Trauma, Addiction, and Autism: Watching “THE WISDOM OF TRAUMA” with Dr. Gabor Mate.

World Mental Health day is October 10th! I love that we have a day to think about our most important organ, our minds. Zumba decided to dedicate a whole month to this and in regards to what Zumba and Zumba instructors do for the world’s mental health, a month seems more fitting. As a parent of a child living with the label of Autism, Mental Health is a huge interest of mine.

Yesterday kicked off the first day of the “Wisdom of Trauma” movie release and 7 day event of talks and content discussing the unseen epidemic of Trauma in our society. I often talk about the connection I have seen between trauma and Autism in my own life. The generational impacts of trauma, that can dysregulate the body/mind connection have been my focus of recovery for Jace and myself. As I am watching the movie, I open a page to write, so many emotions and connections, that I just have to put them somewhere. As I type this through tears of relief, knowing that I am not alone, that we are all alone, together, that life is pain and the beauty of healing, I am empowered by the ability to share this bc, we don’t have to be alone. I hope this post brings you relief and comfort from your traumas as well. And when all else fails get to a Zumba class, preferably mine lol, and dance it out! Give your brain a break and give it a beat!

Some of my favorite points Dr. Gabor Mate makes:

  1. 2 basic human needs: Attachment and Authenticity; how the need to attach out of a sense of survival as an infant and child shapes our relationship with our authentic selves.

2. Generational Trauma: It’s not your parents fault! Letting go of blame can seem like an impossible task. It goes back, it happened to them and their parents and so on. Generational trauma dissects us into groups experiencing similar traumas ie; genocide, slavery, economic, societal, and racial expectations. For example, when my ancestors moved to America, they had societal expectations to contend with as well as racial expectations put upon them, not to mention what they experienced in their homelands. This shaped the way my ancestors raised their children, and so on until it came to me and even I was raised believing that I had to prove these stereotypes wrong, focusing far too much energy on past ideals rather than my own natural ideals.

3. Addiction- Gabor sees addiction as a response to trauma, treat the trauma not the addiction. No longer are addictions seen solely as drug or alcohol use, addiction is anything that takes us away from our loved ones, harms our health, or suppresses our authentic self. It is a response to the void left by traumatic experiences and a way to self soothe our trauma. It can be anything from a syringe to an iPhone or a pair of designer shoes or even unnecessary late nights at the office. These are considered escapist behaviors in which we engage in behaviors that allow the conditioned mind to get out of the way for a moment of temporary joy, inevitably leaving us dissatisfied and craving the next fix.

4. Perception of reality: Often times, we don’t respond to what happens we respond to our perception of what happens. We are not responding to the present moment, we are responding to the past, a past trauma, and often we are alone in this perspective which creates anger, confusion, and buries the truth and facts.

If this content interest you please click the link below to learn more about “The Wisdom of Trauma” movie and access talks from the worlds leading experts in this field of mental medicine. I do not have any affiliates with this organization nor am I being paid for this, I am just a huge fan of Dr. Gabor Mate and his work.

Click here to register for this 7 day event

“With our thoughts, we make the world.”- Buddha

Getting Help: Self Directing a Community Habilitation Worker.

As Jace heads full speed into the Teen years, I am noticing how much more he wants to be social. Unfortunately, as much as I would love to take him to every event that our special needs community offers and more inclusive activities as well, having an active two-year-old doesn’t make that the easiest task. So what is a parent of a special needs teen to do? Hire a Community Habilitation worker. Sounds easy right, not exactly. You will have to do a fair amount of paperwork and it will take anywhere from 6 months to 2 years to get finalized, depending on how diligent you are with your paperwork. But once you are approved and you match your teen with an appropriate worker it will open up a world of opportunity.

So First things first is your teen old enough to start the self-direction process? If your child is of age, 16 and older, in NY other states may differ,  you can contact your MSC (Medicaid Service Coordinator) and request to start the process. Then you will have to find and hire a self-direction broker and finally after all that you will be able to hire yourself one of these amazing people who will hopefully connect with your child in a way you could not. Some people prefer to use relatives or neighbors as their workers, people they feel comfortable handing their child over to. You can also put out an ad on indeed, linkedin, or other hiring websites. I actually like to personally recruit an individual that I think will match well with my son, after all, no one knows your children better than you. I met both of my son’s workers through chance encounters, both while I myself was “Com. Habbing” an individual other than my son. People tend to be the best version of themselves on an interview and who they really are during everyday life. So it gave me a glimpse of what it might be like for Jace to be in the community with them and I liked what I saw, positive, upbeat, calm people. May not work for you but I rely on my instincts when it comes to my children. 

Warning: Self Direction is not for everyone. If you do not like paperwork and I mean like it gives you hives and your body physically rejects it, this might not be for you unless you are up for a challenge or can hire someone to do the paperwork for you. If you are not an organized person nor desire to become more organized, this may not be for you. And lastly, if you are already overwhelmed in your personal experience of raising a special needs kid you may be better off going through already established services that can do most of the paperwork for you and help guide you through already established services. There are times that it has been overwhelming for me, but I remind myself of the freedom it has granted me in choosing classes and services that are tailored to Jace’s changing interest. 

However if you are like me, a searcher, learner, and someone constantly willing to grow as an individual to meet the needs of my children, then buckle up! Going the self direct route will make you face your own challenges in a way that put me on a path of reorganization, priority alignment, goal focus and self awareness that I had no idea I was about to embark on and am forever grateful to Jace for jump starting. 

-JRED

As always please post any questions, I do my best to get back with links to help.

Learning to Love My Teen the Way He Needs to Be Loved

By Jessica R. Duggins

We all want to be loved, adults and children a like. And when we are loved, when our needs are met, we feel supported, confident, and empowered and all is right in the world. So how does this help when parenting? It reminds us to parent with love first, and responsibility second. Once we are fluent with the way our children respond to love, once we are in tuned with their needs and motivators, we can gain their trust and in turn guide them with cooperation, respect and love to healthy development.

I’m so excited to share one of my favorite visual tools that I use to remind myself of this focus. A simple chart I came across while feeling frustrated in another relationship of importance, my marriage. I found myself feeling resentful, exhausted, over entitled, and unfulfilled. I was in a rut and I put myself there by holding my most loved ones to expectations unbeknownst to them. My expectations. The expectation that they will love me as I expect them too and if they don’t then I will self destruct and hold them all responsible. That’s crazy, right? But all to common, maybe not so dramatic but common. And we deal with it, we live life banging our heads against a padded wall going maybe someday they’ll get it, if I beat it in their heads enough, maybe they will care about the things I care about at my intensity. Why would I really want that anyway? I love these people for who they are and what makes them unique to my heart.

What if instead we empathized, one of my favorite words when it comes to parenting. What makes my kiddo happy, what puts a smile on his face, what lifts his heart? Not mine, not what makes me feel safe and cozy and cared for but from his perspective.

I am a physical lover, I love hugs and cuddles, and spooning, and nuzzles.  And although I may enjoy that and maybe my two year old does also but my teen on the spectrum not so much. Physical contact makes him visibly uncomfortable. That’s not to say he doesn’t return it, but that’s because he knows its my love language, it makes my heart rise when he hugs me on his own, my smile cracks from ear to ear when he kisses me on his own, and he knows it, he’s so smart.

So how do you figure out how your child loves, when they have challenges communicating simple daily needs, or any words at all? Observe and learn. try some different approaches. The chart below is printed out over my computer because that is the place I tend to get most frustrated with my children because I am not trying to focus on them but myself.

5 languages of love- children

This moms site has some great printbles to get you started for free, after a simple email subscription, and I do suggest you print it out and put it somewhere your kids seem to get your goat most, maybe the bathroom, or kitchen. The visual concrete reference will help to create this process of rethinking your approach when parenting and hopefully ease frustration. I did not invent the Five Languages of love, no, just lucky enough to stumble upon Dr. Gary Chapman’s ideas in my research to better my communication and understanding skills in my nuclear family.

True love, unconditional love, is not easy, it does not just happen. You have to do the work and commit to change no matter how uncomfortable it may feel in the beginning. You have to make the effort to see another way of life, of love. As with all new habits, it has to be habitual for results, but when we falter we have to be kind enough to forgive ourselves and start over. Good luck guys, please comment below and share if this chart helped you out or even if  it didn’t.

-JRED

Autism- Finding Our Place in Society

J running at the Special Olympics this year. Photo courtesy of Ken Wickiser
J running at the Special Olympics this year. Photo courtesy of Ken Wickiser

A challenge almost everyone faces in life is finding ones place in society. Some of us find it with little effort and others struggle to the point of depression and even suicide. The same is true in the Autism community. However I feel as a parent it is my shared responsibility to find a community for J to be able to find his place. However it’s not just a struggle for him to find his place but mine. As an adult I had already felt that I found my place in society, but my community has changed since J’s diagnosis and thus so has my place. And there are times when it is hard to feel as though I belong somewhere. There are times when fear of J’s capabilities hinder me from finding our place.

For example, one of my favorite things in our life is J’s Special Olympics team. It was our first year and as terrifying as it was to have him join the team it was even more rewarding for J and myself. We found a great community, great kids, great parents and a feeling of acceptance that I hadn’t felt in society since J was diagnosed. However Autism is unique and we all have our own challenges with our kids, but we empathize and understand our shortcomings in a non judgmental way.

I encourage anyone who is having trouble finding a spot in your community to look into

Me, J and Big J at the end off year sports banquet for J's team. Photo courtesy of Stacey Orzell
Me, J and Big J at the end off year sports banquet for J’s team. Photo courtesy of Stacey Orzell

your local Special Olympics organization or other sports or hobbies that interest your child. And if there is no such thing in your area I encourage you to start one even if only two people show up, you gotta start somewhere. My son does not have the social skills some of his team mates have but I can see them growing because of this experience as well as his confidence as he sees there is a place for him in society.

I have also benefited from my interactions with other parents who are going through similar challenges. Not only can we relate but we offer suggestions and references, forming our own network of support.

Would love to hear back from any parents involved in your community, how it’s helped or hasn’t.  If you need help finding something comment me and I will try to help you find something in your area.

-JRED

A Quick Thought on Fear When Parenting Autism

So my last blog I wrote about exuding confidence, but what happens when its just not there? As much as I would love to say that I am always strong and always ready for action, I’m not. There are days when my fear gets the better of me, but on these days I still manage to learn something about myself, I don’t like that feeling. Which means the next time I will be stronger and ready to kick fear’s ass!

Photo Courtesy of Casey Robertson
Photo Courtesy of Casey Robertson

Spreading Awareness of the World of Autism- Applied Behavioral Analysis or ABA

If you’re a parent of a child with Autism you have probably heard the term ABA, an acronym for Applied Behavioral Analysis. If you’ve wondered exactly what therapies are available to help people with Autism, this is one of them. It is a form of therapy that is highly repetitive and firmly structured something most of our kids respond well to, but my wonder is how much comprehension is being communicated through these flash card download sessions? ABA has been considered a very successful form of therapy for children on the spectrum and unlike many forms of therapy for Autism it is scientifically supported.

With the documentation of its success I like most parents, wanted to see my son in a program that offered ABA. When my son was 3 this was not easy to find. I was warned it was very intense and I may not want my child involved in such a severe form of therapy. After hearing that I imagined how intense it could be, was he strapped to a chair and forced to look at images? Was medication involved? What were the adverse reactions if any? I began to imagine ABA as a form of Aversion Therapy similar to the kind Alex from Stanley Kubrick’s A Clockwork Orange receives.

Although ABA is intense and repetitive it is not as torturous as it was depicted to me. I think I was discouraged because of the lack of trained specialist and programs available at that time. Now, ten years later, every special education program claims to use the ABA method. They say it is “built into” the curriculum. As someone who used my own version of this method during our home school sessions, I can’t see how it could be. It is a method done one on one with minimal distraction. The information is delivered at a rapid, repetitive pace. I found the ABA method most useful during math drills as repetition with mathematics seems to work better than a slow research and discovery process, used for other subjects that require more comprehension than memorization like reading.

I noticed that J was memorizing these math equations but very rarely comprehending the results such as the value or quantity, and he couldn’t discuss it outside of the ABA sessions, which made me wonder is ABA the most effective method or is it a way to cram information into our kids brains so they can perform like parakeets? What do you think? Please respond in the comment area with your own experiences with ABA, would love to hear from Board Certified therapist on this as well.

-JRED

Website about ABA

Applied Behavior Analysis

“Applied Behavior Analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior“ -As defined by Baer,Wolf, & Risley.

7 Ways to Discipline Your Child By Discipling Yourself: Attitude, It’s Learned From Somewhere Even in Autism

Big J Teaching Little J Basketball
Big J Teaching Little J Basketball

I don’t think I realized my temper was an issue until I moved to the country. I guess that’s because everyone around me also had tempers and although most were very nice people we all reacted similarly when pushed, fight over flight. City life will do that to you. Unfortunately for a parent of a child with autism a temper is one of the worst things I could have modeled.

During one of J’s tantrums, at the height of his rebellious behavior, I caught a glimpse of myself arguing with him. I was trying to rationalize with him but my face said otherwise. I looked like I was arguing with a stranger who threatened my personal space, not my child. My tone was cold, detached from kindness and fairness just straight attitude. My face was so full of anger, eyebrows furrowed, jaw clenched, nostrils flaring. I just looked overall menacing. In my eyes, I was a monster towering over this cowering little innocent who just couldn’t find the words to express himself. And how could he with me scaring the life out of him. Mom, the one person who sort of understood him in this world turning into Mrs. Hyde right before his big frightened eyes, all because he refused to go to school. I knew in that moment that if I saw myself as a monster I’m sure J saw me similarly or worse. I never wanted to be that to him again. I had to find another way to discipline J rather than intimidation and empty threats or I wouldn’t be the only monster, I’d have a mini monster and no one to blame but myself.

Puberty has been a rough transition for J as it is for most teens especially those with special needs. I decided not to medicate him since his behaviors are manageable as of now and he does not pose a threat to himself or others. I was also seeing this new-found awareness of life around him and I did not want to squelch any progress. He still lacked the verbal skills to express himself but J understood what we were saying about him. He also knew when we were annoyed with him even if it was through something as subtle as an eye roll. I could see it affected him like it never did in the past. We had to change just as much as J was. We had to acknowledge him as a young person growing into an adult and not a child that the world had no expectations for. He was creating his own expectations of what he wanted out of life now. He wanted to be treated like an adult, like most teenagers do, he wanted responsibility and the negotiation of compromise. He wanted to be included in the planning of his day and have his choices discussed with him.

Here’s how I discipline my child with mutual respect to foster a relationship of understanding and trust:

  1. I pay attention to his emotions and try my best to acknowledge them so he feels understood and validated. That doesn’t mean I give into them.
  2. I give him good reasons for my actions, simple reasons but usually fair.
  3. I fight the urge to physically dominate him when he resists, I let him go through it and then try to state my needs at an eye level distance, not towering over him.
  4. I check my ego and let go of the feeling that since I am the parent my child must yield to my every demand. Instead I take deep breaths, check myself to make sure I’m not projecting my issues on him and empathize before I act.
  5. I inform J of the rules for every situation be it house, school or bus rules. I inform him of any new ones that may be part of a new experience or place we are headed.
  6. I always give J a warning before handing down a punishment to allow J to redirect himself.
  7. Punishments are given calmly, sternly and fairly. The punishment fits the crime and he is aware of it before it is dealt. Ex: if he is misusing his tech, he will lose time on it. If he is misbehaving somewhere he will lose TV privileges when we get home.

It sounds simple but keeping calm when J is not, can be a challenge of my own discipline. Once I had these options for myself I found that I could redirect my own frustrations, stay focused on the facts rather than my own feelings, follow through and be a calmer mom for him. It’s not always smooth sailing but we get back on course quickly sans casualties. Hope this helps anyone out there dealing with discipline troubles. Please share if this works for you or if you have any ideas you may want to share.

-JRED

It’s OK to Take a Break From Autism

Sometimes I get so caught up with J that I forget to have a life of my own. I keep tabs on friends through Facebook and try to make time to see them but life can be a big hurdle to schedule around especially with a child on the spectrum who relies on a stiffly structured routine. When I actually make that time and get out I realize how important it is to do so. I got to see a good friend of mine today that I haven’t seen since her twin girls turned one in October. Only after our brief afternoon together had I realized just how much I missed her. How great it was to be us, outside, having lunch, no kids. Of course a lot of our conversation was about our kids but that’s because they are a big part of who we are now.

I forget how important taking time for myself is. I think most parents fall into this bad habit but with a child on the spectrum there aren’t too many people you feel comfortable asking to watch your child so you can have some “me time”. So I planned to go visit my friend while the boy was in school. I think for any mom but mostly a mom raising a special needs child, every moment of down time is precious so the thought of planning my week around an outing for myself was tiring, thoughts can be very restricting. I really wanted to visit my friend, so I got all my weekly errands done early on and I asked my mom to be on call in case I got caught in traffic on my way back.

Our time together was brief, we had enough time for a little morning stroll with her girls and lunch, but it was better than not seeing her at all.  WP_20150514_002For in that short time we were able to reconnect, talk comfortably to someone outside of our daily lives and gain perspective. As my familial responsibilities have increased friendships outside of family and a five-mile radius seemed impossible and yes a friendship like we had prior to kids maybe because of time constraints but friendship can evolve. Rather than challenge each others limitations as we once did out of youthful competitiveness, we respected each others responsibilities and supported them.

It was nice to take a break from Autism and be Jessica again I was still J’s mom,  and Big J’s wife but these titles didn’t define me to my friend to her I am just Jess. I made it back before the bus came and didn’t even upset the balance of my son’s daily routine but one thing was different, his mom. I was re energized and grateful to be with him. My outing reminded me of how beneficial social interactions can be not just for myself but for J.

-JRED

5 Apps for Autism

While I was home schooling J, I used his love for tech to my advantage. Unfortunately there is a lot of unproductive technology out there which can lead to stimming. So I tried a lot of different apps before finding some great ones that keep him focused and learning, and having fun. Here are 5 Apps I used to turn my son’s iPad into a learning tool.

1. Pictello– at $19.99 it’s the priciest app on this list but worth it. J has communication challenges and this app supports sentence construction. It also allows him to create a social story of his own with pictures, video, text, and sound.

pictello

2. Shelby’s Quest– $4.99. This app focuses on fine motor and visual perceptive skills. While I was homeschooling I used this during our Occupational Therapy sessions with great success.

Shelby's Quest

3. Endless Alphabet, Reader, Numbers, and Wordplay– Free. Originator Inc. is the team behind these great apps. They each focus on the title indication, they teach letters sounds and words, reading skills and sentence structure, counting and basic addition, and spelling patterns and phonograms. The app itself is free however the packs to add additional words and content start at $4.99 a pack. I suggest trying the free trial first before committing to bundle packs. J loves this whole series so much I’ve even purchased him new packs as positive reinforcement as a reward for good behavior.

Endless Reader

4. Albert– $0.99. This app is so much fun and very challenging, think “Dumb Ways to Die” but for kids. It utilizes all tools of the iPad and even works on iPhone. It also teaches sequence as you are following Albert through out his day waking him up, helping him bathe and get dressed as well as other daily tasks like driving and grocery shopping. These mini games are challenging and as with all the apps I’ve listed I suggest playing it with your child, J and I take turns on Albert and even I don’t pass the challenge sometimes which is a great opportunity to teach J about what to do when we lose at a game.

Albert

5. Dr. Seuss Books– Oceanhouse Media brings the beloved Dr. Seuss’ books to life. An interactive book, your child won’t just read but also be able to play and record. J and I like to go page for page while we record the story. The classic “Dr. Seuss’ ABC’s” is a free sample so you may want to start there to see if your child enjoys this format before purchasing other titles. Great for kids who can get a little rough with actual books. Titles start at $2.99, they tend to go on sale every so often, usually around Dr. Seuss’ birthday (March), that’s usually when I stock up.

Dr. Seuss

These are just a few apps we’ve come to know and love in our house. They serve as a great opportunity for J and I to practice appropriate play skills such as taking turns and encouragement. They are also great while on the go as they keep him entertained and learning. I’ll add some more that we use soon. Let me know if you’ve had any success with these apps as well or any you would like me to include in the next list. Thanks.

-JRED

Spreading Awareness of the World of Autism- What is Stimming?

Ever crack your knuckles or your neck? Maybe you rub your hands when your thinking or nervous. We do these things to self soothe and feel more comfortable. Some times we do it without even noticing because it just feels good. Well that’s basically the purpose of stimming in a person living with Autism. Unlike most people who have self stimulating habits, someone on the spectrum may have no control over this. Some common stimms I’ve seen in my son J are humming, hand clapping, jumping, rocking and visual/audio stimulants. Here are some of his favorite stimm videos, he will watch these over an over, rewinding and fast forwarding to achieve the visual or audio stimulation he enjoys:

It’s a form of self soothing but can be unproductive, socially inappropriate and further detaches J from us so I try to limit this kind of stimm with redirection. I even point out to him that he is stimming so he can become aware of this behavior and eventually redirect himself toward something more enriching and socially engaging. I will usually suggest a new activity, for example if he is stimming on YouTube I will suggest going to a more interactive site like PBS Kids so we can play a game together. If he is humming or rocking while we are out I will try to apply deep pressure to his shoulders and arms, here’s an example of what I mean:

Stimming- (as defined by North Shore Pediatric Therapy ) – Stereotypy or self-stimulatory behavior refers to repetitive body movements or repetitive movement of objects. These movements are used solely to stimulate one’s own senses. This behavior is common in many individuals with developmental disabilities; it appears to be most common in children and adults with autism. It is important to note that not all self-injurious behaviors are considered to be self- stimulatory. Self-injurious behavior can also be communicative.

If you have any stimming stories or recommendations please share below and share to spread the awareness of why people with Autism stimm. Thanks.

-JRED

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