I sometimes wonder if you know about Kate’s autism. You are so friendly and kind and we know based on our proximity that you have been privy to many a meltdown. Your children are grown or never existed. Your house is quiet and your garden precisely groomed. I haven’t taken the time to get to know you because I am afraid that you might reject the idea of a friendship with a mom who walks down the street in her pyjamas with a bottle of wine hidden poorly in the sleeve of her coat, to her childhood friend who lives not two minutes away. I am afraid you will reject a friendship with a mom whose puffy eyes are a combination of sleep deprivation and cheap wine on a Tuesday night because Tuesday was so damn hard. You’ve already patiently put up with so much from us.
There are the morning meltdowns that explode when we try and change Kate’s clothes to get her ready for daycare. You’ve likely not even rolled out of bed when you hear Kate loudly protesting the idea of pants. Your perfectly manicured house sits tens steps across the quiet street and you are most certainly privy to the fact that Kate prefers to keep the same thing on, no matter what it is. She does not like change and she lets us know with vigour. We have recently become pretty adept at redirection and can get out of the house in the morning without too many issues about half of the time. The other half leaves us weak and defeated. What you must think?
I imagine your conversations with your husband, you know:
You: What is wrong with that family? Why can they not control that little girl?
Him: I’m going over there this time. We have been listening to this madness for too long!
You: No, honey, I feel bad for her. Did you see her leave for work in her slippers today?
Him: I’m running out of patience for this.
You: Surely, it will get better.
The screaming and crying. The chaos. Do you peek out your window and watch us force Kate into her carseat so we can get her to daycare? Do you cringe when we shut the door car door in the middle of her hysterics? Does your heart break for Grace, who stands quietly by, sometimes in tears, sometimes in solidarity with her sister? Do you pity her? Do you pity us? Do you understand?
I know you know that bedtime can be the same. We have improved and I’m sure you’ll agree. You likely had to shut your windows each evening in the hot summer last year. This year, maybe only half the time. Bedtime is hard. You’re probably settling down with a cup of tea ready to watch your news program when you hear the first screams. You likely frown and set your cup down. You sigh and turn your television up.
The you I imagine in that house is not the you I encounter outside. When we venture out to play Kate is happiest. You never shy away. You always come over and chat. You smile genuinely at Grace and Kate and you casually chat to me as if we haven’t disrupted so many of your early mornings and evenings. You ask questions to our girls about school and friends. Kate rubs your leg. You reach for her hand. You like her. She likes you.
I watch you for signs of anger or frustration. I see none. I never really commit to any conversation because I am always anxiously waiting for you to smile and say:
“It’s not that I mind, but my husband works nights, and the noise…well….”
You never say those words.
Did we hit the neighbour jackpot? I’ve seen neighbours lose it over grass grown a centimetre too long. I’ve seen neighbourhood feuds erupt over a poorly placed fence or an overgrown tree.
For whatever reason you have chosen to give us a pass, and for that we thank you. You deserve a quiet morning and a peaceful evening and we are working hard to make that happen; for both us.
A wise man once said: "Don't read the comments", and up until that point I really hadn't because I am a tad lazy and quick to move on after I spit out a piece of writing, but that warning drew me to the comments section like it was cake and I spent hours reading thoughts on my parenting skills, lifestyle, education, physical appearance, morals etc. by perfect strangers.
Don't get me wrong; most of these comments were kind, heartwarming and generated by people who stand with us as we share our story but some, well some were downright nasty, threatening and worst of all, grammar-defying. Now, I can get behind the fact that I might have a foul fucking mouth, and strong opinions about autism but if you're going to tell me off, can you at least use your computer's spell check? More importantly, could you read a little more of my message before you decide I am worth harassing to the point of stalking. I am not always patient, but I am working on it, and I'm pretty sure I have never called someone an "unholy C. U. Next Tuesday", but I probably will now.
Seriously, though, it kinda hurts. Here is what I need you to know:
1. I share our life, not because I want people to know that it's hard, but because I want people to be prepared for Kate and kids like her. 1% of the world's population is on the autism spectrum. Families across the world are doing the best they can with what little they have in terms of support. We won't be ignored.
2. I write as a form of therapy. I don't edit my feelings. I strongly feel that if I am honest about my thoughts at every stage of this trek it could help someone, somewhere down the line. At the very least, it helps me.
3. If you shared your thoughts and feelings in a public forum as I do; the good, the bad, and the embarrassing, would you expect/appreciate a fury of anger directed at you and your family?
If we have a difference of opinion, then please, feel free to share it because this conversation is an important one, but please, for the love of wine, take the hate down a notch. I'm a real person and I read the comments.
The following are real comments taken from the comments section of articles I have written (I'll spare you the vulgar ones):
Your kid sure doesn't autistic. I read your "diagnosis" post. As an outsider, it sounds more like you're a neurotic parent projecting your own issues--like not being able to bond with her child--onto her.
Autism is the diagnosis du jour, isn't it?
Oh dear. What a big fuss over such a non- event. Poser. Do you spend more time writing about life than living it?
That was extremely nice of him because I'm sure Kate is super F*&#@ng annoying!
"Thank you for not making me repeat those awful apologetic sentences that I so often say in public." Seriously? Way to go on your poor parenting skills. Lord knows we would not want someone to control their screaming kid.
Wow... This "article" makes me want to pick on an autistic kid. I mean, he'll still play with me, so why not?
Judging by the picture, your daughter looks extremely young for an 'autism' diagnosis and I'm sure she's just been mis-diagnosed. Her behavior doesn't sound like 'autistic' behavior, but rather, just acting out that hasn't been disciplined. I really dislike parents who feel like they deserve special treatment for having 'special' children who they simply just don't discipline and post stories like this for fame.
This person is so angry. It's anger brought on by guilt. The guilt that is associated with knowing that they failed to research the causes of autism prior to having a child. I've seen it time and time again.
but it is a ficticious disease.......just like alcoholism .....come on , are you seriously going to tell me that bc a child is loud, doesn't want to pay attention, acting up , is not JUST A BAD CHILD WHO WONT LISTEN , .....no, you go give it a name to help people feel better about themselves.....what makes it a disease?? b/c someone said so , came up with a name , and wrote about it ??? how do u prove its a disease
This woman is a bitter bitch who resents that other people are saying exactly what she feels. She is just mirroring her own embarrassment at her child. This says more about her than anyone else. I have never heard someone talking shit about kids with autism. I hear a lot of mothers in fear of it, with a lot of empathy for mothers who ARE dealing with it. She is just defensive about it in a sad way. She needs to shut her cake hole and just help her children learn to live in a world that is difficult to navigate. You know, BE A FUCKING PARENT!
This article writer really needs to go to anger management classes...
I'm the other parent in the waiting room. The one with the polite, nonviolent child in need of PT, OT and Speech. I need YOU to control your child and to set the bar higher.
My son's diagnosis may not have t-shirts, commercials and fun runs but since in society many resources are shared in education and medicine you need to play by the rules of society.
Often times I feel bad for the "children with autism" cause they got cruddy parents not in touch with reality once that damn spectrum becomes the center of their lives. My son is silent, so I understand that it's easy to go down the rabbit hole of being the voice/advocate for your child and the emotions that come from having a child that is not typical. But that does not give you as a parent to project an identity of diagnosis onto a child. Creating this culture where it's fine to wear elastic pants as a 13 year old, annoy people with talk of minecraft, or throw a temper tantrum as a normal response.
In my opinion projecting a diagnosis onto a child is one of if not the most immoral things you can do. Rather than working and fighting through interventions and standards in behavior that this noisy population would rather have civil society lower it's standards even more makes me sick.
However the internet eats it up with it's clickbait industry.
Eitherway, I suspect IF your child is acting like a brat in public it's got less to do with what you excuse away as autism, and MORE to do with the behaviors the child see's in you as a parent.
Maybe I've spent too much time in the waiting rooms of medical centers, but after being aggressively farted on by an obnoxious brat who knew what he was doing and witnessing his mom knowingly not discipline him I say NO.
This is a temper tantrum article. EVERYONE in the world has problems. No one should need to live autism or any other issue you have in order for there to be tolerance. Did you ever once stop to consider that you are NOT the center of the universe and other people may have problems that are more emergent than yours? Do you expect the person suffering from a migraine to sit and smile at you if your child is having a screaming tantrum for 5 minutes+???
Listen asshole, I've had it up to my messy bun with you and your dangerously ignorant comments about children with autism and their parents. You know who you are. If you're reading this because someone shared it on social media, maybe that's because they wanted YOU to read it. Here's what you need to know:
1. You are a righteous son of a prick. You think because you raised a typical child you have the right to make offensive suggestions to a parent who is barely hanging on in a world that can be aggressively offensive to their child? This makes you a bully but my child would still play with you.
2. You lack a true education in autism and until the day when your beloved grandchild receives his diagnosis, shut your cake hole. This makes you a loud mouth but my child would still play with you.
3. Autism does, at times, make a child look like a brat and a parent look permissive. We have told you that, over and over. This is one of the most painful parts of this disorder. Our children cannot fall in line. The line rejects them. YOU created the line but my child would still play with you.
4. No matter what the internet says (even here), you can ONLY get legitimate information about autism from those who live it or those who spend their lives studying it. This makes you an idiot but my child would still play with you.
5. You are coming across as a pompous, uneducated, know-it-all stupid head but my child would still play with you.
6. Your friends look at each behind your back when you say offensive things about other people's parenting. They are embarrassed for you but my child would still play with you.
7. I would sooner brunch with Kim and Kanye but my child would still play with you.
Do you get my meaning? Do you understand that these children are good and innocent and exhibit herculean effort to exist in a world where people like you make the rules? Do you understand that no matter what you say or believe, our children would still see you as a person who is safe, kind, fun and worthy of their love? They have a lot of love to give, you know. I can't say the same for myself, but then you already knew that.
So, kick in. Wouldn't you rather be their friend than their oppressor; their hero rather than their condemner? Imagine the good you could do with that attitude of yours.
Oh, and sorry about the stupid head comment, kinda.
Do you imagine what it's like for us? Do you imagine one dark-haired doll clinging to my leg, in anxious fear to leave me, while I chase the other down the hall before she uses the scissors she has liberated from the drawer on her dog, or worse, herself? Do you imagine her, forcefully and defiantly, throwing those scissor across the room, like a ninja star at a great enemy, making another dent in walls desperately in need of paint? Do you image me, exasperated, too tired to be frantic, swearing under my breath? Do you imagine that little ninja, in perfect echolalia, uttering that word right back at me? Do you imagine the doll and I collapsing in laughter on the floor beside the ninja? If you do, then yes, that's us, and it must be Tuesday.
I wonder if you know how special you are to Grace? You are the very first person in her life that is completely focused on her and her alone. She adores you.
Do you know how many doctors appointments and therapy sessions she has sat through watching everyone in the room fawn and flitter around Kate? Do you know how many conversations she has overhead that surrounded Kate’s progress or setbacks? Do you know how many times we have left early, from an event that Grace was relishing in?
Please don’t misunderstand. Grace has never come second to us. However, she is caught up in the chaos that can be an autism household, at times, and she deserves better. She deserves someone like you.
You have offered her refuge from this. When you look at her, you don’t have to consider her sister. Can you imagine how that must feel to her? You see her, alone. You simply see, Grace.
Grace loves her baby sister. You might have noticed this as she tends to include Kate in her writing and art projects at school. She feels responsible for Kate, in a way that is both heart-breaking and beautiful. While we are immensely proud of her, we wish she did not shoulder such responsibility, so young.
When Grace entered school this year she was given a taste of independence and personal attention. She has flourished and for that I want to thank you. No doubt, you offer this kind of personal attention to each child in your class but I would just like you to know what it means to our Grace.
Sure, she can talk. I relish every word, too. I remember the days when she couldn't. I remember wondering if she ever would. Now she talks. She talks pretty much non-stop. Sometimes, it drives me crazy and I feel immediately guilty for thinking that because some of you have yet to hear the sound of your child's voice--some of you might never hear that sound.
I do, however, need you to understand that although Kate can talk her communication is mostly unreliable. If the interaction is one that we have practiced time and again, the she might get it right with just a few errors. But, if the conversation is new to her she will unlikely be able to process it correctly and her response, if any at all, will be unreliable and make little sense.
Can Kate tell you about the Teenage Mutant Ninja Turtles? Sure. In a heartbeat.
Could she tell you what she wants for her birthday? Sure thing.
Can she tell you what she did today at school? Nope.
Could she tell you who she was or where she lived if lost? Not a chance.
Kate also struggles to recognize people. She still mixes up the identities of people she sees day in and day out. Much like her nickname for her pal on the plane she will choose a name for you that is familiar to her. If you fit the bill, you may get the handle she sees fit. For example, many of the ladies in the line behind us at the grocery store are called Grandma. She knows they are not her Grandma, but that's where her brain goes when she wishes to address them. (Yes, in completely related news, she addresses strangers daily--this speaks to her dangerous and pathological trust of the world around her as stated in previous posts).
Why am I telling you all this? Not because I want you to know that verbal does't mean what you think it means, although that may be the case, but because autism is a social communicative disorder and no matter where your child sits on the vast spectrum we must be cautious of unreliable communication.
Happy Mail to:
27 Wellington Row
Saint John, NB
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Grace and Kate's mom. (Shanell)