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.

Why “Autism Happy”?

autismHappyPost

One day, my husband was working with Caleb on saying nice things about people. Caleb said what he liked about daddy, mommy (me), and himself; he said that he was smart, a good helper, and autistic. I had always seen autism as something that Caleb has to overcome; I never even stopped to think of it as a good thing.

I love that Caleb embraces his autism. We talk about it all the time, and talk about some feelings he may have and how we can deal with it. For instance, I asked my son what I should do when he has a meltdown. It wasn’t until he was 6-years-old that it dawned on me to simply ask my child how I can help him. Why did it take me so long? Btw, Caleb told me that he wants me to sit down next to him and tell him that I love him. Boom. done. easy. yay!

Caleb sees autism as “a great thing.” He doesn’t want to be neurotypical. When I first learned about Caleb’s autism, I mourned the loss of the son I envisioned having. I quickly moved into “fix it” mode; my husband and I did everything we could to help Caleb “catch up” before he hit 5-years-old. (For some reason, after 5-years-old, the brain isn’t as efficient at learning as it is from newborn to 5. So, getting the right information and seeing the appropriate behavior before 5 is so important). I am glad that I helped him as much as I did. Well, we did. But, I think I like Caleb just the way he is as well.

I think I like his autism. I’m not sure, and I am okay with that. I don’t dislike it. I mean, yes, there are days when I am going to pull out my hair and curl up in the fetal position until help arrives. But most of time, my relationship with Caleb is downright lovely. He is next to me right now. I am double-checking with him on some of the specifics of the post. He knows all about this blog and reads it.

I need to be the mom that Caleb needs, and that is a mom who is a proud autism mom. And I am. Trust me, ask any of my friends and they will let you know that I am super proud, if my jewelry and bumper stickers don’t tell you first. And honestly, I have no idea what I would do with a neurotypical child. I have only one child, Caleb, so parenting a neurotypical child is completely out of my wheelhouse. I love keeping a schedule, I love planning ahead, and I love the stuffing out of my son.

So, yes, we are autism happy.
I hope you are too.
🙂

Behaviorism, Positive Reinforcement, and Unintended Consequences

When dealing with Caleb, I have found that I really rely on behaviorism. Because we have no real way to find out what is going on inside his brain (he doesn’t have the skill set to communicate well about his feelings), we have to treat it as a black box. Performance is our primary way of assessing Caleb’s abilities and evaluating success.

One of the biggest pitfalls with using behaviorism is that most people don’t understand the difference between rewards, positive reinforcement, and incentive systems. So, here are my operational definitions:

*Rewards: anything given to a person in hopes of getting that person to learn or extinguish a behavior.
*Positive Reinforcement: an action, stmuli, or gift given to a person that will encourage the person to either learn or extinguish a behavior. Unlike rewards, positive reinforcement guarantees success. Well, for a while, anyway. Then you need schedules of reinforcement, but that is a whole other post.
*Incentive Systems: this process is about creating an atmosphere that encourages motivation within a person. This means that like positive reinforcement, you are aware of what is important to the subject. However, positive reinforcement in contingent upon behavior  whereas incentive systems are in place before the person performs, and will continue to exist regardless of performance.

We do a combination of positive reinforcement and incentive systems. Our house is very Caleb friendly, as one can probably tell by the treehouse in our living room. Caleb has access to toys, electronics, books, and some art supplies, so he doesn’t have to ask us for everything. However, we do use a token economy a lot, and that is straight-up behaviorism and positive reinforcement.

There is one more pitfall when it comes to behaviorism: unintended consequences. For example, whenever I got into trouble as a kid, my punishment would usually include cleaning. I did a lot and lot of cleaning. We had 4 darn bathrooms in our house; there was always something that was in need of a good scrubbing. However, the unintended consequence my parents didn’t see coming was that for a long time, I hated cleaning. Even well into my 20’s, my house was a pig’s sty.

Now, as a mom, I definitely have more of a nesting mentality overall; I actually clean all the time without being asked and without negative feelings. But it took decades to get there.

Punishment is a very tricky process. Again, you want to encourage good behavior and extinguish bad behavior. That is kind of the beauty of a token economy; you can earn or lose stars and it isn’t me that is doing anything, as I am simply moving the stars he lost or gained. We do use timeouts, but only for when he has used his hands for hitting (this book is great for hitters). Plus, once we got into the habit of earning stars, Caleb has seen their value and really cares if he earns them or loses them.

Right now one of my main goals is for Caleb to be able to walk with me without me needing him to wear his monkey backpack (skiphop monkey backpack), and for him to behave when we are out shopping, ie, walking with my husband and I and not running off, not falling to the floor, not grabbing things off the shelf, etc. We took a long nature hunt yesterday, and Caleb was able to stay with us for the most part. He earned 7 stars for just staying close to us.

My recommendations are:
*Make sure that you identify the behavior you want to change
*Identify the difference between the “what is” and the “what should be”
*Put together an incentive plan that involves something important to your subject (ie, Caleb loves electronics, books, art projects, and going on family trips).
*Discuss with your family how the stars will be earned or lost; everyone needs to be on the same page so there is no confusion.
*Avoid punishment unless it is absolutely necessary
*We are currently trying to never yell unless it is because Caleb is in danger; this helps so much.
*Use a combination of contingent and non-contingent incentives
*Have a list of actions for your subject to complete; this list should be visible to your subject at all times and also state how many stars are earned for each performance.
*Push just hard enough, but not so much that they break. When trying to learn new skills, it can be overwhelming for Caleb; I have to constantly gauge Caleb’s mental load to make sure that he is not about to have a meltdown.
*Always think about what unintended consequences might arise from a punishment or incentive.

Learning with Mad Libs

With a ton of education about education, I am able to think of ways of making homework fun. Now, I’m a dork, so I think flashcards are fun as heck – Caleb not so much. Sometimes you have to hide the homework like you do with vegetables: sneak it into something they like. So, instead of making flax seed muffins, we are playing Mad Libs.

Why are Mad Libs genius? Because Caleb loves playing the game, and he doesn’t realize that he is actually learning. We use Mad Libs Junior, which have the added bonus of giving suggestions for each category; the four categories are nouns, verbs, adjectives, and parts of the body.

Noun: person, place, or thing.
Verb: action or state of being
Adjective: describes a noun

I keep it that simple, and I ask him to define these words randomly during the days. It is all about creating strong neural pathways so he doesn’t forget; it is important to reinforce these pathways on a regular basis, but doing it too much can lead to mental overload. When Caleb hits mental overload, he is done for a few minutes and then we reset.

I mostly use the Mad Libs without letting Caleb look at the sample words. First of all, the more random the words, the sillier the story is. Secondly, giving Caleb the time to come up with an answer of his own is teaching him how to problem solve. Patience is key, and it is hard to know when or if I should rescue Caleb when he is clearly struggling. Right now, I’m playing it by ear; if Caleb is getting emotionally upset, I will try to calm him down and point him in the right direction. But, see, then I worry that I am giving him positive reinforcement for melting down. Of course, that is a whole other topic that I am looking forward to writing about: the difference between rewards, positive reinforcement, and incentive systems. (I literally wrote the chapter on this.)

Serious Play is a concept that Lloyd Rieber has researched and has published many articles in peer-reviewed journals on the subject. Serious play is a way to making learning fun, because after all, we want our kids to be life-long learners. Another fun way to learn is through graphic novels, but that is also a whole other post. For more information about Lloyd Rieber, you can visit his website.

Finally, Mad Libs are great because they don’t take long to complete. There is a tiny delay of gratification that is really helping Caleb; autistic kids aren’t really know for their patience.

Happy Mad Libbing!

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.