Knowing what he knows

Recently, we had a parent-teacher conference for Elias. It was a good meeting since Elias has been exhibiting some very encouraging progress as I've documented in snippets both here and on Facebook (as well as in person if I've seen you recently!). One thing that I said at the very end of the meeting was that it was difficult for me to know what he knows and what he doesn't know, which is a common difficulty among those parents who have children with communication deficits. With my other two it was easy because they never stop talking; with him it's clear to me that he knows exponentially more than he can communicate, which is seen through his receptive language but also every once in awhile it will come out when we least expect it. Case in point: on the way home from this very same conference, we were stopped at a stop sign and Elias said "O. Octagon. O. Octopus." Yes, indeed.

However, it makes me question at what level I should be teaching him and at what level he's comprehending what I'm teaching him. One of the blogs I follow (and subsequently FB page), Rhemashope, posted a link to this story with video about this method called Rapid Prompting Method, or RPM. Here's a link to the article and the video, which is well worth the 9 minutes it takes to watch it.

This video profiles two 12-year old non-speaking autistic kids who have learned RPM and are now able to type their words onto an assistive technology device that will then speak for them. Around 5:15 in the video they talk about how Kaylie's special needs school that specialized in ABA was "teaching" them where their nose was on their face and wanting them to touch it over and over again. Kaylie's mom talks about how Kaylie was frustrated by that lesson and typed to them "Nose not hard to find." This segment is so eye-opening to me about how we treat and teach disabled children by making assumptions that they are not paying attention or able to learn when in reality many of them are soaking information in like a sponge.

The scenario that Kaylie was in is my nightmare for Elias, that his IEP and instructors will expect very little from him because according to their evaluation metrics, he is not complying with what they want him to do. I have seen this over and over again in the number of evaluations he's had to endure. The person evaluating him will ask him to do something and he won't do it, so they will check "No" or whatever the lowest metric is on their evaluation tool and he will score low for that particular criteria. For example, he has been diagnosed with an expressive-receptive speech delay. I disagree with the receptive speech delay diagnosis because I know that he understands almost everything I say that is directed towards him and probably much that isn't. I sit in on his speech therapy sessions every Thursday afternoon and last week his therapist wanted him to point to the heart shape out of three other shapes. He refused to do it and continued playing with the Play-Doh. I 100% know that he knows what a heart shape is. I believe that he just had no interest in pointing it out and therefore didn't, but from a diagnostic standpoint, since he didn't show comprehension they have to assume that he doesn't know what a heart shape is. I completely understand why they do that because that's the way the practice is structured. I do wonder if there should be a better tool that reflects the autistic experience.

I want to teach Elias. It's hard when he is wandering around or scribbling all over a paper that I am trying to use to help him write the alphabet. Another illustration of this is yesterday: Chris, Ben & I were playing a game and he was sitting on my lap throwing cards around (per usual). To keep him busy (and not messing up our game), I gave him a piece of paper to write on. He was scribbling, but then I wrote an E and told him to trace it. Well, he didn't trace it and he wrote this completely independently while saying each letter as he wrote it:

I tried to get him to do it again on another piece of paper and he needed hand-over-hand assistance from me and it still didn't look as good as this one.

At this point, I don't really have a game plan for teaching him. I am just going to continue to talk to him and read to him and point things out in the environment and just wait for his expressive language to catch up. But I'm also going to make sure as we move forward that we are able to get him the education that he deserves in a school with teachers and administrators who believe that he is capable of learning and that he has potential just like any other child.

the best kind of problem

Chicago playgrounds rule, especially at 5 pm in February 

Best slide in Chicago

Yesterday, we were on our way to pick up Ben from his after school chess club. We took our usual route which drives by this new playground which is really the best playground in the city. We haven't gone there very often and it's been several months since the last time we were there. It's also set about three blocks from the road we were driving on, so fairly far away for the city (and with a direct view since there are many empty lots on this stretch), but from the backseat I hear Elias say softly "I want playground." I was pretty surprised since it wasn't very close and that he would even remember that we'd been there, though he did this over the weekend too, while we were driving by another playground in the morning. It was 60 degrees here in Chicago on Saturday, so really a perfect day for to play at a playground. It was 38 degrees at 4:45 pm when we were driving past this playground yesterday, I was tired, dinner wasn't made and the sun was on its descent. I told him that I didn't know if we could go to a playground tonight, that daddy would be home soon, that I had to make dinner. Still, he was insistent, saying in a soft voice several times: "I want playground."

We picked up Ben and I decided, you know what? We can go to the playground for 15 minutes. Maybe he'll figure out that it's cold outside and want to leave anyway. If the older two don't want to play they can stay in the car (this playground in particular is a wide open space and I'd be able to see the car from wherever we were). I told them the plan as we were pulling up to the playground. The kids flew out of the car and ran straight for the equipment. And you know what? We all had a blast. Ben, in a rare display of selflessness towards his sister, let Caroline have the first turn on the zip line. Elias was like a person freed from a cage; his delight and joy was evident in every movement of his body. This child loves being outside. He headed straight for the climbing structure that led to the highest peak of the playground in order to go down the slide. We ended up staying for half an hour by which time it was getting dark and Elias was licking his hands to keep them warm (counter-productive? yes.) .

So our "problem" that is not a problem these days is that Elias is talking more! We could not possibly be more thrilled about that. He's saying what he wants with increasing regularity and clarity. Remember cafwize? It was three short months ago when I was astounded that he was able to tell me what he wants without me having to say it first and him repeat it. Well, fast forward to now and these words are coming out daily and often out of nowhere. While this is fantastic, sometimes it leads to difficulties when he says "I want pizza" and we don't have any. Or when he wants to eat an entire bag of croutons. Or, like yesterday, when he wants to go to a playground when it's 38 degrees outside. We want to give him what he asks for to reinforce the concept that if you use words, you will be rewarded by getting what it is you are requesting and thus encourage him to continue using them. However, we are coming up on the time where we need to start saying "No" to some of these requests. Perhaps that time is now. It's hard to know. Sometimes the requests are impossible, like on Friday night at 7 pm when he told us he wanted to go swimming. And he's pretty good at not throwing a fit if he can't get what he wants. But we don't want him to shut down either.

It becomes particularly difficult when he wants something that one of his siblings has. We had been encouraging them to give it to him if he verbally requests it since it was so novel that he was using language. We're moving to the point where that is no longer the case. They already talk about how spoiled he is and that he gets everything he wants, though they do understand why we are doing what we do. Some of this is a function of being the youngest child but most of it is because we want to encourage his language. Thankfully, we are also at the point where he's starting to understand simple logic: do X and Y happens. This is a very very big and welcome development. I remember when Ben hit this point right around his third birthday and feeling like that was a major turning point at which parenting became exponentially easier, which is still to say the hardest thing I've ever done.

So while Elias is our easiest child, I'm hoping that the acquisition of language and logic is portending even more development and growth in the next few months, though we are light years ahead of where we were six months ago.

Youth Sports

Can we talk about youth sports for a minute? Benjamin in 10 years old and he just completed a season of swimming at the Chicago Park District. City-wide championships were last week and he finished fourth in both of the 25 yard and 50 yard backstroke, first in both the 25 and 50 yard butterfly and second in the 100 yard IM for his age group. He had a great meet, a great season, and we are very proud of how hard he works. It's nice to see that reflected in the results, of course, but I'm more proud of the character that he's forming in large part because of swimming. In swimming, there isn't that fun aspect of day-to-day training. I'd venture to say that a small percentage of the kids who swim competitively actually enjoy the endless laps they have to swim for practice because it's hard work. The joy of swimming comes in racing and winning / dropping time, which results in a good deal of daily pain. There are critical life lessons to be gleaned through swimming competitively for sure.

In our family, the oldest two (10 and 8) are at the age at which they are playing different sports and trying to figure out what they enjoy and what they're good at. Ben swims and plays baseball; Caroline likes to tell everyone that she plays four sports: soccer, baseball, swimming, and now floor hockey. I signed up Elias for track this year and he seems to enjoy it but is exhausted by the end of it.

With the notable exception of Caroline's soccer team, all of their sports have been organized through the Chicago Park District, which is accessible (there are several parks within 2 miles from our house), affordable, and not overly burdensome from a time commitment standpoint, that is, the games and meets are within the city and tend to be once or twice per week. Swimming is the most time intensive with practices three times per week (though they are open every weekday, so we could go five days) and then meets twice per month on a Saturday morning. However, with these benefits come drawbacks, specifically that the quality of the programs vary widely depending on your park district. You can sign up for programs and the instructors don't do much of anything except stand there. Or the facilities and equipment is shoddy. Or it's all volunteer-coached, which can also be a crapshoot in terms of the level of coaching and instruction. The skill level of the children who play is also extremely variable: you have some kids who have never played at all and some who are significantly more advanced. As children get older, sports become more self-selecting; typically kids who are not having at least a modicum of success at something tend to drop out of their own accord and pursue something that they are good at. We are happy with Ben's main swim coach. His club is small so he gets very personalized attention and has dropped significant amounts of time in every event in the two years he's been swimming. Chris said that his is the prime age for dropping time, so perhaps not surprising but nice he's on that trajectory.

So the question is this: how much time and money do you invest in your children's athletic endeavor? Especially when there is no indication that the investment is going to return a quantifiable dividend, such as a college scholarship, an Olympic placement, or a professional career? That umbrella comfortably encapsulates the vast majority of children playing organized sports; if your child has those precocious gifts that would land them in the elite category then it is completely reasonable to pursue every avenue available to them. As previously mentioned, there are many good and great things about children being involved in sports: physical health, a feeling of pride & accomplishment, understanding teamwork, building camaraderie / friendship, and a host of less enumerable benefits. When do you decide to take your child to the "next level" of competition and commitment? For both me and Chris, we both played sports as children through the high school level. Neither of us were on travel teams or a higher level of competition than a rec league or its equivalent.

What are my goals for my kids athletically? Ben wants to be a MLB player. Is his goal realistic? Not really, but anything is possible. Do I invest the time and resources into his dream, or Caroline's (though she has never expressed wanting to be a professional athlete)? To what extent do I sacrifice family downtime and togetherness with driving around Chicagoland to take my kids to sports? The fact that we only have one car is limiting and forces us to put boundaries around extracurricular activities which is a pain but actually helpful in the end. What is your family's calculus?

it's time

Shortly after Elias was diagnosed, I made a brief comment in this post that there is more to do for those children who are diagnosed and cannot access services in a timely manner (or at all) due to a lack of private insurance. Well, the time has come for me to do more and hopefully you too.

Elias's school, LEEP Forward, has a non-profit arm called LEEP Beyond which provides services for children whose families are unable to pay for them. They are currently running a GoFundMe campaign to raise $250,000 and are about halfway there.

You may recall that when we first started researching options and services for Elias we were told by his Developmental Pediatrician and the autism clinic at Illinois Masonic that it was significant that we had private insurance and would be able to get services for him more quickly simply because of that fact. There was a long waiting list for children who are on Medicaid to see speech, occupational, or behavior therapists. It's true that research shows that outcomes are better for children who start services earlier and so these long waiting lists are often very detrimental to autistic children, particularly minority children who tend to be diagnosed later than their caucasian peers. For those minority children who were diagnosed late, who are not insured, AND have to be placed on long waiting lists for services the problem is compounded.

We love LEEP Forward. Elias has made great progress there, as I have documented in this blog and on Facebook. His therapists and the classroom aides truly care for him and want to see him reach his full potential. I love that his therapists can (and do) talk to and consult with each other because they're in the same building and they see him in a variety of different circumstances: one-on-one, in a classroom setting, in a small group setting, and with me since I sit in on one speech therapy session per week and occasionally on OT sessions. From Day 1 he has been so happy to go to school each day which is a huge relief and weight off of my shoulders.

He is there in the mornings and there are 6 children in his classroom and a minimum of five adults in the room. He has a personal speech and OT and will be getting a new behavior therapist at the end of this month. This level of care is expensive. Our insurance company pays them thousands of dollars PER MONTH. Insurance companies drive me bonkers but I am so grateful to have them. If we didn't have insurance I would have quit grad school (which has been a dream of mine for over a decade) and found a job in order to help pay for this school, which is indicative of how much I believe that this school can help and is helping Elias. I am also so very thankful that he has one more year there since they have a Transitional Kindergarten program and I'm starting to preemptively stress out about the IEP process.

Lastly, but most importantly, they protect his dignity and invest in his strengths. They are not trying to change him or make him less autistic; they are giving him the tools that he needs to make it through the world. I appreciate that so much.

All of this to say that we'd be honored, encouraged, and grateful if you would consider contributing to the LEEP Beyond fund to allow children who could not otherwise access these services. You can do so here. There may be homemade chocolate chip cookies involved for those in Chicagoland for your contribution :) Your investment will help fund the following:

• Financial assistance for families who would struggle to make copays or meet deductibles
• Additional but needed therapy sessions for children that are not covered by insurance
• Training sessions for parents to learn philosophies and techniques used in therapy in order to use the same methods at home
• In-home training sessions for families to help parents and caregivers learn about methods to maximize their interactions with their child
• Purchase of needed therapy items for children when needed such as sensory supports, swings, adaptive seating, Lycra bands, gym equipment, and visual supports

Thank you for considering!

2016 Reading Challenge

Anyone who knows me at all knows that I love to read. And that I have entirely too many books on my to-read list which is endemic to anyone who loves books. I am going to challenge myself this year by jumping aboard the Modern Mrs. Darcy's 2016 Reading Challenge. Here's what it is:



This is what I am planning:

- A book published this year
When Breath Becomes Air by Paul Kalanithi


I finished this yesterday. I don't have the words to describe it, only that I am very thankful to have read it and that the message of living each day with purpose and courage is one that is not shared often enough. I am only peripherally acquainted with the family through my dear college friend Emily who married Paul's brother Jeevan, but I can only imagine how much they miss him. *I* missed him by the end of the book. His voice is so clear, witty, wise, and poignant through the pages and it was with delight and heartbreak that I read it. Word to the wise: make sure you have Kleenex handy when you read the Epilogue, written by posthumously by his wife Lucy.

- A book you can finish in a day
For the Love by Jen Hatmaker

Jen Hatmaker makes me laugh. A lot.

- A book you've been meaning to read
Anne of Green Gables by L. M. Montgomery (I KNOW, I KNOW)


For years and years and years people have been gasping when I have told them I have never read these books. So I'm finally going to read the first one this year.

- A book recommended by your local librarian or bookseller
The Eyre Affair: A Thursday Next Novel by Jasper Fforde

I could cheat on this since I am in LIBRARY SCHOOL with many future librarians, but I think I'll run up to my local branch and see what he would recommend. [update] I talked to my librarian and he asked what genres I liked and I said that I'm partial to the classics: Austen, Dickens, Eliot. And he recommended this book, which is the first in a series. I'm excited to try it :)

- A book you should have read in school
1984 by George Orwell


In spite of being a goody-two-shoes in school, I was assigned this book and never read it. I guess this is the year to correct that wrong.

- A book chosen for you by your spouse, partner, sibling, child, or BFF
The Brothers Karamazov, by Fyodor Dostoevsky

Looking at this list of people, the chosen book would vary quite dramatically depending on which person I select. I have chosen my husband, who has been recommending for the past 13 years that I read it. I have started reading this before but couldn't get through it. I will consider this challenge to be a success if this is the only book I end up reading this year.

- A book published before you were born
Betsy, Tacy, and Tib by Maud Hart Lovelace


Caroline & I are reading these and finished this one last week :) Several of my Facebook friends recommended this series to Caroline and we are both enjoying them. We're currently in book #3.

- A book that was banned at some point
The Diary of a Young Girl, by Anne Frank


I am a terrible person. I have never read this book.

- A book you previously abandoned
The Cost of Discipleship by Dietrich Bonhoeffer


I typically don't abandon books. But I abandoned this one because I was too convicted by it. Time to try it again.

- A book you own by have never read
The House on Mango Street by Sandra Cisneros


There is an appalling lack of Latino authors in my literary diet.

- A book that intimidates you
Les Miserables by Victor Hugo


This is my all-time number one intimidating book. I have picked it up at the library and set it right back down a few times. I am not going to commit myself to it this year, but I'm putting it out there and maybe I'll get the courage to start it.

- A book you've read at least once
Persuasion, by Jane Austen


At least once? How about 100 times? In turn for reading The Brothers K, I am making Chris read a Jane Austen this year. While he's watched many of the movie adaptations with me, he's never read a book by her.

Anyone want to join me on the challenge? I would love the company and accountability!

Two Book Reviews: Neurotribes by Steve Silberman & Wonder by R. J. Palacio

NeuroTribes by Steve Silberman

Behold, the newest entry into my Top 5 books: NeuroTribes by Steve Silberman. Rounding out the Top 5 (not including the Bible) are in no particular order: Pride and Prejudice by Jane Austen, John Adams by David McCullough, Persuasion by Jane Austen, and Team of Rivals by Doris Kearns Goodwin. You can see this book is in pretty rarefied air :) I had planned to read this book after I was done with classes but I couldn't wait. I'm glad that I didn't.

There's been a lot of press around this and the buzz in the autism community has been intense. At least those in the neurodiversity circles, I'm pretty sure that those in the Autism Speaks / anti-vaccine camp aren't quite as effusive in their praise due to the main themes of the book which are:

THERE IS NO AUTISM EPIDEMIC.

AUTISTIC PEOPLE HAVE ALWAYS BEEN HERE.

For an amateur history buff like myself, his research on how autism came to be diagnosed was fascinating. It started with Hans Asperger first diagnosing the condition in the early 20th century but his research was lost during World War 2 when the Vienna clinic in which he was working was leveled by the Allies. Asperger's definition of autism was much more like the current definition; that is a spectrum and encompassing many different manifestations. Almost at the same time, Leo Kanner was working in the United States with children who exhibited patterns of repetitive behavior and social deficits. He worked hard to narrowly define autism as a disorder that is restricted to the most severe cases, as well as only a childhood condition, dubbing it "early infantile autism." Unfortunately, Kanner's research survived, unlike Asperger's, and was the dominant narrative of autism for decades. Because of this definition, many many children (and adults) did not receive the services that they needed and were misdiagnosed with conditions like schizophrenia and childhood psychosis.

For me, the most heartbreaking stories were the ones about children who were institutionalized, which was the standard practice in those days for any child who showed signs of a disorder. I mean, it goes without saying that you would need to pry Elias out of my cold dead hands if anyone ever wanted to institutionalize him, but this is also not the common wisdom of the day and parents would have been placed under an enormous amount of pressure to send their children away since there weren't resources readily available to help them. Reading this book also made me wonder how Elias would have been diagnosed (if at all) 20-30 years ago since he doesn't fall under Kanner's narrow definition.

Two quotes that I found interesting:

Researchers at the University of Edinburgh discovered in 2015 that genes associated with autism are also associated with higher levels of cognitive ability - particularly problem solving tasks requiring nonverbal, hands-on intelligence. (273)

Elias's strength lies in his ability to problem solve. He's always been this way since he was very small.

It turned out to be an idea as old as Asperger's notion that people with the traits of the syndrome have always been part of the human community, standing apart, quietly making the world that mocks and shuns them a better place. (450)

This one makes me pause. As a society, we are so unwilling to accept people who are different than us even though the diversity in this planet is immense. We want everyone to be like us, act like us, LOOK like us that when they don't, we ignore them and don't put the work in to befriend them. This isn't just true for autistic / NT people, it's true across race, religion, nationality, as we are are seeing on a national level these days.

It's a fascinating book, no matter whether or not you love an autistic person. It would be a great gift for a parent whose child was recently diagnosed!

WONDER by R. J. Palacio


So, I cried through at least half of this book. Some parts are legitimately sad. It's the (fictional) story of August Pullman, a 10 year old who was born with a severe facial abnormality. He endured multiple surgeries and had been homeschooled up until his 5th grade year when his health had stabilized to the point that he was able to attend school. They place him in an expensive private school in NYC called Beecher Prep. This is a YA book, but like most YA books, anyone can glean something significant from it. The overarching theme is choosing kindness, not simply choosing not to be mean. There is a difference.

I probably would not have done so much crying had I not had a child with special needs who is also vulnerable to bullying. Our society is just not kind to people who deviate from any norm, tragically. I'm making Ben read this one and we've had some good conversations coming out of it. I love being able to talk about books with my kids!

progress

So this is a brag post. I'm just so thrilled with how far Elias has come in the last 3 months. 3 months!! And we've seen so many new developments from him. I thought I would post a session note from one of his first sessions with his new SLP (speech and language pathologist) and the one from today.

Week of 9/14/15
Subjective: Elias took a few minutes to prepare to leave for his therapy session. When he showed he was ready, he walked nicely to the room and followed directions to sit at the table. Elias did a great job following the schedule of the session, becoming disregulated a few times demonstrated by getting up from the table and running to the beanbag/mom. Elias was shy at times, but participated in all of the activities planned by the clinician. He followed the directions within the session very nicely, requiring minimal prompts to be redirected. Elias imitated many requests after the clinician, independently requesting approximately 20% of the time given a visual model (i.e. “I want green”). By the end of the session, Elias caught on and avoided requesting new items in order to avoid having to express his wants. Elias had difficulty sticking to one activity for more than 3-5 minutes, wanting to move on to the next activity quickly. He interacted appropriately with the clinician while reading the dinosaur book, fitting train cars together, and singing “The Itsy Bitsy Spider”.

And here's the one from today (12/14/15):

Elias had yet another FABULOUS session today! He has been doing such a great job the past couple of weeks! He was imitating everything today and then generalizing those phrases to independently spontaneously use them within the session (i.e. let go <therapist name>, my turn, I want blue balloon, more balloon, etc.). Elias shared his attention for about 10 minutes with the balloons and pump, putting them away independently and calmly when he was done and saying all done given minimal support. He initiated getting out the musical instruments and allowed me to play along with him! There were two drumsticks where Elias had one and I had one. Elias kept wanting to take my drumstick and instead of getting upset and trying to grab it while crying, he turned it into a purposeful game! He would try to take the stick and when I would take it back he started giggling. I would then put the stick down and get "distracted" while Elias would make a run for it, giggling when I got the stick first. He had wonderful engagement throughout the entire session only needing a few quick breaks here and there. 

I am so proud of the progress he has been making! 

I absolutely adore his SLP -- she is so good with him: she is patient and willing to follow his interests even if it conflicts with what she had planned for the session. This is one of the hallmarks of the DIR/Floortime method that they use at his school, so not surprising, but really refreshing to see it practiced and also the results that it produces. And my boy works so incredibly hard; I can't get inside of his head but I really think it must be so gratifying to him to see his hard work paying off.

He still has a significant speech deficit. He's probably at a 2 1/2 year old speech level according to charts for typical children. But he's covered about a year's worth of language development from where he was before he started in three months! I'm so proud of him.

A Practical Practicum

I'm starting a practicum this January that I could not possibly be more excited about. For those not in academia (I personally had no idea what a practicum was before grad school), a practicum is work that you do out in the real world for academic credit. For me, that means that I do 100-120 hours of work to get 2 graduate credit hours. And I am going to do this unpaid. A summary of a conversation with Benjamin about this:

B: Wait, you're going to work for them?
Me: Yep.
B: Are they paying you?
Me: Nope. I'm actually paying my school so that I can work for them.
B: That's stupid.

I have a Faculty Supervisor who will oversee my work and a Site Supervisor at the actual work place, someone who is knowledgeable about what I will be doing, not just someone who is going to be a contact person. I have to write a few things about learning experiences and that sort of thing. But yes, I will be paying a third party so that I can go to work for free.

Sounds like a raw deal, right? So why would I be so excited about this?

A little background:
I was looking at the bio's of the therapists and staff at Elias's school earlier this year and noticed that several of them either were graduates from the Erikson Institute or current students. I looked them up because I had never heard of them and saw that it was a Graduate School for Child Development. I filed that information in the back of my head and plowed through the next few months of my semester. When it came time to register for classes for the spring term, I looked at the offerings and was underwhelmed, so I started thinking "Maybe I should find an internship or maybe do this practicum thing." Problem was that I had no idea where to start looking for a practicum. The initial search of our online job hunting service through UIUC yielded one possibility at the Chicago History Museum. I was planning on applying to that (had even written out the cover letter) when I had a thought that maybe I should look to see if I could find something to do at the Erikson Institute. I didn't even know if they had a library, so I went to their site and found out that they do. On a whim, I sent the following email to the Library Director:

My name is Kindra Morelock and I'm a Graduate Student in the Library and Information Sciences program at the University of Illinois at Champaign-Urbana. I am exploring practicum possibilities for the next semester and I am interested in your library. My youngest son was diagnosed with autism in April and now attends LEEP Forward, a therapeutic preschool for children with developmental delays in the West Loop. Judging from the biographies on his therapists and aides, I know that many of them come from Erikson. So, I have a personal interest in assisting you to fulfill your mission to train up therapists, social workers, and other care givers for children with developmental differences.

Professionally, I am interested in Data Curation as well as Archives, chiefly in the areas of metadata and preservation. I am currently taking classes the Foundations of Data Curation as well as Digital Preservation. I have taken classes on databases (as well as having extensive professional experience), creating metadata (Dublin Core, METS, PREMIS), and Python. I am planning on taking a class on Archives concurrently with a practicum in the Spring as well.

If this may be interesting to you, here is a link that details what would be involved in a practicum. I am also happy to send along a cover letter, resume, and references. Thank you for your time and consideration.

Kindra Morelock

I should stop at this point and tell you what some of these terms mean, in particular what I am interested in doing with my degree because I know there are many people who, upon hearing Library Science, think (1) that's a paradox and (2) why do we need libraries when we have Google? The latter is something that I am not going to explore here since it deserves its own post and many people have done a better job than I ever could in defending libraries. However, what I'm hoping to do is Data Curation, which is the idea that you take the data and digital objects that are being created and make it so that people can actually:

• find it
• access it
• understand what it's about
• preserve it for the long-term

So instead of people doing all of this research and generating loads of data, writing a paper and publishing it and the data stays on their PC, I want to help assign metadata to it in order to describe it and make it so that people can find it, as well as putting it in a place where others can actually access it since if it's just on your PC or a department network no one outside of a small group of people can find it. So this extends not just to research but also to things like digitized photographs, newspapers, etc. which is where the Archives piece comes in.

ANYHOW (I know I probably lost at least a few of you):

She writes back saying she's interested in meeting with me and we put something on the schedule. Now, going into this meeting, I wasn't at all sure that there would be an opportunity for me here. They have a very small online archive, so I thought that maybe I could help them digitize some photos and put them online. I don't want to be a Reference Librarian, which is probably the most obvious fit for a small academic library, so while I was excited about the meeting, I was also not getting my hopes up. I prayed before the meeting and asked God that He'd open a way for me if there was an opportunity.

So, I go to the meeting and meet with all three of the staff (see, small library). We talk for a little bit about what I'm looking for and what a practicum is and what it isn't. We talked about the Archive and they didn't seem to think that there would be enough work to cover 100 hours for me to just do that. We talked about a few other projects and it was kind of sounding like it wasn't going to work out, at least for a practicum. And then one of the staff members mentioned that they were wanting to start up an Institutional Repository.

!!!!!!!!!!!

So, an Institutional Repository is just about the exact thing that I want to do career-wise (or a Domain Repository, which is similar). And as we started talking about it, I was getting more and more excited about it. They don't have anything right now, so I would basically be helping create this bad boy from scratch. Like I'll be in the planning meeting and I'll be able to get my hands dirty in D-Space, which is the software that 90% of the Institutional Repositories in the US currently use. And all of this in a space that I both have some knowledge in (Child Development) because of my research over the last few months and interest in the subject matter unlike Astronomy or Nuclear Physics! I love that I will be supporting the institution that helps support my child and others like him. AND it's right downtown (I miss working downtown!!) and a block away from XOCO which is going to be pretty dangerous for my wallet.

I am SO SO SO excited about this. This is going to be really great on my resume and totally worth me paying for the experience that I'm going to be getting. Chris and I had lunch at the aforementioned XOCO after my meeting. After listening to me talking way too fast in my excitement about the meeting he said to me "You know Kindra, your life isn't easy but it is blessed."

Make me know the way I should go for to you I lift up my soul. - Psalm 143:8

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