Tag Archives: spirit of autism

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?

Round Two of Sound Training – My Son’s New Gains

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We’ve successfully completed our second round (“intensive”) of Sound Training and I am once again blown away by my son’s progress. It wasn’t until I sat down to create his update that I realized just how many new gains I’ve observed in the past few weeks.

During the “off time”, his brain is integrating all the changes that were created during his Listening Time. Remember, children may have different rates of integration when it comes to seeing noticeable gains. It is a process – not an overnight miracle!

You can check out the list of gains (and what I thought might be regression!) I saw after his first intensive here.

What’s new since then?

  • Traveled for 7.5 hours in someone else’s car (with his immediate family and family friend) with no meltdowns or major issues (whoa! No seat kicking, bathroom catastrophes or tantrums!)
  • Interacted with a family friend – engaged her in games and conversation (he acted calm and polite, using manners and asking lots of questions – bravo!)
  • Took direction from family friend (responded favorably when asked to quiet loud voices or stop a behavior)
  • Rode his first “big person” roller coaster without fear (and what a ride to choose as a first! Dangling from the car, suspended horizontally… loops and craziness ensued!)
  • Looks to me for facial expressions/reaction/approval when he’s about to exhibit a behavior or perform an action (this is HUGE! The entire thought process of ‘will Mom get mad if I do this?’ was never present. He was simply incapable of processing a connection like that. I can’t be more thrilled.)
  • Brought two Cs up to As and Bs on fourth quarter report card (yeah!)
  • Started asking me questions about his Autism – wants to learn more, recognizes that he is not his diagnosis (his brain is really hungry to learn, not just soak up extraneous video game facts)
  • Willingness to help – will bring objects to or do favors for others (again – whoa! He even gets something from another room for his older sister if she asks!)
  • Desires more independence – makes own breakfast at times, somewhat dresses himself more often (this is extremely exciting for me. I sometimes forget how much I have to do for him until I take a step back and realize that it is atypical for a child his age)
  • Continues to create flipnote videos with more expressions and emotions in the scenarios (not just aping his favorite characters)
  • Was able to participate in the birth process and early rearing of six puppies until five were adopted out (this would have been a very unsafe and unsettling situation if he hadn’t made this incredible progress)
  • Is gentle and caring with the puppy we kept (I still have to keep a close watch, but he is interacting with animals much more appropriately than he had with previous pets)
  • Is a lot more expressive, which of course is not always an ideal situation for ME even though it is good for him to be in touch with his feelings (I’m BORED! Will this EVER END? I don’t WANT TO!)

All in all, I can’t WAIT to see what’s next, as the struggles are falling away from him like layers of skin shed and his true personality starts to really shine.

Don’t forget! If you want to hear more about Sound Training IN PERSON and you’re in the Atlanta area, come to An Evening Seminar with Angie Marshall… click here for the deets!

In other news…

I had my first mission as a volunteer Bike Medic with the Fire Department at the PDK Good Neighbor Day Air Show Saturday. I trained hard for this during the month of May and was absolutely honored to be able to serve my community as a First Responder in this capacity. I’m in a world of hurt currently, but it is the pain of accomplishment, so I’ll survive :)

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.

Regression or Progression?

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

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

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

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

Less than desirable changes noticed:

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

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

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

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

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

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

How Important is Digestive Support?

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It’s well documented that many children on the Autism spectrum can have a broad range of digestive struggles.  For some it can manifest as constipation, diarrhea, bloating or abdominal pain. Until recently, my child’s bathroom “sessions” would typically last 45 minutes or more, and he would have myriad accidents because he simply did not look forward to the painful experience.

Other children may have no outward appearance of symptoms but within their digestive tract there is disorder in the form of inflammation, leaky gut and food intolerances or sensitivities.

I recently started my son on a digestive enzyme, specifically formulated to aid in the digestion of gluten and casein.  Our bodies already contain enzymes that break down our food when we eat.  It’s imperative that by the time food reaches our intestines it is broken down properly, allowing nutrients to be absorbed into our bloodstream and taken to the cells around the body where they are needed most.  Proteins, fats and carbohydrates are broken down by enzymes, but for many children with Autism they seem to have problems breaking down and digesting their food properly.

Intolerances to certain foods, particularly wheat and dairy, are a common issue.  The proteins in these foods are not broken down properly and can cause damage to the intestinal lining and cross – undigested – into the blood, where they can cause many symptoms including behavioral problems.  Also what happens for many children is that during the process of attempting to break down these proteins, opiate-like substances are formed which can cross into the bloodstream and reach the brain. As a result, children may enter a drug-like state and can experience symptoms such as poor communication, lack of eye contact, drowsiness and exacerbated spatial issues.

Poor Digestion of Sugars and Fats

Many children with Autism have also been found unable to break down sugars, which can feed unwanted gut bacteria. When the digestive tract is overgrown with unwanted bacteria this can increase intestinal inflammation and can lead to a leaky gut, which allows undigested food to pass into the bloodstream and can aggravate many of their symptoms.

In addition to the Gluten Defense, I also began my child on Reuteri powdered probiotic to give him additional support for this bacteria overgrowth. Both of these products have no odor or taste, making it seamless and effortless to hide in his food. Other supplements I have tried have been instantly detected and rejected due to texture, odor, color, or taste, despite my best sneaky efforts. So far, so good!

Poor absorption of fats is also common, and it’s important for health that fats are broken down properly so that essential fatty acids can be used in the body. These essential fats are vital for digestive and immune health, as well as cognitive function.

To top off this super trio of support, I also added Udo’s Oil 3-6-9 Blend, an Omega Fatty Acid DHA supplement. I add this to applesauce, smoothies, and sometimes even in his morning cereal.

It’s important to remember that digestive enzymes are not a substitute for a gluten/casein elimination diet, but should be seen as one tool in a complete strategy.  There are no reported side effects of these natural products; however, as with any treatment, you may first observe worsening behavior, as unwanted gut bacteria may be dying off. Any time toxins are released from the body a small “healing crisis” may be experienced temporarily. It’s important to stick to your supplement plan, unless your child is experiencing an extreme negative symptom. You know your child best.

We just started our supplements, so I will report back our progress each week. I’d love to hear others’ experience with digestive enzymes, probiotics, and omega fatty acid supplements as well! Please comment below, or leave me some feedback on Facebook or Twitter!

A Valiant Effort + Failure = Great New Programs

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So I passed the Firefighter written exam with flying colors – very exciting!  I come from a family of firefighters, paramedics, and police officers, and this opportunity made me light up with passion.  I helped start our county’s Citizen Volunteer programs with Fire Rescue four years ago and have been chomping at the bit ever since to get on board.

I then mentally and physically prepared for the Physical Ability Test (PAT). At 39 years young, 5’2″, and <110 lbs, I knew it was a stretch for me to pass this test but I was ready. I’ve been working out intensely six days a week for over three years. Oh, I knew it would be hard… but I honestly thought I had it in the bag.

I did not pass the PAT. You know what? I gave it my all. I didn’t walk away, didn’t give up, and ran the course until I had nothing left in me. I tried! I am so grateful for the chance to go for it.

Not to play the classic “Fox and the Grapes” theme, but here are some great reasons why I’m a bit relieved to have this behind me. These are not insurmountable challenges that I couldn’t have found solutions for with some crafty brainstorming, but nonetheless I am looking at realistic facts:

I am a single mom with a special needs child. 24-hour shifts would require very creative solutions! Childcare, school special events, and holidays all had potential to fall on my shifts. And they would! Also, who would the school call for a sick child? Could I leave the fireground to pick up a child having a sensory meltdown? I don’t think so!

Serving the Autism Community. The academy takes 100% of your time, energy, efforts, and dedication, as it should. Yet I recognize a great need in the Autism community for tools and support that simply aren’t available right now. I am committed to using my gifts in the highest way possible.

Children on the Spectrum Have Trouble Moving

  • There is a marked higher instance of gross motor deficits in children with Autism than their neurotypical peers
  • Gross motor deficits can include abnormal gait pattern, hip flexibility, spatial awareness, and trunk stability
  • These issues DO NOT SELF-CORRECT in time
  • Self-esteem suffers; they cannot perform many movements, cannot understand what’s expected of them, and in turn become even more socially awkward
  • Organized sports do not set the foundation for long-term skills and overcoming movement deficits
  • Many schools have cut or don’t regularly offer PE!
  • It’s been proven that children (and adults!) perform better on tests and cognitive functioning after they’ve moved around

The Fitness 4 Autism Program

  • I provide custom profile assessments to determine the quality of movement pattern and any deficits or exceptions that may be relevant
  • Pushing, pulling, squatting, and rotating movements done together will directly benefit physical, adaptive, and cognitive abilities
  • Working with your child and fitness boosts confidence, independence, and self-esteem and teaches goal setting
  • No expensive, large equipment needed! I come to you.
  • These movements taught also benefit not just sensory and gross motor skills, but fine motor skills as well
  • Speech targets, communication, and behavioral targets can also be incorporated into the program
  • Sharing this program with your child will also benefit the entire family – it sets everyone up for long-term health and fitness

Special Needs Training for Emergency Responders

With the staggering number of children being born on the Autism spectrum, one sector that absolutely needs to understand how these children process information and respond to situations is public safety. First and emergency responders are not trained to recognize and handle the unique physical and behavioral symptoms of Autistic patients or victims, which are likely to be exacerbated by a crisis or injury.

Do you think an Emergency Responder would know how to handle these behaviors?

  • Difficulty understanding language or gestures
  • Inability to follow multiple commands
  • Limited or no speech, or repetitive phrases only
  • Avoids eye contact
  • Spinning, rocking, flapping arms, hitting self, biting self
  • Inappropriate laughter or response
  • May not feel cold, heat, or pain in a typical manner
  • Hyper or hypo sensitivity to light, sound, smell, touch, or taste
  • Abnormal fears or lack of fear in a dangerous situation

I provide workshops and training classes for EMS, Fire Departments, Police Departments, Red Cross, and others where needed.

Overall, I am grateful to have a taste of following one of my dreams. I’m even more grateful to be able to continue volunteering for the county, helping to prepare families for disasters and hazards and being trained and able to respond to them when they arise.

Most of all, I am ecstatic that I can use my passions and dreams (and failures!) to refocus my energy and help children and families affected by Autism.

For more information on Fitness 4 Autism Program or Training for Emergency Responders, call 404.939.6211 or email Debi@SpiritOfAutism.org

Come to Six Flags Autism Awareness Day!

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Calling all fellow Atlantans! I am very proud to be a part of this project!!

I humbly invite you to

Six Flags National Autism Awareness Day

Saturday, August 21, 2010

We invite you to our AUTISM AWARENESS DAY on Saturday, August 21, 2010. Enjoy a day of water fun with family and friends!

ORDER TODAY AND RECEIVE TICKETS FOR THE GREAT PROMOTIONAL RATE OF $25.00 EACH! TICKETS WILL NOT BE SOLD ON EVENT DAY.

1.   ONLINE PURCHASE INSTRUCTIONS:

Step 1: Go to sixflags.com

Step 2: Pick a park – Six Flags White Water

Step 3: Go to PromoCode Box in upper right hand corner

Step 4: Enter the promo code WWAUTISM and purchase your tickets today!

ORDER ONLINE TODAY BY CLICKING HERE!

TELL ALL YOUR FRIENDS! SHARE IT ON FACEBOOK AND TWITTER!!

PARTIAL PROCEEDS FROM TICKET SALES WILL BE DONATED TO SPIRIT OF AUTISM.