I’ve been journaling with my kids for a couple of years now. Every night they write out their answers to the same 4 questions (as do I) and I finally took the plunge and created a journal with those specific questions in it for others to use. It’s now available on Amazon! I’m ridiculously excited as each question was designed after years of research in both psychology (for the study of the individual) and anthropology (for the study of group dynamics).
Research Proposal
I applied for multiple different Masters programs for this fall. I have one left to hear from, but the rest have said no so far. For one of the courses I have in my last term for my B.Sc.(Hons) I had to write a short synopsis of a research proposal. It was really hard to write because I was truthful and simply wrote what I’d hoped to study for my Masters in Psychology. I’m pasting the brief synopsis below, because after 4 years chasing a dream only to be rejected now, I don’t want to feel like my idea will never be seen or considered by anyone other than myself.
Research Synopsis:
With the rate of diagnosis on the rise for Autism, there are many who look for ways to help Autistic children diminish what are seen as non-normative behaviours and one of the most prevalent methods utilized in North America is applied behaviour analysis (Keenan et al., 2015).
One of the key purposes of applied behaviour analysis (ABA) therapy is to help Autistic children regulate their emotions (Frolli et al., 2021). ABA is believed to help by looking at external factors and using positive reinforcements to obtain desired behaviours and negative punishment to extinguish undesired behaviours (Sandoval-Norton & Shkedy, 2019). While on the outset the data from ABA often shows marked increases in various skills or abilities, it shows those behaviours or skills as prompt dependant (Sandoval-Norton & Shkedy, 2019). Prompt dependency would limit the development of intrinsic motivation which would limit their ability to meet the core psychological need of autonomy (Reeve, 2017). Additionally, according to Sandoval-Norton & Shkedy’s (2019) study, ABA is often very psychologically damaging. If something is producing harm as a by-product of producing the results that are desired, another method needs to be investigated to produce those same results without harm. However, in order to create a new method of therapy that is both effective and non-harming, one has to understand the true root of an issue. This is where this study comes in.
Neurotypical people undergo significant neural pruning that is not seen in Autistic brains (Frith 2003; de Silva 2018). Neural pruning assists with the removal of synaptic pathways not used frequently or those not needed for optimum efficiency (Frith 2003). Those additional neural pathways may be providing additional information that is creating a greater threat response than is actually needed in the situation.
Studies such as Avino et al., (2018), have shown that there is an increase in the degeneration of the amygdala in Autistic brains at higher levels than those who are not Autistic. This quantifiable component suggests to us that it is not an overall emotional regulation issue, but instead is specifically a continually heightened state of threat perception at work.
I theorize that the lack of neural pruning seen in Autistic brains increases the amount of response generated in the amygdala which creates the emotional dysregulation seen. Therefore it is not in fact a dysregulation issue, it is actually an inaccurate threat response. By honing in on the specific methodology of the brain in producing the emotional dysregulation seen, harmful therapies such as ABA can be discontinued and a new therapy that focuses on teaching more accurate threat perception can begin.
Corona’s Effect on Mental Health
It’s been months since Covid-19 became a worldwide epidemic, and while I am truly, deeply thankful that my family has not experienced this virus directly, sadly it still has had an impact on my children through their mental health.
He used to be gregarious, he used to be fearless, he used to be happy and confident…Used to be…
It makes my heart ache to see the changes in him, to see how scared he is to even leave the house because as he puts it “It’s invisible, I can’t see it, I can’t fight it” He used to be thrilled to pop over to the store for me, and he’d always ask if he could pick up something for dessert for everyone in addition to the bread or milk I was usually asking for. Now, his first response is “Or I could not go” with a pleading face as he says it. He used to love going for runs, now he says “there’s too many people”. He would rather forgo takeout or new toys if he has to go outside for them.
So instead I don’t ask him to go for me, but I do ask him to go with me. I’m willing to walk with him, because I’m determined to make him go out (while of course allowing precautions such as a mask and hand sanitizer) because he can’t stay locked inside for the next however long. It’s not healthy for him.
I know this might be a long road for him, but I remember when he was 2 and would have uncontrollable meltdowns when we’d walk different routes home from Airzone, he’d cry that it “wasn’t the right way home”. Back then I knew he had to learn there were many ways to get to somewhere, physically and metaphorically. I would hold him and tell him over and over he was loved and safe and I understood and he was my wonderful brave boy as he cried for hours even after we got home.
This is no different, I’ll be there each step of the way offering him love and support as I help him walk this hard path. I love him enough to do the hard things because he always has been and always will be worth the effort to help him thrive.
Why I don’t often write about my sons anymore…
When I first started this blog, I would write quite frequently about my children. I thought that by giving others a glimpse into the world of Autistic children, and the parenting of, that it would help. That it could show the world what our lives were like; both the positive as well as the struggles.
There is a difference though between when a parent of a neurotypical child writes about parenting, and a parent of a special needs child writes about parenting. I didn’t realize that when I first started writing. I didn’t realize that far too often the media utilizes those same struggles to suggest that a parent of an Autistic child should be pitied. Mostly I didn’t realize it, because I don’t pity myself.
I see myself as having been gifted 3 beautiful souls to guide towards their fullest potential. I see myself as a kind of tour guide. I’m only here to help till they themselves feel less like tourists and more like locals. The thing is, I thought that was what all parents have to do.
I have never been a mother to a neurotypical child, so maybe it’s totally different? But from what I have heard, it’s still hard as hell to be a mom; regardless of a child’s neurobiology.
So why is it that having a rough moment or day or even a totally rotten week is viewed so differently when the child is classified as special needs? It’s different because we view having a child with a different neurobiology as something bad, as something to grieve and be depressed about. Only I’ve never felt that way about my kids.
So when I write, I have to consider what kind of impression am I adding to society of the reality of having an Autistic child. I don’t want to add to the gross misconception that they are less for having a different neurology; because, they aren’t. The society that equates how much money a person can contribute to corporations (through working at, or purchasing from) as a human being’s only worth is what should be pitied, and seen as less than; not my beautiful children.
Dear Mental Health Professionals:
I am aware that the DSVM (all editions since the 3rd) include Autism as a mental illness/disorder. However, just because they are included does not make the mental health field correct in their assessment of Autism as a disorder. It is included because Western society has a serious lack of acceptance of anything different. All things different should be treated and minimized to the greatest degree possible, is often the misguided thinking with Autism and many other neurodiversities.
The Ontario government has released a statement that they are pledging $333 million dollars towards treatment, but that the maximum age for treatments of IBI will decrease to 5 years old. This is said to be because the greatest chance for changing these children is until they are 5 years old. After that, it becomes harder to help change their behaviors to mirror neurotypical behaviors.
Autism is looked upon as something to correct, or at least to help intervene as much as possible and push towards encouraging the person to act as neurotypical as possible. I’d like to ask you why this is? I’d like to ask you why someone has to behave the way you do for you to see value within them? I’d like to ask you why biodiversity in the world is a plus, but neurodiveristy within humankind is not? I’d like to ask you why someone has to live in a predetermined manner for it to be the right way to live? I’d like to ask you what is so bad about allowing someone else to live their version of a happy life, even, especially if it’s not the same definition of happy as yours? I’d like to ask you what will it take for you to see that my sons do not have a disorder, they have a different neurological structure. What are the words you need to hear to understand that their value is not to be based upon how well they can become chameleons in society, but that their value is based upon the person they truly are when they stop trying to fit into your rigid, substandard predetermined cookie cutter shape of humanity…The Autistic Person they always have been and always will be does not need to be fixed, they just need to be loved, respected and appreciated for who they are, just like every other living creature on this biologically diverse planet.
We’re not in Kansas anymore…
“Of all the things that are different its the bees that make me homesick, they look like regular bees but they are blue and purple. Every time I catch a glimpse I think it is a real bee but then I am reminded that it is not home.”
The above passage from a book struck me deeply.
It made me think of many conversations I have had over the years with many persons and the struggles of trying so hard to “be a part of this world” when you feel like you really don’t belong. And isn’t that one of our most basic needs as human beings, the feeling of belonging? The feeling of being accepted? The feeling that yes, we too are a part of something larger than just ourselves. Some people find that feeling within their families. Some find it with a couple of close friends. Some find it at a place of worship.
But what about those that don’t find it? What about those that struggle each and every day to just BE a part of a group that loves and accepts them unconditionally?
98% of our DNA is the same as every single person’s on the planet, surely 2% out of 100% shouldn’t be enough reason for someone to feel different and excluded from the rest of the world…
How can we as their fellow human beings help? I don’t know. I don’t have the answer, but I’m hoping someone somewhere reading this just might. SO PLEASE, add your ideas at the bottom. Perhaps with many minds we can find a way to ensure ALL people feel the love and acceptance they deserve as fellow human beings.
Our new version of “normal”
I sit here typing while he sleeps beside me. We’re at home now, but the watching never truly stops. I’ve been watching him so carefully for 3 days now. Watching his chest expand and contract with every breathe. Watching to see if there’s still a tug at his trachea from struggling to breathe. Watching as he cries in fear for me while I hold him during treatments. Watching him wake startled and shake as different alarms and announcements pull him from sleep time and time again. But I also watch as he sings the Spiderman theme song with the amazing nurse and paramedics. And I watch him smile at me and tell me he loves it in the hospital because he gets to have me all to himself, and be so excited to see his dad, nana, siblings, auntie and uncle (even though his siblings means he has to “share” me again lol)
The doctors say he has Asthma. It’s what filled his right lung with striations of fluid and made it so difficult for him to breathe. He’s to be on inhalers every day for the next 6 weeks at least, and another inhaler whenever he’s struggling to breathe. We have an “action plan” for if/when he gets an attack again, including if it’s like this one or worse. We now have a doctor that will be following him until adulthood specifically for his Asthma. And I have one more thing to watch him for, one more medicine to carry, one more fear in my heart.
When I’ve heard the word Asthma before I didn’t realize it was a big deal, I didn’t know you could die from an attack. I blame my mother for that lol. She has asthma and as a little girl she told me all sorts of things so I wouldn’t worry. Like that if she was really sick from it the worst that could happen is she’d pass out and her lungs would “re-start” themselves. She told me that as long as she had an inhaler she’d never get really bad. As I grew older I never thought to question the comforting things she’d told me. I never thought to look deeper or to even examine what she’d told me with my own knowledge of anatomy and physiology. Instead I held onto her answers because it meant she was always going to be okay. That was and to be truthful still is something I desperately need to believe in. Only now I need to know the truth about asthma. I need to know that it can be fatal, and it can be difficult to control. It can also be managed, and (for some children at least) can be something that is outgrown eventually.
The morning he was admitted to the hospital I had already used ventolin and it hadn’t helped him at all. His attacks may not always be able to be controlled by simply using an inhaler. We might be visiting the pediatrics ward again. So with this knowledge I am altering our version of normal. It now includes inhalers, actions plans, respiratory therapists, an additional doctor for his healthcare team and possibly an O2 saturation monitor for at home to check his levels if I see him struggling to assess better if we should drive him to the hospital or if we need to call for an ambulance instead. But it will still include trips to the library and Airzone, unbirthday parties and fakey doodle restaurant nights. It will still include swimming lessons and songs, visits with friends and random adventures. Through it all, as always it will include love and an ever watchful momma who’s added one more thing to always watch for.
Teenage Mutant Ninja Turtles
I have agreed to speak at a local event called “The Heart of Ajax” this coming Wednesday. The really cool part is I’ll be speaking with a bunch of youths from all over the town of Ajax who will then devise a plan to take back to their school that will do one of the following: Raise awareness, Teach other kids how to be an Ally, Raise funds for an organization or in some form bring about positive change and positive impact in the lives of others. I was asked to speak about mental health, the stigma surrounding mental health and how to be an ally to those not classified as neurotypical.
I have thought extensively on what I wanted to say. I have started a dozen speeches, and threw each one away. Then tonight as I watched my son gently lean in to kiss his sleeping cousin’s forehead I saw her wall decals. She adores Teenage Mutant Ninja Turtles (TMNT) and I knew right then what I was going to talk about.
I hate TMNT. I hate what they remind me of. When I was in Grade 5 there was a boy in my grade who loved TMNT. we’ll call him “Shawn”. He would talk about them every single recess, and lunch hour. It didn’t matter if other kids really paid attention our not, this boy would still talk about them. See he didn’t really catch social cues all that well. He wore clothes a bit different from the rest of the boys my age, instead of jeans he only wore sweat pants, and his shoes had Velcro instead of laces. He would go into a special room with a special teacher than none of us had seen before for allot of his day. He didn’t always brush his teeth, enough so that the other kids really noticed the build up on his teeth at times. He was never mean to anyone. He would smile and say hi to everyone every day. For quite awhile, the first few months at least he tried to play with the other kids at our school. Every recess, and every lunch hour he’d try to insinuate himself into our games and our conversations. Most often his addition our conversations was to change the subject to TMNT. There was a girl in my class who was not very nice to allot of kids. She was especially mean with this boy. She would laugh at him and make fun of him and purposely exclude him from games and interactions on the school playground.
I never said anything mean to him. I never really said anything at all to him. I never stood up for this boy. I never tried to be a friend to him. I stayed silent when he was being slighted or shunned or made fun of. 22 years later I still have a lump in my chest when I think of him. I still feel bad that I wasn’t strong enough to stand up for him. I didn’t know why he was different. I didn’t understand it. I didn’t understand him. Do I know what his official diagnosis was, no I don’t. In part because we didn’t talk about that stuff back then. We didn’t get presentations or custom made books in our classroom to explain why someone was a bit different, and that we should accept them as they are. We didn’t have Autism Awareness Day or many of the other Awareness Days we now have for mental health/neurological diagnosis’s. But those are just excuses I tell myself when I look at my two sons. Pat answers for why I wasn’t the type of person I now want other children to be towards my own Autistic boys. The truth is, acceptance is taught. Acceptance is learnt, through being open, through conversations and presentations and through real life moments with someone who only wants to talk about TMNT.
My goal is to help these kids see how to be better than I was at their age. My goal is to help them develop their own school’s plan for increasing awareness of, and acceptance of persons with, various diagnosis’s. I want for the “Shawn’s” of the world to be invited to a birthday party when the entire class is given invites. I want their additions to conversations to be valued, even if they’re not agreed with I want them to feel like their peers are listening when they speak. I want for these kids I’ll speak with tomorrow to learn and in turn to teach others how to be an ally to those different from themselves. And maybe even to be open to the possibility of friendship with people with all different neural structures.
That is why I hate TMNT, because they remind me of when I failed at being an Ally. I failed at being open to someone different than myself. That is why I also love TMNT, because they remind me to be better, to be the type of person I would want in my own child’s life.
P.S “Shawn” I doubt you’ll ever read this, but if you do: I really am sorry.
Just 2 in 2 million
Recently Mr.C won a couple of tickets to appear in the audience of YTV’s “The Next Star Season 7” (which airs on Mondays at 7pm) Through various circumstances the 3 people he’d thought to bring were unavailable and so it was just he and I that went. While at first I was sad for him that his friends were unable to attend with him, I cherished getting some one on one time with him. Him waiting for the bus to go to the studio:
After he was done at the studio we hopped on buses and subways and travelled to Chinatown where we spent an unforgettable afternoon/evening. We window shopped, and shared yummy desserts from a little bakery. We laughed and chatted as we ducked in and out of different shops with their colourful wears and tempting foods. I didn’t buy myself anything, mostly because I got the best gift I could in the hours spent with my eldest son. He’s getting so big, almost a decade has passed since I first came face to face with one of the greatest loves of my life. When I had a really bad dizzy spell while we were out, he was calm and sweet as he smiled at me and reminded me that it was a trick of my mind and that nothing was spinning around us. While I listened to his words, so much like his father’s that I had to smile, what brought me to tears was the beauty of his serene smile and his determination to make sure I felt okay. He’s such a good person, through and through that I wonder how I got so lucky to have him.
I’ve promised him we’ll go back to Chinatown again soon, and I offered that we could bring people with us next time if he wanted. He looked at me and solemnly told me he’d rather it be just us two, cause he likes our one on one time just as much as I do. Or should I say 2 in 2 million when we spend our day in Toronto 😉
Growth Spurts and Autism
Growth spurts are a time of constant flux in the entire body. They are a time where all the chemicals of the body are busy creating new growth, they are a time of rapid development of bones, skin, muscle and even brain matter. When someone is Autistic their neural pathways work differently from the get go, but they are the same as everyone in the fact that their bodies are always trying to return to a state of homoeostasis. Homoeostasis is the tendency of an organism to try and maintain it’s internal equilibrium.
However during growth spurts the body is far away from it’s ideal state of homoeostasis, even during sleep.
In the brain specifically the white matter will increase greatly from ages 4 to 20. White matter is the part responsible for relaying signals and messages from one section of the brain to another, it is responsible for sending sensory and motor stimulus to the central nervous system to create a response.
What does that mean for an Autistic child or adolescent? It means that the part of the brain that sends sensory signals is rapidly growing, which means new pathways developing, and just like in a field, it takes time for a pathway to become easy to walk, and familiar. This means their brains are trying to send signals through new channels.
It makes sense that they will have more difficulties during those times of rapid growth with many aspects of daily living that they might not have had as much difficulty with pre or post growth spurt.
Areas of difficulties can include:
1) Speech production such as pronunciation, and echolalia
2) Sleep patterns can be disrupted and more irregular than what is typical for that individual
3) Transitions may be more difficult and they may need more time and help to adjust to changes in activity or location
4) Repetitive and Stereotypic Behaviours may be increased as they provide comfort and self-soothing to the individual
5) Emotional Regulation may be decreased as they are already struggling to return to homoeostasis and may feel closer to being emotionally overloaded from the moment they wake up than what is typical for that individual.
How you can help your child:
1) Remember that this is a difficult time for them. They don’t want to feel out of control, upset, confused, agitated or anxious and yet they are right now. No one WANTS to feel those emotions, and will naturally try to do whatever they can to either get away from the situation causing them, or lash out in frustration if it’s an internal situation they cannot remove themselves from.
2) Don’t overload them. If recently you’ve been helping them to learn how to cope with a specific sensory issue, or speech production issue such as pronunciation, remember that even when they are not going through a growth spurt they have to expend mental energy to master things such as being able to touch grass or pronounce an “s” sound correctly. Don’t stop working on goals already started, but don’t add additional ones until they have mastered the goals they are currently working on.
3) Every person has a way they communicate, listen/watch extra carefully to theirs to learn more about what ways they are specifically struggling with the most. Help them to create plans to work through such issues, or if they are too young to either make the plans themselves or with help, make them for your child.
4) Watch yourself. If you are having a difficult time staying calm remember that you have the right to feel however you do, it’s how we react to our emotions that is either okay or not. Take time for yourself, especially if you are extremely frustrated. As long as your child is in a safe environment there is nothing wrong with stepping into the next room to take a few minutes to regain your composure. Or if you can, find someone you trust to babysit and go out, even a trip to the grocery store alone can be enough to come back to your child ready to help them in the ways they need.
5) Nothing lasts forever, even growth spurts. Eventually they will hit a “lull” in their growth for a few or even several months at which time it will be easier for them to handle all that our fast-paced society throws at us.
References:
Billeci, Lucia, Sara Calderoni, Michela Tosetti, Marco Catani, and Filippo Muratori. “White matter connectivity in children with autism spectrum disorders: a tract-based spatial statistics study.” BMC Neurology. N.p., 29 Nov. 2012. Web. 18 July 2014. <http://www.biomedcentral.com/1471-2377/12/148>.
Giedd, Jay N., Jonathan Blumenthal, Neal Jeffries, F.X. Castellanos, Hong Liu, Alex Zijdenbos, Tomas Caron Paus, Alan C. Evans, and Judith L. Rapoport. “Brain development during childhood and adolescence: a longitudinal MRI study.” . Nature Neuroscience , 1 Jan. 1999. Web. 18 July 2014. <http://www.nature.com/neuro/journal/v2/n10/full/nn1099_861.html>.
“The brain from top to bottom.” Le cerveau à tous les niveaux. N.p., n.d. Web. 18 July 2014. <http://thebrain.mcgill.ca/>.
Behind starburst eyes 