwhelmed by the sights, sounds, smells, or energy that is in his environment. Is the restaurant loud? Not to me. Is it bright inside? Not to me. To me the place is just in dire need of better air conditioning. But I am not the one with autism.
My Tio, who is in his 70s, is doing his best not to give his opinion about all of this and I do my best to explain to him about Shae and talk about how different he is than Noel. I explain to him why Shae has a therapist and what his diagnosis is. He seems empathetic and doesn’t give me a hard time which I appreciate.
Meanwhile, my best friend took Shae to the window so he can look outside and I can eat quickly eat and enjoy just an ounce of my meal. I see Shae testing the limits with her and eventually getting on the floor which is just gross and, after a while, it’s pretty clear that it’s time to go.
So, we pay the check and Shae says he has PooPoo in his diaper so it’s time to go change him. Praying for a diaper changing table on the way to restroom and avoiding every waiter holding a tray full of food on the way, we make it to the restroom and Shae freaks out.
As we go into the restroom we get thru the diaper change and I have to pee. Shae screams “TOO LOUD MAMA TOO LOUD!”And it finally dawns on me “oh shit this kid is scared of the toilets flushing”. Yes, for all you experienced and seasoned SN’s moms out there, yes it did indeed take me 3.5 years to put two and two together. So shoot me.
I can’t even imagine how loud it must be to Shae. He hears things from so very far away that I can barely hear. He feels the UPS truck coming down the street before I ever do. He runs to me when we are outside playing and says “too loud too loud”. He can hear the train that is at least 15 mins away walking. And here we are in the public restroom that amplifies the sound of toilets flushing and my sympathetic mama bear heart kicks in and I ask my friend to please not flush the toilet unless she has to because I wanted my toddlers stress to be alleviated.
As we are leaving, I hear a lady tell my friend Stephanie, “Oh, you didn’t flush the toilet” and Stephanie explains to her that the baby gets scared of the loud noise. I do my best to have that ever present logical conversation with Shae because the lady does flush the toilet. I say “Shaaaeee… toilets flush, that’s what they do, you are going to have to get used to it eventually.”
And I hear this woman say… “NOW I’VE SEEN EVERYTHING”.
So what would you do? I mean there are sooooo many options right?
Option 1: Do Nothing. Say Nothing. Finish washing your hands and leave.
Option 2: Cuss her out. LOL.., yeah I know that’s not an option.
Option 3: Say Something…. But what?
Well, I chose option 3.
ME: “Oh no trust me ma’am, you haven’t seen everything. You have no idea”
STRANGER: “Oh, yes I do. I have a son.
ME: “Oh really does your son have autism?”
(Mind you the lady is still in the restroom and neither of us have seen each other yet.)
STRANGER: “No he doesn’t. But I’ve worked with children for 30 years in the Downey school district”
ME: “Well ma’am, then you of all people should know that all children are different. And I am shocked to hear such a negative and judgmental comment come out of your mouth. Have a nice day ma’am. GOD BLESS YOU.”
Exit restroom before woman leaves the stall.
Still fuming… I go outside where my Tio and friend are and I tell them about what happened. My friend says “I’m proud of you. You stuck up for Shae and you did it calmly without losing your cool.”
Still there is something inside of me that feels like I just didn’t do enough. There is something inside of me that is a GOD given thing, it's that little voice that says, “You don’t want other mothers to have to go thru what you are going thru and you can fight to end the stigma and to help change people’s perspectives. “
As we are sitting there, the lady comes strolling out of COCO’s and walking very slowly and using a walker and something inside me wanted a redo. God says “Be Bold”… So, I got out of my car and went up to her and introduced myself...
"Hello Ma’am." I introduce myself and offer her my hand and she accepts.
I say, “Did you enjoy your breakfast today?” She says, “Yes, it was lovely thank you for asking.”
I tell her that I tried my best to enjoy my breakfast but that I am the mother of a special needs child. I explain that my son has a sensory processing disorder and that it makes being out in public nearly impossible sometimes. But that I keep trying.
I tell her that comments like hers really hurt moms like me because we struggle to find ways to deal with the challenges of raising our children and then when we are met with such negativity from strangers it’s just really discouraging. And staying home can lead to isolation which can then lead to depression.
She seems to be responsive and now that we are face to face there is definitely an effort of humanity and courtesy. She tells me that she never had to deal with any of those issues but that she has worked with some special needs children a long time ago.
I tell her that I have a blog that is dedicated to supporting other mothers of children with special needs and that I will be writing about today’s interaction to encourage other mothers to not give up, to advocate for themselves and their children and to help change the outlooks of people who are unaware of the daily struggles mothers like us go thru.
To be honest she doesn’t seem to thrilled about that part of our conversation but she doesn’t ask me not write it nor does she ask me not to mention her name.
After this experience, I’ve become a strong proponent of “Redo’s.”