the words are coming

I know it's been a long time since my last post. I am seriously swamped, people. Those of you who do not have children and have even the slightest flicker of a desire to go to Graduate School -- do it. Do it before you have children and have to read scholarly articles on your phone during swim meets. Do it before the only time you have to study is at 9:42 pm on a Saturday.

Anyhow, I wanted to briefly write an update on a few notable developments that we've seen in Elias in the past month and a half or so:

• Saturday (10/10) he said to Caroline who was sitting with him on the couch "Caroline, off." And she got up and he laid his head down where she was sitting. *functional communication
• Yesterday he finished his lunch that I had made for him and was standing on the stool and pointing to the cabinet and said "Pretzel Sandwich." without me prompting him other than saying "What do you want?" Chris had been working with him the day before to get him to say pretzel sandwiches during his snack and he remembered it.
• Last week I gave him a grape popsicle and after I unwrapped it he said "Black." What is notable is not that he said the wrong color; rather it's that he verbally commented on it at all. I'm pretty sure he's been thinking all of these words in his head before, but they have just never come out. The fact that he's commenting on something is fabulous. I corrected him and said "purple" and he said "Purple popsicle." *descriptive communication
• Potty training has significantly regressed in the past few weeks. This is a very frustrating development for me. He was never close to being potty-trained, but we were moving in the right direction. But I read something by an autistic man who said that the idea of "regression" for autistic people is misleading because often autistic brains find it difficult to be working on many things at the same time. So what appears to be "regression" to neurotypicals may just be "not working on that now" in an autistic brain. I think we're going to take a break and pick it up later. I did notice that when he was making potty progress, he wasn't talking very much.
• He is eating CHICKEN nuggets. We have not been able to get this child to ever get him to eat chicken, even when he was just starting solid food. He's also the child who only eats bacon and hot dogs for protein. He will eat peanut butter and sometimes nuts but that's it. So the fact that he's eating chicken nuggets, while not a health food, it means that he's trying new foods and new textures and that's a GOOD thing. *sensory 
• He used to immediately reject any new shoes that we would buy for him. We'd get him the shoes and he'd see them and push them away. One pair of shoes his toe was sticking out of them but we could not get him to try on new ones until we finally put the old shoes away and made him put the new ones on. I just bought him a pair this week and he put them on and started running out into the backyard. *sensory
• Today (10/14) he said to me "Stop pushing me." when I was trying to help him get his shoes on. He often takes his shoes off right by the front door and he was trying to put them on himself. I moved him away from the door so I could help him and that's when he said it. At least that's what I think he said. It was the right context and he nodded when I asked him if that's what he said. *communicating feelings

There's just something different about him. He's more aware, more engaged in general. We've been working on "I want" statements for a long time and it's been like pulling teeth. Now, the "I want" statements are coming much easier and more quickly. I could (and mostly likely will) wax poetic about how much I love his preschool, but I will save that for another post. I am sure you are all sick of me singing their praises but I really am so grateful that Elias is able to go there.I told Chris last night that we were moving forward before, but it was at a very slow rate. He was getting 1 hour and 15 minutes of therapy PER WEEK prior to this fall. And now he's getting about 21 hours per week. It is making a difference.

The First Week of School

It was the first week of all of my children back in school and it was a tie for who was happiest about it: Elias or Mama. I love my kids dearly but they are like me and they thrive in structure. Providing structure for children every day is exhausting. I have so much respect for my friends who homeschool or are teachers!

Caroline & I started back to school the same week, which was the week while we were on vacation in Wisconsin, so her she actually missed her first day of school, but was back to school a full week before the boys. Ben & Elias went back this Tuesday. I had one ambivalent child headed for fourth grade and his little brother who could not wait to get out of the door. I told Elias that he had his first of preschool at 7:00 that morning and he proceeded to put on his winter coat (in humidity-soaked 85 degree weather) over his pajamas and also his sandals and was ready to go. Chris & I both were a little worried that he was thinking that he was going to his old preschool, so I did emphasize "your NEW preschool" but he persisted in making it very clear that he was ready to go.

We were able to get some breakfast into him and clothes on his body (meanwhile, the rest of us were trying to get ready and he was holding the door open and was waiting for us) and we were off "like a herd of turtles" as my mom would say, which was a pretty fair description of the manner in which we were getting out the door that morning. Caroline had gotten picked up already so it was just me and the boys.

We get to Elias's school and he races to the door and tries to get in, though it's locked until the teachers come out to get the kids. Once his teacher opens the door he runs in like he owns the place and rushes into the first room that he sees until I redirect him to his actual room. He takes off his shoes without prompting and puts them in his locker that I point out to him and races into his room and immediately starts jumping one of the many crash pads that they have set up in every room. He's laughing and having a great time. I try to let him know that I'm leaving and will see him after school. He is wholly unconcerned with my goings-on, so I give him a kiss and leave him there. When I pick him up that day, his teacher said he had an "awesome" day and indeed, his face is bright with joy. Wednesday was similar, though Chris took both boys on the train to school -- Chris said similarly he was trying to get into the building before it was time. I attribute his comfort to the fact that he had been there twice in the past few weeks, once for an eval and once to meet his teacher and see the space and there's such fun things for him there that he couldn't wait to start! After school today, his teacher (who is the DT) said that he had a great day and that she was holding an Angry Birds stuffed animal during gym and he said to her, UNPROMPTED, "Give me the bird." -- which, if you know Elias is jaw-dropping since he doesn't often put two words together non-echolalically.

If I had any apprehensions about how he'd make the transition to a new school / new teachers / new classmates, I have them no longer!

Therapy: Speech, Occupational, and Otherwise

As I have mentioned before, Elias has been involved in developmental, speech, and occupational therapy for the last two years. He was in Early Intervention (EI) and did speech and developmental therapy (DT) for six months before he aged out at 3 years old. We then took him to a private speech therapist in September 2014 and also an occupational therapist beginning January 2015. We have wrapped up with both of those therapists in the past few weeks as we prepare to transition to his new school where they have all of those therapists (DT, speech, and OT) on site. I am excited for this transition for three reasons: (1) it will be a great change to have all of his therapies in one place from a logistical standpoint; (2) the therapists can and will talk to each other about him and in some cases co-treat but at a minimum opening lines of communication up about him; (3) the type of therapy that they will be doing at his new preschool is different than what he had through the private therapy that we have had him in.

The traditional model of therapy (at least what we have observed and participated in) has been the following (with variations, but this is an example of what we have done in speech):

1. Elias sits down in a small chair at a small table.
2. Therapist brings out a toy (all of the other toys / books are behind her), most often a "preferred" toy to get him warmed up
3. Therapist engages Elias in playing with the toy and encouraging him to use words to request things and labels actions that he does while he is playing
4. Therapist decides when the time with that particular toy is up and asks Elias to help her put it away
5. Therapist brings out another toy, this time a non-preferred toy, like a book or a series of cards with pictures of other children doing things like eating, drinking, or jumping and she will ask Elias where "jumping" is. Elias will point to it (or she will help him, depending on his mood) and she will scramble the pictures and ask where "eating" is, etc.
6. Therapist will bring out another toy, most often a preferred toy. Repeat from step #2.

At any point during this 30 minute session, Elias will get up and get a drink of water from his water bottle, or walk around the room, or try to climb in my lap, particularly during the "non-preferred" action times while we try to coax him back into the chair. It has been a somewhat frustrating process for all of us, though it has helped him and we have seen progress. And some variation of this occurs at OT as well, though there's more movement by virtue of what OT is.

The model that we're moving to by going to this new school is the DIR / Floortime model. DIR stands for Developmental Individual differences Relationship-Based. The premise is to build relationships with the child through Floortime, or play and so it sometimes is called a play-based therapy. It differs from the traditional model that I have just outlined in that they follow the child's interests and interact with them where they are rather than having a preset agenda for each session (though I'm sure that there is an agenda as we will be defining goals for him, but maybe not a micromanaged agenda for each session? I will be curious to find out).

As I've often lamented, the idea of therapy and making decisions about therapies for Elias kind of scares me - mostly that I will make a mistake and put him in a therapy that isn't good for him, Imagine my relief when my favorite autistic vlogger (video blogger) Amethyst at Neurowonderful talked about what kinds of therapies she recommends as an autistic adult and Floortime or other play-based therapies were mentioned! That video is here.

My hope for Elias is that he'll get more out of each session instead of having to be continually coaxed back into a chair or into engaging in a non-preferred activity. He certainly does need to learn how to engage in non-preferred activities, as we all do, but I think that getting more language out of him first may be the optimal way to engage with him when he has to do something he is not as interested in. I have had the same feeling that both his former speech and occupational therapists have expressed: it seems like they have reached a ceiling with him at this point in his development and that he will experience another season of growth by switching to this environment where he will be saturated in a sensory-rich environment with the kind of one-on-one attention in which autistic children often flourish. 

What We Learned on Summer Vacation

It's hard to believe that summer is just about over. To me, summer is a microcosm of parenthood in its entirety: each day can feel like a month, but then September comes and you wonder how it went so fast. With my oldest approaching his 10th birthday, I have a lot of moments when I wonder "Wait, wasn't he just 3 a few years ago?"

That said, there are a lot of things that we have all learned this summer, including, but not limited to the following:

Benjamin

• I thought he was "into" baseball last summer, which, compared to this summer, meant that he was simply cognizant that baseball was played with a ball and a bat. This child has found his niche, his raison d'etre in baseball. If he's not playing it, he wants to be watching it. If he's not watching it, he wants to be analyzing stats on mlb.com.  If he's not analyzing stats, he's reading books about baseball history. That said, I'm really glad that he's found something that piques his interest so much, and something that he and I can have in common.
  
• In that same vein, he is learning what it means to follow a team (the Detroit Tigers) even when that team is imploding and the value of being a true fan and not the fair-weather variety. This is a painful lesson to learn and I'm wary of subjecting my son to potentially years of baseball misery. [picture is from Comerica Park July 2015 when they were barely in contention and there was still an inkling of hope]
  
• I had to gently crack his dream that it was unlikely that he is going to make millions of dollars playing in the MLB. I told him that he should focus on a college scholarship first and then we'll talk about the major leagues.
• Lastly (these are all sports-related, don't judge me), he got his first taste of SportsCenter while we were on vacation. We don't have cable at home and he loved watching it in the mornings.

Caroline

• Caroline overcame some fears this summer. First, she got her ears pierced, something she was hesitant to do for awhile until one day she decided she was ready and we had a girl's morning and had brunch and got our ears pierced (mine had closed up, so I got them re-pierced). 
• Second, both Ben & Caroline were on the same baseball team this summer. The league they play in is 7-9 year olds and half of the game is coach pitch and the other half is kid pitch. Chris and I were both unsure how she was going to do, partly because she was the only girl and because she was terrified that she was going to get hit during kid pitch. And those fears were realized one game: she did get hit. But she stuck in there and ended up getting a hit! And as far as being the only girl on the team and one of the youngest, it didn't matter because she played at least a few innings at second base every game. I think she surprised herself with what she could do. [this picture is from practice: they do wear helmets during the games and most practices]
  

Elias

• Elias can swim!! He has always loved the water, but we have kept him in a life jacket because even as a toddler he would walk in over his head. He loves that sensation of being weightless and not being able to touch the bottom. Chris took his life jacket off a few weeks ago and he was doggy paddling, but he was able to make it to me! He was so proud of himself. While we were on vacation, he swam to Chris and then said "I did it!" [Have I ever mentioned how much I love this boy? Because it's loads.] For the record, this is earlier than either of his siblings started to swim.
• He can also ride his balance bike like it's his job. We're going to skip the training wheels like we had for the other two and go straight to a two-wheeler next summer. I'm pretty sure he'll be able to do it. And if he can, this will be a full year before either of his siblings rode a two-wheeler.
  
• Elias made major sensory strides this summer. Memorial Day weekend was a difficult weekend with us in Cincinnati [in a different environment], surrounded by lots of family [lots of sensory stimulation] and it was warm [as Cincinnati tends to be]. I tried to put shorts on Elias and he melted down on me because he wanted to wear pants, something I attribute to a sensory issue. Sandals were unthinkable. He wanted pants and socks on at all times. Now, he is comfortable in just about anything I put on him, which is such a relief. [see? tank top, shorts, AND sandals!]
  

Kindra

• I really disliked taking a summer class. Even though it wasn't difficult and I did well in it, it was obnoxious to have to do homework while the rest of my family went to the beach. I will not take a summer class next year unless it's an intensive on campus and I can crank it out in a week. However, in spite of not liking taking the class, I did learn HTML5 and CSS, so it wasn't a total loss.
• Expect to have to formulate a comparative analysis about the similarities and differences between ISIS and the Nazis if I ever have a notion to watch The Sound of Music with Ben (even just the special feature "Songs-Only" on the DVD!).
• I need to have a schedule mapped out for my older kids daily, down to the quarter-hour to keep them from crumbling from boredom / malaise. 
  
• The most important lesson I learned this summer is that I should NEVER ever underestimate my children, that I should always believe in their potential and make sure they know that. Maybe I should rethink my discouragement of Ben's desire to play in the MLB :)

Blown Away

We went to the Open House this week. As I was sitting there listening first to the presentation and then meeting his therapist/teacher and the other therapists with whom Elias will be working, I thought to myself "How in the world does a place like this exist and how did we get a spot here?"

Elias's classroom is going to have six children in it with four adults at a minimum there to support. There can be pull-outs (taking children out to work on them one-on-one) as well as push-ins which would be a speech, behavior, or OT therapist coming into the room to work with a child in the classroom setting. While the world may not be set up for autistic people, this school definitely is and has spared no detail or thought into what our kids may need. They also have a staff member who is specifically dedicated to transitional services, that is, helping find the best place for each child after they leave LEEP Forward. She will do the legwork and research and come on school tours with us to find the best place for him.

The only possible glitch is that the switch in our insurance is so new that the insurance company could not confirm yet whether or not they will cover Developmental Therapy services since our policy hadn't been fully loaded into the system. All of the classes are led by Developmental Therapists and will be billed as DT sessions to insurance, which is the only way we're able to afford this school. We could still do individual Speech/OT/Behavior/DT therapy through LEEP Forward, but I think the benefit will come through the preschool and having that support to help Elias learn and grow in a school setting. I'm going to choose to trust that DT services WILL be covered and not worry about it until we have to. And if they aren't, I'm going to fight like a mama bear to get it covered.

So, we have a bunch of evaluations and scheduling meetings coming up in the next few weeks. Thank goodness we have a vacation scheduled in the midst of all of it. I think we will all be thankful to have that break. Elias has yet to have an evaluation where he's truly shown who he is and what he can do; we'll see how he does here. His developmental pediatrician saw him six weeks after she diagnosed him and said "He seems a lot different today" -- he was comfortable in the room and had just seen her not too long ago. The stakes were also a lot lower. I believe that he knows that he's being evaluated on his deficiencies and doesn't like it. Who would?

And so we march on with hope and expectation...

On the Cusp

After what seems like an interminable wait (which, in reality, has been 2 months), we are about to set our course toward Elias's new therapeutic preschool, LEEP Forward. We have an Open House this week where we'll get to meet the staff, tour the facility, ask questions, etc. We have already been contacted by the Behavior/Education Specialist and have plans to meet with her to figure out scheduling and potentially begin services before school begins. We'll also meet with the speech and OT to schedule in-home evals. It's all going to start ramping up quickly.

I have been in various states of frustration since his diagnosis, ranging from being overwhelmed to impatient to start services. Currently, I'm feeling slightly terrified, mostly because I feel that we're doubling down here, all of our chips are on the table and the roulette wheel is spinning. If this is not going to work, then where do we go? This, of course, is the absolute wrong way to see this on pretty much every level. But the temptation to feel that way is there.

Then I step back and see the big picture. First, how quickly we found this preschool. Second, how they only direct bill to a Blue Cross Blue Shield PPO, an insurance plan that we have the option to switch to on August 1st, just in time for school to start. Third, how this school is 4 blocks from Ben's school (and therefore 10 minutes from our house) and not in Lincoln Park or Lakeview, which would cost so much more in terms of time and transportation. Fourth, how all of his therapies will be in one place instead of me running to Oakbrook Terrace, UIC, and Illinois Masonic for therapy weekly. God has provided a way for us, and most importantly for Elias. I'm waiting with anticipation (and a little trepidation) to see what happens and trusting His provision.

For I, the Lord your God,    hold your right hand; it is I who say to you, “Fear not,   I am the one who helps you.”- Isaiah 41:13

Controversy #5: "autistic" vs. "has autism"

One of the first things I read after Elias was diagnosed was a quote by Ellen Notbohm that read something like "your child is more than his/her autism, do not define them by this one characteristic. You wouldn't call a child with cancer "cancerous," why call your child autistic?" This made sense to me, particularly since I was in the very nascent stages of trying to understand the diagnosis and thinking about calling Elias "autistic" was enough to have me swimming in a pool of tears. "Autistic" seemed like I was shackling him with this diagnosis; "has autism" seemed more like something that could eventually be discarded or cured. Of course, there is no proven cure for autism, though a small minority of children eventually shed their diagnosis.

It seems that my struggle with calling Elias autistic is typical of the dichotomy between parents of autistic children and autistic adults. Autistic adults routinely prefer to be referred to as autistic, whereas parents of autistic children want their children to be referred to as "my son Johnny who has autism." The Autistic Self-Advocacy Network (ASAN) has an informative post about what they call "Identity-First Language" as opposed to "Person-First Language." From the post:

 In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity (emphasis mine) — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.

Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as “people with cancer” or “people who have cancer,” as opposed to “cancerous people,” the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

While it was difficult when he was first diagnosed to refer to him as "autistic," as time passes and I reflect on it further, it is getting easier to say that "my son is autistic." However, I don't like labeling him or anyone else, though I understand that there is sometimes a need to do so. I will be happy when he is able to tell me how he would like to refer to himself and I will be happy to use that term. But until that blessed day, I'm going to refer to him as "autistic" as little as possible -- not because of the word but because I don't want his neurology to be the first and maybe only way that people see him.

Family Pictures

Family pictures + me = frenemies. I love seeing other people's pictures and I love the idea of us getting them done. But in practice, they stress me out more than graduate school. For me, 90% of the tension is picking out everyone's outfits. I am terrible at picking a palate, coordinating colors, and then shopping for appropriate clothes that are within our budget. I am fully aware of my ineptitude and then to think about having it immortalized in photographs for which I'm paying a decent amount of money is paralyzing to me.

Thank goodness for Pinterest that has pins like this to help the color-challenged such as myself. And I can sit in the comfort of my own home and order pieces online and not be overwhelmed with multitude of choices in a store. The downside of course is not being able to see everything together before you buy, which in our case necessitated a trip to the mall to return some things and find a shirt for Ben and then a trip to Target to find white shoes for Caroline the day of the shoot (yay for $8 clearance shoes!). 

The other 10% of the stress comes the day of the shoot. Roxanne at Hawa Images is a friend from our old church and it was great to reconnect with her. She immediately made the kids feel at ease and was a pleasure to work with. However, I knew that it was not going to be easy for Elias to "cooperate" and it was going to be quite a bit of work to get a good picture of him individually and maybe impossible to get a shot of us all looking at the camera at the same time and smiling. I tried to let go of my agenda and be realistic about it, but I'd be lying if I said I wasn't hoping to get at least one good shot of us as a family all looking at the camera. But honestly, this is our family. We are not ever color-coordinated, my two oldest fight like North and South Korea on the DMZ (which is to say, constantly prodding and provoking each other), and Elias is who he is in all of his wonderfulness, which doesn't include sitting nicely and looking at a camera with a picture-perfect smile (though he will say "Cheese" when a camera is pointed at him, just not necessarily looking at the camera). We are messy and imperfect, but we love each other and we are a family. And that's what I want the images to reflect, which I think Roxanne did beautifully.

Here are some of my favorites:

I wanted pictures of the three kids individually. 

And I wanted pictures of the three of them together:

Ben asks upon seeing this picture, "Why did she take a picture of our butts?"

And I wanted pictures of all of us together, even if we weren't all looking at the camera.

This is way more what we're really like:

I love this one:

And I wanted a decent one of me and Chris, since we haven't had a good picture together since our wedding day:

And I wanted a few candids of the kids:

I love this one of Caroline. Pure joy.

My boys.

Controversy #4: Theory of the Mind

As I've been researching and ingesting information about autism, there is only one listed autism "characteristic" that really frustrates me. I am okay with stimming, with speech delay, with echolalia, with sensory processing issues, with developmental delays. I know that's part of the deal and it is what it is. However, when I read about the Theory of the Mind, I get upset mostly because I think that the premise on which it is based is faulty and misleading.

What is Theory of the Mind (ToM)?

Theory of Mind can be summed up as a person’s inability to understand and identify the thoughts, feelings and intentions of others. Individuals with Asperger Syndrome/HFA can encounter have difficulty recognizing and processing the feelings of others, which is sometimes referred to as “mind-blindness”. As a result of this mind-blindness, people with AS may not realize if another person’s behaviors are intentional or unintentional.

From  Executive Functioning and Theory of Mind, Autism Speaks

ToM in autistic children was based on the Sally-Anne test, which was a 1985 test which was set up as follows: Sally has a marble. She puts it in her basket. Sally leaves. The child then witnesses Anne come and take Sally's marble out of her basket and put it in her own box. Children are then asked the Belief Question "Where will Sally look for her marble?" Per the Wikipedia link above, "23 of the 27 clinically unimpaired children (85%) and 12 of the 14 Down's syndrome children (86%) answered the Belief Question correctly. However, only four of the 20 autistic children (20%) answered correctly. (emphasis mine) Overall, children under the age of four, along with most autistic children (of older ages), answered the Belief Question with "Anne's box", seemingly unaware that Sally does not know her marble has been moved."

A few things about this study: (1) it was done in 1985. There have been like 18 DSM's in the 30 intervening years (not really -- we're on DSM-V and they were on DSM-III in 1985). The point is, ASD is diagnosed differently now with a significantly wider umbrella, so the population that they chose were different than today's would be. (2) One of the hallmarks of ASD is language processing disorders. So it follows that no one should be surprised when an autistic child has problems understanding the question that is being asked or how to answer it. (3) Autistic people tend to be concrete thinkers, which when coupled with a language processing disorder can lead to not understanding the question being asked because they know that the marble is in Anne's box. (4) They are basing this theory on how an autistic child's brain works, not an adult's. (5)  To extrapolate their failure to answer this one question "correctly" to them being unable to identify the "thoughts, feelings, and intentions of others" is a stretch in my view.

So, there are a few ways to think about this. One, we can take it at face value and say that autistic people can't understand that other people have thoughts and feelings and ostracize them even further. Or we can say that autistic people have a more difficult time understanding other people; it takes them longer to interpret thoughts and feelings and may need to be taught how.

I see it more as a developmental delay. I'm interested to know if an autistic adult would answer the Belief Question correctly. All children need to be taught empathy: how many times do you tell your NT child to "be gentle" when petting a dog or a cat? Don't you take your child when they hurt another child and explain to them what they did and how that made the other person feel? Their language deficits and the fact that they are concrete thinkers can create a barrier to ASD people expressing empathy but that does not mean that they are incapable of it. I also see a need to help autistic people to understand motivating behaviors. Since they have difficulty in reading a person and their behaviors, it makes them easy targets for bullies and scammers.

In my last post, I specifically debunked this idea that Elias, because he is autistic, does not intuit or understand other's feelings. The reason that he reacted the way he did to me talking about autism is because he saw me upset about it months ago after he was first diagnosed. He specifically correlated talking about autism with anxiety and sadness. Of course I feel massively guilty about this, so I'm in damage-control mode right now. The point is that he gets it. He may not understand every emotion, but he is not unaware of, nor indifferent to, them.

Controversy #3: Inclusion

The third controversy that I'm going to reference is not unique to autism; it cuts across disability lines. And it's not even a true controversy, it's more of a difference in the way that you want to educate your child. There isn't a right or wrong answer to this one since it truly is dependent on each child, but it's something that I have in the back of my head to deal with later, though we have actually already made a decision about this for Elias for the immediate future.

I can't talk about "inclusion" without talking about an IEP. I can't talk about an IEP without talking about the Least Restrictive Environment, or LRE. And we can't talk about LRE without talking about the Individuals with Disabilities Education Act, or IDEA. (Can you see how information overload is an actual condition??) So I'll break these terms down, in as far as I understand them. I am absolutely dreading getting Elias an IEP and dealing with Chicago Public Schools, but here goes...

IDEA: The Individuals with Disabilities Education Act was signed into law in 1990 by George HW Bush. Its purpose is to make provisions for children with disabilities. Up until this point, public schools were not required to include disabled children and effectively shut them out of their right to an education. There are six pillars of IDEA:

1. Individualized Education Program (IEP): each child is evaluated and the school is required to design a program tailored for their educational needs. This becomes the cornerstone of the child's education and is revamped regularly by a team comprised of parents, teachers, and social workers or psychologists, and administrators based on the child's needs, development, and growth.
2. Free Appropriate Public Education: basically that we won't have to pay more for special education services and that they will provide access to grade-level work if your child is able to work at that level.
3. Least Restrictive Environment (LRE): this is incorporating disabled children to be in the same classroom as non-disabled children if possible. As my friend Erin points out, the law says that the school needs to provide the Least Restrictive Environment; it doesn't say anything about them providing an optimal learning environment or helping them succeed.
4. Appropriate Evaluation: children with disabilities will be appropriately evaluated by someone in the school district to determine what kinds of additional assistance will be needed.
5. Parent and Teacher Participation: parents and teachers are integral parts of this process and will work together to provide input and determine placement and other goals. Parents can also challenge any decisions made on their child's behalf. 
6. Procedural Safeguards: these are written into the law to give parents additional protections over their children's education and recourse in the event that something was not done properly. You can read the list here.

So the IDEA act is truly a landmark piece of legislation for which I'm thankful. However, it's also good to think about what this looks like in the classroom for children with disabilities. 

For Elias, in a private preschool classroom [read: without the specialized supports he would get in a public preschool] with other neurotypical (NT) children (there were about 18-20 students to 2 teachers and a rotating cadre of volunteers, normally 1-3 additional adults) it looked like him sitting quietly and participating in many if not most of the activities, but not all of them. It looked like him not going to the bathroom while the other children did. It looked like him wandering around the room either physically or mentally from time to time while the kids were participating in an education lesson during circle time. I looked like the other children asking me a few times "Why doesn't Elias talk?" To be sure, he has made amazing strides at this preschool, more than I ever hoped he'd make. As I've mentioned before, we love this preschool and we love the staff and I'm loathe to leave it.

However, we are currently taking the non-inclusive route, that is, putting him in a therapeutic school specifically for children with intellectual special needs (though I have heard that there are wealthy parents who put their NT kids in this preschool and pay for it out-of-pocket). Eventually, I want Elias to be included in a regular classroom. I want him to interact in healthy ways with his peers. I want him to learn at grade level. But I don't want inclusion that just LOOKS like inclusion because he's in the same class with NTs even though he's doing completely different work and segregated socially from them due to his challenges with peer interaction. We could keep him where he's at currently and I'm confident he'd make progress both because he's a smart kid but also because of the caring staff. But I am just as convinced that his progress will be significant if we place him in an environment that is dedicating to helping and educating autistic children.

I think inclusion is healthy and necessary for both children with disabilities as well as NTs. It has the potential to teach NTs valuable lessons about diversity, empathy, and helping to make people with disabilities normative, instead of people to be feared or shied away from. Conversely, there are learning opportunities to be had for children with disabilities in classrooms where they are presumed competent, learning at grade level, and can learn social interactions from NT kids. However, it seems to me that inclusion needs to be done properly and when the child is ready for it. I'm anxious to hear from my friends and family who are teachers/school psychologists/social workers. How have you seen inclusion done well or poorly in your schools?

Controversy #2: Applied Behavioral Analysis (ABA)

One of the most controversial topics in the autism community is around the therapy called Applied Behavioral Analysis, or ABA. ABA is the "standard of care for autism treatment," per Autism Speaks, which, based on my last post, is to be looked at with a skeptical eye. Indeed, ABA (or behavior) therapy has long been touted as the most effective treatment for autism based on its results. However, the way that these results are obtained is where the controversy begins.

What is ABA?
From what I've been able to gather, Applied Behavioral Analysis is twofold: first, it's skills-acquisition for autistic children. It teaches them to do everyday things (such as teeth brushing, getting dressed, etc.) by distilling activities into micro-steps. Second, it's the eradication of socially-undesirable behaviors, such as not making eye contact, hand flapping, rocking and other stimming behaviors, as well more troubling behavior such as aggression or self-injury. The eradication of said behaviors comes through a reward/punishment system, though my understanding that the punishments (sometimes called aversives) are no longer widely used.

What's the problem?
To a non-autistic person, these things seem like really positive things -- why wouldn't an autistic child (or any child for that matter) want to acquire skills? Or be appear more socially acceptable? In fact, we do this with neurotypical children all of the time -- we teach them to integrate into society using society's rules of what is acceptable, which would be saying hi when someone says hi to them, not picking their nose in public, etc. The conflict comes when doing things like forcing an autistic child to make eye contact can actually be damaging due to the sensory input issues that many autistic people have. Forcing eye contact when it is uncomfortable and punishing a child when they don't is a very dangerous thing to do. Ask an Autistic feels very strongly about this.

The controversy around ABA sometimes feels like it comes down to parents of autistic children vs. autistic adults who went through ABA. This post by an autistic woman was very eye opening for me. From the post:

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

Many parents, myself included, will see what we consider to be progress, which actually means that our children look more "normal" since having a child whom you feel the need to explain to other people can be exhausting. We will be thrilled and chafe at any suggestion that we are harming our child. However, autistic adults, having undergone methods of ABA that include phrases such as "quiet hands" and being physically punished for not making eye contact, are understandably wary of subjecting the next generation of autistic children to what they endured. This is also a great piece on ABA from Jess at A Diary of a Mom.

But making your child look more normal will allow them to integrate into society more easily, right?
Yes, it will. But we also have to consider the costs of this integration. There are reports from autistic adults that ABA has caused depression and even PTSD, due both to their methods (holding flapping hands down in glue, for example) and also because the message that we're sending to kids when we tell them that they need to stop doing things that help them to cope and that feel natural to them, we are telling them that something is wrong with them and that they need to change. Constantly being told that autism is "bad" and needs to be "cured" can certainly create hopelessness and depression.

But ABA has probably changed and evolved since these autistic adults experienced it, right?
What I have been reading has indicated that there are fewer aversives (punishments) meted out for forcing behavior in favor of using incentives to encourage it, though aversives are still recommended for certain behaviors. The older style ABA also worked with children for 30-40 hours per week. That is a lot to put a 3, 4, 5 year old through (thinking about that much therapy as an adult would be a lot as well). Currently, there are many different types of ABA being practiced and it's important to know which type your therapist is using.

Are you going to put Elias in ABA or behavior therapy?
I'm currently in this space where I'm frustrated because we're waiting for his therapeutic preschool to start in the fall, but I'm also terrified of subjecting him to things that are damaging and it sometimes feels like there are so many choices to be made. We are currently going through parent training (thanks to all who have been watching our kids so that we can both attend!) in order to get him into behavior therapy, though we signed up before we knew that there would be an option at his new preschool for it. I had a conversation with a behavioral therapist there who likened what they do to skill acquisition for children who do not have problematic behaviors.

So in other words, Yes, I want him to learn skills! I want him to acquire the tools that ABA has to give him to communicate and to learn more independence (though he really is our most independent child). However, he does NOT need his behavior changed. As I've said before, he is a sweet, compliant, wonderful child and I don't want him to ever think that he's not good enough or that something is wrong with him. When he begins his new preschool, we will have a discussion with them to make it clear that Elias is not aggressive, does not meltdown, nor is he self-injurious. He does need skill acquisition in the realm of using the bathroom, brushing his teeth, and initiation (not to mention talking, but I'm not clear on where the intersection of ABA and speech therapy lies), but we are not interested in making him "look normal" for its own sake. I have also said before that he doesn't stim, but the more I think about it, I realize that when he's happy he runs back and forth in our house, laughs, squeals, and is basically the vision of pure joy and delight. And I would never want to take that away from either him or from our family.

Controversy #1: Supporting Autism Speaks

Autism Speaks is the self-appointed figurehead for autism, similar to what Susan G. Komen Foundation is to breast cancer. Even if you haven't been personally touched by autism, you have probably heard of "Light It Up Blue" which is is Autism Speak's campaign for World Autism Awareness Day on April 2nd. And similar to the Komen Foundation, there is controversy. The Autistic Self-Advocacy Network (ASAN) is an organization comprised of autistic adults whose slogan is "Nothing About Us Without Us." They wrote an impassioned open letter to the supporters of Autism Speaks laying out their concerns. They describe Autism Speaks's deficiencies much better than I can, though I will highlight four of the main concerns:

1. Semantics matter. From their "About" page: "Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism  and their families." (emphasis mine) I could understand the phrase I italicized above if "cancer" was the condition listed instead of autism. Unlike cancer, autism cannot be excised from a person, nor do many consider it to be a disorder that needs to be "cured" since it's not fatal. Using this type of vocabulary further stigmatizes those with autism spectrum disorder (ASD).
2. Eugenics. Autism Speaks is funding research to determine whether an unborn baby has ASD. With their disease-esque rhetoric, it's not a leap to postulate that there will be a test available in the not-too-far future, taken during pregnancy, to determine whether or not a baby is inclined to have autism. Given that in the United States 67% of Down's Syndrome babies are aborted after a positive amniocentesis or CVS, it's not a reach to think that something similar will happen with ASD babies given the opportunity. While it's good to try to understand the disorder better and get interventions as quickly as possible, we should consider the ramifications of some of the research they are funding.
3. Lack of autistic adults in leadership. There are no autistic adults in senior leadership at Autism Speaks. They claim to be advocating for individuals with autism, yet they have no autistic individuals helping to form policy or give perspective and input at their highest level? The ASAN that I mentioned above was formed because Autism Speaks was not speaking on behalf of autistic adults. 
4. Finances. Of an almost $100 million budget, only $4.6 M goes to families with autistic children in the form of "Family service grants and awards" which is 1/3 of the budget allotted for scientific grants. 50%, goes towards advertising, at least some of which I'm assuming is for "awareness." 

One of the comments on this article "Speaking Out Against Autism Speaks, Even if It Means No Ice Cream" was interesting to both me and Chris. 

Seth Bittker

 Connecticut 1 hour ago

Any reasonable analysis of the medical literature on autism shows that those who are diagnosed with autism typically have unusual biochemistry. These biochemical abnormalities include: sulfation deficits, high oxidative stress, vascular damage, elevations in auto immune markers, dysbiosis, elevations in monoamine neurotransmitters. This biochemical gestalt is not healthy. As a result most with autism suffer with health consequences of these issue that go beyond the purely neurological effects and a large subset experience physical pain from these effects.

While a cure for autism is unrealistic, it would seem any organization which funds research in an attempt to understand and ameliorate aspects of this dysfunctional biochemistry is worthy of support. While I do not agree with some aspects of what Autism Speaks does, they do fund some research on autism biochemistry and for this I support them. I hope that concerns over neurodiversity do not make it more difficult to raise funds for research in these area which can lead to improvement in people's lives.

Now, I don't really know what he's talking about with regards to the biological conditions, but if this is true, I do see benefit in researching and ameliorating these sorts of physical conditions. But I reject the notion that our goal is to eradicate autism from Elias's brain and that the optimum outcome is that he is "cured." If that's the case, the majority of families will be striving for something that only a few people obtain: a reversal of the diagnosis.

There is a deeply interesting (and very long) article from the New York Times last year entitled "The Kids Who Beat Autism." It intersperses the stories of current teenagers who were diagnosed with autism as children and now have been declared no longer autistic by their diagnosing physicians with research studies that seem to indicate that a small percentage of children diagnosed with autism seem to shed their symptoms in spite of being placed on the low-functioning end of the spectrum at diagnosis. These children tend to have higher nonverbal IQ's and earlier and more intensive interventions, though that is not true of all of the children. Unsurprisingly, higher incomes and increased parental involvement were also positive factors. However, this population is only a fraction of the children diagnosed.

If you were to ask me if I would want Elias cured of autism, I honestly don't know how I would answer it. In one sense, yes, I would want to spare my baby the difficulties and frustrations that autism will bring him. But, and this is a large BUT, if it were to change his personality, behavior, the way in which he sees the world in any way, I would say no. Autism is a pervasive disorder that touches every aspect of who he is. Chris's response when I asked him a variation on this question was "I think you want him to reach his potential, as you want for the other two kids." And that's it. I want Elias to reach his potential and to follow God's plan for his life, regardless of his diagnosis. I'm far less concerned about curing him than I am about giving him opportunities to maximize his gifts and abilities.

In short, while I support scientific research into ASD, I more strongly support initiatives that help people on the spectrum to live independent and fulfilling lives. I'm not sure that those priorities are in line with Autism Speaks given how they spend their money, as well as their rhetoric and propensity for hyperbole and fear-mongering. Of course, I'm speaking from the perspective of a parent whose son is verbal and progressing. I may feel differently if he was non-verbal, self-injurious, and aggressive. However, even if my son were more low-functioning, I would hope that an organization that claimed to speak for him would also be compassionate and use adjectives that encourage and not dehumanize him.

philosophy

• the study of the fundamental nature of knowledge, reality, and existence, especially when considered as an academic discipline.

a particular system of philosophical thought.

plural noun: philosophies

"Schopenhauer’s philosophy"

• the study of the theoretical basis of a particular branch of knowledge or experience.

"the philosophy of science"

synonyms: thinking, thought, reasoning

"the philosophy of Aristotle"

• a theory or attitude held by a person or organization that acts as a guiding principle for behavior.

"don't expect anything and you won't be disappointed, that's my philosophy"

Over the past month, I have been feverishly researching, thinking, reading, and talking about autism. I've clicked on almost every link that I've seen come through my Facebook feed, media outlets, and friend's pages about autism. My wonderful physician sister-in-law has been sending me the most up-to-date medical information on autism and another wonderful sister-in-law who is a social worker has been giving me encouragement and help with understanding what a social worker's role is for families affected by autism. I've started following this blog by a mother with an 11-year old autistic daughter who advocates like nobody's business on behalf of her child and has a refreshing and insightful view on autism and the human family. I've also started following this video blog by an autistic woman who is quite remarkable in both poise and perspective. 

I am so grateful to have so much of the world's information at my fingertips and in the comfort of my own home. However, it's led to the very real concept in Library Science of information overload. When I first came across this term last summer during my intensive class, I laughed to myself. Surely this isn't a real thing? True, we have all of this access, but do people truly "suffer" from it? This was coupled with a term called information obesity, which is the idea that we live in an information society where information is so easily available and so we feast. 

Well, I am currently the embodiment of both of those concepts. I have been consuming information at a rate faster than I can digest it, which has led me to become overwhelmed and overloaded. To put it bluntly, I've been trying to cram as much information into my brain as possible, and in so doing I will be able to figure out what I'm supposed to be doing, what the best treatments are for Elias, and how I should approach autism. I felt the effects of this strategy this weekend when I was sluggish, sad, and overwhelmed. 

In talking to a friend at church on Sunday, she said that it sounded like I was trying to work out what my philosophy is on autism. Because it is such a wide and varied disorder, there is a multitude of conflicting viewpoints. The truth is that I don't really know how I feel about autism, though I feel my attitudes crystallizing the more I read. And I don't truly know where Elias is on the spectrum either. I suspect that we won't know for a few more years (or many more years?) as he grows and changes. My guess is that his movement on the spectrum is going to be much more fluid than most neurotypical children as he figures things out at his own pace. Over the next few posts I will lay out a few of the larger controversies that I have come across and attempt to parse them out. In the meantime, I will attempt to make my information intake more in proportion to my digestion rate.

Jehovah-Jireh

When Elias was initially diagnosed, the developmental pediatrician was giving us some initial recommendations, including getting him into an autism program, reading the 100 Day Kit from Autism Speaks (an organization that, as I'm learning more about it, I am hesitant to support for reasons that I will get into in a later post), and also moving him into a special needs preschool. Though I was in a teary haze, my reaction when she mentioned enrolling him in a different preschool was "No." We told her that we were happy with his current preschool, that his teachers really cared about him and most of the kids were welcoming and friendly. And it's true, he's thrived there and exceeded my expectations as far as integrating into the environment, participation, and overcoming some sensory avoidance issues (for example, he would not touch Play-Doh before he went to school and now he enjoys it). Her response was essentially that if we felt that was the best place for him that it would be okay to keep him there and do external therapy, which is what we are currently doing.

In the week following, I mentioned to a grad school classmate/friend that my son was diagnosed with autism as his child also has a disability and wondered if there were resources to which he could point me. He gave the contact information of one of his neighbors whose son also has autism. We had lunch and she told me about a therapeutic preschool that was nearby. The school is about 4 blocks from Ben's school so I went to check it out. I made a consultation appointment with the Executive Director for the following week.

From the website, it looked promising but I didn't want to get my hopes up too high, besides, I wasn't even sure that we wanted to leave his preschool yet. Fast forward to the consultation: Chris and Elias came with me, which apparently caught the Executive Director off guard. Almost the very first thing she said to me was "Oh, I didn't realize Elias was going to be here. Are you comfortable talking about him in front of him?" She presumed competence off of the bat. That was my first good sign.

As she dove into the details the program, we became more deeply impressed. First, small class sizes: there is a 2:1 ratio of student to therapist. Second, every preschool class (there are 4 per session, 2 sessions per day) is divided according to the student's individual profile -- each child is comprehensively evaluated before the program begins, taking their sensory and speech needs into account. They are all run by Developmental Therapists with speech and OT consults who will advise the DT's on things that can support the children based on their profiles. Third, they will even help us with potty training (which has been a nightmare of epic proportions). Fourth, the Executive Director will give us guidance when it comes to IEP's, even attending meetings with us if we would like her to. Fifth, they also have a transitional Kindergarten that he can attend if we feel that he's not ready for a regular school and needs additional support. Sixth, they also have speech, OT, and behavior therapy on site (after preschool hours), so we can transition all of his therapy here instead of traveling to three different hospitals around Chicago. And last but not certainly not in the least, we have the option to switch to a Blue Cross Blue Shield PPO (in which this preschool is in-network) on August 1st, so insurance will pay for the vast majority of it.

While I don't think this is going to be a magic bullet of sorts, I am hopeful that a more intensive, integrative, and focused therapy/preschool experience is going to help Elias. It became pretty clear to both of us that the potential benefit for Elias could be enormous; at worst he is going to continue to develop at his current pace, but at best, he could make some significant strides. I believe that God has opened this door for us and put the pieces in place. He truly is Jehovah-Jireh, which is translated as God is our Provider. I am so thankful.

As we were leaving the consultation, Chris asked me "Are you happy?" And honestly, I had to think about it. I am happy that we are able to receive this kind of service for Elias; because we are in a privileged position we are able to get the best care for him. However, I am very sorry to leave his current preschool. Ben and Caroline both attended it for three years, it's two blocks from our house, and we know and are comfortable with the staff. It's been (and continues to be) a place of love and encouragement for our family and we are leaving with thankful hearts for all that they have given to him while also eagerly anticipating what God is going to do in Elias (and all of us) in this next step.

presuming competence

When Anne Sullivan first worked with Helen Keller, she approached her with the presumption that she was competent, that Helen’s problem emanated from her not having an effective means of communication.   Even before Anne began to work with Helen, there was evidence of her desire to communicate—she used pantomime to show her interest in making ice cream or wanting toast with butter.  But it was Anne’s introduction of spelling and words that proved liberating for Helen.  

The principle of “presuming competence,” is simply to act as Anne Sullivan did.  Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world. To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world.  Presuming competence is nothing less than a Hippocratic oath for educators. It is a framework that says, approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute.

- Douglas Bilken, Begin by Presuming Competence

After the word "autism" the phrase "presume competence" has been reverberating through my brain in an infinite loop, partly because it's so talked about in the autism community. I love the quote above for so many reasons. First, because it treats people with autism (and any disability) as full-fledged human beings. Second, because it shifts the paradigm from the burden being placed on the child to prove that they are willing and able to learn and instead puts the burden on the adult to find pathways and supports to help the child to learn. Third, it shines a light on my own parenting and the ways in which I underestimate Elias. No longer.

I have lately been reading books to him that I didn't think he was ready for. He often doesn't pay attention in the way that *I* associate with paying attention (which means, being quiet and still, neither state being conducive to 4-year olds), but that doesn't mean that he isn't listening. A few nights ago, I was praying for him before bed and laid my hand on his little body as I prayed. He wiggled around under my hand but was quiet. I haven't been doing this out loud because it didn't seem like he'd care or understand. But, after I was done, he said "Amen."

For a more salient example of this: when Caroline was 2 years old, we took away her much beloved pacifier. It was nightmarish. We decided to get her off of it cold turkey after her dentist said that she saw the effects on her bite correlated to how hard she was sucking on it. Unbeknownst to me, she was getting a cold, so she really wanted it to clear her nose. I kept telling her "binky went bye-bye." I was so tempted to give it back to her, but had already taken it away and I didn't want to give it back to her for fear that she'd think that crying and whining for it was what will bring it back. Plus, after going through 2 days of crying I didn't want to "waste" all of that drama by giving it back to her [side note: we did the same thing with Ben around 18-20 months old and it took him 2 days to get over it]. It took a full 2 weeks to get her to finally accept it was gone. 

Meanwhile, we'd go on a play date and I'd complain about it to my friends about how it was brutal it was to get her off of it and advising them to wean their children off of it sooner than later. Stupidly, I didn't think that Caroline understood/cared what I was saying until one day she said to me "Binky went bye-bye. YOU took it away!!"

Whoops.

Presume competence y'all. In any child, no matter how old or what you think their ability level is. That doesn't mean you teach ancient Greek to your 3 year old, but it does mean that you understand that THEY understand what's going on around them.

Judgment

So many times we as parents are judged by the behavior of our children, are we not? Society sees a misbehaving child and assumes that the parents are too lenient. They see a perfectly behaved child and assumes that the parents must be doing something right. Both assumptions are problematic. First, the misbehaving child may be that way because of a disability/disorder, maybe they've been running errands for 2 hours straight because that's the only day that her parent has off, her parents may have just decided to divorce, or she is just having a lousy day. The second child may be perfectly behaved because of draconian discipline practices at home, maybe he has a sensory processing disorder that makes him hypo-reactive to sensory input (meaning: he is a little too laid back), or he might just have gotten his favorite ice cream. An outside observer does not know any details of the situation, yet can still place unfair judgment. Any mom whose kid has had a public meltdown and been given unsolicited advice knows this.

Now that we have an autism diagnosis, I have at times felt compelled to tell this to complete strangers who are looking askance as my 4 year runs back and forth in the hallway while we wait for his speech therapy appointment or when he lays down on the floor of the grocery store (gross). Viscerally, I want people to know that it's not my poor parenting that cannot control my son; his autism is creating this socially undesirable behavior. I feel the weight of others's judgment, whether spoken or not.

We were at dinner with Caroline's soccer team and their parents on Friday night. I sat next to one of her teammates's mothers whom I had never met before. We exchanged pleasantries, including how old our sons were. Her son was almost 4 and was interacting with her in a normal 4-year old way. She asked how old Elias was and responded "4" and almost felt compelled to tell her that he has autism so that she'd understand why he was not speaking in sentences, singing to himself, and grabbing all of the silverware that he could reach and banging on the table with it like a drum. But I didn't. Because I should not have to explain to every stranger that I meet about Elias's diagnosis (unless his behavior is disruptive or violent, which it almost never is). But this fear of people thinking poorly of me, my parenting skills and/or my child is so ingrained that I feel the need to explain and deflect.

The firestorm around the autistic child who was kicked off of the United Airlines flight hurts my mama's heart. I clicked on the Facebook comments even though I knew that it would upset me. And it did. Comments like: "As a passenger, I cringe whenever there is a crying child on board, but the worst is a kid with behavioral problems. Why should I tolerate a kid kicking the back of my seat for an entire flight? If a passenger has a kid with issues, then drive to your destination, or hire a charter flight. The public should not be subject to these kids." (emphasis mine) "Parents are responsible for not planning" One post even said that they should have medicated her with a sedative before they put her on the plane!

There are many things I could say about both the way that United mishandled the situation and yes, it's true that perhaps the parents could have planned it a little better. However, if there is one constant about autism is that it's not predictable. Your kid can be doing just fine at one point and then do an about-face with little warning. The mother has said that she tried feeding her daughter a hot meal in the airport but she rejected it. If it was me, I would start panicking thinking that it's a long way from Florida to Portland, but that I'm sure that I could buy a hot meal on board if I explained the situation to a flight attendant. That someone in this process would have compassion. I think that the mother made a mistake in insinuating that her child could become violent, which is what alerted the captain. It does appear that there was also a degree of prejudice and misunderstanding about autism by the crew as well.

To my mind, it comes down to this: extend grace. Reserve judgment. Offer assistance if needed. These are good mantras to live by with respect to all people, not just in interactions with people with disabilities.

On Why You Should Not Feel Sorry For Us, expanded

There are a multitude of reasons that I don't need people to feel pity for me, some of which I outlined in this post. There are more than I will even touch on here, but here are some additional reasons, otherwise known as blessings:

1. We have private insurance. We went to our first visit with an Autism clinic in Chicago last week for behavior therapy. It was just me and Chris and we were talking with a social worker who said on multiple occasions "Well, since you guys have private insurance..." which would be followed by statements such as: "the waitlist for speech therapy won't be as long", "we can get you in right away". This is the only clinic in the city that accepts public aid and the waitlist is much longer. I understand this model because the clinic needs the additional money that private insurance will bring in, so quotas are necessary to keep it running. After diagnosing him, his developmental pediatrician looked at his record and said "Oh good, you have private insurance. More services will be available to you." As autism is one of those conditions where early treatment is vital, I'm thankful to not have to sit on an interminable and unpredictable waiting list. There is certainly a lot more to say and do with respect to advocacy for those children who need but cannot get services, but I simply do not have the capacity for that at the moment.

2. This diagnosis is actually a blessing. Had she not diagnosed him with autism (and not diagnosed him so quickly), we would be stuck with 60 total therapy visits. As he's currently getting speech and OT weekly, that number would get chewed through quickly. Illinois has an Autism Insurance Mandate that requires that insurance cover up to $36,000 of therapy and services for children diagnosed with autism. Chris called our insurance company last week and they said that we have unlimited therapy visits and no dollar amount cap. Without this diagnosis, he'd still have delays but we'd have significantly fewer resources for addressing it.

3. We have a car. This is a point that may seem inconsequential to my suburban friends who have two or more cars at their disposal, but many people in the city are without a car. Elias currently has speech therapy at a hospital close to us, but has OT in the suburbs (we could not get him into the pediatric OT where he does speech because they weren't accepting new patients). The aforementioned Autism clinic is a solid 20-30 minute car ride depending on traffic. If we did not have a car, I'd be at the mercy of public transportation (sometimes unreliable) or perhaps a very generous friend/family member with a car and time to shuttle me to therapy visits.

4. I don't have a job. Since I'm in grad school (and boy, was that ever fun to have him diagnosed at the end of the semester when I was writing papers and finishing up work for the semester: picture me writing a paper about metadata schema and googling "autism therapy" in tandem), I am able to take him to these therapy visits, I am able to do lots of research (perhaps too much), make phone calls, etc. These things can certainly done if I were working, but I have the flexibility now to do these things.

4a. We live in the age of the Internet AND I have access in my home. This means that I can do unprecedented amounts of research on my child's condition as well as find doctors and facilities, not to mention connect with the general autism community at large. For an information junkie like myself, this is a gift.

5. We live in Chicago. Living in a large city gives us close proximity to an expanse of resources that we would not have access to if we lived in a rural community. In fact, Chicago and its suburbs offer an embarrassment of riches with respect to therapies, clinics, doctors, etc. for children with autism. That is, if you have private insurance, not to mention reliable transportation. Now, my opinion on the blessing of living in Chicago will likely change as we march towards obtaining an IEP for him, but for now, I'm thankful.

6. Lastly, but most importantly, because this boy is our son:

Autism

Autism. That word has been rolling around in my head, on my tongue, and doing circles around my heart for the last 3 1/2 weeks. I don't quite know what to do with it except to let it sit and nestle itself into my life because it's going to be here for awhile.
***
Elias was diagnosed with autism shortly before his fourth birthday. We had to wait 6 (!!) months to get in to see a Developmental Pediatrician in order to get him diagnosed. We knew, of course, that he had some kind of developmental delay, mostly around his expressive speech. His receptive speech is good; he understands almost everything we say to him and obeys us quickly and without much hesitation (certainly better than either of his siblings). However, we knew that he needed extra support and has been seeing a speech therapist first through Early Intervention and now a private therapist since October and an Occupational Therapist since January. We've seen significant progress in him in the past month or two. Still, we needed to find out if something more was going on.

Before the appointment, I felt pretty confident that she wouldn't be diagnosing him that day, that his symptoms were vague enough and there were other mitigating factors (such as the fact that he makes good eye contact, affectionate, no significant repetitive behaviors) that would not lead her to diagnose him that day. I was caught off guard when she did. Something physiologically odd happens to me (and probably others) when I receive bad news about one of my children from a doctor. The room closes in on me. I lose my peripheral vision. The doctor's voice is the only thing I can hear but I only process intermittent phrases. Caroline was in the NICU for a week after she was born with a suspected infection and I remember being wheeled into the NICU to see my baby, only to see her in an incubator and unable to touch her. The doctor was explaining to me that she had a possible infection, but, being in a postpartum haze, I only picked up the words "spinal tap", "antibiotics", and "bacterial infection." This time the words I picked up were "I do think he has autism", "moderate on the spectrum", "preschool for children with autism", "he has average normal to near average normal intelligence" [edit: Chris's correction], "good self-help skills", "tend to have more positive outcomes".
***
I have immersed myself in the world of autism and, as in any new "world" that one enters, I have acquired a new vocabulary: ASD, PDD-NOS, neurotypical, neurodiversity, stimming, scripting, echolalia, LRE, ABA, PECS... I have been particularly impacted by this blog and reading about both her and her daughter's journey. It's changed the way that I view autism. This diagnosis does not condemn my baby to a lifetime of loneliness, joylessness, or lack of relationships. He can have a rich life filled with love and light because of, not in spite of, his autism. So, I do not want sympathy because my son is on the spectrum. I do want sympathy because we have to spend way more time on the phone with insurance companies, therapists, and doctor's offices. I do need help: I'm thankful for friends who are willing to help us by watching our kids so we can go to meetings and just get a chance to recharge as a couple. I do need to be connected with other parents of children with autism. I do need people to understand and de-stigmatize autism and see Elias as a precious little boy made in the image of God, as we all are and to treat him with understanding and love.
***
In the days leading up to his diagnosis, my Mark bible study led me to Isaiah 43. In fact, Isaiah continually admonishes the Israelites to "not fear", "do not be afraid", "fear not". These verses have covered my heart in these early weeks. 

1 But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by name, you are mine.
2 When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.
3 For I am the Lord your God, the Holy One of Israel, your Savior.
 - Isaiah 43:1-3