Sorry For My Absence

I have had to take a break from my blog because a family member was harassing me about my posts. I am still not comfortable yet to put new posts yet, but I will soon.

This evening I am driving to Kalamazoo for the Michigan Autism Conference (MAC) which is on Thursday and Friday. The kind people at ASK awarded me a “caregiver” scholarship because my son is autistic; the scholarship pays for the entire conference!

I am very excited for this opportunity! I promise to come back with new ideas, hope, and posts.

Hands Are Not For Hitting

When Caleb was between 2 and 3, he started hitting my husband and me. At first, it was intermittent and not really bothersome. Then came the smacking, the punching, and the pulling on hair. We tried so many interventions: token economy, time out, books about hitting, talking about hitting. reminding him that hands are not for hitting when we think he is about to hit.

This is where my post is going to take a turn you probably didn’t expect.

My son hitting me made me realize that I was not over the physical and emotional abuse that I survived from the time I was born until I was 18. In retrospect, the emotional abuse remained a part of my life until just a few months ago when I told my family I don’t want them in my life.

I am a survivor of childhood emotional and physical abuse.

As a youth, I attended Al-Anon meetings and therapy, and there I learned about the probability of me turning out like my mother or father. My father was an alcoholic and drug abuser (everything from pot to methadone), so I had a high probability of becoming an substance abuser; but I was also likely to become a physical and emotional abuser as well. The idea of becoming my father is probably the greatest fear I have had my entire life.

When I was 21, I adopted a cat. I thought that the first step toward trusting myself as a parent was taking care of a pet. I adopted an adorable orange tabby named Murray. He was 4 at the time, and all I was told was that he was given up because his owners had a baby. But, that wasn’t the whole story. I would be holding Murray, petting his head, and we would be purring up a storm when suddenly he would scratch the heck out of my face, arms, and chest. He would freak out on me and, because I had tiny knives cutting me, I pushed him away from me. This happened again and again for a month. Finally, after recognizing that this wasn’t working, I came to the difficult conclusion that I would have to have Murray declawed. After his procedure, Murray would attack me, but I knew it wasn’t going to hurt; I was able to just soothe him and not react as he went ballistic. It was the right choice, because after a couple more months, Murray completely stopped having freak outs. He became my best friend for 16 years until he passed away on December 30th, 2017.

After I was comfortable being a mother to Murray, I adopted another cat. I knew that Murray was lonely, so I got Mina from the local rescue shelter. She was beautiful and tiny and didn’t know how to make a crying sound until she was 3. Murray and Mina loved each other, however I pretty much just put up with Mina. She was a bit evil; she would wake me up in the middle of the night by climbing onto my nightstand and turning off my cpap machine. However, I never hurt her either.

A month before my husband and I got married, we decided to get a dog. Because we knew we wanted to have children (and because that was the kind of dog my husband had growing up), we chose to get a Golden Retriever. We found this amazing breeder in Essexville – the dogs were gorgeous and the family had 4 children who would also handle the dogs. These dogs were all so well behaved and loving. That is where we chose the Light Pink Girl (the color of her collar), Penny.

Again, with Penny, there was no hitting. We would dominate her if she got too rowdy, but really, again, it all seemed so fine.

Fast forward to me, 36, with two dogs and two cats, and I was having to suppress this almost natural reaction to hit my child back. I was horrified with myself. When Caleb stop hitting, I thought I was okay. But I wasn’t.

It wasn’t until January of this year that I vowed to never lay my hands on anyone again. This was harder than I thought. I realized I still had issues. Okay, fine: I had more issues than a newsstand.

Caleb and I started going to therapy at the same time, but we each see different therapists. And I can tell you, Caleb and I are both in a really transformative part of our lives. Caleb is suddenly a brand new person who actually cares about pleasing others, especially his mom and dad. He is smart, driven, creative and happy. He has basically the entire basement and he calls it his “safe space.”

Caleb and I also grew really close this summer. That is when I started thinking about my childhood. I don’t understand why I love my child in a way that my mother and father didn’t love me.

My therapist has diagnosed my father as a sociopath. He was evil. But my mom knew what was happening at home. In a conversation with her over the summer, she posed me this question: Should I have broken up the family and left your dad? That implies that the family was not broken with me being abused.

After my father died, relative after relative came up to me and told me how sorry they were that my dad hurt me. They saw it happening and did nothing, and now that he was dead, they felt freer to talk about it? That is the thing – my abuse was not private. I was often hit in grocery stores. I was hit at family events. I was hit in plain sight of my mother and sister. I even told my school psychologist that I was afraid to go home; I was 7-years-old and nothing happened.  Nobody protected me.

I am learning how to let go of the past. It isn’t easy. Like I said, I’m still trying to make sense of a situation that will never make sense. There will never be any logic as to why I was hurt.

The last email I got from my mother was about her next vacation to New York and working on her sewing hobby. She and her husband are rich, and they don’t help us at all with any of Caleb’s medical bills. My son isn’t even allowed in their home because they don’t want him touching their stuff.

Seriously.

Caleb cannot go into my mother’s home.

I don’t want to go back down that rabbit hole with my mom where we all pretend that everything is okay. It is not okay. I finally have real unconditional love in my life, and it is amazing. I am so thankful for my husband, my son, and my husband’s family.

I’m now 39 and an orphan, which is strangely liberating. I am scared because I have hung on to my mother’s scraps of love for so long; letting go because I deserve better is the only option.

So I broke the pattern.

My mother, who doesn’t like emotions, was raised by my grandmother and grandfather who also didn’t like emotions. My grandpa used alcohol so avoid dealing with anger. Same with my dad’s dad. There was coldness and distance and alcohol abuse.

And I broke that pattern.

Every day I make sure that I tell my husband and son that I love them. And I love them unconditionally. I tell Caleb that he isn’t bad, he just made a mistake. I tell Caleb how excited I am to see him when I pick him up from school. I give him hugs and love on him, but also allow him some private time. I push him academically because I know that he is a smarty-mcSmarty-pants. I say “I,” but I should say “we.” My husband is right by my side, giving him love and stability; my husband is the rock, I am the fire. And together, we work. We make sense to each other and know how to treat each other. We give each other the benefit of the doubt and strive to meet goals together.

I am a better parent than my mom, dad, or sister. In fact, right now, I am kind of crushing it. (I know, have some humility.) We have a new puppy that bites, and I don’t get angry at all. Yes, I still go to therapy and I still need therapy. I am a flawed individual who has overcome a lot to be in the happy, stable place that I am today. I broke the pattern. And that means something.

I Don’t Sweat the Small Stuff

A lot of people are curious how I manage to stay sane. To summarize my household, I have a husband who has migraines and ADHD, a son with autism, migraines, ADHD, and sensory processing disorder, I have an older dog, Eli, who is awesome, a puppy who thinks he is a land shark, and me, the eternal migraine sufferer who tries to keep this house running.

When I think about it, it seems like a lot of stuff to handle, but honestly, somehow we make it all work. I think the biggest issue my husband and I worry about is Caleb’s health – intellectually, emotionally, and physically. It is all about prioritization.

For instance, our leather couch is missing leather from a part of the left side armrest from when Eli was a puppy and chewed everything. He chewed up our new bedstand (which is wooden), all my flowers and flower pots, toys, clothes, and about a million binkies which always showed up in his poop. *gag* At first I would get upset because I had never experienced another animal destroying my property like that. But the problem was, if I let the destruction upset me, I would be upset for the rest of the day. Pretty soon I was always upset. It got to be ridiculous. I couldn’t enjoy my day or my dog (Eli is mine. All mine.) because I was upset.

Finally, I decided to stop being upset. It was really that easy for me – a switch I turned off. I was no longer gonna sweat the small stuff. But, how do we figure out what is small and what isn’t? How do we track and give feedback to ourselves?

For me, the big stuff was a matter of whether or not this had a real impact upon the health and safety of my family. That was the big question, the deep core issue. If the answer was “no,” I would find a way to ignore it, redirect it, or fix it but not get emotional about it.

Some examples of the small stuff:
*getting peed or barfed on
*superficial destruction of furniture or household items
*Keeping a perfectly clean home
*Making the bed, ever.

Examples of big stuff:
*Hitting or any sort of violence
*Threats of violence
*Angry words
*Caleb going to bed before 9pm
*Caleb takes his anti-migraine medication
*Caleb stays buckled in his car seat until I tell him he can get out of his seat.

I don’t expect anyone else to do what our family chooses to do. My mother and her husband are very protective of their home so Caleb is not allowed over. I mean, yes, I find it hurtful, but I have to let it go and realize that maybe to them, the furniture is the big stuff. I have to respect that.

We all have our “big stuff.” For me, it is really important to have a loving home that is cozy, inviting, and not dirty. It is important that we never use our bodies or words for violence. In fact, I tell Caleb and my husband multiple times a day that I love them unconditionally. I stress to Caleb that there is nothing he can do to make me stop loving him. I mean, if he hits me, I give him a time out; the punishment isn’t because I am mad at him but rather because he needs to learn that violence is never okay. And the “no violence” rule goes for everyone in the house, including the dogs.

Another reason that violence is something we won’t tolerate as a family is because I was physically and emotionally abused as a child. I never knew what unconditional love was until I met my husband, and then later, my son. Every dollar, every favor, came with a price; my family tried desperately to control every aspect of my life. I don’t hate my parents or grandparents. In fact, I feel bad for them because I feel like I have learned so much from my husband and child about the person I want to be. I was a lot like my mother, to the point it was a running joke. But, I quickly learned that we were very different; my son comes first in my life, no matter what.

So, yes, I do not talk to my parents or extended family. Actually, the funny part is that the only person in my family that I do talk to is my dad, and he has been dead for 9 years!

My side of the family doesn’t share my values or my priorities. Family get togethers used to include different people yelling at Caleb, freaking out over everything he does. It became overwhelming for everyone involved, including us. My mom and sister and their families live in big, beautiful homes. We are talking crown molding, expensive appliances, more than one bathroom, jacuzzi tubs, etc. We live in a house that is about 1,000 sq ft. Why? Because it is more important for me to be a stay-at-home wife and mother and take care of Caleb than it is for me to work a job and make more money. We live cheaply, eating out maybe once or twice a month. My husband and I get our groceries from Costco and Aldi so that my son can have the gluten-free/casein-free food from Whole Foods.

I guess what I am getting at is that in our family, Caleb comes first. If we have additional kids down the road, they will also be our priority. So, no, I don’t have plates that match, most of our glasses are plastic, and 99% of the stuff we own we got as hand-me-downs. But we have membership to the Hands On Museum (which I really need to write about), we go to the zoo and aquarium, and we buy a ton of books. Yes, I buy used clothing for Caleb, but we also make sure he has a couple Pokemon shirts so that he is happy. (Hint, I have Caleb’s measurements written down. Wherever I go, I take a measuring tape with me, so I measure how long it is, etc. Different brands have different shapes, so this helps a lot when buying used clothing.)

My husband taught me about living on a budget, and now I cringe at the idea of buying name brand anything unless it is for Caleb. I am so thankful that I have people in my life who have helped me becoming a more easy-going person. I probably will never have fine china, but that is okay with me; chances are, I’ll be too busy having fun with my family to notice.

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.

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.

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.