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. 🙂

Family Bed

I mentioned recently that at our house, we all sleep in the family bed. Well, not all as the puppy is still being crate trained. It isn’t easy to add a new dynamic into your sleep routine, but I’m actually very happy with our results.

When I was young, I developed insomnia. I was in elementary school, so it is not like my life was so stressful. Sleep seemed like my enemy; I had to beat it into submission. Or, at least I tried. Every night, after staring at the ceiling for what seemed like forever, I would get out of bed and complain I was tired. My father thought I was trying to get away with something; to be fair, I was so nervous when I left my bedroom that I was always smiling. I was sending mixed signals and my father wasn’t invested enough to try and help me.

Basically, I look at what my parents did, and then I do the complete opposite. He is often an equal partner in our lives.

From October 2016 to June 2017, Caleb would wake up in the night and craw into bed with us. Then when my husband’s family took us on a trip to Chicago, Caleb slept with us. After that, he was hooked. And now, so am I.

Caleb also has trouble sleeping, so we have a bedtime routine at 8:00pm. It is common for autistic people to have sleep issues, and I completely understand how frustrating it can be.

After Caleb is cleaned up and into pajamas, we turn off all the lights, put away electronics and watch Gilmore Girls while all 3 of us are cuddling (4 if you include our dog, Eli). There is n pressure on him, so we are able to remove the anxiety about falling asleep.

I would recommend a family bed for anyone with a child on the spectrum or just has sleep issues. It is so important to Caleb; he can’t handle even the threat of sleeping in his own bed. And the sweet sweet cuddles are all worth the kicks to the face you will happily endure.

 

 

Are Parents of Autistic Children More Likely To End Up Divorced?

Easy answer: no.
Real answer: it is complicated.

This post is not a particularly easy one to write. I like to look like I have it all together, I know how to handle anything that comes my way; the truth is that I have my struggles, just like everybody else.

Everyone in our house has their issues:
*Caleb is autistic
*My husband has ADHD
*I have chronic migraines and baggage from my childhood

The divorce rate for couples when one partner has ADHD is about twice that of “normal” couples; mix that strain with the added complications with having an autistic child, and you can lose your darn mind. And I do. Don’t get me wrong – there are days when I have to ask my husband to take over because otherwise I’m going to lose it. To be fair, there is no evidence that having an autistic child leads to divorce; in fact, the divorce rate of families with an autistic child was about even with families who have neurotypical families. This is explained by 1) couples with autistic children tend to be older, and 2) stressful situations can actually cause families to be closer together and weather the storms together.

I know that I married my soulmate. I know that Caleb is one of my two favorite people in the whole world, and I think he is my soulmate as well. Hell, I think my best friends and my dogs are my soulmates, so I may be overly sappy. I try to remember the love that I have for my husband and son, especially in the tough times.

When I turned 30, I decided it was time to do something that I had wanted to do for years, but was always too scared to do: get a tattoo. I’d known what I’ve wanted since I was a teenager, but over the years my ideas matured and I ended up getting a sort of trinity on my back – a trinity of what is important to me: “honor” (right shoulder), “trust” (left shoulder), “love” neck, “lifeboat” (under “love” on neck).

My family is my lifeboat. Together we sink or swim. Together we can survive the bad times and then revel in the good. I try to treat others with honor, love, and trust, but especially my family.

One thing that my husband and I are really working on (and I will probably repeat this a lot) is giving each other the benefit of the doubt. He didn’t answer my phone call? He must have not heard it or he is very busy. He didn’t mow the lawn? Maybe he isn’t feeling well. We have been working on this concept for about a year, and we are still trying to remember it. It is so hard because in the moment, I have real feelings that I want to express. I need to remember to check myself.

For instance, today, I totally chewed out my husband for not picking up his phone when I called him a couple times. This is a trigger for me because my husband has a tendency to not pick up his phone. He worked from home today, so I knew he wasn’t in a meeting. I got cranky. Turns out, I forgot to take my afternoon migraine pills. And it was 4:30pm and I hadn’t eaten yet today. I was tired, hungry, and in pain.

When my husband finally put his foot down and demanded that I take care of myself, I did. And then, boy oh boy, did I feel like a jerk. Gosh, why did I overreact so badly? Why did I forget to eat? And I forget to eat a lot. I have alarms that go off when it is time to feed the dogs, my son, my husband, but not myself. I need to remember to take care of myself so that I don’t become an irrational, crazy B.

All 3 of us sleep in a family bed because of Caleb’s sleep issues (which I will get into later), so my husband and I can’t really be romantic a) in our own bed, and b) until Caleb has fallen asleep, which is around 9, 9:30pm. My husband and I use the spare bedroom as our little love shack (dear visitors: I promise to put on clean sheets.). It is really important to take time out to be affectionate with each other. And I am not just talking about the dirty stuff. Sometimes we just cuddle and talk about our days. The dirty stuff is important, don’t get me wrong. But, it isn’t everything. Staying connected with my husband emotionally, intellectually, and physically are all very important for us in order to have a strong family bond. When my husband and I are happy, we are such better parents, and then Caleb is happy too.

We are building relationships that are going to last our lifetime; something so important deserves special care and attention. I think Jackson from Gilmore Girls said it best:

JACKSON: You know what I love about farming? The commitment. [Chris nods in agreement] No shortcuts, no quitting. You have got to be there for your crops morning, noon, and night. I mean you can have the greatest soil and perfect seeds, but if you are not 100% committed, you might as well pave over those 32 acres and build yourself a strip mall. You know what I mean.

CHRISTOPHER: It’s a lot of responsibility.

JACKSON: It sure is.

CHRISTOPHER: It sounds like you really love farming.

JACKSON: I do. Sookie and I, we both do.

CHRISTOPHER: Me too.