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.

Secure Your Own Mask Before Helping Others

Having an autistic child can be exhausting and sometimes even a little soul crushing. Caleb doesn’t have the people-pleasing desires that usually fuels children to behave; while he cares about what we think of him, he usually acts before he thinks. Of course Caleb wants me to like him, so he usually recognizes bad behavior and asks for forgiveness after the fact. It isn’t personal; Caleb has problems with impulse control.

Usually when Caleb has a migraine, his impulse control is pretty much nonexistent. That is when I have those really bad days where you look at the clock and it seems to be running almost backwards. The days when you are white-knuckling it until bedtime.

I have found that on those days, I am also not at my best. I probably have a migraine as well, so dealing with a completely unruly child is stressful. In order to stay sane, I have to take care of me. There are a few things Caleb and I do in order to maintain our mental health.

Feelings Therapy: Caleb and I both go to therapy at the same practice at the same time. Once a week, we both take 55 minutes to work on ourselves. This is so good for us; Caleb is usually in a good mood after talking to his doctor and I usually have had a good cry and feel like a weight has been lifted off of me.

Timeout: Timeout can be a very effective tool when used properly. The most challenging part is finding a place for time out. I know a lot of neurotypical kids who are able to sit in a seat for 5+ minutes; this is not a reasonable expectation for Caleb. We tried just having Caleb stay in his bedroom, but we got into a smearing issue. (For those that don’t know, smearing is, well, here, you can read about it.) *gag* So, we ended up using the treehouse in our living room that has a removable ladder. It is high enough off the ground that Caleb will not jump out. And yes, he even once smeared in there and it took hours of scrubbing to get that sucker clean.

Now, we still use the treehouse, but we don’t take away the ladder. The rule for how long timeout should last is the child’s age plus 1; Caleb is 6 so he has a 7 minute timeout. During timeout, we do not engage with Caleb. In fact, this is when you go into another room, set a time, and spend 7 minutes relaxing, doing something for you. I will take the time to make some coffee or ice my neck. The point is, we need timeouts too. I have even given myself a timeout when I am overwhelmed; I will go into the bedroom and close the door. Caleb can live without being supervised for 5 minutes, and those 5 minutes just might keep me sane.

Exercise: Not only do you feel happier and stronger when you exercise, it also helps melt away the stress. A lot of my exercises are to strengthen my core, which is exactly what Caleb needs, so we exercise together. Another benefit to exercise is that Caleb is tired and calmer afterwards. For core strengthening exercises, I use this website as a reference.

Another good incentive for exercise is Pokemon Go. As a family, we have taken long walks downtown or at one of our many local parks in order to catch Pokemon. In fact, as soon as I am done with this post, we are going to downtown Farmington to Pokehunt. It is surprising how far you will walk without realizing it; walking is good exercise, but strengthening Caleb’s core is our priority.

Friends and Family: You need friends to talk to, and yes, cry with. Friends and family who understand our family dynamics are often very helpful and compassionate. I have recently decided to be completely honest with my friends about my life, instead of feeling like I have to sugarcoat everything to make people comfortable. Yes, the friends and family I depended upon before Caleb are completely different now. My husband’s parents are the most amazing people and I even use his mother as a guide for myself and my behavior. I have learned to lovingly detach from people who don’t want to understand Caleb and our life. Right now, I have 3 really good friends (not including my husband), and getting out of the house and hanging out with them seriously refreshes me. Sometimes I need to get away so that I miss my family and I really want to be with them. Cause, let’s face it, there are many times when all we want is just a moment of peace. We deserve more than a moment; we need hours. In order to have a social life, my husband and I work together so the other may go play. However, we are always back home by 7:30pm because bedtime rituals are super important.

Don’t Sweat the Little Stuff: I haven’t dusted my house in 2 weeks. Maybe 3. I swept a few days ago. Laundry is piling up, I have dishes drying that need to be put away, my bathroom floor is disgusting, and that is all going to have to wait. Having a super clean house is not even close to the most important thing in Caleb’s life. In fact, my husband and son would be perfectly happy living in filth. What matters is that I don’t kill myself trying to take care of everyone; that only leads to me being overwhelmed and cranky. That doesn’t help anybody. So, not stressing myself out makes me a better person.

My main motivation for my positive attitude is not only my health, but also Caleb’s. Caleb gets very upset when I am unhappy with him. Caleb doesn’t think about his actions until after he has already done them; this distinction is important because he really does want to be a good kid and make me happy. I have to remind myself this all the time. All 3 of us deeply love each other, and in order to excel, we need to remember to be kind to ourselves as well as others.

 

Personal Hygiene

Raising an autistic child who also has Sensory Processing disorder, it can be a challenge to make sure your child is clean and nice looking.Every day at 8:00am and 8:00pm, Caleb does basic grooming, including brushing his teeth, bathing, skin care, and hair care.

Brushing Teeth: Brushing Caleb’s teeth is always difficult; he doesn’t know how to keep the toothpaste and saliva in his mouth, so it just dribbles out. Rinsing out his mouth also requires coordination that doesn’t end very pretty. Caleb sometimes gags with the toothbrush in his mouth; two days ago, I was hosed down with vomit when the toothbrush gagged him.

We have tried vibrating toothbrushes, and in the beginning he loved them. Now that he has been sensitive to gagging, he doesn’t want it. We also make sure that his toothpaste doesn’t have fluoride because he does have a tendency to swallow it.

Bathing: Last summer, I signed Caleb up for private swimming lessons at the local YMCA. At first, it was wonderful, but then he started getting really upset when he had to rinse off in the shower before going in the pool. Eventually, the shower was a deal breaker and he stopped wanting to go swimming. Then he refused to even take a bath. For six months, we had to wet wipe him down everyday. It was frustrating, but my husband and I knew that if we pushed him too hard, he would never bathe again.

Six months after him swearing off water, I was able to persuade him to take a bath with the promise of a lavender bath bomb. I don’t know why this was the turning point for him, but he said yes. Since then, I buy the Whole Foods bath bombs, mostly the lavender scent, and I keep them on hand until I need to get Caleb in the bath.

Skin Care: Caleb has keratosis pilaris (yes, because he needed MORE issues), so it is important that we clean his face and use special face cream. We use Burt’s Bees oily to normal skin face wipes; Caleb loves the grapefruit scent. They are gentle enough for Caleb to use himself, as I’m not concerned about the wipes going near his eyes. After the wipes, we use a cream by KP Elements that really helps with the bumps on his face. Finally, Caleb has some chap sticks that he uses.

Hair Care: Caleb has long hair because a) his daddy has hair down to his waist, and Caleb wants to be like daddy, and b) he hates haircuts. He gets anxious just talking about hair cuts. So, we let him have long hair on the condition that we brush it twice a day. We have to be very careful and slow, but still Caleb will complain through it. He is very sensitive, and just because it wouldn’t hurt us doesn’t mean his pain doesn’t exist. We try very hard to always start at the ends and slowly work our way up. We want Caleb get used to hair brushing, even though it bothers him, because appearance is important.

I also once a day apply Argan oil to his hair. It is important to get oil that is 100% pure organic oil; we like PURA D’OR Organic Moroccan Argan Oil. It is fairly inexpensive and doesn’t have a strong scent. Oil that is not pure or organic can have an off-putting scent, which can be a deal-breaker for Caleb.

We try to explain to Caleb that people judge other people by their looks. It isn’t right or fair, but we all do it. Just because Caleb is autistic doesn’t mean that he gets a pass on how he looks. He needs to conform to some social norms, and it is important for him to start getting the routines down now so that when he is older, he just does it automatically.

Gluten-free/Casein-free Diet

When we first learned that Caleb was autistic, the first thing my husband and I did was research everything and anything that we could do ourselves to help Caleb. We decided to try everything that seemed like it might work, because what it did? So when we read a lot of anecdotal evidence that suggested a gluten-free/casein-free diet. We thought that it was a fairly easy and inexpensive food plan to try, so what did we have to lose?

It took about 2-3 weeks until we noticed a difference, but what a difference it was! Gluten and casein don’t cause allergy symptoms and don’t affect the intelligence of the child. However, we found that Caleb’s behavior was much more under control without gluten and casein.

It is hard for Caleb since he cannot eat the same food as his friends, but we have found some really delicious gluten-free/casein-free foods; look under the “reviews” section to find which food items are the best.

Twice in the past few years we have tried letting Caleb have dairy, and it ended in disaster. His behavior was so affected that the teacher contacted us to see if something was wrong at home.

There is no true evidence that a gluten-free/casein-free diet has any affect on kids with autism. This has to be a personal decision made with your family and doctor. In our house, we have found it to be worth it. After all, so many problems with autistic people involves gut bacteria so it makes sense that food they ingest will have an imp