I'll be honest. I do massive amounts of reading about autism spectrum disorders and when it comes time to read for pleasure I would rather avoid, Lisa Genova's "Love Anthony" or Jodi Picoult's "House Rules" (I generally avoid Jodi Picoult anyway. (Is it just me? Sometimes, I think she writes specifically to offend me.) I tend to gravitate towards authors like Chuck Palahniuk and Douglas Coupland. I won't lie, I also have a stack of Sookie Stackhouse books in my closet. Anyway, you can see my taste runs a little differently than some moms in my demographic. So, with SO MANY well meaning people asking me to read Kristine Barnett's, "The Spark" and "Chicken Soup for Raising Kids on the Spectrum", I figured I had better give them a go.
I started with "Chicken Soup" because it seemed less daunting than reading about one more autistic savant. I am very wary of popular culture and the media falsely portraying autism as feel good stories about high functioning kids with talents abound and I know "The Spark" is about nurturing genius so I thought I had better hold off for now. I figured it might piss me off. However, I won't comment anymore on the book because I have yet to read a word of it.
I am frustrated that our culture depicts children with autism as little professors or savants. If I had a child on the severe end of the spectrum I would be incensed at this irresponsible message. Hell, I work with children on the severe end of the spectrum and I am incensed. Every time I turn on the television there is some feel good story about overcoming the symptoms of autism or an inspirational story about some child prodigy on the spectrum. Some of them bring me to tears because like you, my heart swells with hope. I am no stranger to 'inspiration porn' and enjoy many of these stories for the what they are: 'one family's experience'. The danger comes when you hear your friends and neighbors say, "I saw this video about an autistic child that couldn't talk and then his parents stopped feeding him milk/soy/wheat/sugar/dyes etc and he became a math genius. (I feel I can make that snarky reference because I have Kate on a GF/CF diet, but I do not expect it to cure her, only provide her with more comfort in her belly etc.)
The internet is flooded with blogs like mine that use 'feel good' moments, and 'glimpses of normal' from our children to draw readers in and spread awareness. I am guilty of this too. We spread awareness all right, but at what price? Please feel free to snap me back to reality when I get caught up in the 'inspiration' of it all. The more I think about this, the more I realize that we are painting a false picture of the realities some parents are facing and this is not only irresponsible but dangerous. I have written about this in the past here. The politicians will stop paying attention to us. The policy makers will believe we are OK and forget about us believing we are busy learning to connect with the little intellectuals we are raising.
I won't spend much time talking about the book. I will say I was pleasantly surprised that a fair chunk of the book was dedicated to kiddos with severe or classic autism. After reading the first third of the book I thought, Oh no, this is going to paint autism as this pretty picture of quirky aspie kids. I am NOT saying that being on the high-functioning side of the spectrum is easy. In fact, these are the kids that are mercilessly bullied because their disability is mostly invisible. I have written a post about this that sits in the archives of this blog and I hesitate to hit publish for many reasons. One of which is, I do not wish to further divide people within the community but I do wish people to know that children who are so-called high-functioning are in trouble. Big trouble; unless we stop pretending they are all geniuses in wait. So, you see, this message of 'greatness' and 'hidden talents' is damaging for all our kiddos. Let's try and get this right.
I don't know if Kate will someday blend in with her peers and "pass" as they say, but I know I sure as hell won't write a feel good story about it. You might as well take some of the parents in our community and say, "see, my child was all wrong but then with therapy and love and God or (some such shit) we had a miracle and she became 'normal' or we 'tapped into' her genus; it was there all along. This can happen for you too!" The reality is, this can't happen for every child on the spectrum. It is cruel and thoughtless to behave as if it will. The expectations are too much. Many of our kids have severe cognitive and physical impairments. They won't go to college at 14, or at all. They won't get married and have children of their own. They hit themselves. They wear diapers once grown. I guess that doesn't make for good reading or good television.
I can fully admit before Kate was born I knew little about autism. I was a teacher so I knew the basics.
Autism is a neurodevelopmental disorder that is characterized by impaired social interaction and communication, and restricted and repetitive behaviour.
I just googled it to see what I would have found if I knew nothing at all and found this to be the first hit: (You can read while I seethe)
What the hell internet? I am busting my ass to get the word out about the realities of autism and this is what you are offering people? You can reach so many more people than me and it kills me that this garbage might be considered a valid definition. Here is a definition that I approve of. You may have your own:
Autism: Read this, this, this, this, this, this, this, this, this, this, this, this, this, this, this and this and you might have some idea of what autism is:
Would I have read the googled definition a few years ago and taken it for truth? No. I know better. Right? Hard to say, really, since I just googled "remedies for a week long headache" and found these and I am actually considering trying the second one:
All you need to do is take a nice warm shower and listen to your favorite music. Your headache will slowly fade away.
Take a tablespoon of vinegar, or get a sour pickle and eat it. Never fails.
It scares me now to think about how little people know about our kids and how little I knew before it became my reality.
I received absolutely zero training regarding autism in my education degree or my Masters degree. (Although the Province of NB is going to change that I am sure). I became a teacher and relied on the internet to teach me about the terms that would appear in the files of my students: ADHD, Autism, Asperger's, Tourette's, Down Syndrome etc. I had textbooks and files galore but they were painfully outdated when I used them so where would I find current information? I chose the internet and looked for definitions and articles. I wish I had found the amazing blogs like Mostly True Stuff and Homestyle Mama with a Side of Autism before I walked into my classroom. For the first few years of my teaching career I feel I was extremely superficial with my knowledge and treatment of these kids. I wish I could go back.
Believe me, I am not saying that you have to experience autism first hand to be a good teacher to these kids, I am just saying that is what it took for me. I will forever try and help people understand our children.
Alex always says: "This is the hill I will die on." He means he will never stop advocating for Kate and kids like her and neither will I.
Can you come spend an afternoon on the Commons with us? We have raised more than we need for the screening of Monsters University and we'd like to put the extra funds to good use. Can you come spend an afternoon at the commons with us. Bring a picnic lunch and we'll provide the bubbles and have a bubble bash. This will be a great opportunity for children with autism and their friends and siblings to get together for a fun afternoon and if we can get some media attention we will be spreading autism awareness while we are at it! Any speech pathologist will tell you, bubbles are pretty crucial to their programs and kids adore them. Maybe we could get a huge crowd and really fill the sky with bubbles. As a wannabe photographer I am already imagining the photo possibilities. Can you make it? Any ideas or suggestions to make it great? What other kind of entertainment can we add? Are we allowed to just use the commons for this event? Advice Please comment below.
Sometimes, I might act like I know the ins and outs of all things autism. Sometimes I might seem like I am completely lost. This is the nature of raising a child with special needs. It is like a cocktail of fear, anger, confusion, strength and love. Somedays, some ingredients are stronger than others. I write this blog while I balance precariously on that line between total insecurity and steady confidence. I might appear to have a handle on which therapies are legitimate and which are not; which are progressive and worthy of our children and which are archaic and harmful I might even seem like I have it handled pretty well. You might think I know what I want. This is not the case. I have written before about feeling like a fraud. We make choices and decision using the best information we have at the time. I am quick to make choices about treatment but that doesn't mean I don't experience anxiety about my choices. We have agonized over the choices or lack thereof. I have stayed up nights and played out different scenarios in my head. I dread the thought of regretting one of these big decisions. However, these decisions still must be made. We cannot go back and forth on what might be best for Kate because the clock is ticking. So, we make our choices and we hope they are the right ones. Don't all parents feel this way to some extent?
I have lucid moments where things seem clear. During these times I know what I want and I want it delivered. These moments are rare. Mostly, the complexities of this diagnosis are overwhelming. The massive amount of information surrounding autism, treatments, attitudes and philosophies is too much to sort and classify. The misinformation alone keeps me up at night. The readers are so full of compliments for me and I love it but I want you to know I don't have this figured out. I flounder around reading like a maniac. I read medical journals and books and blogs. I read peer-reviewed studies and the heartfelt words of mom's and dad's who 'know.' I ask people questions about their experiences. Sometimes after the kids are in bed I set out to read the entire internet. The bottom line is there is so much I don't know. There is so much I still have to figure out. The experts don't 'know' either, you know. They pretend to know. They answer with confidence but they don't really 'know.' There are more contradictions in the literature than there are agreements and this leaves us further confused. Don't even get me started on the divides within the community. They are most the heartbreaking and confusing of all.
I am writing this because I get many emails from mom's and dad's who are afraid. Parent's who ask me questions I have no right to answer. I want to answer. I want to help but I am unqualified to answer. I can tell you my story and my experience but that is all I have for you. My heart aches for these parents who are beginning their journeys. My heart aches for the parents who have been trying to figure this out for years. I feel gutted that I can't take away your worries. There is too much I don't know.
There are a few things I do know, however. These are the things I know for sure:
I know you cry in your car because it is the only time you are alone.
I know you feel guilty for fantasizing about how life might have been different.
I know you worry about neglecting your other children.
I know you cringe when you hear the "r" word.
I know you worry about choosing the wrong therapy/intervention/treatment.
I know you feel guilty because you cannot afford treatment.
I know you feel angry that treatment is not available.
I know you sometimes resent people who don't 'know.'
I know you feel awful when you compare your child(ren) to others or to each other.
I know you have a hard time thinking about the future.
I know you worry all the time.
I know you feel guilty all the time.
I know you are so proud of your child(ren)
I know you celebrate milestones that others could never understand.
I know you know your children are perfect.
I know you adore your child(ren).
I know you would still choose them.
I know they would always choose you.
No one knows better how to defend against meltdown rage than a parent. All parents have at one time been holding a child when said child decides to lose it/meltdown/spiral and attack. Your choices become either take the hair- pulling/scratching/biting/punching or, drop the baby/child on its ass. As a public service announcement, I have developed a list of self-defence moves that may help in these situations.
You are holding your little one (Child A) in line at the grocery store. You may or may not have another child(ren) sitting in the cart. Child A wants to get down and run into the parking lot. You hold tightly to your child to protect said child from running into the parking lot. For those who have yet to be in this situation; you cannot hold your child and protect your face/head/eyes from an attack of hitting/scratching/pinching/biting/poking at the same time. Child A proceeds to pull your hair by fistfuls and scream bloody murder. Child(ren) B and C announce that they have to go to the bathroom.
1. Drop Child A on his/her ass and protect yourself from the massive headache that will set in from the hair pulling. This headache will make it impossible to cook dinner and/or enjoy Homeland/Walking Dead/True Blood/SOA (whatever you're into, because you know you've been looking forward to it all day.) If possible drop child on top of other children to both soften his/her fall and quiet the other ones from demanding the bathroom at the most inconvenient of times. Some will stare in disapproval but if you listen hard enough you'll hear a solitary clap coming from the diaper aisle and that yoga-pant wearing, pony-tailed mom will nod in solidarity.
2. Growl at Child A like a wild animal. Really commit too, because you need to really freak them out. This may shock your child into stopping the attack long enough for you to place them in the cart under something heavy enough to hold them down (a watermelon, a big bag of potatoes, a box of wine etc). Keep in mind that this strategy only works once so save it for a big one. (Airport security line, wedding, church etc).
You are holding Child A in your arms and holding Child B by the hand while shopping for size 4 splash pants which you cannot find anywhere and you have to pee so bad you're nauseated, when Child A decides to bite you.
1. Drop Child A. Not your best bet since the floor is hard and there are likely many witnesses who are already looking at you because Child A has already been making it very obvious he/she wants to go home by screaming "You're Not My Mama," or some version of this.
2. Head butt Child A gently as a reminder not to bite. Relax, I said gently.
3. Cry out loudly and try and produce real tears as Child A breaks through the skin on your shoulder (through your winter coat). Hopefully, Child A will release at this point. If not, see choice one.
The hands-free bite/hit/scratch attack. If you find yourself in the rare situation of having access to your hands during an attack you can try one of these three easy to remember manuevers.
1. Poke Child A in the forehead. This can be tricky as it is hard to see with tears in your eyes so be very careful to avoid Child A's eyes. This usually stuns the child long enough for you to remove your arm/hand/cheek from their bite. If child lunges again throw a couch pillow at them and pretend to cry.
2. Plug Child A's nose. They will have to open their mouth to breathe and release their bite. The problem with this one is that they can usually hold out for long enough to really do some damage. If you are feeling confident you can combine strategies one and two.
3. Run. If their jaws are strong enough they may hold on for a metre or two but if you strategically run by a large piece of furniture you can usually lose them pretty quickly.
I know there may come a time when our girls fight like cats and dogs. For now though, they are very close. There have been some minor "sharing" issues but otherwise they prefer to be with each other over anyone else. Grace will often verbalize guilt over going places without Kate as I have spoken about before. Kate, however, does not have the words so she reacts like in the video below. Please don't think I am mean for posting this video of Kate crying because if you really listen you can tell she is 'turning it on' a little. Kate is frustrated because she doesn't know where Grace is going (a visit to her grandparents for some Gracie time) and we can't yet explain it to her. I feel terrible for her but rest assured she quickly settled when her dad came home until bedtime when she repeatedly asked for Grace again. Eventually she fell asleep with Grace's pony and she was happy.
I sometimes wonder if Grace has more patience for her sister because she knows Kate has difficulty navigating her day. I wonder if maybe there is no room for rivalry in a relationship like this? Grace has been fiercly protective of her sister at times but that is not what I am talking about as I have seen this in neurotypical siblings too. I guess I am just wondering if others have found little rivalry between their NT child and their child with ASD. You've seen how Grace treats her sister in videos I have posted here and here. I would love to hear from other parents in the same situation.
It has been awhile since I have updated you on our therapy room. I originally wrote about designing the room here. We have added some pretty cool things and the girls are loving it. Kate has therapy in this room as often as we can make it work and we even let them have free play in here (which is against the advice of some of the experts.) I guess I am getting pretty good at going against the advice of the 'experts' lately. I hope Kate will thank me for that one day.
The first new addition to the room is the mural painted by local artist Gerry Collins. Thanks Grama. He is a family friend and he painted this mural using a vintage 1920's colouring book for inspiration. We wanted it to look like a child's room but we didn't want a typical cartoon mural. We also knew better than to tell an artist what to do. We left Gerry upstairs for a few days and we were left with an absolutley priceless piece of art. Monty even appears in the painting!
Next, we added the seahorse mirror that Kate's aunt and uncle bought her. Thanks guys! The girls adore it. They love to stand in front of it and make funny faces. Kate and I can practice facial expressions and she loves to talk to herself in the mirror.
Finally, we added the pink gym mat. Thanks Grampy. One of Kate's favourite ways to stim is jumping. She could jump up and down over and over all day. (I know, I need to add one of those mini trampolines with a safety handle, right?) This mat allows her to relieve some of that sensory-seeking behavior. She can crash and roll and fall as much as she likes and she loves it. Grace, although less rough and tumble than her sister, also enjoys playing on the mat. It is great for the practical uses of physio and occupational therapy exercises but it also good for just plain old play.
If you are thinking of putting a room like this together for your child please keep in mind that Kate is primarily a sensory-seeker. She likes pressure and rough play. The room has been designed to help Kate meet sensory-seeking needs like spinning or jumping. She can, at times, be a sensory-defender. When she is feeling this way (usually a holiday or a birthday party can bring this on) I would not bring her to this room. At those times she is better served to go to her bedroom with one of us which is very calming and simply decorated with little distraction and soft lighting.
Alex and I do not claim to be experts in sensory room design but we are here if you have any questions about designing one of your own.
Conversations with Grace and Kate can make my day. I love the complexities of their relationship. I love how hard Grace tries to figure her sister out. I love how unconditionally they love each other. I love the funny things they say. I have been jotting down a few of their most recent interactions so I could share them here:
Grace (while twirling her hair as she does when anxious and looking at Kate who is playing with a My Little Pony): Mom, is Kate a half-baby or a baby or a kid? I think she is a half-baby? What is she? Maybe a half-kid-baby?
Kate (Without missing a beat): I do wuv ew Gace (I do love you Grace). Kate says this a lot to each of us. It was not in response to what Grace said as she doesn't have enough receptive language skills to understand Grace's comment but it did come at a nice time.
Me: Kate is a big girl Grace. A kid like you.
Grace: Ok, I'll tell her.
Me: Thanks Babe.
On another day, this is what I heard while folding clothes in the next room while the girls played in Grace's room:
Kate (to Monty the cat): You poopin' cat?
Grace: Ugh….he isn't poopin' Kate.
Kate: You poopin' Gace?
Grace: No, Katie. (annoyed)
Kate (to Monty the cat): You poopin' cat?
Me: Yes Grace?
Kate: You poopin' mama?
and scene ;)
Happy Mail to:
27 Wellington Row
Saint John, NB
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Grace and Kate's mom. (Shanell)