I Forgot How Hard I Have to Fight

It is only the second day of school, and I am already getting push-back from Lanigan Elementary. I just called the Farmington Schools Special Education Supervisor, Shellie Cole, because Caleb’s teacher is making him do first grade math; we finished first grade math over the summer. So, now I have to fight for him to be treated as a gifted child as well as fight for his rights as an autistic child.

Why isn’t there a Special Needs Advocate in Oakland Schools? This should not be happening. Right now, Caleb is being punished for being so productive over the summer. And when Caleb is bored (which will happen if you ask him to do simple math) he acts out; Caleb needs the stimulation of thinking in order to stay on track. If it isn’t challenging for Caleb, why make him do it?

Plus, yesterday, on the first day of school, the administration started giving us a hard time at drop-off. Yes, parents are not supposed to get out of their car in the drop-off lane, but my husband was driving and Caleb and I hopped out. Why? Because there were no handicap spaces available and the parking lot was a) completely full, and b) a nightmare with cars going in the wrong direction just to find a place to park. Caleb cannot walk through a crazy busy parking lot while I’m carrying in a ton of school supplies. Why? Because we have to provide all of his food and snacks and whatever comes up because he is gluten-free/casein-free; if we didn’t supply the extra snacks, the school wouldn’t provide safe food for him during snack time or special celebrations. There is a kid in his class with a severe nut allergy; NOBODY brings anything in that has even been processed with nuts. My son’s response to gluten and casein is not life-threatening, so they don’t really see it as important. Caleb has regularly come home with a note saying he ate an Oreo or something.

1 in 37 boys have autism. Why aren’t we coming together as a force to be reckoned with? Why do I have to call administrators and talk to a zillion random Farmington workers and educators just to make sure that my son is given his proper education?

My son has the right to the kind of education that is responsive to his needs. My son has a parapro; it is not like it would be difficult for Caleb to do his own challenging work while other kids do theirs.

I forgot about all this hassle. I forgot how everything is a fight.
I hate fighting.
But I have to fight.
If I don’t fight for my son, who will?
Definitely not Lanigan. šŸ˜¦

Tracking and Feedback – How We Diagnose

One of the more frustrating aspects of Caleb’s autism is that he has a mental disconnect between his mind and body. He rarely recognizes pain; most of the time he gets hurt, he is more scared than feeling pain. I mean, this is the kid who, as a baby, never cried while getting his vaccinations. Of course, we have a pediatrician appointment today, and let me tell you, he is going to have an anxiety-feuled meltdown when the needles come out.

Because of Caleb’s disconnect, my husband and I track his behavior to find patterns. One pattern we recognized early on were his headaches. Headaches are very common for autistic people, but we still wanted to track and see when his headaches manifested.

We kept a calendar of when Caleb showed symptoms of head pain, such as squinting in bright room, preferring to lie down in a dark room, having bathroom accidents, and overall his behavior was chaotic at best and horrifying at worst. But, what we quickly realized was that the times and days Caleb was having his behavioral issues, my husband and I had migraines. We also were able to group Caleb’s behavior into 2 sections: minor headache or severe headache.

With the hunch that Caleb was getting migraines, we searched all over for a neurologist that works with children. Caleb was 2 and still mostly nonverbal, so he couldn’t tell us anything about his head pain. We called around and tried to find a neurologist for him; there were only 3 pediatric neurologists available in the whole state of Michigan and 2 of them required a diagnosis of migraines in order to see the doctor. I was floored – don’t you go to a neurologist to get diagnosed? Thank goodness for DMC and Dr. Sivaswamy. She listened to my husband and I describe how and why we thought Caleb was experiencing migraines, and in the end, she agreed with us. She started him on liquid Cyproheptadine, and we have increased the dosage to coincide with his growth. This preventative has proven somewhat effective, but not entirely. The only thing that seems to really help Caleb’s migraines is ibuprofen. We only give Caleb ibuprofen 3 times a month; any more than that, and Caleb could suffer rebound migraines.

Getting the right help for Caleb is tricky, because he can’t tell us the difference between what is and what should be. We have to use all of our tracking and feedback skills in order to make an educated guess as to what is going on with Caleb. For instance, he is currently starting to get anxious about things. Caleb will obsess over a fear, getting more and more worked up until he is in full-on panic mode with Caleb crying so hard he throws up. It isn’t good. As a mom, of course I want to protect him, and I want to make his life easier. I also don’t want to be a crutch. We have brought up his anxiety to our pediatrician and Caleb’s feelings doctor, but the feedback is the same: yes, he has anxiety, but there is no medicine that is safe for him. I worry so much about that amazing sponge of a brain because I want him to enjoy life and relax, but at what cost? Medicines of all kinds having lasting effects on our brain, and risking hurting Caleb is something I am not comfortable with.

Caleb has mentioned that he wants me to go to school with him. Even stay with him at school. I want to emotionally support him, but I also want him to be able to emotionally support himself. I keep on thinking about the goal of him being completely self-sufficient, but then I think, “um, he is only 6-years-old. I have clothes older than him. Pretty much everything I own is older than him. Maybe I can use kid-gloves.” I’m sure everyone has an opinion. Even in our own family, we disagree on what is best for Caleb. I don’t think that any one answer is right or better than another – I think that we just have to pick a strategy and be ready for push-back and unintended consequences.

Right now I’m still fighting with Farmington Schools to let me sit next to Caleb while he is tested. I seriously cannot understand the rationale. There is a teacher conducting the testing, so it isn’t like Caleb and I could cheat. Plus, if we did cheat, it would be totally obvious when he shows up for a class he is totally unqualified for. I am surprised that there isn’t a single ASD advocate who works for Oakland Schools. Oakland County is the richest county in Michigan, and yet they have no ASD advocate? 1 in 59 kids have autism (1 in 37 boys) and we don’t have people within the school system fighting for them? How is this possible? And no ASD pediactric neurologists in Michigan? I don’t understand how we are supposed to raise our ASD children without proper ASD support.

I want the very best for my child, and that means being his greatest advocate. I have to keep track of his behavior and adjust our behavior accordingly. I have to constantly be watching out for indicators of distress and then backwards engineer the cause. With Caleb’s migraines, we were lucky to have such a wonderful doctor who took us seriously. I am not sure why anxiety isn’t given the same kind of seriousness, but I have to find a way to help him. At the end of the day, it is my job to make sure that he grows up into an educated, self-sufficient, happy gentleman. Now if someone would just give me step-by-step directions on how to get there…

When is it Worth the Fight?

My father gave me two pieces of advice that I will always remember. He sat me down before I went off to college and he told me: a) you may win the battle but lose the war, and b) never ever mix your drugs. (I’m serious. That was our entire conversation.)

When dealing with people, I tend to be results oriented; I tailor my behavior in order to get the desired outcome. For instance, if my goal is to be on good terms with a person, I will let things go because it isn’t worth the battle. When dealing with Caleb, being results oriented has been very helpful.

When I think about what I care about, it really boils down to me wanting Caleb to be healthy and happy. I also want him to grow up and be a good partner to someone he loves. So, I want to raise a healthy, happy gentleman.

How do I do this?
First of all, this is something that I thought about while Caleb was still in my belly. I never told him “no”; I always said, “no thank you.” I try to always use my manners with him and with other people so that I am modeling the kind of behavior I want him to emulate (see: Bandura). Caleb doesn’t think about being polite – it just comes naturally to him because we have conditioned him to use his manners.

Setting Caleb up for success is something that is constantly on my mind. This involves identifying and removing obstacles that can negatively affect Caleb’s goals. One way we do this is by buying Caleb pants that have a stretchy waistband because he has trouble unbuttoning his pants when he needs to use the potty. Or we transition to the family bed 45 minutes before bedtime, so we are getting in the mood for sleep.

But what happens when I cannot control the situation? What happens when Caleb is demanding something that I don’t want him to do or have? One of my main methods is a twist on The Passionometer Protocol. Basically, if Caleb wants something more than I don’t want it, then I give in. Exceptions to this rule is when Behaviorism comes into play. If Caleb is acting out and then I let him have his way, I am teaching him that in order to get his way, he can just throw a fit. It is so important to watch for unintended consequences when using positive reinforcement.

This weekend we are having a garage sale. This is very difficult for Caleb as he feels a true emotional connection to everything he owns. He even wants to keep clothes that he grew out of years ago. I have to figure out a way to stay firm and expose Caleb to some of the these parts of life that will be difficult for him, but also not push him off the cliff into Meltdown Land. I have let him take 5 or 6 small toys back, but I also said “no” to quite a bit. Caleb is exhausted because this process is mentally taxing for Caleb. I need to remember that and set him up for success by making sure he goes to the potty every 45 minutes, eating and drinking, and trying to not put one more piece of straw on that camel’s back.

Sometimes the battle is not with Caleb; sometimes it is for him. I have to constantly butt heads with our school, Lanigan Elementary in Farmington Schools. His special needs coordinator is super nice, but the principal and I do not get along. Lanigan does not have an ASD classroom; I refused to have Caleb go to a different elementary school because he has the right to go to school with his neighbors and friends. I finally had to send a letter to Lanigan cc’edĀ  to the superintendent office asking for them to test Caleb across all academics. Caleb is at a 3rd grade level in math and reading. Caleb also has anxiety, and just the idea of the tests makes him nervous. Caleb says that he will not take the test without me next to him. The superintendent’s office said that I could be in the building but not next to him. Am I supposed to battle my child into taking a test or do I stand up for my child? I mean, obviously, I have to stand up for him.

Do I look forward to fights I have ahead? Not at all. I hate fighting. I hate tension. I’m the person that just wants to walk away from a fight. It is exhausting, emotionally and physically. But, I have to be a Mama Bear and protect my cub. When I talk to other parents of special needs children, I hear horror stories about schools not supporting them enough. So many special needs kids we know go to private schools, but truth be told, there is no way we have the money for that.

I really wish schools would change their way of thinking, but I’m not holding my breath. So, these next coming weeks, I will be looking into the law on Michigan education, specifically with special needs children. I have found that having facts is much more important than having a strongly held opinion. One more thing – I can be a hot head sometimes, but my husband is always cool as a cucumber. When I am nearing my boiling point, I tell my husband our code word, and he knows to take over. In order to truly be results oriented, I can’t go around pissing off administrators. I have to be an adult. I have to be mature so Caleb can be a child.

That said, I really really want to show up for our IEP meeting wearing a Xena outfit. šŸ™‚

Behaviorism, Positive Reinforcement, and Unintended Consequences

When dealing with Caleb, I have found that I really rely on behaviorism. Because we have no real way to find out what is going on inside his brain (he doesn’t have the skill set to communicate well about his feelings), we have to treat it as a black box. Performance is our primary way of assessing Caleb’s abilities and evaluating success.

One of the biggest pitfalls with using behaviorism is that most people don’t understand the difference between rewards, positive reinforcement, and incentive systems. So, here are my operational definitions:

*Rewards: anything given to a person in hopes of getting that person to learn or extinguish a behavior.
*Positive Reinforcement: an action, stmuli, or gift given to a person that will encourage the person to either learn or extinguish a behavior. Unlike rewards, positive reinforcement guarantees success. Well, for a while, anyway. Then you need schedules of reinforcement, but that is a whole other post.
*Incentive Systems: this process is about creating an atmosphere that encourages motivation within a person. This means that like positive reinforcement, you are aware of what is important to the subject. However, positive reinforcement in contingent upon behaviorĀ  whereas incentive systems are in place before the person performs, and will continue to exist regardless of performance.

We do a combination of positive reinforcement and incentive systems. Our house is very Caleb friendly, as one can probably tell by the treehouse in our living room. Caleb has access to toys, electronics, books, and some art supplies, so he doesn’t have to ask us for everything. However, we do use a token economy a lot, and that is straight-up behaviorism and positive reinforcement.

There is one more pitfall when it comes to behaviorism: unintended consequences. For example, whenever I got into trouble as a kid, my punishment would usually include cleaning. I did a lot and lot of cleaning. We had 4 darn bathrooms in our house; there was always something that was in need of a good scrubbing. However, the unintended consequence my parents didn’t see coming was that for a long time, I hated cleaning. Even well into my 20’s, my house was a pig’s sty.

Now, as a mom, I definitely have more of a nesting mentality overall; I actually clean all the time without being asked and without negative feelings. But it took decades to get there.

Punishment is a very tricky process. Again, you want to encourage good behavior and extinguish bad behavior. That is kind of the beauty of a token economy; you can earn or lose stars and it isn’t me that is doing anything, as I am simply moving the stars he lost or gained. We do use timeouts, but only for when he has used his hands for hitting (this book is great for hitters). Plus, once we got into the habit of earning stars, Caleb has seen their value and really cares if he earns them or loses them.

Right now one of my main goals is for Caleb to be able to walk with me without me needing him to wear his monkey backpack (skiphop monkey backpack), and for him to behave when we are out shopping, ie, walking with my husband and I and not running off, not falling to the floor, not grabbing things off the shelf, etc. We took a long nature hunt yesterday, and Caleb was able to stay with us for the most part. He earned 7 stars for just staying close to us.

My recommendations are:
*Make sure that you identify the behavior you want to change
*Identify the difference between the “what is” and the “what should be”
*Put together an incentive plan that involves something important to your subject (ie, Caleb loves electronics, books, art projects, and going on family trips).
*Discuss with your family how the stars will be earned or lost; everyone needs to be on the same page so there is no confusion.
*Avoid punishment unless it is absolutely necessary
*We are currently trying to never yell unless it is because Caleb is in danger; this helps so much.
*Use a combination of contingent and non-contingent incentives
*Have a list of actions for your subject to complete; this list should be visible to your subject at all times and also state how many stars are earned for each performance.
*Push just hard enough, but not so much that they break. When trying to learn new skills, it can be overwhelming for Caleb; I have to constantly gauge Caleb’s mental load to make sure that he is not about to have a meltdown.
*Always think about what unintended consequences might arise from a punishment or incentive.

Learning with Mad Libs

With a ton of education about education, I am able to think of ways of making homework fun. Now, I’m a dork, so I think flashcards are fun as heck – Caleb not so much. Sometimes you have to hide the homework like you do with vegetables: sneak it into something they like. So, instead of making flax seed muffins, we are playing Mad Libs.

Why are Mad Libs genius? Because Caleb loves playing the game, and he doesn’t realize that he is actually learning. We use Mad Libs Junior, which have the added bonus of giving suggestions for each category; the four categories are nouns, verbs, adjectives, and parts of the body.

Noun: person, place, or thing.
Verb: action or state of being
Adjective: describes a noun

I keep it that simple, and I ask him to define these words randomly during the days. It is all about creating strong neural pathways so he doesn’t forget; it is important to reinforce these pathways on a regular basis, but doing it too much can lead to mental overload. When Caleb hits mental overload, he is done for a few minutes and then we reset.

I mostly use the Mad Libs without letting Caleb look at the sample words. First of all, the more random the words, the sillier the story is. Secondly, giving Caleb the time to come up with an answer of his own is teaching him how to problem solve. Patience is key, and it is hard to know when or if I should rescue Caleb when he is clearly struggling. Right now, I’m playing it by ear; if Caleb is getting emotionally upset, I will try to calm him down and point him in the right direction. But, see, then I worry that I am giving him positive reinforcement for melting down. Of course, that is a whole other topic that I am looking forward to writing about: the difference between rewards, positive reinforcement, and incentive systems. (I literally wrote the chapter on this.)

Serious Play is a concept that Lloyd Rieber has researched and has published many articles in peer-reviewed journals on the subject. Serious play is a way to making learning fun, because after all, we want our kids to be life-long learners. Another fun way to learn is through graphic novels, but that is also a whole other post. For more information about Lloyd Rieber, you can visit his website.

Finally, Mad Libs are great because they don’t take long to complete. There is a tiny delay of gratification that is really helping Caleb; autistic kids aren’t really know for their patience.

Happy Mad Libbing!

Study Time: Reframing Homework

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Because Caleb is insanely smart, my husband and I have worked to develop curriculumĀ  that best suits his educational needs. Yes, he has a parapro at school, but what we are working with is a contextual issue. Caleb needs to attend public schools in order to learn how to properly interact with his peers.

However, the school is not an environment that is best suited for Caleb learning information or skills. This is where Amazon and Costco truly shine; they both sell workbooks that allow you to teach your child an array of skills without having to develop your own lesson plans.

The school did provide us with the first grade math workbooks, but we have blazed through those. We are now working on multiplication and division. Some workbooks focus on one subject, like addition or geography; there are also workbooks for each grade which are also incredibly helpful.

I have also found that flash cards are a great way to help reinforce information. With young children, Behaviorism usually works best; performance is the best indicator of success. It is all about practice, doing the same drills over and over again.

We keep a token economy at home, where he can earn (or lose) stars based upon performance. We use the I Can Do It chart at home. We first used a variety of activities, but now we just have one main theme of “No Mean Words,” and all of the stars go into the same pot. Caleb can exchange 10 stars for one book, or he can exchange stars for money which he then uses to pay for excursions to the aquarium or Legoland, etc.

At 3:30pm everyday, we have “study time.” Caleb can choose 2 of the 7 listed possible subjects, which include addition, subtraction, multiplication, division, handwriting, reading, and geography. We also so vision therapy everyday. He controls which subject matter we study first, and I give him the time he needs to answer the questions. Being patient is not a strong suit of mine, but with autistic children, you need to relax and let them answer in their own time. I’m talking like 2-3 minutes, maximum.

The 4 cornerstones of motivation are challenge, curiosity, fantasy, and control. Malone only uses 3, but I have added “control.”

Challenge: Make sure that the subject matter is appropriate for their abilities. It should push them, but not too hard. They should have relative success in the end, even if it is a bit rocky in the beginning.

Curiosity: Be sure to pick a subject matter that is interesting to your child. Maybe they are not crazy about math, but they love Pokemon, so counting Pokemon is a great place in the middle. A lot of autistic children are naturally attracted to electronics; educational games on my son’s Kindle helped him learn how to read at age 2 1/2. Do not discount how helpful electronics can be, as autistic children are not the same as their neurotypical counterparts.

Fantasy: This refers to anything that doesn’t already exist; by taping into a child’s creative side, you allow them to think about the future they want. This may be as simple as thinking up numbers to add together or as complicated as an art project.

Control: Allow your child to have some influence over the subject matter they learn, including how to learn it (workbook, flashcards, problem solving, etc). By giving them ownership, they will be more intrinsically motivated to learn.