Tag Archives: choices

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!

Product Review Part I: Step Ahead of Autism

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I just finished reading Step Ahead of Autism by Anne Moore Burnett. I have to say this is one of the most inspiring and practical Autism books I have ever had the pleasure of diving into.

As a researcher by nature, most of the books in my library discuss the biology involved in sensory integration dysfunction, the nutritional and behavioral repercussions of certain food sensitivities, and the implied neuroscience behind certain brain function as it relates to Autism. Anne’s story is a refreshing and honest tale of her journey with her son Joey, who was diagnosed at the severe end of the Autism Spectrum at age two and went on to become a successful college student.

Most of my books require hours of focus, references, and frequent sanity breaks. Step Ahead of Autism was such a flowing and effortless read; parts of the author’s journey and emotional roller coaster mimicked my exact experiences and I relived some of those feelings. But the real magic in the book is the way it is broken down into ten practical steps with exercises, techniques and tips that can instantly be put into practice. Many of the ideas are of course pertaining to making the best choices for your child, but the real inspiration is the transformation we make within ourselves – shifting our intentions, beliefs, attitudes and reactions to the diagnosis and the choices we face each day.

That being said, there is so much amazing information in this book that I will be only discussing the highlights of the first five steps in this post – Part II will be posted next week.

I really resonated with the discussion in the beginning of the book of what happens to us as parents once our child receives an official diagnosis of Autism or a developmental disorder in general. Denial, anger, and confusion are expected, but the choice is ultimately ours to wallow in a pity party of “why me” or become an advocate. I love how she says, “You can turn the denial into determination, the anger into energy, and the ‘why me’ into ‘watch me’. I know. I did, and I will show you how to do the same.”

She further states it is time to leave the “Why does autism occur” to the researchers and to move forward. YES!

This book is more about the changes we must make in ourselves and the skills we need to develop rather than trying to change the behaviors in our child. Quite a fresh perspective!

In each step Anne shares a part of her story and then turns her experience into practical tips and exercises for us to practice immediately.

Step one is TRUST. We must learn to quiet the noise of our daily lives and really reflect and pay attention – we know our child best and we must trust and explore creative solutions and limitless possibilities. She says it best that we tend to “fall into a trap of reacting to life and coping with what happens instead of actively creating a life that’s right for us.” I know this in my heart but I need daily reminders! Especially with a To-Do list that on some days seems longer than Santa’s “nice” list!

Step two is OBSERVE. The author suggests creating a timeline of your child’s behaviors with dates that you can then take to doctor visits and eventually evaluations. This will serve as the framework and ease the intake process when specialists, therapists, and other providers are to be seen.

As she shares her experience of receiving her son’s diagnosis in this chapter, I relived the road that led me to my child’s, which was much later than age two. I remember distinctly the signs and red flags; yet everyone had a strong opinion about what was going on. Half of my family and friends said things like, “He’s just being a boy! He’s got a lot of energy! Oh, my brother was the same way – he just needed to bounce on the trampoline before dinner – no biggie!” The other half came right out and said, “I think something’s wrong with your kid.”

Neither reaction sat right with me: the first lot telling me there is nothing wrong while I was clearly struggling with day-to-day routines and public outings, and of course no parent wants to hear that there is “something wrong”. Yet receiving the diagnosis had such a finality to it, and it definitely hit me like a Mack truck just like the author shares in her experience.

One of the exercises in this section is to simply unplug from the electronic world and be in the now with your child. Focus and concentrate on everything they are saying and doing with you. I recommend that for everyone, not just your child!

Also included is a thorough prescreening checklist. I really wish I had this before my son was five!

Step three is ACCEPT. Grieving is necessary – it is natural to mourn your child’s diagnosis and eventually let it arm you with a sense of new confidence. Unfortunately, many parents are stuck in permanent grief, as if an Autism diagnosis is a life sentence. We must accept the challenge as an opportunity to realize and grow our capabilities as parents. By focusing on what’s right more than what’s wrong we can empower ourselves and inspire others, as the author has done with this book.

Step four is ASCERTAIN. I did not have the gift of early intervention, but that’s ok. My son experienced several misdiagnoses before we arrived at the true picture. My journey and desire to learn more about my child rather than go with the first explanation and suggested treatment made me who I am today.

This chapter does provide a strong argument for making early diagnosis and intervention the primary goals of every parent, pediatrician, educator, and caregiver. She also offers clarity on what you should look for in the assessments you may schedule for your child, and also some classroom concerns to gather when starting to develop a needs assessment.

Step five is ADAPT. This is a biggie. We may be called upon to make big changes for the sake of our child, as the author did when it came to relocating. I love how she discussed her resistance to change, but said, “Joey needed us to move him forward as quickly and as responsibly as we could, to take full ownership of his welfare.”

This is not a job for weenies, I KNOW we all know this! In my experience we, the parents of special needs children, are a lot stronger than we thought we were. The key is to adapt, which the dictionary defines as, “to put oneself in harmony with changed circumstances.” ‘Nuff said :)

I hope Part I of this review has sparked your interest about things you can do to ensure the best possible outcome for your child. Even though I live Law of Attraction and carry a positive attitude in my pocket (which I sometimes forget to take out when I’m overwhelmed!), Anne’s story has helped me go easier on myself and take a step back. I have a lot more power than I thought and I hope you know that you do, too!

Tune in next week for Part II…

Braving the Public… Meltdowns and “The Look”

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I posted a question on Twitter and Facebook last week that stirred quite a few comments! The question was:

Parents: how many times have you gotten “the look” in public places… as if people were saying “Why can’t you control your child?”

The myriad responses I received ranged from “It is so stressful, we don’t even bother anymore” to “I don’t even notice because I don’t care what people think!”.  It was great! You know what? I can relate to every single bit of feedback I received. I have been in all of those places emotionally and even gone so far as to second-guess or blame myself and my parenting skills along the way.

No one said this job was easy. To quote a dear friend of mine, “Parenting is not for weenies.”

I can’t count how many times I’ve had to rapidly exit a grocery store, leaving a full cart, because my child escaped and was running up and down the aisles, screaming and crashing into endcaps. I can’t tell you how many times we spent $70 at the movies only to be kicked out of the theatre before the previews were even over. I can’t recall how many times we had to leave a restaurant, paying for food that never came because of meltdowns. And don’t get me started on how I know the response time of Fire Station 5 so well ;)

I have experienced parents tell me I need to spank or beat (!) my child, I have gotten countless dirty looks from others in public places, I have been told by security officers that I need to “reel in my kid”, and I have been called a bad mother more times than I can remember. It’s not fun. I don’t even want to get into airplane follies!

As a single parent, I don’t have the luxury of another adult when out in public to take my son outside for a sensory break, put him in a time out, or to leave him with at home so I can do the shopping alone. What I also didn’t have until the last few years, though, was knowledge and understanding of Sensory Processing Disorder, a list of key things that set my son off, and tools to help me make the right decisions about taking him out.

I know we can all share horror stories. I’ve probably stifled and suppressed most of mine :) BUT I thought it would be helpful for me to share what we do RIGHT now. Meltdowns these days are minimal, if not completely gone.

Know when the odds are stacked against you. Is it close to nap time? Has your child been stuck inside with no exercise? Did he just have a big, sugary snack? Or is he really hungry? Conversely, are YOU exhausted and sleep-deprived? Squeezing things into your schedule and feeling pressed for time? These are NOT good times to take your child with Autism to the store, restaurant, bank, or any other errands. It may be inconvenient, but it is worth it to wait until all the odds are in your favor so you can handle any situation from a place of calm and grounded peace. When you can respond, not react, it changes everything.

Avoid busy times. Try to go to your favorite places when they are not too crowded. So what if your schedule is different than the rest of the world’s? The extra quiet atmosphere may be totally worth it.

Understand what your child experiences. I used to just see bad behavior. Then I would try to reason with it, yell, lose my patience, bargain with it… yes, these were really effective :) The truth of the  matter is, your child may be under assault by her senses. If you can stand a little bit of bad language, this is a GREAT video to illustrate a meltdown. I love it. Sensory Overload Simulation

You can also read one of my earlier articles, Why Does My Autistic Child Scream?! which helps explain what’s going on neurologically.

Physical exercise first. Taking 5 extra minutes before going out to toss a sandbell with your child, run a quick relay race, do some animal crawls, or just run in place can change their entire mood and energy level for your outing. Fitness creates focus, provides an energy release, and gives your child a nice self-esteem boost along the way!

Anticipate and arm yourself with supports. Bring things like noise-blocking headphones, supermarket bingo, things to draw with, snacks, or even video games if you deem them appropriate. Know where exits are as well as a quiet place to go for a five-minute sensory break if needed. Illustrate clear consequences for misbehavior prior to entering your destination, but also make it clear that breaks and time outs for his body are not the same as being in trouble! It also couldn’t hurt to have a plan B.

Look for flags. You know what it looks like when your child first starts to get overloaded. Don’t wait until the situation spins out of control before addressing it. If possible, give your child choices and encourage her to make the right ones for her. I can now ask my son, “Are you screaming for fun, or does your body hurt?” (sometimes he’s just being a boy!) I’ve had him hold up numbers to tell me where his body is on a meltdown scale – 1 being perfectly fine and 5 being totally out of control.

Compassion. It’s never easy to walk that fine line between disciplining a behavior when your child can clearly help it versus giving them support and understanding when they truly can’t. The bottom line is, we are all doing the best we can. If you think you’re frustrated by a behavior your child exhibits, imagine how he feels getting in trouble for his ears hurting or his nerve endings feeling like they’re on fire. Imagine yourself not being able to tell if you’re standing up straight or falling over, and then getting yelled at for touching the wall and not knowing why. I’m not saying all behavior is okay and should be overlooked, but seeing things through your child’s eyes (or ears, or hands) can instantly melt your frustration into compassion and assistance for your child to step into his best self!

What other public tips and tools work for you? What attitudes have you shifted that changed your experience? I’d love to hear about them!