I don't understand.
Are you really going to workout? Or are you just going to park in your car and nap for forty-five minutes?
Did you really make that homemade lasagne for the potluck? Or did you buy it and transfer it to tupperware in the nick of time?
Did you really make your daughter's Christmas dress? Or did you buy it and add a ribbon for effect?
Did you seriously just volunteer to help with the school play? Or will you back out last minutes because you put your back out?
Where did you all come from? Where do you get the energy.
The Goddamn sewers and the bakers and the fucking candlestick makers. I can't keep up with you over-achieving assholes so take a chill pill and relax a spell. I want to feel like a good mother once in awhile.
Do you know what I am proud of today?
My eldest read a chapter book for fun!
My youngest only hit me once, and she caught the extra weight in my thigh so it hardly hurt at all.
My eldest told me my attempt at eye-makeup was beautiful.
My youngest bit no one at school today.
My eldest did a weeks worth of homework in an evening.
My youngest told me that dog hair "wouldn't make me die".
That's my win. That's it. That's all. That's everything.
What makes you proud?
A great and ferociously clever friend of mine once said: "I am so sick of people diagnosing themselves with autism because they don't like parties." Or something like that; I don't know; I wasn't listening.
The point is, just because it's popular to be super anti-social these days, doesn't mean you get to self-diagnose yourself with autism. We'd all rather stay in and watch Netflix. That doesn't give you the right to pretend you have a very serious neurological disorder.
If you think skipping social engagements because 'peopleing' is too hard, gives you license to call yourself autistic than you're not the lovable quirky side of normal. You're an asshole.
When you equate your anti-social behaviors with autism you negate the hard work and struggle individuals with autism go through every single day. A communication disorder is not a meme about avoiding the phone (again, we all do that). It's a life-changing neurodevelopmental disability that can make negotiating social situations frightening, confusing and even painful.
Have a little respect.
Oh, also, you don't have OCD because you like your remote controls all lined up beside you when you watch TV.. How many groups are you going to insult today?.
I don't know how to tell you this, but the truth is, your neurodiversity movement is making me really fucking angry. Oh, looky there, I guess I did know how to tell you.
Things that don't make me angry:
Things that enrage me:
Internet assholes telling me I am hurting my child because I refuse to celebrate her disorder.
When I log on so many tell me over and over that I am hurting my girl by not allowing her autism to shine.
By "shine" do you mean allow her to become so agitated by confusing and overwhelming sensations that she cry and lash out?
If she had diabetes should I let it fucking shine. Should her milk allergy be allowed to shine? What about her love of biting assholes like you? Well, yes, maybe you've got something there.
I know so many of you want me to embrace her autism. Celebrate it, even. This really only serves to frustrate me. If you're coming from a good place when you write to me, I usually can see that right away. I understand that and I simple delete the message because we shall agree to disagree. If you're attacking me, as many of you do, I get pissed and here's what I want you to know.
My daughter has a disability and I cannot transcend that fact with positive thinking about different operating systems and feel good stories about the school basketball team's quirky manager. Nor can many of you. You know pity porn when you see it. But, you still insist that autism is not a disorder, but a gift.
I am not afraid to say that if you've been lightly affected by autism; If your autism is of the so-called high-functioning variety (and my own daughter's may very well be) than bully for you that you can write about how fucking amazing autism is for you. This is not the case for everyone.
Is self-injurious behaviour a gift?
Is fecal-smearing a gift?
Is being lonely, afraid and confused a gift?
I won't be bullied into the neurodiversity movement. When you attempt that you marginalize so many.
Grace was born in the spring. She was our first. The moment she was placed into my arms and I looked into her eyes I finally understood the term 'soul mate'. For this little dark haired baby was surely mine. My heart ached when she was taken from my arms by the nurse and continues to ache to this day when we are not together. She is anxious and kind, timid and loving, sensitive and oh so smart. As she grew she would crush the milestones in the baby books. She spoke so early and so well that her father and I would often be approached by strangers who had overheard her detail her day. "My, she talks so well. How old is she?" We would beam, and answer "just two" and then we would bask in their compliments, all the while, feeling like fantastic parents. She was our star and we held her up to the world so proud and she beamed down on us, just as it should be.
Kate was born in the spring just two years after Grace. When they placed her in my arms I searched in her blue eyes awaiting the connection I had been expecting for nine months. I couldn't find it in her eyes. I looked to my husband and back to my baby. I looked to the doctors and nurses but they didn't seem to notice. She didn't snuggle in and grasp for me like her sister. I could tell she didn't know I was there and I was devasted.. I smiled and said all of the things I was supposed to say but I was terrified because my baby had not connected with me and I didn't know what to do. Soon my husband would return to work and I would be home with my two small children wondering what I had done wrong..
In those early weeks I would spend hours staring into Kate's eyes. I haven't admitted that, yet. I thought maybe she was blind, or deaf, or both. Why didn't she look at me? Why didn't she reach for me?
During these weeks, Grace, our shining star, took a back seat like no other. It would be a seat she would quickly get used to. I had to fix my baby. Grace would be fine with her 'Little People' toys and her board books while I worked to get Kate to notice me. Grace was clever and a good girl. She would be fine if I focused some attention on her sister for awhile.
"There something wrong with Kate." I would say to my husband, with tears in my eyes.
"Don't be ridiculous," he would say :you're just hormonal."
"I'm scared." I would say.
"She is perfect. I promise." He would say.
It would be years before I would know that sentence to be true. Two years in fact until we got her diagnosis of autism and two more before we really wrapped our heads around what that meant for Kate and our family. I would finally find that connection I had longed for when Kate was baby, and those bright blue eyes did not disappoint once I reached her. She is the most loving and wild little spitfire. She loves with all her might and she believes that everyone and everything is amazing.
What then, of Grace, while we spiralled into despair and fear and finally fierce protection for our child who would always struggle in a world built to overwhelm her?
Grace would become painfully shy. Her new role as 'autism sibling' would take over. She would grow anxious about many things, with her biggest worries pertaining to her sister and myself. She sits silently at countless specialist appointments twirling her hair as one professional after another says things like: "Developmental Delays" and "Communication Disorder".
She was there at Kate's first occupational therapy appointment when I cried because the weight of it can hit you at the most inopportune times.
She was there the many times when Kate lost her words and would bite my cheek, or arm or back to tell me she was angry, confused, and overwhelmed. She was there when I cried then, too. Not because it hurt, though it did, but because it made me so unbearably sad at times.
I compared the girls at every turn. Have I confessed this yet? I still compare. It one of my worst habits.
Grace was talking so early, and shows such academic promise.
Kate confuses words and their meanings and can be aggressive when she is afraid.
Grace is fearful and cautious and won't step too far from me.
Kate is fearless and strong and won't ever look back.
Grace watches Kate as I do. She watches and wonders and thinks about her even when they are not together.
Sometimes Kate gets so agitated that she gets aggressive and unreasonable. This will sometimes happen in public. This is the quickest way for Grace to go invisible.
She watches and listens and reaches for my hand every single time and she stays invisible because she feels we cannot manage much more than what is on our plate.
She stays invisible whenever her sister acts out, which was and can still be so very often.
She's become the invisible girl for her baby sister and it breaks my aching heart.
She loves this blog. She is proud of it and proud of her baby sister. We've asked if she would like to be the subject or author of her own blog and she is thinking long and hard about it. She is shy, you see and it's always been easier to let Kate take the attention.
She is still our star, you know. She aces her math tests at school and she talks of becoming a teacher some day. I cannot bear a day without her kisses and hugs and I tell her so every chance I get.
"I love you, Grace."
"I love you more, Mama."
"Not possible, Baby,"
"I know, Mama."
She is a good friend and fine student and the most lovely little daughter anyone could ever ask for.
She cries when she thinks someone is embarrassed. She cannot bear it for them. I love her tender heart so much.
She is my best friend, and my greatest comfort. She is my baby and I don't want her to feel invisible anymore.
Kate's autism is not the first thing you'll notice about her. You'll notice her striking blue eyes, her penchant for superheroes and her love of being with people. Kate is busy with very little down time so when she decided recently that she wanted to make videos to teach people about important topics, I was quick to help her out. (After all, it beats wrestling with her. She is surprisingly strong for a forty pound five year old.) She made a video about sharing, not hitting and unfortunately a short video of what she remembers of her birth. You can find this video on our Facebook page if you need a laugh.
Most recently Kate decided to make a video about Fire Fighters (I told you she was into super heroes). This video made its rounds on social media and came to the attention of Michael Boyle, Platoon Chief at the Kennebecasis Valley Fire Department. He quickly reached out and ask if Kate would like to come for a Fire Station visit! Does Spiderman spins webs? Do the Ninja Turtles love pizza? YES, of course we would love to come visit the station.
You see, Kate was a firefighter for Halloween and her autism service dog, Oakley, was her "Fire Chief". Her sister was an "evil twin' with her bestie but prefers to stay off camera for the most part. (Trust me, she was equally adorable). As we set out to make our rounds we were lucky enough to see a KV Fire Department truck drive by, and guess what? They spotted Miss Kate and pulled over so she could jump in for a quick visit. She then talked about that visit the whole way around the neighbourhood. Her Sunday visit to the station couldn't come soon enough. Check out these photos of Halloween night before we get to the good stuff below.
After the excitement of Halloween we were hopeful that Kate might sleep in a little later than her usually 6:00am. We were in luck, she slept in until 6:08am. Anyway, she was too excited to sleep because today was the day she was going to the Fire Station. Off we went for a private tour. The firefighters all came out to greet us and show us around the station. Kate and Grace were V.I.P's (even if Grace was too shy to leave my side).
It was especially fitting that Firefighter Karen was there to take the lead on our tour to further encourage Kate that girls could be firefighters. Firefighter Karen and her colleagues took Kate in and out of every truck and every other piece of equipment at the station. Kate then asked her father and I to stay put while she and Karen did some further exploration. We stayed far enough back that she felt pretty independent. Oakley even kept at a short distance for this one.. Kate had five firefighters at her and beck and call and I am pretty sure they loved every minute of it.
This visit has done more for us than just allow a little girl the thrill of sitting in a fire truck. It has reminded us that our firefighters are community helpers in more ways than one and it has reminded us that girls rule! (Thanks Firefighter Karen).
So, thank you KV Fire Department. From all of us, Thank You!
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)