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

Costco

So I've been on a blogging hiatus for awhile and what do I come back to post about?  Yep, Costco.  They just opened one up closer to my house and I went to check it out last week with my wonderful friend Colleen who is a member.  When I walk into Costco, I just feel like an American.    The place is enormous.  It's a bastion of consumerism.  It sells things in ridiculous quantities.  Yes, if anything says America, it is Costco (the large number of products that are manufactured in China notwithstanding, of course, though maybe that also says "America" to me).

Anyhow, I joined the club last week.  I have been holding out for awhile, going along with Colleen when she goes there.  However, after reading The Compassionate Carnivore: Or, How to Keep Animals Happy, Save Old McDonald's Farm, and Still Eat Meat and rethinking my own position on what I want my food dollars to be supporting, I wanted to explore all options, including buying straight from a farmer, a CSA (which we've done in the past), buying a la carte from places like Trader Joe's and Whole Foods, and also check out Costco, since I know they have "happy" meat and eggs.

At least in the Costco here, they had organic ground beef for $4.50/lb (cheapest I had seen was TJ's for $6.50/lb) and organic eggs for $5.99/2 dozen.  Generally organic eggs are $4/dozen.  These two things sold me.  Plus, our Costco has gas -- something that makes my gas-price-checking son very happy.  In fact, after Colleen told him that she got gas cheaper at Costco by being a member, he asked her "Is that legal??"

The conventional wisdom is that things are cheaper at Costco since you are buying enormous quantities of it (um, 12 lbs of popcorn, anyone?), but since I am the kind of grocery shopper who goes to several different places including Aldi, I wanted to see if it was actually cheaper to buy my staples there.  So, armed with a paper and pencil (very high tech), I calculated the per unit cost at both Aldi and Costco and here are my results:

Costco

 Aldi

As you can see, Costco is actually cheaper than Aldi for quite a few things, like honey, pecans, butter, and canola oil.  However, the issue for me is quantity.  I really don't have room to store 5 quarts of canola oil!  So the .002 cents I'm saving per quart are not worth the hassle of having such a large container in my kitchen.  Even if I keep my current container and pour the oil in, it's still a hassle.

As far as diapers go, I have used the Jewel brand diapers (Baby Basic) on all three of my kids and have been pleased with them.  Elias is in size 3 and they are $0.16 each, the size 3 diapers (Kirkland brand) at Costco are $0.18 or $0.19 each.  The wipes at Costco are $0.02 each and the ones at Target are $0.019 each -- and I prefer the Target brand.

Aside from the meat and eggs, the absolute best deals that I have found at Costco in my week as a member are their pure vanilla extract -- I don't remember the actual price, but it's far far less to buy it in a larger container than it is to buy it in 1 oz containers that most grocery stores carry -- and their yeast.  I bought 32 oz for slightly more than 4 oz costs at a regular grocery store.  As long as you keep it in an airtight container and in the refrigerator, it should last you.

An added bonus?  The samples!  My kids get so excited by walking around and trying out the free samples :)  The frugal mom blog I read has commenters who say they save money by letting their kids wander around and eat the samples as their lunch!  I don't think I will do that, but it is fun to try the different things they have to offer.  Now, if I can only figure out how to get out of there for less than $100 (all within budget, but still)...