On Therapy and Shame

We are looking for a new behaviour interventionist.  I think I may have found one.  I am hopeful.

We are taking a break from ABA therapy.

I am incredibly thankful for the interventionists who have come and worked with Jake and our family over the past two years.  They have been professional and kind, respectful and wise, and have taught Jake and me so much.  Now we are ready to move on.

I want Jake to learn more in-moment strategies and skills.  I want to avoid tiring him out further and adding to his stress.  I want to see him actually apply some better behaviour skills, rather that learning them, practicing them, and then forgetting or refusing to use them.  My plan is to have someone come and work with us twice a week for a while, once during the day for a few hours and once during the evening.  I want them to integrate and join with us in whatever we are doing that day, and help us negotiate the trouble spots.  I want them to slow us down, so that we have an outsider voice breaking the tension.  I want them to work with Aiden, my husband, and me as much as with Jake, so that we are all learning together how to function better as a family.

I am hopeful.

Really, I want to better support Jake when he is struggling.  I want to slow down my reactions so that I can think clearly and see what is triggering him.  I want to be able to think about autism and what I know about how he works instead of getting frustrated about the behavior and never dealing with the root of the issue.

I want to model for Aiden how to be a friend to Jake.  I want to model for Jake how to relate to his brother and parents.

I read this amazing blog recently.  AMAZING.  I took so much out of it.  She writes about everything I feel and articulates situations I completely relate to.  Her big point, however, is that our medical culture and history treats mental health as something to be cured.  This is not always in the patient’s best interest, as truly, many mental health conditions can never be cured.  Rather, we focus on therapy as a way to deal with, cover up, and mask the underlying condition.

I think that therapy can be incredibly helpful.

We will most likely do more therapy in the future.

However, I believe that therapy has to be done very, very carefully.  The goal of any intervention needs to be helping the person learn a skill that will make their quality of life better without demeaning or attacking their self-esteem or self-value.  Learning ways to communicate is so important.  Forcing children to repeat words that don’t empower them and leave them still unable to explain their intelligence does not help.

The adult autistic community has written much on this subject.  They have totally convinced me that one does not need to be verbal to be intelligent and one can be disabled and still be incredibly valuable in society.  However, when I encounter real life scenarios with other parents at a playground, for example, stigma, judgment, and ableism are prevalent in my town.

Just the thought of talking about autism with other parents is scary.  How do you say, my child is on the autism spectrum, I can see similarities in your child, can we talk about that?  I can’t.  I just can’t.  I can’t even say, I know that there are so many kids these days, with everything from autism to ADHD and everything in between.  What makes your kid special?

What I have learned about autism makes me want to change my community.  We are a lovely community.  Small, but not too small; Christian, but not overly religious; helpful but not too nosy.  And yet, we struggle to change.  I would like to see parents who step up to each other and encourage each other even when they don’t know each other.  I would like to see parents who can say, my child is autistic, it’s nice to see him playing with yours.  Instead of, why don’t you teach that kid some manners?

We need to change the way we look at each other on Facebook.  I know from experience, I have been in tears, and not known how to get help, and posted a status update that says something inane like, “so tired of cleaning, why do they make so much mess when they play.”  If I had actually been on the phone with someone, I would have been crying, explaining what went down that day, how my heart aches and I doubt my parenting, how I love my kids but feel like I’m failing.  We would have cried together, then shared a story, made plans to have coffee or wine sometime soon, and ended the phone call laughing and being made a little stronger.  Brene Brown talks about this idea in her book, The Gifts of Imperfection, when she describes how being vulnerable creates real relationships and conquers shame.

I would like to see dads who listen to moms when they say, “I think there is something going on with our child and I want to have them assessed by a pediatrician.”  I would like to see moms who say, “I can see you are grocery shopping with a child who struggles in busy stores, I get that and you are rocking this.”  I would love it if I could see friends be honest with each other and say, “I can see that your child is showing some autistic traits, you need to talk to someone about it and have your child assessed.  It does not mean you have done anything wrong, there is nothing wrong with getting support, and I will be here to go through it with you.”

IMG_4573
Line up of stuffed animals and toys on a couch. They are happy toys, ready for the day’s events.

I am trying to work all of these ideas together into some sort of presentation I can give to parents of autistic children or even parents in general in my hometown.  I don’t know how to go about it.  Ideas are welcome.  I want to help parents move past shame and fear, get the point that disability and differences aren’t things that change the value of our children.  Parents need to have that point so that we can teach it to our children.  I want Jake to know that being autistic is nothing bad, it’s part of his character, his struggle, that makes him who he is.  I want him to be able to ask for support and be himself without being ashamed or judged.

 

Fries with Trust, or Trust with Fries

I read a beautiful post today about trust. It was written by a mom, about her father and her daughter and how over time they have developed a trust where even though the little girl is autistic and dislikes being touched, they can share an embrace. She explained how when we love someone so much that we can hardly breathe because we just want to hold them, sometimes the best way to show that love is to restrain ourselves until we can develop the trust that is needed. Like I said, it was beautiful.

Jake and I struggle with trust. When he was younger, when I didn’t know about autism and what he actually needed, I pushed him too hard. I tried to get him to try new things, even when it became clear that he really didn’t want to. I tried to get him to be adventurous, to take a risk, to jump into a pool, for example, when he really, really didn’t want to. I am sorry now. I am working so hard to earn his trust.

Most of the time I can see that he does trust me. He loves to be held and snuggled by me, so long as I respect the “not too tight” rule. He loves to look into my eyes, and I love to look into his, as long as I wait for his initiation and am not also trying to talk to him. But then something comes up that I don’t understand. And I struggle.

Today it was French fries. Jake loves fries. Loves McDonalds fries, Arby’s fries, restaurant fries, homemade fries. He loves straight fries, crinkle cut fries, and yam fries. He loves fries with the skin on and fries with no skin. He loves those tasty taters that are essentially balls of fries. So his sweetheart of a grandma made him some very special alphabet fries. They were gluten free, casein free, totally healthy and totally fun. We spelled his name. But nope, he would not eat those fries.

I didn’t get it. And I didn’t let it go. He was being rude, refusing to eat them. He said his tummy was full. And then he asked me for a Popsicle. Not going to happen, buddy. We took the fries home, telling him that he would eat those fries before he was allowed to have anything for a bedtime snack, he would eat those fries for breakfast if he had to.

So there we are, ready for bed, and he’s crying about the stupid French fries. And I finally asked, “Jake, what is wrong with these fries?”

Well. They were too curly and strange. He was worried that they would make his stomach curl and be sick. They were not the right shape for food to be.

That’s when I clued in. This is not about food. This is about autism.

He is autistic. He can’t eat strange fries. They have to fit into the idea of fries that he has, that he knows. Strange things are scary. Strange things are unknowns and that is scary. I am scaring him. He doesn’t trust this food and he is scared and crying because he thinks I want him to eat something wrong.

Breathe, mama.

So, we calmed down, and talked about fries and how they are made, and how I ate them and they were good. Then we broke them into straight pieces that resembled what fries should look like and he ate them without difficulty. Except for the S and the R. They were just too curly. And that’s okay with me.

I am going to get it. I am going to earn his trust. I just have to trust him. I have to ask him and I have to listen to him. It goes both ways. It’s a hard lesson for me. But I can see the payoff.

Jake received this Lego set for his birthday and his loving aunt spent ages building it with him.
Jake received this Lego set for his birthday and his loving aunt spent ages building it with him.  Building trust. right!

Stories of trust earned by learning how to really love each other and show that love through restraint and patience inspire me. I want to respect Jake and what he is experiencing. I want him to trust me so that he can stretch and become more flexible, because he trusts me, not because he is forced into it.

I will need to breathe more.

Verbal Stimming

Jake loves to talk.  Seriously loves to talk.  This kid just will not stop talking.  I am thankful and blessed that he is verbal; when he was two, I wondered if or when he would start to talk.  By age three, I was relieved that he had a few favorite words and some very short sentences.  I would never have called him expressive, however.  Something happened though, between ages three and four.  Jake really started talking, and he has not stopped since.  There have been many, many nights when we have gone upstairs, late at night, to kiss his head while he slept, and marvel at how quiet he was, because it is never, never quiet here in the day.

I first wrote about his talking here.  I have been looking into the idea that Jake is a verbal stimmer (see below for definition).  I have watched him a lot.  When kindergarten started, he was chewing on pencils constantly, but I have never seen that at home.  I have never seen any other real stims of any kind, though (for example, hand flapping).  After his diagnosis, I started looking for them, but most of the stereotypical, obvious stims have never been a part of our lives.  I counted myself lucky, and moved on, but now I am taking another look.

He really just cannot shut up.

Not at all.

He is getting better at waiting until we are ‘available’ to talk to him.  But he often just goes off talking anyways, whether we are paying attention or not.  There are times every day when I ask him to just be quiet for a minute, just a second, so I can hear what his soft-spoken little brother is trying to tell me.  Thankfully, Aiden is becoming less soft-spoken all the time.  But the noise level in our house is insane.  Penny could sleep through a rock concert, I am entirely confident.  She is trained for it.

So what is verbal stimming?  It is a couple of things.  Jake finds joy in talking.  I don’t know if it is the sound, the feel of the vibration in his throat, the movement of his lips, or some combination.  But there are many times a day when he is just so happy to be talking.  Often way louder than any situation in our little house could possibly require.  This fits with what I have learned about stimming.  It is something autistics do for happiness—apparently, an incredible happiness that is self-controlled and almost impossible to restrain from.

The other thing about verbal stimming is that it can be calming and soothing for Jake when he is upset.  He could be upset by anything or everything, and he gets loud.  If he is upset because he sees that Aiden is hurt, I get a run-on, loud, lengthy, cannot-be-stopped-or-interrupted explanation of the event in super detail on repeat.  If he is upset because there is a noise that he is bothered by, he may cover his ears, but he will often also start singing loudly.  If he is upset because he is hurt, angry, frustrated, annoyed, or impatient, he will whine or cry, often with words.  He cries over things that seem like smallest problems and screams over scraped knees.  I have tried all kinds of things to help him calm down, from deep breathing to deep pressure to movement to distractions.  The most effective, and often the hardest for me to do, is to simply let him cry it out.  The more I try to get him to stop crying, the more frustrated he gets.

I found this description of stimming really helpful.

Sometimes stimming releases pressure—especially the good kind of stimming. Sometimes a stim will help us focus to block out invasive and overwhelming sensory input, becoming an essential coping aide.

It’s a type of self-soothing, whether one needs to be soothed because something is just too cute or because that ambulance siren is just way too loud, the root cause is essentially the same.

In my opinion, the question shouldn’t be why autistic people stim, it should be why do autistic people stim in such a specific way. Not every autistic stims, and not every autistic person shares all the typically autistic stims. I’m a finger waver, but I’m not often a hand flapper. I have a vast number of vocal stims, but I’m not usually a rocker or a bobber. I know hair-twirlers who rock back and forth. I know knuckle-crackers and foot-tappers who don’t wave fingers or flap hands. Every autistic is as unique as her own personal stimming lexicon.

Neurotypical people stim too! Some notable neurotypical stims include tapping fingers or feet to music, stroking the face when stressed, or rocking in a rocking chair.

https://kirstenlindsmith.wordpress.com/2014/05/16/stimming-101-or-how-i-learned-to-stop-worrying-and-love-the-stim/

A funny thing about that is that I totally get it.  While I don’t cry over Lego that just won’t stay together in super elaborate creations, if I am actually crying, it’s incredibly difficult for me to stop.  Once the emotions and sounds and tears start coming, the release is so powerful.

The Teenage Mutant Ninja Turtle Lego minifigures carefully lined up with some of the other favourites from our house.  (Photo credit, Jake)
The Teenage Mutant Ninja Turtle Lego minifigures carefully lined up with some of the other favourites from our house. (Photo credit, Jake)

Autistics have been very helpful explaining stims and how important they are.  One, Anabelle, says this,

I benefit greatly from vocal stimming. It keeps me more in more control of my physical body when I am overcome by miscommunications, anxiety, and too much of everything.

BUT it really does attract a lot of attention.

When I vocally stim, there isn’t much warning, and I have very little volume control. I try hard not to be too close to someone if I think I am going to be loud, for the sake of their hearing. But it’s difficult for me to control.

http://www.anabellelistic.com/blog/way-to-stim-wednesday-vocal-stims

I watched this video called, “Ask an Autistic – What is Vocal/Verbal Stimming?”  It was amazing.  If you have a few minutes, please watch it.  It’s well done, hopeful, encouraging, and so, so good!  I loved so many things about this.  One was how lovely this speaker is, Amythest Schaber, how sweet and autistic.  Especially if you don’t know many autistic people, this is a nice example of how real and nice they are, not strange or scary!

https://www.youtube.com/watch?v=WEB7nGvJt7I

She does a very good job explaining why it is important to allow verbal and vocal stimming, and how the real problem with it is when it is annoying for others who are around.  She suggests that we need to change our perspective rather that stop the stimming.

I agree with her.  Completely.  On principle.

Jake’s non-stop talking does not hurt him, nor does it hurt anyone around him.

But there are so many times that we are all going crazy!

I know a few things that will help this situation, and the more I think about it, the more I realize they are powerful and possible.  The first and most important thing is that we need to be less bothered by it.  Truly, my husband and I can text each other if we really need to.  But if I can recognize that it brings Jake joy, calms him and helps him, then I will be more patient, and I will be happy that he is doing well.  If I can remind myself that it is okay, that all is fine and it is his way of coping with stress or creating and expressing joy, I will find peace and joy in that.

The other is creating some boundaries.  I can build on the ‘not available’ idea by creating times when it’s not okay to talk constantly.  I can make a social story about watching tv with dad and how he likes to hear what the tv says.  I can create some practice situations where other people are trying to talk and the noise Jake is creating makes it difficult.

Finally, I have really noticed that Jake loves music.  I hope to write more about that some time soon.  But when there is music on, even softly, he listens, he sings, he dances, and he is calm.  He does not talk nearly as much.  I also love having music on in the house, so I can try to remember to use this when his constant babble becomes overwhelming.  It may be time to just change the sound in the house to music rather than wish for a quiet that will never come.

Empathy round 2

I can not say it enough.  Learning about Jake’s autism has been such an incredible key to knowing him.  It is affecting our family more and more.  As we learn more and filter what we are seeing day to day, we are becoming better parents, more understanding people.

I want to revisit the topic of empathy.  My first post on about empathy is here.  We have talked about it in rounds, my husband and I.  We see Jake’s kindness, thoughtfulness, concern for others all the time.  And then all of a sudden something seems off and I can see why people say that autistics struggle with empathy.  Something as simple as, ‘I hurt myself, I need a minute, then a band-aid, and then I can come put the tv on for you.’  It makes me shake my head and wonder, “Kid!  Where is your understanding?”

However, I believe that this seeming lack of understanding does not truly correlate with a lack of empathy.  I think it is more social cluelessness, as explained in this definition and example.

– Social cluelessness

Not being sure how to act without making things worse if someone for example suffers a tragic loss; if they want to talk about the painful event or if they don’t want to be reminded. I think it must be hard for everyone to know, but even more so for a socially clueless Aspie.

When my only friend in 5th grade lost her father I had no clue what to say or do and was too shy to ask anyone for guidance (the information about her father’s death didn’t elicit any advice or instructions from my mother, who was very young and rather Aspie herself) so I just avoided my friend for a long time instead. A shameful thing that I felt bad over for years but I can now have compassion for myself for really not knowing how to handle it.

– Ing, site-author

https://insideperspectives.wordpress.com/emotions/empathy/

What appears as a lack of empathy is probably just Jake trusting that I am mom and therefore I will always be fine and I am here to help with his needs, which according to him often include turning on the tv at the time of his choosing.  I think it is more ego-centrism and cluelessness than genuine lack of empathy.  Ego-centrism is just as common in people with autism as social cluelessness.

“Aspies find it easy to get called selfish just because it doesn’t occur to us to enunciate concerns for others or to ask unprompted casual questions about them. I can remember once getting called selfish for not asking after the health of as family friend who had been seriously ill (he recovered and is alive now). It simply never occurred to me to ask after it as I knew I would hear any news I needed to.”

– Maurice, Aspie from Scotland

https://insideperspectives.wordpress.com/emotions/empathy/

In my previous post, I discussed the idea that autistics actually experience an overwhelming sense of empathy.  This is not the only opinion, however.  One writer I have really enjoyed reading is an adult on the spectrum who disagrees with the idea that autistics have an over-developed sense of empathy that is simply misunderstood.  She also thinks there is nothing wrong with a genuine lack of empathy.

Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.

I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.

In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

This idea is supported by other bloggers, explaining that our definitions of empathy are the problem, not the actual lack of empathy.

Now, let’s look at what society defines empathy to be.  Empathy, as many of us imagine it, is the ability to feel bad for someone else.  However, is that really what empathy is?  Let’s examine the true definition of empathy, as reflected in the American Heritage Dictionary:

“Identification with and understanding of another’s situation, feelings, and motives.”

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

This suggests that yes, it is hard to identify with and understand another’s feelings and motives.  In conversations with my husband, I would quickly say that we both struggle with this.  Any one of our arguments can be traced to a misunderstanding of the other’s feelings and motives.  Rather, we all need to work on empathy, and recognizing that it is a struggle for Jake and other autistics will give us more patience when we deal with them.

When I was a kid, I couldn’t really empathize well. Without realizing it, I would say things that hurt people’s feelings (I still do). The aspie doesn’t really “think on the fly” during conversations. There’s a delay and we often don’t pick up on non-verbal or non-obvious cues that we’re hurting someone.

http://life-with-aspergers.blogspot.ca/2007/10/aspie-and-empathy.html

However, this has little or nothing to do with the concern, care, and love that autistics feel towards others.  It may not even be as important as it is often portrayed to be.

That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

Empathy has nothing – NOTHING – to do with love or one’s ability to care.  Think about it. Have you ever loved someone that you just didn’t always understand?  Maybe your autistic child?  Beyond that, did you ever have a “crush” on someone who seemed so outside of your type?  Just because you look at your child and can’t identify how he or she is feeling doesn’t mean you love him or her any less.  Have you ever loved someone unconditionally?  The definition of unconditional love seems to imply that it is outside of one’s ability to understand or do or say anything.  They simply love.

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

Yesterday we took Jake to Wal-Mart to look at the Lego.  Just to look.  It’s a reward for him, something special to do.  While he was there memorizing all of the packaging, another couple and their kids came into the aisle as well.  When it became clear that they were also there to look at the Lego and not just passing through, Jake quickly became uncomfortable.  My husband, who like me is quickly learning, got down at his level and had a quick, quiet conversation.  Jake explained that he ‘didn’t want to cause trouble when we [Jake and his dad] have to leave.’  As in, walking out of the aisle past these other people would disrupt their Lego looking and be uncomfortable.  So they solved the dilemma by agreeing to leave out the far end of the aisle.

This to me screams of both the ability to care and the ability to put oneself in the position of another.  However, it doesn’t actually relate to true empathy according to the definition.  Jake and his dad treated the other people in the store the way that they would have wanted to be treated if they were in the same position.  Treating others the way they want to be treated.  A lovely way to treat people, but not actually understanding what the other people DID want.  They may have been looking for a gift and wanting Jake’s suggestions.  Because no conversation happened, no actual understanding of another’s motivations happened.  No one had any idea of the others’ feelings or situation.  In fact, my husband was the only one in this particular scenario to truly demonstrate empathy, and it was towards Jake.

I think that teaching our kids to be kind, to care, to listen and understand other people is what is important.  Eventually this will translate to sympathy, and when it really matters, empathy.  But all kids and even adults need to work on it.  Knowing that the mental gymnastics required are quicker, more difficult for autistics is something that will help me to be more patient and sympathetic.

What (on God’s green earth) is there to say?

Alright, here we are, summer holidays.  Jake and Aiden are thrilled that school is over and they are facing an endless cycle of cartoons, play time, and trips to the beach.  It is my absolute favorite time of the year.  And yet, we are now four whole days in, and some patterns have already become painfully clear.

One of the hardest things that my husband and I faced last summer was Jake’s constant interruptions.  All of a sudden we were all home together, for the entire summer, and no one, NO ONE but Jake could speak.  We would go for hours, looking at each other, trying to start conversations and giving up.  We talked to him about interrupting.  We tried to model conversations.  We tried to walk into a different room for three minutes to quickly figure out who was grocery shopping and who was cooking dinner.  Nothing worked.  He followed us.  It was so hard.

We were relieved in knowing that we were getting help.  We had started having home visits from an energetic and encouraging family support worker.  While technically out of her usual cliental, she took us on as a favor to Jake’s soon to be kindergarten teacher. She arranged for our first visits with the occupational therapist and we felt so thankful to be getting help that somehow we survived.  But it was so hard.

This summer, my husband has a new iPod that he can text with.  He joked with me that we can just text each other all summer so that we can communicate while in the house with Jake.  As we laughed, we realized that this is an awesome idea.  It doesn’t deal with the actual problem, but it may save our sanity.

Jake has learned so much this year, and the interrupting was listed right away as one of the goals we wanted to make a priority with his behaviour consultant.  So they have been working on recognizing whether someone is ‘available’ for conversation.  It is getting better.  In the last four days, there have been many times when Jake started talking to me and asking for my attention and I responded, “I’m just not available right now, give me five minutes.”  I was busy doing something like cooking on the hot stove or keeping Penny from falling off of her change table, situations not obvious to Jake yet.  He has followed up with, “Mom, are you available now?  Now?  Now?”  So it is a work in progress.

His interruptions are varied, from chants that make no sense whatsoever, but seem musical in nature to demands for attention so that he can discuss the fine points of his newest Lego creations.  He mimics both music we have played and TV he has watched with great joy.  To this he adds his own ideas of what is important, a request for pretzels or to create a new sports playoff bracket.  None of it is bad, or really hard to deal with, the problem is just the constant nature of his verbose interruptions.

In two more days my husband joins us at home full time for summer.  I am hopeful, and praying for a smoother summer for all of us than last year.  Jake has learned much, and is also doing more independent play.  We still have a long way to go on the interrupting, however.  It’s one of the most difficult things about Jake’s autism for our family.  Aiden has started repeating, “I want to talk, I want to talk, I want to talk,” until we get Jake to be quiet enough to hear what Aiden has to say.  It’s cute, and heartbreaking.  I want everyone in this family to be heard, to know that they are valued, and to be able to listen to each other.

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.

High-Functioning Autism

I don’t know how autism works.  How Jake can be so ‘high-functioning’ and someone else’s child can struggle just to talk.  I don’t know how the violence that explodes in our home at times rates compared to other families.  I don’t know how such a wide spectrum of symptoms and behaviours can all be related.  I know that I have told people, hesitantly, that Jake has been diagnosed with autism, and heard them respond, “Well, he is so high-functioning.”  Those words have brought me comfort, relief, and yet, always felt a little strange.

The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.

I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.

https://adiaryofamom.wordpress.com/2011/05/04/a-spectrum-of-words/

I know we are blessed.  And I know that even though we are blessed, that Jake is so verbal, that we are all functioning alright most of the time, he is autistic.  It is real.  He struggles with the society around him.  He struggles with the sensory input he receives.  I can foresee him struggling with writing essays or abstract concepts that are hazy and hard to define.

He is my first and highest priority.  I have to try to advocate for him the best way I can.  He is going to grow up in this world, and meet people who are very much like him, who have no such diagnosis.  He is going to meet people who speak using scripts, repeating familiar phrases that fit the situation.  He is going to meet people who are completely non-verbal.  And somehow he is going to try to fit himself into this situation.

I want to protect him from depression, from despair, from low-self esteem.  That is more important than teaching him his letters, how to ride a bike, anything else at all.  He needs to grow into himself, to know he is valuable, he is whole, in every way that truly matters, he is just like every other human.

It is comforting for me, for my parents, for those who deal with Jake often, to think of him as high-functioning.  However, I am already struggling with this.  There are days where we are not functioning very well at all, moments where I feel like everything slows right down and I am confronted with the reality of autism and the difficulties it presents.  Then, there is the judgment that the label brings, that somehow my child is doing better, will be more successful, than your child with severe autism.  And yet I have such high hopes for him!  I imagine he will meet someone, get married and have a family.  He most certainly will get a job and move out, living independently some day.  Yet, there are many parents who feel like these are impossible dreams for their autistic children.  How are we the same?  Do we need a way to explain where on the autism spectrum our children fall?

 Autism is one word, but there is no one autism.

Alas, for now that one word is all we have. So like it or not, we’re going to have to continue to figure out how to share this ill-fitting umbrella – this one name for all the myriad manifestations of this baffling disorder.

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Some iterations desperately debilitating, some completely incapacitating, some mildly challenging, some no more than delightfully quirky – all with just one name.

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We seek – no we demand! – tolerance, compassion, understanding. But how on God’s green earth can we expect those things from others when we cannot seem to show them to one another?

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We’re in this together. And like it or not, that’s the only way we’re going to be able to move forward, get answers and make this world a better place for our children.

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TOGETHER.

https://adiaryofamom.wordpress.com/2011/08/05/together/

I know as the days get smoother, that we are in a good place right now.  It is easy to forget, when Aiden and Jake spend not just moments but hours playing together, without major incident, that it was not always this way and it will not always be this way.  It is easy to forget, as I go through the ritual of bathtime or bedtime, how many things we have tried, how many tears have fallen, and how hard these now basic routines used to be.  Even school is going so well.  I have to remind myself that before kindergarten started, even with no diagnosis, I spent about two weeks on just preparing Jake for the days that were to come.

Now on top of all that, we have more support, more information, more experts to talk to, more resources and tricks to pull out.  We just received our package of therapy resources.  I could never have imagined how quickly Jake would take to his visual schedule.  That thing is super!  So yes, we are functioning well, right now.

And the thought of school picture day coming up reminds me to prepare Jake.  Knowing he still has not had a successful dental cleaning reminds me of how hard it can be.  When I plan or imagine vacations, how Jake will handle it all is an important consideration in deciding where to go and what to do.  Just having the three kids home for five days on my own while Jake was sick was a very in-my-face reminder of how challenging he can be.  My days with only Penny and Aiden seem so simple by comparison.

Well, I’d say that as with most things, we attack the problem from both sides. We work on changing the language that reinforces the bifurcated [split in two groups] model of autism (not using it is a great way to start) and at the same time we educate the general public on why support and accommodation are vital across (around?) the spectrum. Changing language is a process. It’s not a quick fix…

People who are severely impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.

People who may appear to be more mildly impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.

https://adiaryofamom.wordpress.com/2012/08/06/pretty-pyramids/

The thing is, when we refer to someone as being high-functioning, we are saying that ‘other’ autistics aren’t as good.  That one person’s diagnosis is somehow more valid than another’s.  We are saying that autism is bad, and that thankfully, you don’t seem to be displaying very much of it.  This is why I feel strange and uncomfortable with the term, even when it has brought me comfort to have it applied to my son.  Because autism isn’t bad.  I define autism.  I define it as a neurological condition that brings struggles, requires compassion and support, and has nothing to do with the value of an individual.

I am going to stop using words to break autism’s vast spectrum into segments, I am going to stop using words that assign values where they have no place.