Tag Archives: parenting

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 verbal stim

Some Mornings Feel Like 17 Levels of…

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The other morning, before I even had a chance to hit snooze at 4:35, I woke up to this:

Click to hear (speakers DOWN!)

It proceeded for four and a half hours, until I left for work.

Trying to get out of bed, my son was standing over me making these very loud, bizarre noises.

Getting the three malamutes leashed up and ready for their morning walk, my son was trying to ride them and screamed the noises in their faces.

While I was preparing his breakfast, he would sneak up behind me and scream the noises so I jumped and spilled his food.

During my entire workout he would jump on my back, grab my leg, stand on my back while I was doing pushups, and fight with the dogs… all while making non-stop noises.

Whilst in the shower he would constantly open the curtain and scream (it echoes! Oh boy… even louder!) the noises.

Applying my makeup.

Getting dressed.

Making coffee.

Packing lunches.

Preparing the dogs’ treats.

Yes, four and a half hours. Of course, I was in rushing deadline mode, not patient parent mode, so I made the situation worse.

As I was leaving for the office, he immediately sat down and began composing beautiful original music on his DSi XL. Huh? Then he had the temerity to say to me, “Mom, it seems like you have your feathers in a bunch today.”

AAAAAHHHHHHHHHHHH!

So what was going on?

I wish I knew. I wish I had a distinct checklist or pattern that would solve for “x” (the noises).

It could have been something he ate or drank before I got up (clearly he was awake before my 4:30 alarm) that caused a reaction.

Maybe this was an extension of sensory-seeking behavior.

Maybe it was verbal stimming due to something was worrying him – a change in a pattern or schedule (he recently had some issues with visitation and his father).

Maybe he was bored.

Maybe he wanted attention.

Maybe he was just having an off day – we all have them. Children with Autism (and puberty!) may not intuitively know how to channel “bad day” energy.

What I do know is this: had I stopped for five minutes and employed one of the tools I normally pull out of my “patient parent toolbox”, I’m sure the morning would have gone differently. I’m not saying the behavior would have stopped completely, but here are some ways I could have redirected him:

  • Invited him to join me on any of the physical activities of the morning, like the dog walk or intervals (jumping jacks, jump rope, running in place, squats)
  • Taken a yoga break
  • Engaged him in a one-on-one activity that he loves (Hangman, Picto-chat, Uno)
  • Played a sensory game
  • Had a protein snack
  • Did an EFT tapping session
  • Designated a “screaming” area of the house where it’s okay to let it all out

These are all quick, simple ways to break the pattern of the morning. I, on the other hand, became stressed, got aggravated, and let the panic of being late overtake me. I got to work feeling like I wanted to carve out my intestines and strangle someone with them. Imagine how he felt, having all this energy in his body and not knowing how to get it out without getting in trouble!

Lesson learned. Sometimes we have to experience 17 levels downward before we can “level up”.

What about you? Have you seen a behavior recently that made you pull your hair out? What did you do about it? What could you have done differently? I’d love to hear your stories in the comments below or on the SOA Facebook page!

business woman holding up hands, "back up"

Special Needs Mothers Need Not Apply

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My neighborhood has a special Women’s Club that meets regularly and hosts family-oriented social events. I’m going to be direct and get right to the point: I have been asked by several women not to attend any of these meetings because I have an Autistic child.

Bear in mind, I have never brought my son to a meeting, he has never been to a social event, he has never caused a neighborhood “ruckus.” He has Autism. It’s not contagious, scary or dangerous. There’s nothing unusual to stare at when you meet him. Why, then, am I blatantly cast out?

I have been a single mom for nine years. My children and I have lived on this block, renting my home, since our return from Knoxville two years ago. I have never brought a date home (what’s dating, ha ha!), had a loud party, had any questionable visitors, or been in trouble with the law. In fact, having disaster response training under my belt and being a volunteer with the Fire Department, I would be an amazing resource for the community if someone would dare get to know me.

I walk my two giant Malamutes at least twice a day and always wave and exchange small talk with everyone I meet. Everyone waves and smiles back, yet we’re still not allowed into “the club” (first rule of Fight Club is…). Worse yet, I continually get asked why I’m not seen at the club meetings, and am also labeled the “crazy homeschooling neighbor that doesn’t participate.”

This just compounds our history of being kicked out of restaurants, book stores, flights (!), and why no one in my family will visit us. I’ve also been told he’s not Autistic, it’s my parenting that’s the problem. That’s a good one!

With all the awareness work and training I do, why are we still experiencing this kind of response from people?

What should I do?

Well, I have some options about my neighborhood. I don’t have the energy to tackle public places at the moment (I will move one mountain at a time!), but here are my choices:

  • I can whine about how unfair it is and feel like a victim
  • I can say, “Oh well,” and let it roll off my back, like water off a duck
  • I can organize a neighborhood gathering of my own, or request to be a special “guest speaker” at the next one

If I can train law enforcement, EMTs, and firefighters about Autism, why can’t I put something unique together to present to my neighbors? It would be so beneficial for everyone to learn a little more about Autism and my son in particular. This way, when we have a wandering situation (which recently happened!), I can feel like my neighbors have my back rather than feeling like they are sitting in judgement. Sure, they may continue to judge me after they learn more, but that’s none of my business.

Now I’d like to hear from you

Have you ever felt persecuted by a group due to your (or your child’s) Autism? How did you respond? Would you like to learn more about giving a small presentation to your neighborhood? Share your comments below, drop me an email, or say something on the SOA Facebook page – I always love sharing thoughts and ideas with you.

You Hate My Autism!

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Some of you may have seen my recent “controversial” question I posted about a startling conversation I had with my son. I asked anyone who felt comfortable to share with me your thoughts and experiences surrounding the topic and I received an overwhelming response! Thank you to every single person who chose to chime in via Twitter, Facebook, or email. I am grateful for your unique perspectives and I’d like to share some of them here.

Here’s the original short post again:

I recently had an extensive evaluation done for my son with a cutting edge, holistic achievement center. The program offered is intense and lengthy but convinced me that my son would be able to reverse most of his balance/coordination/motor skills issues, digestive issues, academic imbalances and sensory challenges.

I asked my son later if this program sounded fun and exciting to him, and if he would like to start. He immediately blurted out, “You hate my Autism. You want my Autism to go away.”

Wow. Not what I expected from my 10 year-old. But I hear him loud and clear.

I am not trying to change who he is at all. I want only the best for him, and felt it my parental duty to merely CONSIDER whether or not a program that can help him open up to his abilities without much of the struggle would be in his best interest. If it worked, of course.

What do you think? I’m not looking for anyone to tell me what I should do, what I want to hear from you is how you feel about your OWN situation.

Would relieving some of the struggles = changing who your child is or who you are in your opinion? Does it mean you don’t accept them, or are you empowering them with new tools?

Is trying to help your Autistic child DENYING who he/she is?

With all of your permission, I’ve chosen some of the key points of some of your responses that I wanted to share.

Robert said:

“I think it’s a tough balance. When people ask me if I want to be ‘cured,’ I have to admit I have a hard time not taking offense. To me, it’s like asking me if I want to be cured of my skin color, Autism being so definitive a part of my identity as a whole person.

Still, are there things with which I know I need help? Of course, but I don’t want that help to come at a cost of who I am. I also don’t want those interventions to define so much of the time in my life that I feel I’m not allowed to be myself.”

You can find more about Robert at simplyrobert.wordpress.com where he occasionally blogs about Autism, but more often about his Autistic interests. (I think it’s a great resource! Love the post on productivity!)

Another Autistic adult reminded me that an important aspect to consider is where the Autistic person might be coming from.  My eyes were opened to some really great points that I absolutely had to share with you:

“We live in a world that is not only ‘not made for people like us,’ but openly hostile to our differences. We are told, ‘Stop rocking!  Stop flapping!  Stop talking to yourself!’ without any consideration of what purpose these activities serve.

When we are bullied or mistreated, WE are the ones sent to ‘social skills training’ so we can ‘learn how to fit in’, as if it’s our fault for being so different. But I want to illustrate the general environment we face, and my point is that it can cause us to see ANY attempt to help as yet another way of squelching the person inside.

There are also people who feel that their Autistic traits are very much part of who they are, and taking them away would also be taking away a piece of themselves, even if that ‘piece’ causes a lot of apparent heartache.”

This reader does various therapies for her children but is careful not to frame them as “helping with Autism,” rather something they do to help them succeed in life (much like going to school or learning their ABCs).

Brilliantly put.

One of my favorite social media friends and fellow bloggers shared:

“Where does my Autism end and where do I begin? This nasty little quandary works just as well when reversed as well. I say your son is brilliant because he’s too young to be so self-aware. I’m both impressed and saddened that he’s already dealing with this one.  He needs more time to mature before tackling such heady stuff.

I confess. I’ve struggled with this one myself. If offered a cure for my own issues, I don’t think I’d take it. I’m not sure how much of me would go with the ‘bad stuff’.  I like some of the stuff that I KNOW a cure would take away.

He has to come to terms with the fact that Autism doesn’t define him.”

That is a fine line that I think must be explored at a pace that is comfortable for each individual.

My close friend in the Fire Rescue Reserve that assists me when I teach my Autism CERT module sent me a heartfelt testimonial after seeing my post:

“For me, through my early teen years after I was diagnosed, I constantly tried to dismiss the fact I had Autism, I felt ashamed, scared, and angry with the fact. At that time in the world little was known to the general public and many doctors about Autism. This in turn made it harder for me to accept. My parents tried many things and none really worked in the end. I had been diagnosed so many times and been to so many doctors I was starting to shut the world out and just didn’t want to accept the fact that I had Autism.

Later on in my late teens and early twenties I found that support group that I had been missing. This group consisted of both friends my age and their families near me. Through the experiences we shared I grew little by little and eventually learned how to deal with my Autism in my own way. These experiences have molded me into who I am today. Today I am finishing my criminal Justice degree. I also am a volunteer with a large metro area fire department which has provided a further opportunity to expand my support group. Through volunteering here I now assist with teaching of the community emergency response team class. This in turn has helped me practice being around people and learning social cues and understanding my Autism. In a big way volunteering has helped reduce the pangs that come with having Autism.”

I always hear great gems of wisdom when I invite his perspective into my teachings.

A wonderful parent told me:

“When my son was diagnosed with PDD, initially, as his Mom and as a clinical social worker, I wanted to get him all the help and services I possibly could! I had heard how early intervention was SO important and he was only diagnosed at age 6. So, I made sure we got an IEP, got him into a friendship group at school and a social skills group privately. I also got him OT to help with the sensory integration issues. I have to admit, although this was helpful in the beginning, this packed our schedule and we all felt extremely overbooked and stressed!

…my perspective began to change. I started placing him in supportive activities that he enjoys and feels help him. We continued the social skills group, but let the OT go (after a year of treatment), and instead, he joined a non-competitive swim team. The swim team allows my son to feel included in a sport, he may never win a race, but that doesn’t matter, to me what matters is that he feels like one of the other boys, included! I have since looked for other ways he can “fit in” with other kids, instead of looking for services specific to his diagnosis.

…we have accepted that our son will be different, it’s who he is and I really don’t want to change that, but, like you I want the best for him and don’t want to see him struggle too much. The older he gets, he’ll be nine this summer, the more I have been letting go and allowing him to learn more for himself about what is helpful to him. I have begun trusting in his ability to know what is best for him, as I don’t have the same issues he has.”

What a great reminder. At 10, I forget that he is aware of what serves him. Not to mention that the children coming forth today really are so much more connected to their inner “GPS” of what they want and need than we ever were!

Another social media friend I admire wrote:

“Tough question. Complex answer. I understand your desire to ‘normalize’ your son as much as is possible. There are things you describe that have real effect on us and our ability to live happy and fulfilling lives. This much cannot be denied.

On the other hand, we are what we are. While my Autism has handed me some wonderful abilities, it has also granted me vast lacuna in other abilities.

Still. . . Autism is not something added to a normal person. Autism is not something removed from a normal person. Autism is a large set of differences between one group of persons and everyone else.

Autism is identity which runs deeper than a name. Autism is what I am, it is the base upon which I build me.

…here is the key: the real indicator here, the only valid indicator, is your son’s voicing of his opinion.

Thank you for that reinforced point. He would not have expressed an opinion if he didn’t feel it strongly!

Another mom shared:

“A parent’s job is to help our children flourish, to become the best that they can be! I totally get that. I too try my best to help my son in anyway I can, without extremes…

As far as helping him with his balance/coordination/motor skills, in the long run, that is definitely going to benefit him. He will be able to take part in more ways when it comes to playing, maybe get picked to play with other kids, so I can see where that would help him.

If it were my son, I would let him have a say in the decision. Ask him why he does or doesn’t want to participate, get his point of view, and take it into consideration. Since it is about him, and it is his Autism.”

WOW! What amazing responses!

All this being said, we chose not to participate in that program. I also chose to check my perspective and make sure that I am in complete acceptance and appreciation for who both my children are when I engage with them. At all times. It has made a difference.

Am I giving up on finding additional tools and resources for him? No. After all I am always looking for tools, supports and resources for my daughter AND myself! It’s a journey. As Abraham-Hicks says, “You never get there. You’re never done.” What I DID give up was the urgency that something must be done to “help.” The inner panic that somehow I am not doing all I can for him.

As soon as I made this shift, this wonderful organization showed up in my inbox. That’s a pretty big wink from The Universe, eh?

For the Mom Who…

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…has to drive her infant around at 2 in the morning because being in a moving car is the only way he will go back to sleep.

…sometimes cooks three separate meals for dinner because her picky eater will only have pizza – but the crust has to be right, it can’t be too cheesy, the pepperoni better not be the spicy kind and there can’t be too much sauce. Oh and definitely not the sauce that is too sweet or has any green stuff in it.

…on some days actually falls asleep standing in the shower.

…most likely has read “Goodnight Moon” to her child at least 6, 947 times and still does the funny voices.

…gave up grown-up music in the car for about ten years in favor of Kidz Bop, Disney, and Pokemon CDs.

…can fix her child’s toys or computer, put together a shelving unit, replace worn appliance parts, mow the lawn, and still remove splinters with the precision of a surgeon.

…wants so badly to fix everything for her children but knows she must stand by and let them have the experience on their own.

…will be there to help pick up the pieces when they don’t quite get it right the first time, and encourage them to try again.

…always makes sure the house is never completely out of any grocery item, and the lunchboxes and coffee are always ready in the morning, without exception.

…simply doesn’t have time to be sick. Ever.

…has to endure the glares of people that think she simply doesn’t spank her special needs child enough when he’s having sensory meltdowns in public.

…eats the burnt toast so everyone else can enjoy their breakfast and nothing has to be wasted.

…sometimes cries when no one’s looking.

…knows that her children are here to teach her, too.

…gets up every single day and does what needs to be done no matter what kind of mood she’s in.

…accepts that right now it’s okay that her child with Autism is 10 and still needs help showering, using the bathroom, dressing, and brushing his teeth. She performs these tasks with grace.

…celebrates every success, large or small, and takes nothing for granted.

…knows that her children love her, but sometimes wishes they would show it a little more. However, she doesn’t require it to keep her heart open.

…goes to bat for her children, unconditionally, because their success is non-negotiable.

…always encourages her children to be their unique and authentic self.

…realized early on that there’s no turning back – this is a lifetime job and it isn’t for weenies.

…still knows how to dance with confidence, even if it’s in her living room. On the coffee table.

…learned long ago that the workload will never be “even” or “fair,” and that’s okay.

…considers the simplest pleasures a big deal, because life is precious and all we really have is the now.

…knows that her children chose her before coming to this crazy, adventurous place, and she is grateful.

…remembers that shining her light and being her true self is the greatest gift she can give to her children, for it inspires them to do the same.

…simply does her best, because there is no manual for this gig!

I salute you. All of you. Single moms, married moms, “unplanned” moms, adoptive moms, older moms, teenage moms, special needs moms…we have a bond – a circle – that is unbreakable. You are all amazing – don’t wait for others to honor you. Celebrate and honor yourself and the successes that YOU create.

Happy Mother’s Day!

What about you? Post some other “for the Mom who…” sentences below or share them on the Spirit of Autism Facebook page!

Spring Fever – Time to Get the Body Moving!

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I am learning from my mistakes. Hey, that’s better than continuing a pattern for an indefinite amount of time, unwilling to look at what may or may not be working, right?

My son, being an unschooler for a little over six months, is very much out of shape. Oh, I know the reason. He spends the better part of his day programming video games (not playing them – WRITING them!). Because of his obsession and brilliance, he currently isn’t interested in joining the rest of the world.

Without turning this into an unschooling article, there is a certain degree of “deschooling” a child will go through when first realizing they are not being forced to memorize things they have no interest in. Picture having been restricted from a certain food group for years and years and suddenly you are told you can eat whatever you want WHENEVER you want – what do you think you would do? Eat all your favorite foods to excess, most likely! Then your body would realize it could have them at any time, and the pendulum would start forming a natural balance – you would find a nice rhythm to your eating. By the way, your body is way smarter than your fad diet, but that’s a post for another day!

The situation

Here’s the missing key in my house right now: my son will spend hours programming games and then get these uncontrollable bursts of energy that have no choice but to be released in the fastest and loudest way possible. He usually shapeshifts into a whirling dervish and runs the length of the house several times, screaming and hitting everything in his path. Not angrily, just energetically :)

Sure, his body is taking care of the regulation of this energy, but not in a productive way. Typically this will result in dogs or sister lashing out at him for inappropriate agitation, followed by the lowering of his self-esteem because he doesn’t understand what everyone’s so upset about.

Having done a successful Fitness 4 Autism program with him in the past, I am kind of ashamed that I let things go this direction for so long. At times I switch into survival mode, when I am balancing a ridiculous amount of things on my oversized, superwoman plate. But that’s okay, all we have is the now and here’s what I’m committing to:

The solution

Short chunks of regular movement breaks. One of my greatest motivation tools for Justin is a timer. Whenever he is resistant to any activity (tooth brushing, taking out the trash) I turn it around and make it a game. I tell him he’s not faster than me, and we have a friendly race doing whatever it is that needs to be done. So we will set a timer and perform animal crawls, star jumps, and similar short bursts of full body movements. Functional exercises for short periods of time are great for everyone, not just children on the Autism Spectrum!

Family field day. Sandbell tossing, hurdles, jumps, even sack races… there is nothing wrong with a little family competition! We’ll even get the dogs involved (Malamutes LOVE to pull things!). I am making the ribbons tomorrow – very excited!

Replace the mini trampoline. It’s been a while since our old one broke. Why have I never replaced it?  This is a good object to always have available to alleviate any short bursts that come unexpectedly.

Weekly yoga. There are so many benefits to practicing yoga, especially for Autism. We both loved doing this in the past – once again it’s funny how bad habits seem to have much easier “sticking” power than things that are good for us!

Exploring new parks. We are very fortunate to live in a county that has over 120 parks and recreation centers. Why are we sitting at home? Time to say no to some of those freelance clients that need things yesterday, turn off Law & Order (love me some Vincent D’Onofrio!), put the iPhone on airplane mode and go PLAY. We can even make a park rating document and map – why not turn it into “research”?

How does regular movement really help?

It’s been proven that children (and adults!) perform better after they’ve moved around. Regular physical activity helps your child:

  • Maintain focus for longer periods
  • Feel better about himself and his abilities
  • Put multiple commands together with cues
  • Confidently participate in new things
  • Get in better shape

Fitness boosts confidence, independence, and self-esteem, plus it teaches goal setting. Speech targets, communication, and behavioral targets can also be incorporated into your daily movement breaks. Remember, no expensive, large equipment is needed!

This is my Spring commitment to my children and myself. I set an example daily with the intense early morning workouts I do at home; however they never see me simply moving for fun, other than walking the dogs.

Join me in this Spring movement… “movement”. Remember, sharing this goal with your child will benefi­t the entire family – it sets everyone up for long-term health and fi­tness. Tell me how you plan to move more with your child by commenting below or sharing it on the SOA Facebook page! I love fresh ideas!

When Connections Are Made

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One of the most perplexing characteristics of Autism that manifests in my son is his lack of ability to put together cause-and-effect connections. Because he is so ridiculously brilliant and advanced academically, it is easy for me to overlook typical actions such as burning his hand on the stove and then touching it again without pause, or messing with the dogs, getting snapped at (or even bit), and then repeating the behavior minutes later. He is perpetually surprised by a repeat consequence and often has no idea that he caused it.

Here is a normal evening scene in my house: I’m in the living room working on the computer, my daughter is on the couch drawing, and my son is in his room designing video games on his laptop. Suddenly he gets a surge of energy that MUST be burned off immediately, comes running down the hall and stops an inch and a half from my ear, then lets out a screaming phrase at his loudest volume.

I have had an array of responses to this, trying my best to reprogram the behavior and teach a lesson without losing my composure. I’m not very good at it.  From the gentle, “Sweetie please don’t do that” to “That hurts Mommy” to the futile “How would you like it if…”, I have not gotten through to him that it is not acceptable to emit sounds at close range that exceed 125 dB. (I’m being facetious here, but according to this Decibel Chart pain begins at 125 dB!)

What usually occurs with these repeat offenses? I try the calm and logical approach first. And second. And tenth :) Then it escalates. Especially when I’m exhausted and have a work deadline to adhere to. Sometimes I plead with him (mistake). By the umpteenth time, I unload. It’s not right, but it happens sometimes. Most of the time it has the same effect as any of my other tactics: nothing. Zoom. Over the head. He doesn’t listen, he doesn’t care, he is doing what he needs to do.

Lately, since the onset of precocious puberty, yelling has started to evoke a reaction of sadness and embarrassment. Of course I don’t capitalize on shaming him in any way, but something has been getting through. This is a golden window of opportunity, as his mind is temporarily freed from the pattern and he is able to hear what I am saying. After the last incident, I immediately took him somewhere quiet and talked about what just happened. I started with an apology for yelling. He retreated into, “You hate me” and “I’m stupid”. I then explained that I love him ALWAYS – no matter what – but I don’t LIKE his yelling in my ear. I calmly and appropriately told him why I didn’t like the behavior, and asked for his help in coming up with a new rule that we can all live with. We now call the living room the “quiet room”. He is welcome to make loud noises in the back half of the house, but in the quiet room we speak in normal tones.

Something happened after that conversation. Five minutes later, he had another power surge and came running down the hall screaming. He stopped in the doorway of the living room, walked up to me, and said, “Hi, Mom” in a nice, respectable tone.

What did I do? I told him I was very proud of him, did I high five, and made a big deal out of his conscious new behavior. You might think that makes me a foo-foo, new-agey, namby-pamby mom that celebrates when their child merely shows up for something. No. This is Autism. This is a connection. This is a MILESTONE.

I am not advocating that you perpetually get to the yelling stage and then backpaddle out of it like I did. But in this case I believe it shook something loose and got his attention. When I yell, I never say ugly things, by the way. It’s always matter-of-fact and focused on the behavior, but it IS yelling nonetheless.

What I learned

Instead of getting to the explosive stage, like I did, how about doing something to break the pattern? Something that would have the same affect but without the negative connotation? Try ringing a bell, using a radically different vocal tone, standing on your head, or anything unexpected. This will redirect the current behavior and get your child’s attention.

Explain briefly what the offensive behavior is (your child often has no idea what they are doing wrong), and why it is not okay. This must be spoken in clear, concise terms, not emotionally or vague in any way. Avoid our human nature to ask, “How would you like it if…”. It is common for children with Autism to lack the necessary wiring to experience empathy naturally – the question will go nowhere.

Ask for your child’s help to come up with a fun new rule that would make everyone happy. Make it clear that everyone must follow the rule. Bonus if you express a behavior that you are going to work on doing better as well!

This practice in my home has led to an increase in my son’s ability to start reading situations. Just the other day he came into the room and started bothering the dog, who immediately growled. For the first time ever he walked away and said, “Maybe he doesn’t like that.”

Yes!

What about you? What helps your child make connections? Share your thoughts by commenting below or posting on the Spirit of Autism Facebook page!

What are My Top 6 Go-To Blogs?

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Despite what goes on in my home from day-to-day, I truly never have to feel alone as a parent raising a child with Autism. It’s 2012, and the number of resources, experts, and all-around amazing souls available at the click of my mouse is one of the backbones of my survival. I wish this were the case when we first got a diagnosis and I was overwhelmed, frustrated, scared and confused (and very, very isolated)… but, as we know, everything happens in perfect timing.

These six blogs are my go-to places for experience, strength and hope. I am honored to have connected with everyone here, and can’t wait to do more together in some capacity in 2012. Here are my Top 6:

Louise Sattler
Louise is one of my soul sisters that I can’t wait to meet in person! She is a nationally recognized speaker that infuses her delivery with the kind of humor I adore. She is also a psychologist and owner of Signing Families™.  As soon as I get my act together, rather BALANCED (a non-negotiable goal for me in 2012!), we will collaborate and create greatness! Her support of my voice in the Autism community means more to me than I could ever express.

Gluten Free Gigi
Another soul sister that shares my city… we keep threatening to meet in person and finally share coffee talk! She took being gluten free by the horns and instead of balking about the foods she used to love she started creating masterpieces in the kitchen. Gigi has discovered creating and preparing these new, gluten free healthier versions of the foods she loves isn’t that difficult, is better for her and her family, and much less expensive than buying pre-packaged, gluten free foods and mixes. I have much to learn from her, and boy am I relieved! I’m so tired of buying $9 boxes of “Lemur Puffs” that make my son turn his nose up and say, “It’s not the SAAAAAME!”

Connie Hammer – Parent Coaching for Autism

Connie is an amazing, positive support for parents that especially want to take the struggle out of common hardships when it comes to raising a child with Autism. Bedtime, potty issues, holiday meltdowns – you name it. She celebrates and honors each parent and child as the individual they are, rather than pushing a “cookie cutter” system. I learn something from every single one of her blogs and newsletters.

Gabrielle Kaplan-Mayer – Kitchen Classroom 4 Kids

Ms. Kaplan-Mayer wrote The Kitchen Classroom: 32 Visual GFCF Recipes to Boost Developmental Skills. We loved it so much I wrote a review about it. What I love is that this is not just a cookbook (cue Twilight Zone music… anyone else remember that episode? To Serve Man?). Specific activities are spelled out to help develop fine and gross motor skills, assist with cognitive abilities, speech and language, and address sensory input issues. She has a Recipe of the Week blog that is really fun!

Kid Companions

Creators of Chewelry, this blog offers a wide array of viewpoints and resources when it comes to everything special needs. Their goal is to help special kids be themselves and thrive. Each of their products give us parents peace of mind and support our special children. If your child is like mine and destroys pens, straws, clothing, video game styluses (stylii?) and whatever else is near because of chewing fixations… you need Chewelry!

Stark. Raving. Mad. Mommy.

I have no idea what her real name is, but I’ve been following her over all forms of social media for quite some time. Her sardonic wit and twisted perspectives sometimes get me through the day. It’s a little edgy and in your face, but come on – don’t we all crave that sometimes? She writes about parenting, sensory processing disorder, anxiety, ADHD, allergies, asthma, Asperger Syndrome, and whatever else is cooking at any given moment. Good stuff!

So there it is. There are a lot of other amazing people I currently support and collaborate with, but in order to keep things consistent (I have little specks of Monk in me from time to time) everyone listed here must have a blog that is updated regularly.

What blogs provide great value for you? Let me know by commenting below or on the SOA Facebook page!

Am I a Helicopter Mom?

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Today I took my son with me to the computer repair place to drop off his laptop. Naturally, he was all over the place during the entire process – running around the store, making all the little holiday novelty toys make noise at the same time (repeatedly), slipping behind the counter, and making loud noises.

I am used to getting thrown out of most public places (grocery stores, restaurants, movie theaters, churches… shall I go on?) when this type of behavior emerges, so naturally I was a bit on edge, redirecting him as much as possible. Every two seconds. The store’s owner absolutely took a liking to my son and constantly told me while this was occurring to “let him go”, “let him explore and be a boy”, and “stop being a Mother Hen”.

I could have been insulted, but you and I both know that as a mother of a child on the Autism Spectrum we are frequently forced to be Helicopter Moms. Mostly I am used to hearing the opposite words than today’s experience: “Would you please control your child”, “You need to spank him or something”, and “Why do you let him do that?” So… yes. I hover.

I do know that when our world is immersed in sensory processing, Autism, and disability daily reminders, we can honestly forget that our child is just a child and sometimes they are doing what boys do! Still, people can often make judgments or assumptions based on the behaviors they see at that moment. This gentleman saw some loud noises, mild hyperactivity, and repetitive behavior and it didn’t bother him. What he didn’t know is that my son can have tendencies to:

  • Break items with impulsive movements
  • Hurt himself due to sensory-seeking behaviors like crashing into things
  • Make poor decisions because of the absence of a sense of danger
  • Disturb other people by being a “space invader”
  • Become so overloaded with sensory input that he is no longer able to hear and understand commands
  • Yell inappropriate things
  • Run away, sometimes into traffic

We lucked out this time. But where is that balance between being a Helicopter Mom and leaving some space for my child to show me that he can handle more than I may be letting him? Am I limiting his natural abilities to learn what’s appropriate and work things out? Or am I protecting him in the right way? Is it up to others’ reactions?

I don’t know the answers to these questions, but the good news is that I can keep asking them and tweaking our experience along the way! I am not insulted by being called a “Mother Hen”, I am actually grateful for the opportunity to take a look at the way I support my child and possibly adjust for a better outcome if I find some truth in it.

What about you? Do you balance between hovering and allowing? Has it burned you or surprised you before? I’d love to see your comments below or on the SOA Facebook page!

My children, Malamute/Husky pack and I wish you and your family a wonderful, abundant and joyful Holiday Season!

How to Celebrate the Child You Have

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“Motherhood (and Fatherhood) is about raising – and celebrating – the child you have, not the child you thought you would have. It’s about understanding that s/he is exactly the person s/he is supposed to be. And that, if you’re lucky, s/he just might be the teacher who turns you into the person you are supposed to be.” ~The Water Giver*

I saw this posted on the Facebook page of one of my favorite mentors, Janice Masters, and it inspired me to delve a bit further

and reflect on the quote as it relates to my own life.

After experiencing your child’s meltdown #42 for the week, have you ever caught yourself feeling envious of other parents? Having thoughts such as, “It must be nice to be able to go to a restaurant with your child!” or “I really wish I could travel with my children – other people get to go on vacation!” Maybe you’ve gone so far as to wonder what your life would be like if your child was (gulp) “normal”.

After these thoughts take residence in your head, have you also been consumed by guilt shortly afterward as I have? First of all, do NOT beat yourself about it! These thoughts are completely understandable when you have a special needs child. It does not mean you don’t love your child or that you wish he were someone else. It doesn’t make you a bad parent, even if you occasionally feel you’ve been robbed of the child-rearing experience you were hoping for.

However, since an expectation is often a resentment waiting to happen, we do sometimes need to give our perspective a little shake and examine how often these thoughts are dominating our mind.

Please know I am not saying it is not challenging to parent a child on the Autism spectrum. Believe me! But maybe if you tried on a couple of different views for size – see how they feel – some aspects of the way you interact with your child might shift.

(in honor of Janice, ask yourself) What if…

  • You were to give yourself permission to feel your feelings and observe your thoughts – all of them? Could you then release them after acknowledging them?
  • You were to look for the gift amidst the challenge?
  • You were to make a list of all the positive, amazing traits you see in your child?
  • You were to sit back and watch your child play, seeing how in tune they are with the present moment and their desires?
  • You were able to allow extra time in your schedule to dawdle and not rush so much?
  • You could loosen some of the traditional beliefs and values that no longer serve you and start some new traditions with your child that make sense for who you both are today?
  • You started capitalizing on your child’s strengths instead of focusing on correcting the perceived deficits?
  • You were to start going easier on yourself and begin to follow your own bliss?

I challenge you just take a few of these questions and see how they feel for you. Let me know if you notice any changes in your home by posting in the comments below or on my Facebook page – I’d LOVE to hear your experiences!

I’ll leave you with this:

“Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see the possibilities — always see them, for they’re always there.”

– Norman Vincent Peale