Tag Archives: regression

Spirit of Autism Puberty

Puberty, Autism and Emotional Shutdowns

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Spirit of Autism Puberty“The universe hates me!”

My son came stomping out of his room and collapsed onto the floor, heaving a huge sigh of frustration.

Unfortunately, this is not a new scene in my house, as I also have a 16-year old daughter. ‘Nuff said. But more importantly, puberty and autism can create a vicious cocktail that seems to bring on extremely magnified sensory issues, increased hyperactivity, regressive behaviors, and a whole lot of unexplained emotions. My boy just turned 12, but we started experiencing a profusion of puberty related issues as early as nine.

“The universe is incapable of hating, sweetie. What’s wrong?”

Evidently he had built a statue of his Minecraft skin in one of the game’s worlds and he told me that his friend destroyed it.  Minecraft is a unique multiplayer computer game where you learn survival skills and build custom worlds. The creative and building aspects of Minecraft allow players to build constructions out of textured cubes in a 3D world.

First and foremost, I was extremely proud of his ability to articulate to me that he was upset, the reason he was upset, and that he had worked very hard on the statue and it had taken him a long time. This is a HUGE milestone for us! But before we had a chance to begin talking about it, everything started going wrong for him. Everything he touched seemed to break or malfunction. He tried to pet the dogs and they ran away from him. His sister yelled at him for seemingly no reason.

I know from experience that when you have the “everything sucks” filter on, your experiences will follow suit. You know, like when you start out having a bad day it seems that your car won’t start, you spill coffee on yourself, you mess up a client proposal… have you ever had a day like that?

So the first thing I had to do was help diffuse his “universe hates me” perspective, starting with three deep and centering breaths together.

Delayed responses are another typical experience for Autistic children, and once I thought he was in a calmer place (about 30 minutes later), he started crying uncontrollably about the loss of his statue. It was that real guttural crying, too; I felt horrible. I consoled him and acknowledged that he felt upset that his statue was destroyed.

We then talked about choices. I told him he could either play one of his other favorite games (offline) to help get his mind off of it for now or he could choose to talk to his friend and tell him that his feelings were hurt. He could ask him why he destroyed the statue and open the lines of communication.

He had already removed his friend from his Skype list and blocked him from his server! His impulsivity coupled with an intensity of emotions he wasn’t accustomed to had caused him to overreact and shut down.

Once the tears were dry, we played a game called “5 Other Things”. I learned this gold nugget of a coping skill as a teenager and it’s never failed me. The idea is that it’s not what happens to us that causes emotional distress, rather our interpretation of it.  For instance, if a person doesn’t show up for a meeting with me I might immediately feel hurt and angry, assuming I had been blown off. This could rapidly lead to a barrage of negative thoughts: “Did they even INTEND to show up? Am I not good enough for a simple text or phone call letting me know? Who do they think they are?!” etc.

“5 Other Things” forces you to step outside of that neural pattern and look at some other possibilities for the event in question. Was there a family emergency? Are they simply running late? Car trouble? Did one of us write down the wrong day?

Naturally, if someone does this sort of thing to you regularly, “5 Other Things” is not the answer… getting a new friend is J

Being that my son didn’t SEE his statue being destroyed (it was simply gone when he logged back in to the server), we looked at some other possibilities:

  • Did another person playing on that server do it?
  • Did the game malfunction somehow?
  • Could his friend have accidentally done it?
  • Was the site hacked?
  • Did aliens land on earth and destroy all human forms of online entertainment? (Silly can be good if you’re trying to break neural patterns!)

“5 Other Things” worked! After some investigating (and a proven screenshot alibi of the suspect, ha!) he and his NOW UNBLOCKED friend discovered that the server crashed and the world was restored from an earlier version… before he had built the statue.

What a great learning opportunity this was for us! When puberty, autism and emotional shutdowns occur, we now have a blueprint:

  1. Take three deep breaths together
  2. Encourage him to share what is wrong, and praise him for being able to name it
  3. Help diffuse the “everything sucks” filter or mindset
  4. Acknowledge the feelings he is experiencing without judgment or criticism
  5. Play the “5 Other Things” game – without fear of getting a little silly!
autism potty training

Autism, Sensory Processing Issues and Potty Regression

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This is not a fun topic for me to discuss, but I’m hoping that together we can help each other. If you are experiencing anything like this at home, regardless of your child’s age, you have my utmost empathy and understanding.

My son had delays in potty training, which is certainly not uncommon for a child with Autism and Sensory Processing Disorder. Truth be told, I have less detailed memories of those days as a single parent with chronic sleep deprivation, but we got through it.  Not that my situation has changed, but things seem a bit more manageable with older children! Or maybe I’ve just matured :)

He’s never been able to “take care of the paperwork” on his own, and that is challenging enough because I’m not here 24/7 to tend to his bottom. He has been known to hold it until I’m home from work, which creates some issues with the routine ebb and flow of daily potty experiences. Additionally, his diet is not 100% gluten free and he has never had a pleasant bathroom experience. The other part of the equation is due to his sensory processing disorder: he is unable to feel the sensation of having to go until it is absolutely the last second before an emergency. We have been working on this diligently for years with exceptional progress.

Until recently.

Justin will be 11 this month. About three months ago I noticed that he stopped going. Every few days I would find soiled boxer briefs in his closet or under his bed. Ruh-roh.

I immediately bought hygiene social stories, made it ABSOLUTELY clear that I was not mad at him and he would not be in trouble, and encouraged him to try using the bathroom on a regular schedule with visual supports.

It worked for a little while, and then things took a turn for the worse. He hadn’t gone for about a week and I made him sit down and try before I went to work one morning. When he was done I saw blood. A frightening amount of it.

Luckily, we ruled out the really scary stuff at the hospital and discovered it was due to impacting. More talks, more social stories, more diet adjustments… I thought it scared him into being more diligent with his potty experience. He has made it clear that not being able to clean himself embarrasses him, so I believed he had the capability and awareness to make certain choices regarding the bathroom.

Still he is regressing. Now he goes in his boxers and cleaning him up has become a physical issue. He is bigger than me. I am very careful to avoid attaching negative emotions to this experience and always try to be 150% supportive, but it is harrowing.

Why he is afraid to go

I believe that sensory issues are still playing a role, but there has to be other stuff going on to foster this behavior. His diet can always be improved. I’ve read that fear could stem from leaving a part of himself behind. And of course, overall it’s a long and painful experience for him.

For a child that can’t stand a speck of dirt on his hands, it bewilders me that he can sit in soiled and pungent undies with no issues. I won’t even tell you the details on how I had to sanitize his room. ACK.

Solutions

You know me, I always have to have a plan of action when faced with a challenge! We’ve luckily ruled out medical concerns and reasons. I thought about buying adult diapers, but I feel like that would make it okay for him to keep doing this. So here is what we plan to try:

  • More social stories
  • Positive reinforcement
  • An interval timer where he will try at set times to get him used to the routine again
  • Continued tweaks to his diet
  • More movement, including yoga
  • Natural stool softener, such as flaxseed oil

I will keep you posted! What about you? Have you experienced this at home with your child (no matter what age)? What worked for you? Did anything make it worse? Share your stories by commenting below!

Autism + Puberty = Oh, Crap!

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Got your attention, didn’t I?

We’ve been in a great rhythm for a while now, and it’s been glorious. Rituals and routines: check. Handy sensory tools to take to outings: check. Restricted diet: check. Digestive enzymes: check. Pre-meltdown signs identified and used to head him off at the pass: check.

A couple of weeks ago, I noticed that the pants my 9 year-old son was wearing just a few days earlier were suddenly three inches too short. Did I use the wrong drier setting…? Then I saw acne. Then peach fuzz above his lip.

“Honey? Your voice sounds funny – are you coming down with a cold? Feeling okay?”

Then it hit me like a brick to the back of the head: big P, here we come.

Having a daughter first that went through full puberty at 8 (ACK!) I really didn’t think I had anything to worry about: I thought I had it in the bag. Easy – whiny, emotional, easily irritated, overreacting to things – then a smooth ride until the following month. Of course boys are different, but when you add precocious puberty with a splash of Autism you get an interesting cocktail. The hormones seem to sneak in and reconfigure many of the connections we’ve worked so hard to attain.

What to expect

Unexpected rage over small incidents. Proper magnitude of a situation was always an issue with us. We’ve really come a long way learning appropriate responses, but with some of these reactions it’s as if we’re now starting all over again.

Sleep schedule run amok. There has been a magnified wave of insomnia in our house, followed by 15-16 hour stretches of sleep for no apparent reason. Our old rituals and occasional use of melatonin are now ineffective.

New food likes / dislikes and  bizarre cravings. Good thing I went to Sam’s Club and bought a giant, industrial-sized box of his favorite snack food… that he suddenly hates :) Ugh. I caught him spreading Nutella on a dog biscuit the other day and slapped it out of his hands in panic! The good news? He’s trying new foods. It’s all about perspective. <Kidding – no child in my house eats dog biscuits!!

Lack of appetite followed by devouring a week’s worth of groceries. I know this one is not unique to children on the Spectrum, it’s part of having a t(w)een boy.  I still found myself quite financially unprepared for living with Garfield. Anyone know a good Gluten-Free lasagna recipe?

Being overly affectionate. This is a sticky-wicket, especially because I’m a single mom. There have been some shockingly inappropriate… acts of curiosity… that I’ve swiftly nipped in the bud! I will probably need some more assistance with this topic, however, as my expertise ends with Judy Blume books and creating the perfect chocolate/salt balance about three days out of the month. Calling all male role models… help! STAT!

Exhibiting desires to control family members and pets. For some reason, my boy is getting some sort of payoff from cornering me or his sister and not letting us pass through a room, blocking us from getting something in the kitchen, and mildly terrorizing the puppy. There is an underlying theme for the sudden desire to be the “capo di famiglia” (head of household). Yeah… that’s not gonna happen. Thank you, drive through!

No desire to keep up hygiene. Both my kids exhibited this strange behavior at the onset of puberty. It takes an Act of Congress to get them into the shower more than once a week. I simply can’t relate… but I have to stick to my guns.

Regression of old behaviors. Some of the old impulsivity is rearing its ugly head, along with stimming, toileting accidents, and blurting out loud noises. It really feels as if he is choosing this behavior; it has a deliberate tone to it. However, when disciplined he is honestly surprised that he is in trouble and is truly not sure what he did. The difference now is that he internalizes it and tells everyone he’s stupid. That’s not good.

What do you do?

Open communication. The number one thing you can do is make sure your child feels safe to talk about anything with you. With Autism, you may hear questions and perspectives you’ve never encountered in this arena. It’s so important to keep an open dialogue about what he is experiencing, this will set a solid foundation that will hold up any future issues and surprises with grace.

Rinse and repeat. It takes time to create new habits. 21 consecutive days, actually. Don’t expect your child to embrace these new hormones and feelings without some confusion and resistance. Remain patient and be prepared to explain, instruct, and remind your child about virtually everything. You will be repeating yourself, so get used to it :)

Gently establish new routines and rituals. Don’t cry over what used to work. Life is meant to be fluid. I used to feel like such a failure when I couldn’t command a successful routine 100% of the time. Now my attitude is, “We’re going to try this for a while and see how it goes.” If it stops working, we make small course changes. It took me almost 40 years to learn that small, consistent adjustments make a much more profound impact than the extreme and rigid ways I would try to enforce a schedule I thought “should” work. Not to mention all the energy expended feeling bad about my “shoulds”. Now that energy is freed and I can focus on our next step. The flow is so much nicer!

Exercise! Physical movement is always a priority, but it’s really critical during puberty. We start off each morning with Superbrain Yoga. Since I work out every morning for my own sanity, my son will sometimes mimic what I’m doing (or his version of it). There are currently no structured sports or activities in our repertoire, so walks with the dog, back yard exploring, and regular trips to the neighborhood bouncy house definitely help. When the weather gets a little less infernal we will be trying some more challenging activities.

Find a creative outlet. If you have a child with Autism, I’m sure you are no stranger to their current obsession. Rather than meeting it with resistance because YOU think the interest is excessive, try expanding on it. For example, my child lives, breathes, and eats Super Mario Brothers. We’ve found a computer program that goes above and beyond playing the various games: he gets to create custom levels. He puts them to music, assigns characters, powers, scenes, dialogue, and criteria to his games like he’s been designing all his life. What an awesome gift!

Establish ‘mommy time’ boundaries. Now more than ever it is imperative that you carve out sacred time for yourself. You may feel selfish and neglectful when you first attempt this, especially if you work. But the benefits are two-fold: you are getting a much needed and deserved break to replenish your spirit, and you are teaching your child how to do the same for himself. Making sure you are balanced and happy is the greatest gift you can give your entire family.

Celebrate the good choices. No matter how small you think it is, it’s a big deal that your child is able to make a connection, follow a thought, and make a positive choice. You may feel as if your child is too old, but throwing a verbal party when you catch him being good will really shift unwanted behaviors quickly!

What about you? Have you ventured down this path yet? What things helped you tame the beast? Feel free to share by commenting below or posting on the SOA Facebook page – I’d love to hear your stories!

Regression or Progression?

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I recently did my mid-integration checklist and interview for Justin’s Listening Training. As he is getting ready for his next intensive, I wanted to share some amazing gains I observed – new behaviors that I attribute to his first round of EnListen® and additional supports from home, including:

  • Introduction of Chewelry to redirect chewing (I’ll be dedicating an entire blog post to this great product shortly!!)
  • Addition of digestive enzymes, probiotics, and Omega Fatty Acid oil to his diet
  • Increased yoga and fitness routines after school

Understand that every child is different and may or may not show the same gains or at the same rate, especially after only the first intensive. These are things that improved in my child:

  • He now understands and carries out multi-step instructions (e.g., “Put on your socks, brush your teeth, and meet me in the kitchen.”)
  • Bathroom experience: his body now signals that he has to go – no more accidents (thank you!); it is an easier experience – 15 minutes in the bathroom instead of 45!
  • He is aware of possible consequences before proprioceptive crashing – Justin will now run up to things and stop and think first about whether or not it might be a good idea. He redirects himself for the first time.
  • Empathy, remorse – he consciously apologizes after accidentally hurting someone and doesn’t repeat action!
  • Fine motor improvement – he is better able to dress himself; he even wore jeans for the first time and buttoned them with no assistance!
  • Initiating bedtime on his own – he’s getting tired earlier in the evenings, and bedtime is no longer a long and drawn out process (except when he’s being a typical kid!)
  • Aware of why he has certain behaviors – when asked why he is displaying a certain behavior he is able to provide a logical answer rather than tuning out or shrugging it off
  • Report card improvement
  • Little to no spinning – much less stimming (excluding the return of recent verbal outbursts)
  • Realizing where he is in space – there is much less holding the walls when walking and chair tipping when sitting
  • Coordination, balance improvement – squatting, skipping, hurdles and obstacle courses, jumping improvement
  • Tactile gains – introduction of new clothing materials that previously were not tolerated
  • Initiating affection – this is a biggie! He is equating more with people and less with things.
  • Showing more independent thought and less echolalia (and much less regurgitated TV speak!) when asked questions or engaged in a conversation

Less than desirable changes noticed:

  • Expressing more frustration – this is due to experiencing certain feelings for the first time. Listening Training has begun the process of allowing him to be receptive to and in touch with his emotions. Justin will need to now learn how process those appropriately.
  • More meltdowns
  • The return of noises, verbal outbursts and personal space issues
  • Less motivation to complete schoolwork

Although this may appear to be a regression in behavior, I realize that Justin is experiencing a reorganization of how he sees the world and processes information. It’s going to take time for these changes to be integrated into daily practice. I have to dig a little deeper. Some of these behaviors are not necessarily a regression, rather familiar ways of coping with new feelings and experiences.

He is also reflecting his new feelings of frustration through verbal stimming and needs to learn new and appropriate ways of expressing them.

The next intensive will continue to address sound sensitivity as well as introduce organizational skills and theory of mind.

It is easy to focus on the behaviors we don’t want from our child when we see them, and immediately assume things are headed south once again. I don’t know about you, but raising a child with Autism is a roller coaster ride full of gains and regressions. It’s part of the process and I wouldn’t have it any other way.

Looking at this progress now on paper, he truly has made some incredible gains. It is imperative that the school and I continue to support him with reward systems, redirection, and behavior alternatives as he learns to integrate information in a new way.