Giving Thanks

Doe anyone's Thanksgiving ever look like this? 

I love Thanksgiving. I hate that it gets squeezed on the front end by Halloween and on the back end by Christmas. I'm a tradition kind of girl, so the appeal of eating the same delicious things only once per year (twice if you count leftovers) is strong.

Like most Americans, I have much to be thankful for this year and every year. My country is not torn apart by war and I'm forced to flee with the clothes on my back. I am not actively being persecuted for my faith. I have a warm home, food on the table, people who love me. My family is healthy. I do not take these things for granted. This year, however, there was a little bit extra to be thankful for.

We went to visit my husband's family in Ohio this year. My husband is one of five children, each married with at least two children. So the numbers of just that extended family is 25. Add on a few aunts and uncles and their families and we were a bulging party of 32. Even the most extroverted of us can get overwhelmed by the sheer number of people in one space, not to mention the autistic among us. However, Elias did so much better than I had anticipated. Like he was truly amazing. Not only did he talk to others on a few occasions, he was happy and mostly content pretty much the entire time. We did give him a few accommodations, such as not making him come and sit at the table for Thanksgiving dinner, allowing him to drag his blanket around the house even with all of the people around, and going outside with him often so that he could ride his scooter around and leave the fray (thank you Jesus for 61 degree weather on Thanksgiving!!).

This is contrasted to Memorial Day earlier this year. Similar circumstances, but much different outcome. He had several meltdowns over not getting popsicles and me needing him to wear shorts because that's all that was available. He wasn't talking much either, which was par for the course at that point. While he has learned a lot at school, I think we have learned a lot as well. I've been reading several things about how family gatherings can be a trial for many autistic children and their families: it's the classic fight between expectations and reality. One can have an expectation of the Norman Rockwell Thanksgiving dinner: everyone sits down at a long table with a gleaming turkey and all of the trimmings, with all present (including the children) well-dressed and groomed waiting with anticipation for the patriarch to carve the turkey. If that's your expectation, you will most often be sorely disappointed, even with NT kids. And if that's your expectation for your autistic child, well, it's going to be a disappointing AND frustrating experience for all.

I went into this past weekend realizing that not everything has to look perfect and that it's much more important for Elias to feel comfortable and realize that he's in a safe space with the MANY people who love him. And to do that without demanding more from him than he's able or willing to give, such as sitting at a table at the same time everyone else does, making him eat food that he's not used to, or making him stay inside when he clearly needs to get away for awhile. And he responded beautifully. As we still have Christmas coming up with even more family gatherings, I want to do what I can to provide those accommodations for him. There will be a time when we will want him to join us at a family dinner table and when we will gently push him more than we currently are. That time will come when he has more expressive language than he currently does and we can have a conversation about why and I will know with certainty that he understands. Suffice it to say we are not there yet but I am optimistic that we will get there.

"Autism Parent"

In the last 6+ months since Elias's diagnosis, I have been feverishly reading / watching lots and lots of media about autism (could you tell?). Some of the things that I read are from other parents of autistic children, as well as autistic adults. I've also read scholarly articles, am reading Neurotribes (for which I do not currently have the words, but suffice it to say, it's wonderful), and Facebook posts from many different pages that I have "liked." As much of this consumed material is via the Internet, some of it has been great, some of it has been okay, and some cringe-worthy. But I am seeing all facets of parenting a autistic child, just as there is a diversity of all parents. The stakes seem to be higher with an autistic child because of the lengths to which some parents are willing to go to "cure" their child.

Here are a few archetypes that I have observed:

The My-Child-Must-Be-"Normal" Parent
This parent cannot accept their child's diagnosis. In fact, this parent may have been in complete denial that there is anything different about their child and may have gotten them diagnosed much later than necessary. They scour the internet for "cures for autism." They are big on causation and are ardent supporters of Autism Speaks. They put them through many many hours of ABA therapy in the attempt to extinguish any autistic behaviors and to help them "pass", that is, act like an NT kid. They probably have not told their child about their diagnosis, so this child knows they are different but not why. This parent also tends to whine about how difficult it is to have an autistic child on their various social media accounts and use phrases like "I didn't sign up for this." [newsflash: when you become a parent, you SIGN UP for whatever that child, typical or not, brings to your life] They are also more prone to post content that may be inappropriate or embarrassing to their autistic child (such as potty training or meltdowns) in the name of "Look how hard my life is!"

The Biomedical Parent
The Biomedical Parent is similar to the My-Child-Must-Be-"Normal" parent but more extreme in their application. They have pinned their child's autism on external causes: vaccines, pesticides, environmental toxins, etc. These parents put their children on Gluten-Free / Casein-Free diets (GFCF), place them in hyperbaric chambers, they find a Defeat Autism Now! (DAN!) doctor who will prescribe any number of vitamins, supplements, anti-fungal treatments, and will promote chelation, which is a treatment to detoxify heavy metals from the body. The most fervent adherents may also buy into "miracle" treatments, such as the Miracle Mineral Solution, which is actually a bleach enema to be administered every 2 hours for 72 hours. The latter, in particular, is tantamount to child abuse in my opinion.

The All-In Parent
This parent respects their child's neurology and understands that they are different, yet pursues as many avenues as possible in trying to get their child help to acquire the skills they will need to be functional and as successful as possible in society. They never miss an opportunity to make something a learning experience. Their house looks like a preschool and they are constantly using Pinterest to gather new ideas for sensory play, speech supports, and the like. Their child is in a therapeutic school and may do more therapy after school or on the weekends. They spend thousands of dollars and untold hours on treatment.

The Neurodiversity-Unschooling Parent
This child has parents who completely accept their child's neurology and how that makes them different. They do not do anything that will force them to "pass" or attempt to assimilate them into the greater society, instead insisting that what needs to change is society and not their child. They maybe try placing their child in a school at first, but when it becomes clear that the school is not celebrating their child's neurology as they are, they will pull the child out and "unschool" them. Because of the nature of autism, their schooling may look like an extreme form of Montessori due to a perseverative interest.

At the moment I'm not sure what kind of Autism Parent I am. Certainly these archetypes are simply that: broad and exaggerated representations. I know FOR SURE that we are not the Biomedical Parent. Nutritionally, Elias is just fine. He's a good eater (though picky) and he's growing appropriately. He eats fruits and vegetables: protein is more the struggle for him but he's getting there with the introduction of chicken nuggets. As I don't believe that vaccines cause autism or that autism is a disease, there's no reason for chelation, which is (1) not a proven treatment and (2) I would never subject him to that.

I'm probably most like the All-In Parent, though I believe that my child needs some downtime and while I do search Pinterest for ideas every once in awhile I'm not constantly giving him activities to do, nor do we have additional therapy outside of school at this point. We are considering bumping him up to a full day next semester, which is something that we will discuss with his DT during our conference today. I'm hesitant because this is my last year with him where he won't be in school full time and I enjoy our quiet afternoons where I'm not dealing with the other two. But if his therapist thinks it would be helpful, I'd be willing to let him.

While I agree with the Neurodiversity-Unschooling Parent that societal perceptions of autism need to change, I'm more of a realist. Elias will need to function in the real world and I want to give him the skills that he will need to function in that world. To be fair, the archetype that I present above is not what neurodiversity actually is, as Jess from Diary of a Mom so eloquently puts it in this post. I particularly love this quote:

Acceptance means no longer setting ourselves and our children up for failure by grading their a-typical progress in relation to someone else’s typical development. It means no longer trying to eradicate the thing that is such a huge part of who they are and instead working to make it less disabling [emphasis mine]. That’s the heart of this really – accepting autism as a fundamental part of our kids and then working with them to leverage its gifts and mitigate its challenges.

We 100% are going to pursue the avenues open to us in order to provide Elias with the tools he will need to function in society and to fulfill his God-given potential. That will most likely look different than it does for his siblings and our challenge is to help him find his way, working with his neurology instead of against it.

A Conversation

This may LOOK like a plate of french fries, but it's so much more than that.

For a very long time now I have been asking God (sometimes through tears) to help Elias speak -- I have longed to have a simple conversation with him. His main mode of communication for the past two years has been (1) taking our hand and dragging us to whatever he wants, (2) us guessing what he wants and when we hit the right one, he will repeat what we say. I often know pretty quickly what he wants, so that eliminates quite a bit of guesswork and frustration on both of our parts.

Typically, our routine is as follows: I pick him up from preschool around noon and we drive home, eat lunch, and relax / play at home until it's time for the afternoon rush, which consists of picking up his siblings, getting them to swim practice, home for dinner, etc. While we are driving home from preschool, I will keep up a one-sided conversation, which normally sounds something like "Hi sweet boy! I'm hungry! We are going to go home and eat lunch. Mommy will make you a quesadilla for lunch, does that sound good? It's a beautiful day outside today [it truly has been a magnificent fall here in Chicago] -- the sun is shining and the trees are turning colors! It's 51 degrees outside [I point to our temperature gauge in the car], look 5 - 1, 51!"

So this is how the conversation went today:

Me: I'm hungry buddy -- let's go home and eat lunch. Do you want me to make you a quesadilla?

E: No! [this is said with an inflection on the "O" and making the word last for 2 syllables]

Me: How about a peanut butter and jelly sandwich?

E: No! [same intonation]

Me: How about chips with cheese?

E: No! [same intonation]

Me: What do you want?

E: [thinks for a moment] Cafwize.

Me: ?????

So, while we have had conversations that have sounded somewhat similar, like me asking him if he wants something and he says no, this is the first one that has gone on this long. I knew that he was telling me what he wanted with "cafwize" and I wracked my brain trying to figure out what he was saying. I finally said it quietly to myself and realized "French fries!! You want french fries for lunch?" No response in the backseat, but there wasn't a "No!" so I was pretty sure I figured it out. Thankfully I had just bought a bag of frozen french fries that morning so I went home and made him some and allowed him to enjoy the fruits of his labor.

Cafwize are yummy.

Now, had this been Ben or Caroline, I would have told them that they need to pick something healthy for lunch. But another mom with a non-speaking child in Elias's class said recently that if her daughter told her to put her head in the toilet, she would just because she would be so thrilled that she had said something intentionally. That's exactly how I feel about Elias. If he exerted the considerable effort to tell me what he wanted, I am going to give him what it is within reason. And in my book, french fries for lunch are definitely within reason (along with the 4 clementines he grabbed from the fruit bowl) :)

God answers prayer, y'all!

Thank you, Sesame Street

So, for those of you not in the disability community and / or who those who stay away from media, Sesame Street started this autism acceptance (notice that I didn't say awareness) campaign with a new song, an ebook, and several videos about autistic children and their families. You can find the landing page here.

As I have noted before, Elias does not like me talking about autism, particularly not when I'm talking about him. He got his haircut a few weeks ago and I told the hair stylist that he is autistic so that she'd understand the extra challenges that he was throwing her way and he looked at me in a "Shut up Mom" way and started crying. So, I wasn't exactly sure how he'd react to me showing him the materials. But I read through the ebook before I presented it to him and thought that maybe this would be a way for us to reframe the emotions and conversation for him. So, one night after my online class he came into my bedroom where I was looking at the site and climbed up on my lap. I played the music video for him and told him, "Look Elias! This is a song about autistic people! And those kids there are all autistic too, just like you!!" He had his blanket with him and was nodding his head and smiling along with the music. I tried to point out different parts of the video like "See those boys drumming? You like to play the drums too!" or "She is feeling scared." We then moved to the ebook and he sat and listened to almost the whole book.

I watched the other videos when the kids were at school -- good thing too because I cried through most of them. There's been a lot of that lately. Not because I'm sad, really, but because all of my emotions are living right on top of my skin lately for a variety of reasons, probably the primary one being just feeling overwhelmed. Overwhelmed by the grace of God and His provision. Overwhelmed by the road ahead of us. Overwhelmed by the abundance of riches that Elias receives at school.

Back to the initiative: do you know who really likes them? Caroline. She routinely asks to watch them and is fascinated by it. I'm not exactly sure why, but I'm certainly not discouraging her. My hope is that NT kids WILL watch these videos and that autism will become de-stigmatized by the community apt to bully and marginalize autistic people.

Of course, this initiative is not universally-loved. I read this piece, Not in Love with Julia who calls out the initiative for being "ableist." What is ableist, you ask? Good, because I didn't know either pre-diagnosis. It is "discrimination in favor of able-bodied people." That is, the framework through which you see life. Instead of "Caucasian" (racism) or "Male" (sexism), it's "able-bodied / -minded."

I think she makes some decent points in the article. Of course, the whole "with autism / autistic" debate rears its head once again since the videos tend to use the former. I particularly liked this part of the discussion:

A video aimed at parents, this one featured Yusenia’s dad talking about supporting his wife because in raising an autistic child, “there’s probably not a day that’s not stressful.” (As opposed to life raising typical children, which is nothing but unicorn farts and rainbows from sunup to sundown, right?)

I will say that I completely agree that raising NT kids is difficult too! Some autistic children have very significant challenges though, something that we don't have. But I will also say that I cried when Yesenia's dad started crying about how she blew out a candle on her 6th birthday. I interpreted his crying as he was so grateful that she did it -- the writer found it to be "dismissive and self-centered and, honestly, anti-autistic". You can view the video and form your own opinion here.

So, while it's not perfect, nothing is perfect. But what I am really appreciating is that it's re-framing the narrative and rhetoric around autism for our family. If this initiative can get Elias to appreciate his differences and realize that he truly is AMAZING, then it will be a success for us. And if parents of NT kids show these videos to their children to help them realize that children with differences are just like they are with families, similar desires (to play and have fun!), promoting not just empathy but a willingness to come alongside, befriend, and include, then it will be a success for our entire society. Because those NT children will turn into NT adults who have opportunities to hire, house, educate, and live in communities with autistic adults.

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.