Why It’s So Important to Have the Assessment Conversation

Something that teachers and educators really struggle with is the conversation in which they have to tell the parents that they might want to have their child meet with a pediatrician and do some assessments.  To me, as soon as Jake’s preschool teacher said those words, or something similar, I thought, “He’s autistic.”  I don’t know exactly what other parents think.

There is something of guilt, of blame, of “you should have known,” in the suggestion your child is struggling to the point that it is time to bring in the professionals.  It is very, very hard for the parents.  It doesn’t come from nowhere; our society has long placed the responsibility for children’s behaviour squarely on parents.  If a child does not follow rules or expectations, it is presumed that somewhere along the line, the parents did not teach them correctly.  It is almost always presumed.  Often, it is stated directly with comments.  “If that was my kid, I’d straighten him out.”  “I wouldn’t allow my daughter that kind of free reign.”  “What that kid needs is some discipline.”

When it comes to autism, these comments cut deep.  For much of the 20th century, parenting, specifically mothering, was seen by psychologists, the professionals that is, as a major cause of autism.  Literally, bad mothers were thought to have screwed up their children to the point of mental health disorders.  Leo Kanner, the man who first described and labeled autism, attributed the symptoms to cold, unloving “refrigerator mothers.”  From the 1940s to 1970s, the leading expert in autism, Bruno Bettleheim compared the moms of autistic children to Nazis, and his research and descriptions were widely promoted by media.  Anyone who worked with autistic children in those years did not know any other theories.  In the 1980s, parents were starting to disagree with this theory, but it wasn’t until the late 1990s that it was actually replaced with other ideas.

Parents are often blinded by their love, their hard work, or their innocent ignorance.  They are afraid of what an assessment could lead do.  Disability?  Autism?  Mental health problems?  Diagnosis?  Fear can lead them to blame the teacher, the school, the other students, the EA.  The parents may be struggling with the child too, not knowing what they are doing wrong, what is wrong with their love, with their child.  They may have worked so hard up to this point that they are no longer struggling the same way, having routines that work and a safe place at home that doesn’t lead to the same behaviours that the teachers see at school.  The highly verbal and intelligent nature of many children with autism can act like a red herring, distracting parents from the struggles that their child has when in a group or in school.

Autism Speaks adds fuel to the fear by continually referring to autism as an epidemic, searching for a cure, and citing that autism can destroy families.  The help they provide is coloured with undertones of tragedy and their worldwide recognition gives them a powerful voice.  Their website is often the first place scared parents look to, and it was the first place I looked when the thought entered my world.

You see, what this adds up to is that it is hard for parents to hear that their child needs to be assessed.

It’s also really hard for educators to tell parents that their child needs to be assessed.  Some are simply too scared.  Some don’t know how.  But it is so important.

When a child in British Columbia has an autism spectrum disorder diagnosis, they and their families are given a set of keys.  They open opportunities like support, community, and acceptance.  They give money, new ideas, and release the guilt.  It is not my fault that Jake is autistic.  I did not do this to him.  I could not have loved him any more, can not love him any more.  He has my whole heart.

Art created by Jake

See, the thing is, almost everything we thought we knew about autism was wrong.  And being scared of assessments is wrong.  They are not going to change anything about children who are perfect but struggling.  They are going to help.

Children who are autistic and don’t know it have all of the same hardships as children who are autistic and do know.  However, the difference it made for us was so incredible.  I have the ability to give Jake more processing time when I talk to him.  I have the ability to make the house quiet or find a calm space for him when he is overwhelmed and shutting down.  I have the ability to recognize when he can’t communicate and not confuse that with being disobedient or defiant.  I have the ability to learn everything I can about how he works and use that to love him better and make the whole family function better.

Without assessing him, I would still believe he is rude.  I would think that he doesn’t listen when I ask him to do things.  I would think he needs more consequences for yelling while I am putting his sister to bed night after night.  I would think maybe we are just not enforcing the rules enough.  I would be so wrong.  I have been so wrong.

Without assessing his eyesight, I would not know he needs glasses to see.  Without assessing his hearing I would think he might have a hearing problem, especially when he doesn’t respond to his name being called.  Without assessing his rash, I would not know he is celiac.  Without assessing his brain, I would not know that he is autistic.

It changes everything.

Like the first time you look through glasses and you see that there are individual leaves on the tress.  Like the first time you feel truly healthy after living gluten free for a year.

Like the first time your mom tells you that she knows you are overwhelmed, doing your best, and you need a break instead of a time out.

It changes everything.

I just really want to encourage parents to get over their fears and their innocent ignorance.  We fear what we don’t understand, and autism is something that we can understand and appreciate and love.  I want to encourage teachers and educators to get over their fears and speak love and truth to parents who desperately need to hear it.  An assessment is not the worst thing.  It is a beginning of a quest to know and support and love your child better.  This is what I want to explain to people.

Have courage.  Find and speak truth.  Grow love and understanding.

My Perspective on Autism

I have been working through a course on Autism training for EAs in an effort to collect a few, final credits and learn more about Autism and ways to support and help Jake.  As it is winding down, we were asked to write about our perspectives on autism and if they have changed.  Mine really hasn’t, but I enjoyed and appreciated the opportunity to write about what I feel so passionately about.  It is World Autism Awareness Day and it is Autism Acceptance Month, so I thought I would share it here.


 

My perspective on autism is shaded deeply due to my deep love for my son who is autistic.

I have come to have a deeper understanding of how difficult it is to negotiate the myriad of students with ASD and the other students with special needs and it has increased my appreciation of the teachers and EAs who work with my son.

Things that have not changed for me have become more clear.  I understand that my role in my son’s life is to be his advocate, support, safe place, and cheerleader.  I understand that the position I have as a teacher grants me a very special opportunity to teach inclusion, compassion, and acceptance.  I will be a person who treats disabled people with dignity.  I will teach my students that they are valued, valuable, and worthy of dignity.  I will model how I hope the world will be for people with disabilities and autism.  I will talk about ableism and how we think and view those with different needs.  I will talk about the social model of disability and ways we can be more accommodating.

I have come to a deeper appreciation of how many scientists, psychologists, and experts in the field of autism have been wrong.  Wrong assumptions and wrong science have left deep wounds in the Autistic community.  Vaccines, lack of empathy, inability to learn, refrigerator mothers, parenting mistakes, are just the tip of the iceberg.  Treatment in the past has included electroshocking children, removing them from loving families, and using food and hunger to force assimilation.  It’s no wonder that getting an autism spectrum diagnosis so often leaves parents terrified and in tears.

I will talk about the negative stigmas that follow autism and why they need to be left behind.  I will talk about fear and presuming competence even when people do not communicate traditionally.  I will model patience and explain how behaviour is communication.  I will advocate for employment opportunities for adults and youth with ASD and ways to include adults with autism in our schools.  I will listen to the Autistic community, carefully and attentively, so that I can be able to stand with them.  I will encourage my son to embrace who he is and to learn ways to be successful without pressuring him to pass as neurotypical.

I need to be an advocate for neurodiversity, and the more I understand about it, the more confident I become.  I need to listen in order to participate in discussions meaningfully.  I need to be a support to other parents and educators as they learn and discover how many of our previous understandings about autism were wrong.

My perspective on autism is that it is human and it is beautiful.  It is hard, and it can be painful.  However, it can also be joyful, passionate, compassionate, and smart.  It is incredibly valuable.

Lack of Focus? The Parent Teacher Interview

We received Jake’s report card last week.  It’s wonderful, full of encouraging, positive comments, and he is meeting all of the learning outcomes for grade one.  But one comment came up a few times.  The teacher said that Jake has trouble paying attention when there are instructions given.  That he is struggling with focus, and that if he tried harder he would be able to follow the set of steps he needs to do.  This trouble is happening in math, language, and art.  Yet his teacher describes him as knowing how to do his math and I have seen him work on his phonics and spelling.  He certainly can do it.  And art?  He’s struggling in art.  He comes home from school and spends hours drawing and colouring every day, but I can certainly believe that he’s struggling with the art projects in class.

I’ve sat working through this for a few days.  But you see, I’m struggling with it.  I certainly think he is capable of being distracted.  I know he can lack focus and I have seen time and time again how difficult it can be to get Jake to pay attention.  But I think there is more happening.

You see, I am not done learning about autism.  I am not done trying to figure out ways to help Jake.  And I have been learning about executive functioning disabilities.  Executive functioning is the name for the ability to follow a series of steps to accomplish a task.  It is something most everyone struggles with at times, as we are distracted or fall victim to procrastination.  However, in autistic people, the problem is that despite their best efforts, even when they give it their best, they often struggle to follow a series of steps.

It’s as if someone asked you to get ready for bed.  You might go to the washroom, brush your teeth, get into pajamas, and say goodnight…  You might follow that with reading some books and saying your prayers, then going to sleep.  However, if you were autistic, you might start by going to the bathroom.  Once there you would forget why you are there and start to run a bath.  Seriously.  Or maybe you made it through the bathroom but then cannot remember what to do next.  Or maybe you know you need to brush your teeth but the toothpaste is not in the same place as last night.  So you start wondering if someone broke into your house to steal the toothpaste and now you are scared and paranoid and you forget all about what to do next.  Seriously.  It is a disability that is connected to a certain brain function that holds onto the larger goal – going to bed, and therefore follows through to get you there.

I know Jake has problems with executive function. We used to think it was a short-term memory issue, but as I am learning more, I think that there is more to this. There are ways to help, such as following the exact same routine every night, so that it becomes easy to remember, or making a visual list that he can refer to so that he can see what step comes next.

So I am going to meet with his teacher and try to explain this and ask for help.  I am going to ask that she makes visual lists showing step by step what she wants him to do in art.  I am going to ask that she give him a reference for his math that shows, visually, what she wants him to do in order.  And I am going to ask that she or his EA help him figure out the instructions and steps in spelling and phonics.  It is the first time I am asking for accommodations to be make for Jake in school.  It is the first time I am going into a parent teacher interview with things I want the teacher to do differently.

I am nervous.  I really love his teacher and I really respect her.  I am conflicted.  I don’t want to ask for Jake to get an easy way out or to be given so much support that he isn’t actually doing the work himself.  However, I cannot unlearn what I have learned.  I believe that he legitimately struggles with this disability and that the accommodations I am going to ask for will help him to focus and thrive.  I honestly would not be surprised if he can do more math, more language than they are asking for.  However, he needs help with the steps and staying on track.

Stimming and the Benefits for People with ASD

I have not had a lot of time to write for my blog.  My husband and I have been taking an online course on Autism which has required most of my writing time.  I did have to write a research paper for the course, and I thought I would share it on here since I put work into it.

As a requirement of the course, I had to use person-first language, which is not my preference.  Please do not read this and think that my opinions on that issue have changed.

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Reading through a number of written works by individuals with autism creates an awareness of how important it is for them to be able to self-stimulate, or stim.  The stimming is an important part of being for people with autism, and the efforts of the population with typical neurotype to restrict, restrain, or limit stimming is harmful to people with autism.  The stims are incredibly variable and serve many functions, making life happier, easier, and less stressful for people who find the world often overwhelming and difficult to understand.

The world can be hard to process for people with autism, and stims can help by providing a way to self-regulate, to gain control of one’s own sensory input.  There are many ways that this happens.  One is through regulating emotions. According to The Stimming Checklist (n.d.), “Often emotions like sadness, anger, or anxiety will prompt stimming as a way to both experience these less pleasant emotions while also keeping our cool.” Positive emotions also elicit stimming in most people with autism.  Many adults with autism report relying on stims to help them regulate during social situations.  Social interactions, even after years of supportive therapy, can be very difficult for people with autism, and stimming is reported to allow them to participate in more varied situations, with more people and stimuli, for longer periods of time.  The sensory processing difficulties that accompany autism can be regulated by stimming, creating a way for people with autism to create their own sensory input.  This can result in greater sensory input when needed, or a sensory distraction when there is already too much sensation around that is out of the individual’s control.  Finally, a pragmatic regulation in an attempt to be considerate around other people can be a reason for stimming.  For example, “In a crowded lecture hall with a fascinating speaker, we might want to jump up and down with excitement and ask a million questions because we are so engaged, but if we believe this will not be helpful to ourselves or our classmates in the long run, we might choose a stim like twirling our pens or rocking in our chairs to remain focused and engaged without disrupting others” (The Stimming Checklist, n.d.).

People with autism report that efforts to curb their stimming are painful and result in more trouble than the stimming itself caused.  Emma, a poet who relies on alternative communication describes stimming as self-care, she says when asked to stop stimming, “it makes thick feelings worse.” (Zurcher, 2012).  Adults with autism report feeling that the “therapy” they were subjected to as children in order to learn how to pass as less autistic left deep emotional scars.  Feelings of shame are connected to the belief that stimming is wrong.  People report that stilling their stims leaves them open and vulnerable to the assault of daily living in a world that is too much to handle.  They also report that the negative emotional associations and judgment that society places upon those who stim break down the self-esteem and self-worth of individuals.  Julia Bascom (2011, April 5a) describes it as:

The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet. They grab our hands, “don’t do that, people will think you’re retarded.” They smack away picking fingers, because our foreheads must be pristine and easy-to-look-at for them. You turn away, pull away, try to put some distance in so you can breath, and they grab your hands, your hips, your shoulders and twist you back. You bounce your leg—surely you are allowed this?—and they press a hand to your knee, stilling you. Everyone taps their pencil, but when you start their hand closes over yours and won’t let go.

 

This is the opposite of how students in class should be made to feel, regardless of whether they are dealing with a disability or not.

Self-Injurious stims are often cited as the reason to stop stimming altogether.  Many people with autism do hurt themselves or injure themselves when stimming.  However, the idea that people with autism need to suppress their autistic nature and pass as people with typical neurotypes creates additional stress on already stressed nervous systems.  People with autism are dealing with a minefield of sensory assaults and attempting to appear different from their inner nature can be more than they bear.  Bridget, a person with autism, states that these behaviours are often a result of students “passing,” or forcing themselves to appear as if they do not have autism. She tries to follow instructions to stop stimming but finds that the need does not disappear. She writes, “Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left” (It’sBridget’sWord, 2012). A better solution to help students who feel the need to injure themselves is to be proactive and give them space and acceptance to stim safely in public, openly, as they feel they need to.  That way, perhaps more of their defenses can be strengthened and they would not feel so vulnerable.

Some research supporting the idea that stimming should be stopped suggests that it is harmful to learning and focusing.  It certainly can be distracting to others in a classroom, and the inclusive model of education creates opportunities for students with autism to annoy and disrupt their classmates.  An online search of how to stop stimming comes up with many results and reasons to “help” children with autism conquer their need to stim.  The May Institute (n.d.) pontificates,

Self-stimulatory behaviors may seem harmless. But for children and adults with autism who lack social and self-regulatory skills, these behaviors can interfere with learning at school or completing daily living activities at home. They can also be disruptive and upsetting to others, causing them to avoid or ostracize the individual in social settings.

However, in reality, there are many stimming behaviours that are not disruptive and actually help students with autism learn.  One adult with autism writes about stimming and focus, describing it like an itch that unless scratched continually distracts and derails focus.  “If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch” (MusingsOfAnAspie, 2013, January 3).  There is also research supporting this idea.  Studies have been done that show that when a person is abstaining from something that they want (need), they have a more difficult time concentrating on a task (MusingsOfAnAspie, 2013, June 18). Students with autism struggle with executive function, and when they are using their brain to stop stimming, they are unable to use it for learning and focusing on the tasks that are being asked of them.  In a classroom, students with autism should be taught socially acceptable behaviour and stim options, and the rest of the class should be taught how to accept and understand the learning needs when in a diverse class.

  
A school environment is precisely the place where social acceptance needs to be taught and modeled.  People who are concerned that the stimming child would be isolated, bullied, or alienated need to work on changing societal attitudes.  Kirsten Lindsmith (2014) describes having a hard time making friends with “same age neurotypical counterparts,” but says that, when she allowed herself to express her personality, she made close friends with a student with ADHD. She recollects fondly, “We got along swimmingly and stimmed together, repeating phrases and sounds and generally torturing our poor math teacher.” Children are adaptable and learn acceptance just as easily as prejudice, so teachers and Education Assistants have a responsibility to demonstrate and encourage friendships with students with autism.

Perhaps the best and most natural reason for stimming is the pleasure it expresses and creates.  Many people with autism have written about dealing with intense sensory input, and the intense joy they feel when they are stimming.  Joy and stimming seem to be inextricably linked; there is joy when stimming, and stimming when there is joy.  The words of adults on the spectrum need to be the authority on this topic, as they share what those of us who are not on the spectrum cannot truly understand. Julia Bascom (2011, April 5b) says that she feels that stimming is a benefit of autism, as it allows her to experience the world in a more enjoyable way. She sees others around her feeling “miserable” because they feel constrained by the need to follow social norms, while she is able to “amplif[y]” her enjoyment of the world through stimming. Reflecting on stimming, she writes,

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

Creating a positive, inclusive, and understanding setting by accommodating this need to stim benefits the student. This, in turn, can help create a happier classroom environment for other students, teachers, and Education Assistants.

Stimming is a powerful drive among people with autism, and it is a productive way to deal with the onslaught of sensory inputs they experience every day. Adults on the spectrum need to be the authority, as they are best positioned to describe the desire to stim as well as the positive benefits. They explain how it helps them calm down, focus their minds, and put themselves in a better mindset for learning. Attempts to stop this behaviour can cause emotional damage and a buildup of overwhelming emotions for students who are expected to “pass” as if they do not have autism. Stimming can also be a source of overpowering joy for students, and we should not deprive them of this beneficial aspect of autism to conform to social conventions that are built on an illogical “one size fits all” model.

 

 

References

 

Bascom, Julia. (2011, April 5a). Grabbers [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/grabbers/

 

Bascom, Julia. (2011, April 5b). The obsessive joy of autism [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

 

Harris, T. J. (n.d.). Reducing self-stimulatory behaviors in individuals with autism. Retrieved from http://www.mayinstitute.org/news/topic_center.html?id=355

 

It’sBridgetWord. (2012, October 7). Self injurious behaviors [Web log post]. Retrieved from http://itsbridgetsword.com/2012/10/07/self-injurious-behaviors/

 

Lindsmith, Kirsten. (2014, May 16). Stimming 101, or: How I learned to stop worrying and love the stim [Web log post]. Retrieved from https://kirstenlindsmith.wordpress.com/2014/05/16/stimming-101-or-how-i-learned-to-stop-worrying-and-love-the-stim/

 

MusingsOfAnAspie. (2013, January 3). The high cost of self-censoring (or why stimming is a good thing). Retrieved from http://musingsofanaspie.com/2013/01/03/the-high-cost-of-self-censoring-or-why-stimming-is-a-good-thing/

 

MusingsOfAnAspie. (2013, June 18). A cognitive defense of stimming (or why “quiet hands” makes math harder) [Web log post]. Retrieved from http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

 

The Stimming Checklist. (n.d.). So what is stimming? Retrieved from http://what-is-stimming.org/so-what-is-stimming/

 

Zurcher, A. (2012, January 2). An Interview with Emma about stimming [Web log post]. Retrieved from https://emmashopebook.com/2014/01/02/an-interview-with-emma-about-stimming/

 

No Small Thing

This is not a place where I want to vent.  This is not a place to write about the hard moments, the power struggles, the meltdowns, and the frustrations that come as a result of parenting an autistic child.  It’s not about that.  I don’t ever want to feel like anything I’ve written is something that would embarrass Jake or use his autism as fodder to make me sound like a better parent.  I don’t want it to be a place where I exploit his innocence, struggles, or autism to gain some sort of kick or self-righteous feeling.

I try to censor myself and I have my husband proofread all of my blog entries before I post them.  The internet is everlasting, after all.

That being said, there are some things that I feel like I can share.

Jake does better in school when I am involved.  I have been going to his class to read with a small group (always including Jake) twice a week since late September.  His teacher and I have both noticed that he is more relaxed, less anxious, and has better days overall when I stop in.  I love coming to his class.  I love seeing him in his desk, getting a hug and a kiss in the middle of my day, and knowing that I am helping him feel better and have a more successful day.

Jake does better with field trips when I participate.  Our school does not have access to a school bus, so parents help drive students for field trips, and I have gone on several this year.  While field trips are fun, exciting, and awesome, Jake also finds them overwhelming, unfamiliar and unpredictable.  If I am there with him, I can literally hold his hand.  I am reassuring, comfortable, and familiar.  I can talk him through what to expect and provide security and safety when things are unexpected.  I don’t feel like I am coddling him, overprotecting him, or hovering, even though it could be seen that way.  I am praying that my investment into his security and confidence now will pay off later in life.

Jake has not had many fevers at all since school started in September.  I believe, strongly, that a large part of the reason is that I am so focused on his needs this year.  I am keeping him home for afternoons when I see he is getting worn out.  I am putting more time into preventing meltdowns and really stressful situations for him.  I feel like I am working on the preventative rather than reactive side of things this year.

This year Jake has expressed that he wants to go to the mall and see Santa, that he wants to tell him what he wants for Christmas and he wants a picture taken.  I am so amazed.  He is six years old.  For six Christmases, I have tried to get him to go and to get a picture.  There was a commercial last year for Canadian Tire where a child used his iPad to FaceTime Santa because getting to the mall was so hard and created so much stress.  I cried several times when I saw the commercial.  It was so beautiful, so lovely, and I could so relate.  I gave up and didn’t even attempt it last year.

So this year, I am going to pull him out of school early one afternoon, to attempt to go at a quiet time in the mall.  I am going to practice with him, show him videos of other kids going to see Santa.  I am going to be patient with him, watch at the mall to see some other kids go first.  Then, if he is okay, we will get in line.  We will do it, if he wants to. And if he doesn’t end up getting the picture and telling him what he wants, we are going to bring along the list and an envelope and mail it.  No stress.  No pressure.

Except that maintaining this level of anticipation of possible disaster is hard.  Always looking for possible meltdowns, always checking to make sure he is healthy, not too tired, always comparing what I would like to do today with what Jake needs me to do is a sacrifice.  It’s not too hard.  I’m not wishing for anything different.  But it is a sacrifice.

I cannot plan an entire week in advance because if Jake is overloaded, plans get canceled.  In our family, someone is sick or burned out or there is a crisis every two weeks.  I cannot plan to do things after school if, in two days, we will have other plans.  That is too much for us.  I cannot take Aiden to a play date on a day that I have promised Jake I will be in his class to read.  That would throw off his expectations and the pattern we have built, creating stress and anxiety for him, leading to meltdowns at school and after school, and more stress on me.

I am tired.  I am not ironing shirts for my husband to wear.  I am not finding a fun place for our Elf on the Shelf.  I am procrastinating, and I will give up sleep in order to get those things done as well.  I give up sleep, I give up time with Aiden and Penny.  I give up time with my husband, and I give up time for myself, and then I try to get caught up and give each of us as much meaningful love as I have left.  We all sacrifice.  It’s hard to read that and hear the way it sounds.  I don’t mean that we are suffering or that it is terrible.  It is a choice that I am making, consciously, and I believe it is a good choice.  I am giving what I believe I need to, and I can see that, as a result, we are all calmer and happier, and things are going well.

This is just a small list of some of the trade offs that we are making daily.  There are so many things.  I cook food that Jake will eat, I make up songs at night describing the events of the Star Wars original trilogy so that he will not be surprised when he watches them.  I am tired, but he is happy, and that makes me happy.  Right now we are all feeling exhausted and are looking forward to the Christmas break.  I am looking forward to it with joyful anticipation, and also the knowledge that spending more time with all five of us in our small house will be extra noisy, I will not get anything accomplished, and I will have few breaks to rest alone.

I guess it’s just never what I would have thought, and I don’t know if or when that will change.  I am getting into a good groove, and I am realizing how much love, effort, and work I need to put into Jake.  It is no small thing but it is making a huge difference.

New Convictions

I guess I am becoming a neurodiversity advocate.  I am not reluctant, merely surprised.  This wasn’t in my plans.  I didn’t know I had it in me.  I didn’t know I needed to.
I have come a long way this past year.

I have decided that I am ready to write about what I think I believe, now.  That sentence is not meant to be wishy washy, but things are changing so fast that it is hard to keep up.  A year ago I wrote about what I thought I believed then.  A year from now I suspect that I will have continued to try to keep up and may have grown my beliefs some again.

Here it is for now, then.

I don’t want to change Jake.  I don’t want to cure Jake.  I don’t want to teach Jake to blend in or suffer through therapy where he works at becoming less obviously autistic.  I want to help Jake learn how to thrive in situations that are not easy for him.  I want to help Jake learn to navigate conversations so that he can maintain true friendships with people who value him for who he is.  I want Jake to learn how to conquer his anxieties and fears so that he is not limited by them.

This may not seem revolutionary, if you have been following my progression on this blog.  It is something that has been rolling around in my mind though, as I am reading Neurotribes and looking at the reactions from the autistic community.  It is also something that has become more important to me as I am struggling to find the courage to explain autism to Jake.  I also have been invited to speak to another class at my school about autism and how to relate to a friend with autism.  I feel like it is so important to ground myself in my beliefs and to know where I am coming from.  It impacts where I go, what I say, and how I act.

I believe that in our community, the ABA therapists who are working with our family are united with us in our goals and are compassionate, kind individuals who see Jake as a person and who have the time and resources to help him.  Therefore, and because the government supports us with funding for the therapy, we are happy to have them be a part of his learning team.

Over the course of his maturation and growth, I am hopeful that he will learn tricks and tools to help him in situations where autism is a disability.  Situations like job interviews, where shifting eyes suggest that he is untrustworthy, would be more successful for him if he could sustain eye contact or find another way to demonstrate his competence.

There is something about people who struggle.  They are made stronger.  The Bible says that it is easier for a wealthy man to fit through the eye of a needle than to enter the kingdom of heaven.  When life is simple and easy, we don’t understand how much we need God, how much we need community, and how much we have to give.  Jake is fortunate that he has us, faith, and a strong community to stand with him as he faces his struggles.

Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I feel like sometimes I am the one who needs the therapy.  I need someone to come in to my house and reward me for staying calm when Jake sings the same three notes at top volume for over 20 minutes.  I need someone to reward me for realizing when he is feeling overwhelmed and when he is strategically driving his little brother insane with purpose.  I would love to be coached on how to come up with things to help everyone stay cool and comfortable while I am making dinner.  Unfortunately, there is no funding for that.

I jest, but in truth, I am realizing more and more that it is me who needs to change.  I discovered this website today, https://theantioppressionnetwork.wordpress.com/allyship/  and it explains allyship as

an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people

I am that person of privilege.  Social situations make sense to me.  I thrive on conversation.  I talk out my feelings.  I excel in interviews, in group situations, and don’t notice when things are out of order.  I can keep my train of thought for several days, or several minutes, keep two conversations going while cooking and keeping an eye on three kids.

But.

But I love autistic people.  I love people who are disabled.  I will stand with them work with them.

I believe that autism is a disability.

The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I had a conversation last summer with my sister-in-law about disability.  She said that it seems like being autistic is a disability mainly because we (society) don’t understand, don’t make it easy, and put up obstacles for people who do not belong to the neurotypical majority.  She suggested that being autistic was almost like being evolutionarily advanced, in a sort of way, except that the society is restricting the advancement.  It resonated with me and I am still chewing on the idea.

 

Force Awakens Dealer by Jake
 
I believe that the goal of therapy is to support Jake and teach him how to manage being autistic. I hope that learning strategies that work for him will increase his confidence and abilities to negotiate within our world and not lose any of what makes him who he is.

I believe that I have a role to play in educating all those I can.  Everyone who knows him, everyone who knows an autistic, everyone who knows someone who is different and who is a minority and is therefore marginalized by the way our society runs.  I can’t tell those in human resources that when hiring, to hire every shifty eyed individual.  However, I can increase acceptance and understanding of different ways of communicating.

Most importantly, I can have faith in Jake.  I believe in him.  I believe in his abilities to solve problems.  I believe in his dreams.  I believe in his heart, his gifts, and his growth.  I believe that he is created by a fierce and loving God who knows what he is doing.  I can wait, I can watch.  I can hope and I can pray.  And I can find what I believe and stand firm in it.

 A Series of Updates

  1. Jake now eats his vitamins. The Star Wars games didn’t work.  I think they were too complicated.  We found a system, though, where he shows me “his moves” for a minute, powers himself up, so to speak, and then downs the vitamins.  Awesome!  It has worked consistently for about 12 days now and I feel like we have created a new routine that works.
  2. I am trying to use the words autism and autistic more in front of Jake, working them into conversation within earshot. Baby steps.
  3. The IEP meeting was great, and afterwards I felt much relief. He is really only struggling with social issues at school right now.  We discussed enrichment for him.  He really is such a neat kid.  They spoke so positively about him.  He’s sweet, polite, and kind.  He is respectful.  He is not defiant or interested in causing trouble.  He doesn’t disrupt his classmates.  The one day that he came close to a meltdown at school, his EA correctly realized that he was feeling overly anxious and provided him a chance to calm down and reset, avoiding a potentially bad situation.  Apparently the other students all get along with him and like him.

I am going to work at having some more social opportunities for him, playdates and stuff.  I don’t want to overload any of us, though.

  1. We have also started Tae Kwon Do with both Aiden and Jake, and that adds more stuff to our routine too. It was really hard to get Jake into it.  His dad did Judo as a teen, and won several medals that the boys love playing with.  His cousin also does Judo, so naturally Jake thought that Judo was the only martial art that is acceptable.  Unfortunately, where we live there is no Judo offered, Tae Kwon Do is our only option.

We watched some videos on YouTube of kids practicing and Aiden was sold.  He was so excited he could hardly stand it.  The first class he was beaming the entire time.  Jake, however, refused to participate, and we agreed that he could observe and hoped that he would come around.  The benefits were so obvious.  There were much older kids, teenagers, mentoring the beginners.  The relationship possibilities thrilled me.  There was a great focus on practice and support.  There was a lot of structure and repetition.  There were clear goals and rewards in place.  I just felt like it was exactly the extra-curricular activity for us.

Jake was still not sold.

And so we turned to our standby for such situations.  Bribery.

We agreed that if both boys participate in 35 Tae Kwon Do classes, we will buy them a big Lego Star Wars set.

Well, I had barely whispered the idea and Jake was all of a sudden completely turned around and ready to go.  He had to wait three days before he could finally participate.  Oh!  He’s so funny.

And so, they both went.  They did great.  They learned lots, and Jake was already correcting Aiden on Tae Kwon Do etiquette.  They came home and put shiny stickers on their new 5×7 sticker grids that we printed to chart their progress.

I am thrilled.

  1. Jake has missed parts or all of eight days of school due to fevers. I am jumping into the gluten free/casein free diet in hope of making a difference with this and I have no other ideas.  We are working as a family to try to slow down and make time for him to relax and play.  I have booked an appointment with his new pediatrician to discuss it but it isn’t until November.  All in all I feel quite frustrated and helpless with the fevers.  They are so hard on him.     
  2. The other change around here is that all of a sudden, Jake is reading.

At the Meet the Teacher night, his teacher suggested that if we read with our kids for eight minutes a day, four days a week, they could earn a reward.  I am motivated by rewards just like my munchkins, and so I did not want Jake to miss out.  I pulled out the reader he brought home, and like nobody’s business, he read it!

The next day I tried him on something less familiar, digging out Green Eggs and Ham.  Sure enough, he read that too!  The first half, anyways.  Tonight he read Go Dog Go to his dad.  I am incredibly impressed.  That teacher, she is teaching him to read!  He is getting it and is so proud.  He was just grinning so adorably tonight.  I’ve heard that there is a light bulb that goes on when kids learn to read.  I had no idea how amazing it is to watch.

It’s so good. I am so proud.  There is so much evidence of God’s love here and we are so blessed.

On Paper

A view of the mountains from our hike this summer. The first time any of us climbed a mountain.
A view of the mountains from our hike this summer. The first time any of us climbed a mountain.

Tomorrow is our IEP meeting for Jake.  For you non-school people, or non-parents of kids with special needs, that is Individual Education Plan.  We meet with all the important people in the school who work with Jake, and sort out some goals and objectives for the year.

It’s wonderful.

They really care about him and us and do so, so much good.

It’s also really hard.

It’s hard to look at Jake on paper.

We always start with some strengths and positives, and celebrate successes as we talk about him.  But the point of the meeting is to figure out the negatives, the things that he needs more support, practice, or focus with.

I hate looking at the papers.

There are so many forms.  It hasn’t even been a year since the diagnosis.  The paperwork for that was an anvil falling on my head.  Heavy.  Every few months, there is a consultation with his Behaviour Interventionist.  Also wonderful, also encouraging, supportive, leaves me with hope, and fills me with forms.  Those forms are like a pick axe to my heart.

They ask me to rate things.  Like, How often does Jake disobey rules or requests? How often does he act anxious?  How often does he make a compromise without conflict?  How often does he speak in an appropriate tone of voice? How often does he question rules that seem unfair?  How often does he join activities that are already started?

I don’t know!

Sometimes?  Often?  Does that make him worse?  Does that mean that he needs more help?  Does that mean that he’s struggling?  Oh!  How can I help him?  How can I ease all of these things for him?  How can I make the entire world make sense?

It’s crippling.

Talking about how well he eats his lunch, or how he is participating in gym does make me happy.  But it disappears as soon as I have to focus on all these black and white questions.

I know it’s on me.  I know the teachers and the EA and the student services teachers are all helping him.  But it’s on me.  All of those things.  I know that they are all connected.  They are all springing from his brain and his sensory issues.  They will all improve as he learns strategies to cope and connect with people.  And that needs time.  And patience.  I have both.

He is autistic.  I waffle between wanting to declare it to everyone I see, just to tell them so they offer more patience with him and wanting to protect him so fiercely from anyone seeing his struggles.  More often, however, I want to share with people what I have learned, what I know now about autism.  I no longer doubt, ever, the truth of the diagnosis.  I have read enough now that I can practically see the strains on his brain.  I can feel the tension of his muscles, grip the piles of words, rules, sounds and smells that are thrown at him.  I can even breathe in the release that his own words and sounds create.

I struggle with the feeling that Jake’s disabilities and struggles are not obvious enough to justify the support that he needs.  His verbal abilities and quick intelligence lead many to focus on his strengths.  While I adore that, and love that people really do see him in a beautiful light, I also see the overload.  The panic.  The feelings of uncertainty.  The lack of short term memory.  The way he loses track of what he is supposed to be doing or what day it is.  The way he invents his own game that he plays in his head beside his classmates at recess instead of actually joining in their games.

I have read about autism being an invisible disability.  I see it.

So yes.

These meetings.  These forms.  This focus on the struggles and needs he has, it is so important.

And it breaks my heart.

The Gift of the Diagnosis

Today we had our second IEP meeting with Jake’s school.  I have read such heartbreaking stories of others’ anxiety about these meetings.  How things can go so poorly, misunderstandings can happen, people don’t see eye to eye, and stress rules.  It just is so different at our school and I am so thankful.  I’ve also read some other stories like ours.  We are those people with the amazing team who love our son, who get him, support him, love him, and listen to us.

I cannot believe what a gift this autism diagnosis has been to me.  One year ago, I was so worried about Jake.  I was so scared of kindergarten, but I was even more scared of more days of him being home.  I didn’t know if I should hold him back a year, or put him in school.  I felt selfish because I didn’t know how to handle him and I needed help.  I felt hopeless because it was as though my relationship with Jake was based on rules, punishments, and not getting anywhere.  Meltdowns were violent, heartbreaking, long-lasting, and often.  I didn’t know if he was autistic or not, I didn’t know what that meant, I didn’t know what I was doing.  I did know I needed help.

Now he is so successful.  He is so happy.  He rarely has a big meltdown.  He knows how to calm himself down when he is upset, and I know how to help him.  Jake can articulate what he needs and how he is feeling, and I know enough to listen.  He is doing so well.  I am doing so much better.  I am able to stay calm when I talk to him.  I am able to separate discipline and support, punishments that are important and effective and when all he really needs is time and help cooling off.

What a window.

Being officially autistic has given Jake such opportunities.  He is pulled out of the kindergarten class with a small group for learning assistance twice a week.  He is pulled out with another group for speech and language in social situations support once a week.  He gets one on one time with his behavior consultant twice a week at school and twice a week at home.  There are two educational assistants in his class who listen to him, support him, prep him for transitions, and make his day run smoothly.  And of course, his teacher is incredible.  She has encouraged him and listened to him.  She has directed all of this.  She is amazing.  We are so, so blessed.

I know that there are other kids who have similar needs and need support in similar areas.  But our diagnosis has given us access to so much extra support.  There are times I wish they had a similar diagnosis so they could have all the good that we have too.

There are days I don’t know why Jake has to deal with this.  I don’t know why this happened to my baby, to our family.  Days like today, I don’t know why it happened but I am thankful.  How complicated.  I want to share this blessing.  I want to share.

I am prayerful.  I believe that God gives to us with responsibility.  We are stewards of His blessings.  Today I am resting in relief, soaking in the joy that came from this meeting with the people who make up our team.  I am praying for direction, for keys to what to do in the future.

I do know that my desire to focus on the positive, my attitude about Jake being autistic, has been strengthened.  There is nothing in the DSM-III, DSM-IV, or DSM-V that says autistic kids are anything less than incredible.  Like Temple Grandin said, “Just different.”  And he’s such a cute little kid.

the Star Wars presentation

Well.  I have to brag.  I want to scream to the mountains!  My kid is amazing!  There is nothing, NOTHING he can’t do!  My five year old, my autistic five year old Jake, did a presentation today for his class.  A 25 minute presentation about Star Wars characters. For twenty-five entire minutes, he ran the class.  He stood in front of the room.  He described the characters, spoke about what makes them interesting, and answered his classmates’ questions.  He totally held their attention.  He wasn’t nervous, wasn’t shy.  He was confident and well-spoken.  He remembered everything, he had no notes.

His teacher suggested the presentation several weeks ago at our parent-teacher conference as a way for him to bring some of his passions into the classroom.  I thought she must have been just being sweet, but when I followed up with her, she booked a time for him to talk to the class.  We hooked up our laptop to the projector, so that the pictures of the famous faces were big and bright, and he just took over.

Of course, because he is singularly focused on a topic, there were many characters that no one has ever heard of except for the most passionate of fans, and Jake.  But the presentation went in alphabetical order (of course), building to a fabulous picture of Yoda flying through the air, light saber in hand, towards an enemy who has no chance.  I was beaming.  Glowing in the reflection of my son in his glory, sharing his excitement with a class of his peers who were taking in every word.

Things that surprised me will keep coming up as I relive it all night long.  How one little girl asked, of Queen Padme Amidala, if she was a princess.  How Jake responded, “No, but just wait, there is a real princess coming up.”  Then, when Leia finally did come up, he called her by name, and said, “Okay, now this is a princess.”  Incredible.

How some questions were handled seriously, whether Super Battle Droids have heads or necks.  But other questions were laughed at, together with the asker, whether Darth Maul survived.  As if that is the funniest thing ever. And of course, the hilarious Yareal Poof!  Does he poop?  Because poop sounds like poof!  Get it?

How one little boy, in the middle of the presentation, asked Jake if they could have a play date.  How another asked, right afterwards, if he could come over to watch Star Wars.  Jake hasn’t even watched Star Wars.  He has watched the Lego series and read the books.  The real thing would give him nightmares, and since sleep is so precious, we haven’t risked it yet.  Maybe they can watch some Lego Star Wars together soon.

Amazing.  I can’t get over it.  What an opportunity.  His teacher, his Educational Assistants, they were all impressed and spell-bound.  I am one proud mom.