Time on Task

Somehow, between June 18th and September 4th, my son changed. Some of the changes I could see unfolding right in front of my eyes; other changes happened instantaneously. Caleb is more self-reliant,  polite, controlled, and has dramatically reduced his defiant behavior. He walks with my husband and I without running off. He actually seeks out approval by asking to help me. I’m not sure what created the change, but I have some ideas.

First of all, for the first time, I made sure that Caleb and I did “study time” every day for about an hour and a half a day. I theorize that for Caleb to truly know something, he has to practice it for longer than his neurotypical counterpart. Caleb needs to strengthen his neural pathways with repetition, and once those pathways are forged, that information is locked in. (I want to say that I agree with those who say, “if you have met one autistic child, you have met one autistic child.” All I am say is how I see Caleb and how I respond to what I see.)

Another change we made was his token economy system. Instead of just earning stars which can be traded in for books from Amazon, we have allowed him to also save up cash; this money is then used for large trips with the grandparents, such as to the aquarium or zoo.

Finally, we started expecting more from Caleb. He now has to groom himself every morning; we help him, but he cooperates now. I mean, yes, Caleb is going to complain every time I brush his hair, but it is just a verbal complaint. No hitting, no screaming, no falling to the floor. He also participates in chores; he is in charge of picking books up and putting them away because otherwise the puppy likes to chew on them.

Whatever the reason, the change is incredible. It gives me such hope for the future.

I remember having to digest that I had a son with “severe autism.” We didn’t know if Caleb would ever speak, let alone be able to lead a “normal” life. I remember the tears and the fear and I just wish I could go back in time and tell myself that everything would be okay. Back when Caleb was first diagnosed, I read horror story after horror story about autistic children being violent and having to be institutionalized. I knew nothing about autism, other than it was a dream wrecker.

For those of you who are just going through the beginning stages of autism-acceptance, please take heart that it can be okay if you put in the work. There are many studies that show that the greatest indicator of success is time on task. Want to be the best piano player ever? Practice every day for as long as you can. Want to be the best writer, the best rollerblader, the best hot dog eater? Time on task.

Temple Grandin, who is a goddess, suggests that autistic children get somewhere between 20 – 40 hours a week in therapies. Obviously she doesn’t mean that a child go to Occupational Therapy 40 times a week; there are plenty of therapies we parents can do at home with our children. Everything from core exercises, to art projects, to playing games – every exercise has a lesson to learn. How to hold scissors, how to wait for your turn, how to follow instructions – all of these are important lessons beautifully hidden in fun time.

To be truthful, many of my attempts to teach Caleb have failed. It has been through sheer force of will that I have been able to get through all the rejection I felt and still try to help Caleb be happy and interact with the world. It is time on task for us parents as well; I don’t blink an eye when Caleb has a meltdown in public. I attend to his needs by sitting down next to him and telling him I love him (which is what he asked me to do when he has a meltdown), but I also do not give in and let him have whatever sparked the meltdown. I am loving but strict, and I believe you can be both. I am strict about him using the potty or eating well; that said, I don’t regulate his electronic time except for when it is electronics’ bedtime. For me, finding that balance has all been time on task.

I cannot speak as to how other autistic children work or feel or anything – I just know what has worked for Caleb and me. I hope that maybe what has helped us can maybe help others as well.

P.S. I am not a behaviorist, I just sound like it.

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. 😦

Fun at the Detroit Zoo

As I have mentioned before, we keep a token economy in the house. Caleb can earn stars which he can use to buy books, he can earn money to save, and he can earn money to pay for trips. So far this summer, he has paid for a trip to Sea Life Aquarium and Lego Land, and most recently, a trip to the zoo with the ultimate experience, including Dinosauria. We even bought tickets that allowed us to feed a giraffe. Caleb was not very well behaved with the giraffe, but each one of us got a turn, and it was really cool.

Each trip, he has paid for himself, my husband, my husband’s parents, and me. Now, I have incredibly generous parents-in-law who like to pay for themselves (I ask them to just put the money back in Caleb’s trip fund).

In order to make each trip easier, Caleb (via me) has prepaid for the tickets and then set aside money to spend on gifts and stuff. Caleb is not really good at standing in line, so any obstacles we can remove ahead of time, the better.

This past Friday, all 5 of us went to the zoo, and like I mentioned before, we got the ultimate experience. I would totally recommend it.

First we saw the penguins and then the reptiles, and worked our way past the camels and zebras, and found the entrance to Dinosauria. It was super freaking cool. The dinosaurs moved and made noises. There were not just adult dinosaurs, but whole families or packs. Lots of adorable little babies hatching out of eggs and such. I also got spit on right on my crotch, so it looked like I peed myself – it was pretty funny.

We saw lemurs, a beautiful lion, a grizzly bear, and seals.

Everyone at the zoo was very kind; we have been to the Detroit Zoo since Caleb was a baby, and we have always had a wonderful time. The workers there are incredibly understanding when it comes to Caleb’s behavior. I have never had a negative experience with a single zoo worker. That is another reason why it is worth the expense.

I have to admit, my phone died about halfway through our 4 hour tour (yes, 4 hours. Yes, I was exhausted.) because I was so busy catching pokemon and spinning pokestops. I caught about 25 squirtles. I know, I know, so silly, but it is something Caleb and I were able to focus on when he was getting tired. Plus, fine, I like it too. Fine. I’ll admit it. I like pokemon. Anyway…

We decided to not to take the train from the Africa stop all the way down to the exit because we wanted to stop at the experience center; our tickets allowed us entrance to a 4D movie or a simulation ride. We got there right at 1pm, right as the sea monster 4D movie was about to begin. I have to say, it was fun. Plus, Caleb sat through the entire 15 minutes, which is a pretty big deal. He was super tired, near tears, but sat through a short movie. (btw, we passed a family that was really tired but didn’t have the money to buy train tickets, so we gave them ours. We all were so happy that we could help someone else and that happiness gave us a little extra energy to get through the rest of the trip.)

4 hours was too long for Caleb and he was pretty miserable on the way out. He had to be carried for a while and tears were streaming down his face. We offered to take him to the gift shop; I offered him $50 that he could spend either at the shop or on anything else he wanted. He asked for some candy (I just paid for it); when I suggested he use the rest of his money to pay for the interactive globe he has been wanting for months, he instantly jumped at the chance. Again, here is Caleb, exhausted and overstimulated and he is making wise choices. I was super proud. Still am.

Overall, the 5 of us going to the zoo was about $150. This is definitely not something that we can afford every month; that said, I feel like we got our money’s worth out of the experience. We did bring all our own food and drinks, which makes a huge difference money-wise.

We had such a good time, we are looking into getting a zoo membership.
5/5 stars!

Pokemon Go

Caleb, who is turning 7 December 9th, is obsessed with Pokemon. There is a great big Pokemon world, and Caleb is fully immersed within it. He loves memorizing the different Pokemon, their stats, special moves, and evolutions. Pokemon Go does not play on any of his current electronic devices, so we play on my phone (Samsung Galaxy 7). Sharing my cell phone with Caleb takes a great deal of trust, but I also hover over him so that I can stop any unwanted behavior (like the time he sent hundreds of dollars to a dog breeder because he wanted a puppy).

Caleb is definitely a homebody like his father. I, however, am the adventurous one. I mostly like to plan ahead, but I also like to fly by the seat of my pants. I can basically bribe Caleb into walking around with me with the promise of Pokemon Go stops, gyms, and battles. Today, for instance, we walked around downtown Farmington (our home city) for about an hour, but we broke up it into a bunch of small trips; we would stop and sit if we were trying to defeat a gym or catch a bunch of Pokemon in an area.

Pokemon Go also gives something for Caleb and I to connect over. We have many, many conversations about Pokemon; we talk about our favorite Pokemon and where we want to go to collect them. At night, we go through maps of areas around us that have plenty of Pokestops or rare Pokemon. We even watch the TV show together, watch the movies, read the books, wear the clothing, and pretty much buy any piece of crap that has a Pikachu on it. Seriously, Pikachu is like a god to these kids! He is powerful but sweet, nice, and totally adorable; it is a pretty irresistible package.

While playing Pokemon Go, Caleb practiced a bunch of other skills without realizing it. Just walking alone helps strengthen his core, but not only that, he is learning to take in the world with his eyes, not his hands. He walks with me nicely; he has to look both ways before crossing a street or driveway; he practices using his peripheral vision to alert him to activity around him; he is learning about instant gratification (catching a Pokemon) versus delayed gratification (powering up and evolving Pokemon); and he is learning how to follow rules when playing a game. Pokemon Go also helps with reaction time and eye-hand coordination – this is especially true when trying to catch Pokemon or fight in a gym.

I have mentioned before that the studies done on children spending time with electronics have very specific results. I have heard other parents and educators make blanket statements about for how long a child should be able to use an electronic device; the truth is that the electronic devices only interfere with learning when the child is playing during educational time. Playing on an electronic device during their free time is not going to affect their learning. That said, Caleb doesn’t exercise enough. Shoot, I don’t either. It is funny because we both have weak cores; my stomach muscles are totally separated from pregnancy and Caleb has been working on his core since he was 2. So, do I want Caleb sitting at home, playing on his computer all day? Heck no. But, if we can play AND exercise at the same time, then it is fun. For more information on learning through electronic devices, I suggest any articles or books by James Paul Gee.

I would really suggest Pokemon Go for all interested autistic children and adults. There are so many stats to memorize and cute characters with whom you can interact, so there really is something for everyone. And the only way to hatch the eggs you catch is to walk around. So, we are walking. And we are having a blast.

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…

Vaccinations: YES!

I am so confused as to why people still believe that vaccinations cause autism. I’ve had parents corner me and preach about the evils of vaccinations; mostly I treat them like an angry wild animal where I try to avoid eye contact and slip away as quickly as possible.

Let me makes this perfectly clear. My son has autism. We also vaccinate him. There is no correlation or causation between autism and vaccines.

So, why do we still hear about the horrors of vaccines? One major contributor to that big bag of bull was Dr. Andrew Wakefield and his co-authors of a case study in 1998. Dr. Wakefield deliberately wrote a fraudulent article because he was working with a bunch of lawyers who were trying to sue doctors for causing autism. He was eventually found to be a liar and stripped of his medical license.

Even though subsequent studies have proven that there is no correlation or causation between vaccinations and autism, people still believe it. I find this interesting. I feel like there has always been this underlying tone of blaming the mother for a child’s autism.

At first, when children were first being diagnosed with autism in the 1940’s, the burgeoning theme was that “refrigerator moms” were to blame; basically, it was the mother’s fault because she didn’t give her child enough love. We have blamed what the mother ate while pregnant, what medicine she took while pregnant, what the child ate after they were born, and now, we blame the mom for giving their children vaccines.

It is so time we stopped blaming mother’s for their child’s autism. First of all, in order to blame someone for something, you have to believe that autism is bad and that you would want to change your child. I can understand how people can hate autism; there are many people with severe autism that may not have the quality of life we want them to have. For us, though, we are okay. Caleb is high-functioning and just simply amazing. He has said that he likes being autistic. He likes himself. How can I argue with that?

Caleb and I are lucky in many ways:
1) My husband has a job that pays enough so that I can be a stay-at-home mother.
2) I did my Master’s and Ph.D. work in Instructional Technology (how people learn), focusing on motivation.
3) My husband also has a Master’s Degree, so we both know how to do research and figure out if the information is true or not.
4) We three want to work together and help each other.
5) Caleb is insanely smart and will probably have a fairly normal life.

When Caleb was first diagnosed, I read everything I could about autism. What particularly struck me were how many people had to institutionalize their child because the child was violent. Caleb was diagnosed at 2-years-old; I had no idea what was in store for him. I didn’t know if he would ever talk, have a life of his own, find love, etc. Now that I see him growing at a velocity that just blows my mind. So, yeah, in the beginning, I hated autism. And I can totally understand why some people do.

People who hate autism have a difficult time, because we don’t really know how autism is caused. There is a new theory about the change being made while the child is in their second trimester, but still autism is defined by its symptoms. And when some people don’t have something to blame, they find something.

To be honest, when I found out about Caleb’s autism, I felt anger toward my husband; he has a sister with used to be called Asperger’s and I thought that his genetics were to blame. I feel so horrible that I used to have that mind set. Caleb is a blessing, and we love him as is. And to be honest, with his smarts, he has the ability to leave a real footprint on the world.

So, moms, this isn’t our fault.
Working moms: it isn’t your fault that you have to make money to support your family.
Stay-at-home moms: it isn’t your fault that can’t help financially support your family.
It isn’t our fault that our children are different.
The only fault to be found would be a) deprive your child of therapy, and b) deprive your child of vaccinations.

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’ed  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. 🙂