Olde Orchard Pediatric Dentistry – A Review

Like most autistic kids, Caleb has always fought us on the tooth brushing. We tried when he was very young, but at that point, we had bigger battles to fight. We were trying to figure out why Caleb lost his language skills. Then came the onslaught of therapies, one after another after another. I was basically a chauffeur for my son and his many therapists. When I finally got home, my energy was dwindling, but still, we did even more therapy together. Families that are still in that circle of exhaustion have no time for precious teeth issues. I know it sounds crazy, but it is true; people who are on the outside looking in don’t understand the burnout that comes with autism.

Thankfully, Caleb is in a place mentally and socially that we can take care of his hygiene. That includes regular bathing (kinda regular), but also brushing his teeth and hair, and cleaning and moisturizing his face twice a day. Caleb has keratosis pilaris, so we use a Burt’s Bee’s facial cleanser and we are just now trying a new serum: Serious Serum.

When we first started brushing Caleb’s teeth, we noticed there was blood in his spit. We checked out his mouth, and yup, he needed a visit to the dentist. His pediatrician suggested we go to Olde Orchard Pediatric Dentistry, and I am so glad that we did.

When you first enter the building, you notice how airy the waiting area is, with a domed ceiling and tons of natural light streaming in. In the middle were these large tree booths that were comfortable, but also gorgeous.

To the right was a smaller waiting room with just chairs and books. To the left was another small waiting room, but this one had a large flat screen television mounted on the wall, interactive toys, and Duplos, as well as more children’s books. Everything was clean and well taken care of.

Caleb had a meltdown the whole ride to the dentist, and then while we were inside the waiting room. The staff didn’t bat an eye – they deal with autistic children on a regular basis and know how to deal with the kids. The staff offered help when I was at the desk, but they let us deal with Caleb until we asked for help. It can be tricky for people to know what to do, but they were really good about knowing when they had an opportunity to help; when the receptionist heard that Caleb loved My Little Pony, she jumped up and put the My Little Pony movie on the television.

Caleb was still crying and whining as we were greeted by the dentist’s assistant and led down the hallway. I have never seen a prettier hallway. Seriously, they even had beautiful wooden tree cutouts with the room numbers on them. Each room has two doors, one for us, and then a slightly smaller door that the assistant and slip in and out of.

We were greeted by Dr. Maxwell, and she was totally chill. She knew how to talk to my husband and me and then how to talk differently to Caleb. She let him touch almost everything, and explained what she was doing as she was doing it. Within minutes, a previously scared and crying Caleb was happily lying down with his mouth open while Dr. Maxwell did her exam.

First of all, they are gentle. Even better: they are super fast. Dr. Maxwell knew how much to get done in a single session in order for Caleb to have a somewhat enjoyable experience; the last thing we want is for Caleb to hate the dentist and dig his heels in even farther.

Not a problem.
Caleb actually asked to stay. He didn’t want to leave the dentist.

Yes, Caleb has cavities, but I didn’t feel judged. I feel guilty, of course, but I also know that I am a good mother and I try really, really hard. Like, really hard. I also didn’t realize how easily Caleb can get cavities; my teeth have extra enamel on them so while they are a little yellow, I have never had a cavity in my life. My husband, however, has worked hard to keep his teeth in good condition, but he has cavities as well.

Dr. Maxwell created a schedule for us in order to come in so that Caleb can have his teeth treated. We opted for 4 short visits using Nitrous Oxide so that Caleb doesn’t feel pain and is more compliant.

After Dr. Maxwell finished her evaluation, Caleb was able to pick out a gift. He chose a righteous mustache that made him look like Mario, so he was over the moon.

I am really thankful to have found a dentistry that knows how to take care of autistic children. I would recommend Olde Orchard to any child, autistic or not; there were plenty of neurotypical children around us.

Olde Orchard Pediatric Dentistry is located in Novi, Michigan, near the Sears at Twelve Oaks Mall.

*Note: I did ask for permission to take photographs of Caleb and Dr. Maxwell during his visit. I also asked if I could review them. They were very supportive, taking a minute to hide any patient data so that no HIPAA violations occurred. I did not receive any compensation for my review, nor was it swayed by anyone.

Why I Don’t Care About What Others Think

At my baby shower, my mother-in-law gifted me a puppy that would clip around the chest of a child and a tail that acted as a leash. I was horrified. I believe my exact words were, “She knows I am giving birth to a person and not a dog, right?”

Ah, how smart we are before we have children. I believe I also made absurd statements like Caleb would only get books for the December holidays and that we would never let anything Disney into our house. HA! Oh, and I scoffed at the idea of a family bed. Yeah, I was super smart.

Fast forward 7+ years, and my son has a monkey backpack with a tether. And by tether, I mean leash. Yup, I actually bought him a dog leash that blends perfectly with his backpack so he could have more room to roam. And my son loves wearing his monkey.

Caleb is a flight-risk. When in busy parking lots, I hold on to his hand for dear life. We do have handicapped parking, and we do use it; I can’t tell you how many times I have had to carry a 40lb+ sobbing Caleb out to the car. Also, having a shorter trip from the car to the safe area of the store is reassuring for me.

Caleb started wearing his monkey backpack before he could talk; Caleb didn’t really talk until he was 3, and even then it was slow going. He also couldn’t truly understand the words I was saying; even if I told him a million times to not leave my side, it doesn’t mean that he knows exactly what that means and what mistakes look like. As Caleb’s language expanded, so did his understanding of the spoken word. With the monkey backpack, we both could focus on trying to take in the stimuli around us. We forgot about the restraints.

I cannot tell you how many people have yelled at me about my son and his leash. I have had people bark out windows as they drive by. I have had grown men come up into my face and challenge my parenting choices. I have had so many people roll their eyes at me.

People question what we feed Caleb, because yes, he has a bit of a belly. People question our token economy. People question how much or how little we push Caleb. People question if he should have unfettered access to electronics. People question why Caleb still cannot dress himself. People question why I let my son have a meltdown in the middle of the store and not be mad at him or punish him. People question if we are spoiling Caleb. And I don’t care. I care about what my husband and son think and that is it.

I do care about facts and information. I care about research that drives our parenting choices. I am willing to learn and change, because in the end, what we all want is for Caleb to be successful and happy.

I do ask the opinions of friends and family, but in the end, my husband, Caleb, and I make the final decisions together. Caleb still likes the freedom of wearing “Monkey.” We take walks, searching for Pokemon; having two hands free to play is incredibly helpful.

That said, Caleb is growing and we aren’t needing to use Monkey as much. When we walk in a downtown area, I insist on Monkey; one time eating dinner outside in downtown Chicago, Caleb ran into the middle of the street and all of us had a heart attack. I ran after him so fast, my heart beating out of my chest. My child still doesn’t have the sense to look for traffic before crossing a street. His life is worth more than my pride.

I mention pride because there are many mothers who don’t want to admit that their child is different or needs special accommodations. I grew up in a crazy, abusive, messed-up home and we always had to act and dress like everything was perfect. The idea of it makes my whole body react.

I am proud of my son, exactly the way he is. He works so freaking hard every single moment of his life. When he makes mistakes, you can see the panic in his eyes. There is not a mean bone in his body. Yes, he LOVES to push buttons, but so did I when I was younger. I mean, I was 16 and he is 6, but that just means he is advanced, right?

I guess what I am getting at is:
*Caleb was born at 33 weeks and looked like Walter Matthau

*Because of his time at the NICU, Caleb had a flat head. He had to wear a special helmet

*Caleb has had more meltdowns at Target than I can count
*I have had to chase down Caleb in the middle of Costco, leaving my cart completely abandoned.
*Caleb is very particular about his looks, which aren’t conventional

*Caleb is the king of awkward social interactions. During our garage sale, he was such a pushy salesperson that he actually scared people away!

And I am not embarrassed one bit.

It is true that when you love someone, you have to love all of them. The good, the bad, the ugly – they all come in a wonderful package. So, yes, my child will flap his hands and require a leash and say really inappropriate stuff. But, he is also the kindest, smartest, most creative person I have ever met and I have no doubt that Caleb will have a real positive impact upon the world.

And when in doubt, I just remember that I have to be the role model for Caleb. I want him to see me take the high road and focus on what is important. And that is why I can say that when it comes to how my husband and I raise Caleb, I don’t care what anyone thinks.

 

BTW, you can buy Caleb’s backpack here.

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!

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’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. 🙂