Tag Archives: support

SOA Siblings

5 Ways to Include Neurotypical Siblings

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SOA Siblings“It’s not fair! You always talk about Autism, Autism, Autism! You always write about him on your Blog and put his pictures everywhere!”

My firstborn isn’t playing the favorites card, she’s a little sensitive about Autism. Especially since my website, training classes, workshops and marketing materials use stories and facts about her brother as their framework. Sure, I can remind her about all the special privileges she receives as the eldest and the times we go places together without her brother. But that isn’t what she wants to hear. She wants to know that she’s valued, unique, and most of all, heard.

Here are some ways to make sure siblings feel included.

1. Don’t keep them in the dark.

The unknown is scary to children – especially when it’s surrounded by energy that may be tense and anxious. They are extremely sensitive to your feelings, so sugar coating or avoiding the subject of Autism in the home causes disharmony instead of protecting your child’s feelings.

Additionally, you should be open (in an age appropriate way) about what’s behind certain behaviors and that they are rarely, if ever intentional. Impulsivity and Sensory Processing issues can be hard to explain, but there are some amazing children’s books out on the subject of siblings and Autism. It’s a great place to start.

2. Consistent rewards.

It’s easy to get caught up in praising your child with Autism for every mark of progress and milestone. It is necessary. You may be missing the fact that the sibling is also counting every reward… and if the score isn’t evened they will remember.

Find a way to celebrate and recognize every achievement from all of your children.

This can also go the other way: many times my daughter will feel that her brother doesn’t get a just punishment for something she may have gotten in trouble for previously. Situations like that can indeed be a sticky-wicket, as your child with ASD rarely breaks rules intentionally. Unwanted behaviors still need to be addressed, and it helps to explain to siblings that discipline may be unique to each family member but no one is “getting away with it”.

3. Sibling-only time.

Often parenting our child with Autism requires an unequal amount time and energy for that child. It’s so important to schedule regular one-on-one time with your neurotypical child. Whether it’s a ritual of ten-minute blocks each night before bed or a once a week “girls night out” (in my case it’s my daughter), this time is to be treasured together.

4. Perspective and participation.

There are times when I’m truly stumped on one of my son’s behaviors that affect the entire family dynamic. Without sending her the message that I need her to solve the problem, sometimes I ask for my daughter’s perspective. She can throw some fresh ideas on the table that I may not have considered. Again, I never make her participate if she doesn’t want to or cause her to feel that she has to have the solution. She does appreciate that I value her opinion and viewpoint.

5. Support and expectations.

It’s important for siblings to feel that they are not alone in their experiences. There are many sibling support groups to share their struggles and feelings, but don’t force it. In our case, my daughter had a good time visiting one of our local groups but quickly discovered that being with people that focus on talking about her brother still makes her feel like the world revolves around him. She flourishes when involved in groups or classes that are uniquely hers, like her art community and comedy improve classes.

Equally as important, do not expect your child to be overly responsible for the child with Autism. Unrealistic expectations can lay an unbearable amount of pressure on siblings. This isn’t a free pass to skirt all family responsibility; check in often and encourage open communication throughout the journey.

What are some ways that you keep siblings out of the shadows and keep things “fair” in your house? Share by commenting  below or on the SOA Facebook page!

autistic adults workplace

Guest Post: Autistic Adults in the Workplace

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More autistic adults are entering the workforce than ever before and with it the number of resources benefiting both employees as well as employers is growing. Not only are these autistic adults entering the workforce, they are are thriving, and this may be a direct result of the growing network of support for those with autism. With growing awareness of the different types of autism and more advice it has never been easier to be an autistic adult in the workplace.

  • What Kind of Autism? – The first thing you need to know is that autism is known as a ‘Spectrum Disorder’, meaning that autism can range from high functioning to severe. Sometimes it can be difficult to pinpoint as symptoms aren’t necessarily the same even with the same diagnosis, so it’s always best to have an open flow of communication between employer and employee so that both parties understand the specifics and the best way to handle them. Different skills and abilities will affect how they integrate into the workplace. If communication or social capabilities aren’t strong, autistic adults may prefer a quiet working environment rather than a busy office; some may not mind working with others but may have difficulties with changes and disruptions.
  • What Challenges are Commonly Faced? – While entering the workforce can be a challenge for everyone, for autistic adults they face a tough transition due to communication and social struggles. More common problems faced by autistic adults include:
  1. Difficulties adjusting to the working environment, especially if the workplace isn’t used to the needs of those with autism.
  2. Misunderstanding the emotions of others and responding in an inappropriate manner.
  3. Difficulties understanding instruction and changes in the routine.
  4. Behaviors that are obsessive or repetitive could disrupt the balance of the working environment, especially amongst other co-workers who aren’t used to or sensitive to the needs of those with autism.
  5. Processing sensory matter can sometimes interfere with work performance.

Fortunately, both employees with autism and their co-workers can overcome all of the challenges they may face through training. By researching training programs and support groups, employers can create a working environment of equals. Autistic adults can also look to improve their skills for a working environment the same way. It’s all about working together to create a professional and supportive working environment.

Thriving in the Job – With the right support and facilities autistic adults can thrive in their employment. There are many autism support organizations out there to help autistic adults find appropriate work placements as well as sourcing employers whom understand their needs. It’s important for those with autism to work in an environment where they are not discriminated and that meets their needs and capabilities; so it might be worth considering for an autistic employee to continue in a job skills support program while they are employed, to work out any communication or socialization issues.

This article was written by A. Elliott; a writer with an interest in autism awareness. She occasionally writes for Voyage Care, providers of autism care and supported living.

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?

Siblings in the Shadows

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“It’s not fair! Everything you say is always about Autism, Autism, Autism! You always write about him and put his pictures everywhere!”

My firstborn gets a little sensitive about my website and the training classes, workshops and marketing materials I create. Sure, I can remind her about all the special privileges she receives and the times we go places without her brother. But that isn’t what she wants to hear. She wants to know that she’s valued, unique, and most of all, heard.

Here are some things I’ve learned along the way about how to make sure siblings feel included.

Don’t keep them in the dark. The unknown is scary to children – especially when it’s surrounded by energy that may be tense and anxious. They are extremely sensitive to your feelings, so sugar coating or avoiding the subject of Autism in the home causes more disharmony than protect your child’s feelings.

Additionally, you should be open (in an age appropriate way) about what’s behind certain behaviors and that they are rarely, if ever intentional. Impulsivity is hard to explain, but there are some amazing children’s books out now on the subject of siblings and Autism. It’s a great place to start.

Consistent rewards. It’s easy to get caught up in praising your child with Autism for every mark of progress and milestone. It is necessary. You may be missing the fact that every reward is also being counted by the sibling… and if the score isn’t evened they will remember.

Find a way to celebrate and recognize every achievement from all of your children as special.

This can also go the other way: many times my daughter will feel that her brother doesn’t get a just punishment for something she may have gotten in trouble for previously. Situations like that can indeed be a sticky-wicket, as your child with ASD rarely breaks rules intentionally. Unwanted behaviors still need to be addressed, and it helps to explain to siblings that discipline may be unique to each family member but no one is “getting away with it”.

Sibling-only time. Often parenting our child with Autism requires an unequal amount time and energy for that child. It’s so important to schedule regular one-on-one time with your neurotypical child. Whether it’s a ritual of ten-minute blocks each night before bed or a once a week “girls night out” (in my case it’s my daughter), this time is to be treasured together.

Support and expectations. It’s important for siblings to feel that they are not alone in their experiences. There are many sibling support groups to share their struggles and feelings, but don’t force it. In our case, my daughter had a good time visiting one of our local groups but quickly discovered that being with people that focus on talking about her brother still makes her feel like the world revolves around him. She flourishes when involved in a group that is uniquely hers – an improv comedy troupe, art school, and Dungeons & Dragons are some of her favorites.

Equally as important, do not expect your child to be overly responsible for the child with Autism. Unrealistic expectations can lay an unbearable amount of pressure on siblings. This isn’t a free pass to skirt all family responsibility; check in often and encourage open communication throughout the journey.

What are some ways that you keep siblings out of the shadows and keep things “fair” in your house?

[Guest Post] The Perils of Rooster-Chasing: My Life as a Sibling

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When I was a child my family and I used to spend weeks with my grandparents in Arizona each year. My grandparents live in a rural area, on 5 acres off a dirt road—as far from suburban New Jersey life as you can get.

Summers there provided times of connection:  walks with my mom, cooking and sewing with my grandma, reading alongside my grandpa. They were times of dolce far niente, the beauty of a simple life.

Of course, sometimes it got tiresome. There were afternoons when it was too hot to do anything but lie down…but those afternoons would precede glorious, clear nights. We’d set up lawn chairs and watch the sky. The shooting stars were better than TV.

It was there that a very special photo of me and my brother, Willie, was taken.

I have few memories of the time when Willie was diagnosed with autism, and this is my favorite. This photo helps me to remember the dust under my feet, the line of Volkswagens, the turning of those wagon wheels. And it also helps me to remember three truths I’ve learned about trust and relationships.

There was a time when I thought of going to L’Arche (a faith-based non-profit  organization that creates homes where people with and without intellectual disabilities share life together) as a ‘surprising’ twist in my life. After all, I didn’t plan to pursue care-giving. I’d been an English major and Art History minor at Vassar; I didn’t study social work.

Yet when I look at this photo, I can see that my choice to come to the L’Arche community was no surprise at all. ‘As in the beginning, so in the middle, so in the end.’

When I look at this photo, I can see that my entire life was a preparation.

Being part of my particular family readied me for the challenges of L’Arche. Likewise, living L’Arche helped me to finally accept that, though growing up as Willie’s sister came with unique challenges, it also came with a very specific set of gifts.

My expression in this photo is telling; for a young girl, I look quite serious. I’m focused, concentrating hard. I’m becoming a person who understands that love and responsibility are intertwined. I’m being the big sister, making sure her little brother is looked after.

And then I look at my brother’s expression, and it seems half-anxious, half-happy. He’s doing something he wants to do, but he’s not sure it will go as planned. Even so, I see a boy who wants to get moving. That’s something I have to remember when I get over-protective:  Willie has a need to explore and dare.

In fact, it’s likely that we were heading toward the chicken coop when this photo was taken. I loved to collect eggs like a responsible ‘farm girl’…and Willie loved to chase the roosters.

Allowing my brother to play with chickens on the farm was an essential part of my parents’ responsible caregiving…because it gave Willie a chance to be himself, to embrace the dignity of personal risk.

When I look at this photo, I focus on the point of connection between us:  my hand on the yellow handle. I have a sense that my happiness is tied to his, that we are more alike than I realize. In this picture, we are too little to face hard truths; indeed, the word ‘autism’ was weightless for me then. But the phrase ‘big sister’ was—and always has been—substantive.

Being Willie’s big sister has meant letting go of so many things:  my need for control, my fear of the future, my desire to appear as part of a family that has it all together.

What helps me to let go? Allowing shared adventures to fill the space where fear used to be. Sometimes I still don’t know how to relate to Willie, but I learn as I’ve always learned:  by trying, by risking. As Theodore Roethke wrote in “The Waking,” “I learn by going where I have to go.”

This photo shows me what loving my brother once meant for me:  looking over my shoulder and towing him behind me. Being in front, in charge. Going ahead of him into the world.

Nowadays, I think that loving my brother means standing beside him. Willie doesn’t need me to pull him along anymore. He needs me to be his sister, his friend. To keep the faith.

True, there are rocks and tumbleweeds in our path. There is uncertain terrain ahead, literally and metaphorically.

Even so, I look at this photo and I think:  we have each other. We have nothing to worry about.

***

Caroline McGraw is a would-be childhood paleontologist who digs for treasure in people. She writes about finding meaning in your most challenging relationships at A Wish Come Clear. This post is an excerpt from her forthcoming book, Love’s Subversive Stance. She also serves as a copywriter, helping disability-focused non-profits and small business owners tell their story.

My Top 10 Autism Support Tools

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As you know, I’ve seen incredible progress in my son during the past five years. I am happy to report that he has never undergone any traditional therapies outside of the home; everything we have done together on this amazing journey was created from my research and personal connections made over Twitter, LinkedIn or Facebook. These connections led to expert interviews and the introduction to some really unique tools that made a huge difference in our lives. Here are my current favorites (in no set order):

Chewelry - Kid Companions is a chewable and wearable fidget that is safe, stylish and effective. It’s the perfect alternative to fidget toys and chewys and worn as “chewelry” is less-than-discreet.

This awesome product keeps my child from destroying costly toys and clothes and actually helps him focus and stay on task!
Calmer By Nature DVDs and CD – With no music or voiceovers – only the raw sounds of nature – the film helps with Stress, Anxiety, Insomnia, Sensory Problems, Alzheimer’s, Dementia, Autism, Sensory Processing Disorders, Cognitive Behavior Therapy, ADHD, and Mental Illnesses. In addition to helping Justin get relaxed at bedtime, it also:

  • Calms him before an outing he may be feeling anxious over
  • Redirects him during times of high stimulation
  • Provides him with short, 10-minute “cool down” times when he needs a sensory break
  • Gives him ideas for drawing and video creation projects
  • Starts conversations about the wildlife we see on the film

Yoga Ball - I bought my yoga ball years ago as part of my never-ending fitness research and it has been such a versatile staple in my home! From traditional use in my fitness routines to my daughter using it as a “dinosaur egg”, my son rolling around on it, and its employment as bedtime proprioceptive tool… it was the best $25 I ever spent!

Many times our evening ritual consists of “hot dog”: rolling him up in a blanket and using the yoga ball for deep compression on his back. We use different patterns as “toppings”; like circles are called onions, vertical rolling is called ketchup, etc. This is an instant calming tool that never disappoints.

Sandbells - These are our favorite fitness accessories when we work outside – we do overhead carries, throws, passes, and much more! They are safer than dumbbells and offer a sensory experience to boot!

DSi XL – Many parents would argue that video game systems are not a support tool. Here’s why I encourage my son’s use of his DSi XL: Flipnotes. He creates videos using an application that mimics old-fashioned, frame-by-frame animation. Sometimes they are 800+ pages long. He then adds music and voices to these videos and posts them in his Flipnote community, where his fellow creators rate and share them. It’s really neat to see the patience and detail that goes into the creation of these animations!

Digestive Enzymes/Probiotics – These are not a replacement for a diet free of gluten and casein (and other common culprits for food sensitivities like soy and corn!), however digestive support is essential in children on the Autism spectrum. There is a direct link between digestion and behavior. To be completely transparent, we are not on a 100% GFCF diet but we do our best! These enzymes and probiotics help step in with support where we fall short with diet alone.

EnListen® - With all the alternative, natural and creative strategies I try at home to help improve my sons symptoms and behavior deficits, the one thing I cannot do for him is change the way he processes sound! Sound Training has been such a gift and blessing in our house. While it is not a magic bullet by any means, the gains I have seen on a physical, cognitive, and adaptive level have been unmatched.

Social Media - As parents we often throw our entire being into helping those we love,  especially our children. The one thing we forget is that we need support, too! I have met some incredible people on unique but similar journeys over social media that I never would have encountered otherwise. I personally want to thank every single person that has connected with me on the social web. Your presence in my life – regardless of capacity or length of time – has made my universe a better place.

Signing Families - Louise is one of my favorite ladies on the Internet! One day we will meet in person and I bet it will be like we’ve known each other for years :) She has been teaching American Sign Language for more than 20 years to families with hearing and non-hearing children, college students, staff at public and private school systems and businesses. She also shares one of my other passions and provides materials to Emergency Responders.

Sign language has opened myriad doors for my son in regard to communication. I believe American Sign Language can give a voice to all who struggle with language for many reasons.

EFT - A little more “alternative” than some other techniques, EFT can help parents overcome limiting beliefs, fears, and frustrations, as well as deal with any grief or overwhelm that accompanies have a special needs child. I have also worked with my son directly and helped him break through a huge block he had with self esteem. It may or may not be for you, but you’ve got nothing to lose if you want to check it out!

Many times we also do EFT while listening to Jeff Gold’s Escapes… another great calming and relaxing CD of original music.

What are your favorite tools? Do you use them at home or outside of the house?

Autism: What Would You Change?

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As a parent of a child with Autism, I can certainly think of some of my child’s struggles or issues that I would love to be resolved. But I never really stopped to think… is this what my child wants?

We had an exciting weekend of “firsts” that opened my eyes in more ways than one.

This past weekend brought an amazing opportunity to attend the Canine Companions for Independence graduation and puppy matriculation ceremony… at Sea World! It was our first time there, my son’s first ride on a “big boy” roller coaster (and boy what a scary first coaster – he rode Manta!), my daughter’s first experience with Dramamine and extreme car sickness (poor bubbelah!), the first long car trip with an old friend that’s never been in a car with children for that long, and the first time I asked my son directly how he felt about having Autism.

The conversation looked like this:

“Mom? When I get older will I still have Autism inside of me?” (it’s great how he knows he is not his diagnosis)

“I’m not really sure, sweetie – no one knows what the future holds. But I was wondering, what do you like about having Autism?”

“Everything!”

“That’s awesome! How about what you don’t like? What’s really hard for you?”

“Nothing!”

“Nothing at all? Not hearing loud noises or having your body hurt sometimes?”

“Nope!”

How could this be? What about all the times we’ve gotten kicked out of public places? What about all his sensory issues? What about the screaming and crashing and spinning? It made me think: this is his norm. He doesn’t know life any other way. Could I be the one that struggles and has issues with his Autism? I was certainly frustrated when we were face to face with a magnificent polar bear and all he could see and talk about was that the child next to him had the coveted 3DS!

Could my perception of his problems really be that his behavior is not fitting into a preconceived

My little Wednesday Addams

image I’m holding for him? Do I assume he needs help sometimes when he’s just fine?

I’m not saying he doesn’t need support or that this road is easy for any of us, don’t misunderstand. In fact, I’m quite certain Justin’s sister was secretly hoping the roller coaster would shake the Autism right out of him :) But I like to question my limiting beliefs and viewpoints from time to time to see if there are any that are no longer serving me. These questions certainly helped me take a closer look at acceptance.

As we were leaving the pool following our little chat, Justin looked up and exclaimed, “Mom! It’s a beautiful nine-tenths moon out tonight!”

And I realized then that maybe he was right. I would not change a thing about him either, Autism or not.

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!

Saying a Heart Felt Thank You

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Salutations! Things are sure buzzing around my house these days! Getting ready for the holidays – keeping fingers crossed that eBay, er… um… SANTA will deliver the kids’ goods on time – and preparing for the launch of my new site, Autism Support Now. It’s still under construction, but I’ve posted a Holiday Safety article with tips for helping your child survive the chaos that often accompanies this time of year.

More importantly, as I shift into a place of really serving families that need support and information, I want to say a great big THANK YOU. Each and every one of you that takes the time out of your day to read my articles, comment on the blog, “like” my Facebook links and status updates, and Retweet me… I am blessed to have connected with all of you. I know that as I literally kick myself out of my comfort zone and answer the call to share everything I’ve learned these past five years, I look forward to bringing solutions and support to as many families as I can reach that are looking for a way out of confusion.

I was at my rope’s end so many times with no one to turn to, receiving conflicting information from everywhere I sought help. It is my mission and commitment to keep parents out of that dark place and armed with a clear-cut plan to bring out the best in their little angels.

I am also creating a more accessible training program for Emergency Responders, so look for more information on that soon!

So, from my family to yours, a huge THANK YOU for being you and dancing with me on this journey. Have the warmest and most blessed holiday!

Debi, Dorian, Justin, and Juno

I Took the 7 Link Challenge!

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I was perusing through my favorite feeds and came across a unique content idea from ProBlogger that I just HAD to use!

The article recommends publishing a list of 7 links to posts that I (and others) have written in response to 7 categories, complete with reasons why I chose each particular post.

Here are my 7 links – I hope you enjoy them!

Your first post

Top Five Reasons I Volunteer Before I began my Autism site, I helped DeKalb County start a citizen branch of support for Fire Rescue. Along with several extraordinary team members and an amazing Captain, we formed a vision for what was known at that time as the Citizen Reserve and watched it come into fruition. It was an incredible experience. Since moving out of state, I watched Citizen Reserve change organization, duties, protocols, and eventually redefine itself. It seems to have circled back around to its original vision, and I can’t wait to be involved again in any capacity!

A post you enjoyed writing the most

… and That’s What Little Boys Are Made Of Writing to share my experiences and help others ALWAYS helps me. I can talk about being patient, kind, and empathetic with ease, but I am also a single (human!) mom that balances a LOT on my daily plate. I make mistakes. I get caught in pity parties and frustration at times. I lose my patience. This post was very therapeutic for me, as it reminded me that I don’t always have to live in an the analytical and diagnostic world of Autism. Sometimes my son is just being a boy!

A post which had a great discussion

Why Does My Autistic Child Scream?! I am always honored when someone experiencing the things I write about first hand comments on my posts or tweets. As much research and energy as I put into understanding my son, I am still an outsider when it comes to Autism and Sensory Processing Disorder. I don’t feel what he feels, or see the world quite the way he does, though I always give it my all! I was thrilled to read Jason’s thorough remarks about this post, especially when it was only my second post on the blog!

A post on someone else’s blog that you wish you’d written

Little Specks of Autism by stark. raving. mad. mommy. This post is just beautiful. I related to it so much! I especially think about all the quirky rituals I have in my daily life, from having a favorite plate that no one else can use, to my odd parking space logic, to accidentally bumping my elbow on the table and having to re-create the same volume of pain on the opposite elbow for it to feel “even”. Yep, we all have little specks of Autism alright!

Your most helpful post

Parents: Who Supports Us? This is dedicated to all of us that live with and fight for our special needs children. It’s not a job for weenies! It reminds us that our feelings are natural, however appropriate or inappropriate we are judging them to be at the time, and that support for US is vital to our children’s success.

A post with a title that you are proud of

“I’m funny how? Funny like I’m a clown, I amuse you?” This was a really fun bit to write explaining how children on the Spectrum typically do not understand sarcasm. Ironically the entire post was sprinkled with said sarcasm, as it runs rampant in my house and in my head.

Actually it’s a tie…

Are You Going to the Hardware Store for a Loaf of Bread? Another playful post that starts off with a famous scene from The Electric Company. Though quite humorous, the post really hones in on our expectations and how it’s not really fair to keep demanding things from people that they are not capable of giving.

A post that you wish more people had read

A Letter to my Son – Clearing the Past Read with tissues nearby. That is all.