autism and exercise

Guest Post: Autism and Exercise

Autism is a developmental disorder of the mind, but it has a profound impact on the body as well. Children with autism can have trouble with motor function, poor coordination, myoclonal jerks, abnormal gait and posture, and sometimes difficulty sitting, lying, crawling, or walking.

Autism is incredibly complex and still largely mysterious, and treatments can require a multitude of medical and behavioral interventions, from medications and educational therapies to behavioral therapies and communication therapies. But there’s another piece of the puzzle, one that can help not only with some of the physical symptoms but with behavioral problems and quality of life in general: exercise.

Why Exercise Matters in Autism

Physical activity is important for all children, regardless of their health, but it’s especially important for autistic kids. They have higher rates of obesity than other children, for one thing, and that puts them at risk for other health conditions, from diabetes to depression. And those illnesses will only further aggravate the underlying symptoms of the autism.

Physical fitness improves general motor functioning. Studies have shown that regular exercise can lead to improvements in balance, strength, agility, speed, endurance and flexibility. It also has been shown to significantly reduce negative, repetitive behaviors such as body rocking, head nodding, object tapping, and spinning. And exercise may have an effect in reducing self-injurious or aggressive behavior.

Finally, regular exercise gives autistic children some of the positive social interaction they find difficult to maintain in their daily lives. This is particularly true of children who are able to participate in team sports, but it’s also true of children who require solitude, as there still may be interaction with coaches or therapists. Above all, autistic children who exercise are able to build self esteem and self confidence that may help them manage their symptoms and communicate more easily.

Finding the Right Approach

So what’s the right exercise regimen for your autistic child? Well, that depends. It depends on your child; their symptoms and behaviors as well as strengths and deficits. Most of all, it depends on what your child enjoys!

Whether it’s team sports or one-on-one yoga, don’t rule anything out right away. Some sports, like hockey, may seem too dangerous or too involved or too social, but that doesn’t mean they are. There are hockey teams in the United States made up entirely of developmentally disabled children.

Combine Exercise, Academics and Social Skills

Whatever type of athletics you choose, do what you can to integrate it into your child’s academic and social skills studies. Follow your child’s exercise regimen or team sport with a study period, and follow that by a social skills period. Make sure the various teachers and therapists are in contact with each other. Integrating social, academic and physical activities will help minimize your child’s cognitive and sensory symptoms.

If your child is up for a team sport, either find one that has other developmentally disabled players or place him or her on a team with players a couple of years younger. A “shadow” can help bring your child onto the team socially and athletically.

Even if your child isn’t ready for a team sport, he or she can still learn some of the basics – making a goal, catching a ball, throwing into hoop. That way, if the time comes, he or she can join in a game after school or sign up for a team.

Valerie Johnston is a health and fitness writer located in East Texas. With ambitions of one day running a marathon, writing for Healthline.com ensures she keeps up-to-date on all of the latest health and fitness news.

You Hate My Autism!

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?

Bad Behavior or Shedding Old Skin?

Have you experienced some exciting, big changes in your child with Autism after an intensive therapy program? Did you find that shortly after you noticed great progress you were also witnessing some less than desirable behaviors?

When you start to “retrain” the brain, It’s like peeling layers of an onion and getting your child closer to their true self. Being previously veiled by sensory overload and expending most of their energy simply trying to navigate through day-to-day experiences, your child is most likely now starting to take interest in people rather than objects, become curious, and feel many emotions for the first time. Do they know how to deal with these emotions? Probably not!

You may start to see some challenging (and downright ugly) behaviors and automatically assume your child is regressing or your therapy is ineffective.

Remember that it’s like starting over in many ways. They are experiencing the world around them with new senses. While in survival mode, your child was incapable of learning some of the tools necessary for coping with everyday situations. After substantial progress is made in the way they process sensory input, they are now open to understand and practice these skills for the first time. But it does take patience.

Maybe they just found their voice and are starting to express extreme likes and dislikes, or preferences for people and activities. Maybe they are so curious they are asking incessant questions about every sentence that comes out of your mouth. Perhaps they are touching things more, or having a new kind of tantrum when they don’t get their way. Take a step back and remember this is all new.

Last night my son was in his room and I started hearing unearthly screams from behind the closed door, each swelling louder than the last, with increasing frustration. He was trying to make something work that wasn’t cooperating. My first instinct as a mother was to run in and comfort him and perhaps even correct the problem; I hated hearing him so upset! There was also a part of me that was flinching with each piercing scream, and I admittedly had control the urge to yell even louder to get him to stop.

Either action would have been a true disservice to him. What I needed to do was sit with him and explain what happens when we let ourselves get that frustrated with things. I needed to teach him a manageable protocol for dealing with those feelings, before they get to the point where he’s breaking items because he can’t get it them function correctly.

I made it clear that it was always okay for him to feel whatever he was feeling, but that there were other things he could do to deal with those feelings. We talked about how to handle it when something isn’t working – not continuing to do the same thing repeatedly (only harder), but to stop, take five deep breaths and either ask for help or start asking questions. What am I not seeing? Is there another way to do this? If it can’t be done, can I be okay with that? Can mom help? Should I call for her?

Social stories and visual cues are great tools – it’s a good time to revisit some past attempts that may or may not have been successful for you before. My son and I started employing American Sign Language and certain codes from the police and fire scanner to alert each other that it’s time to use one of our new behaviors. As often as possible, I lead him to try and work out the progression on his own instead of solely giving him exact instructions.

It’s a new and exciting time when this kind of progress is made. It’s also easy to have expectations about coping skills and behaviors you assume should come with that progress. It’s my experience that I can always use a “refresher course” on the very things I’m teaching my son for the first time.

How about you? What are some behaviors you’ve mistaken for regression? What are some ways you worked through them with your child? I’d love to hear your stories, so please comment below or post them on my Facebook page so we can help each other!

Ch-Ch-Ch-Changes

This isn’t my regular writing style, but I’m going to be extremely transparent right now.

I don’t know about you, but 2010 was quite a roller coaster ride! It was a year of major upheaval, victories, disappointments, and overall waves of contrast that offered opportunities for extreme growth! My biggest disappointment is that my business hasn’t taken off and served you in the highest way possible. Why? I believe it’s because I was all over the map – trying to be everything to everyone – which resulted in burning myself out and helping no one.

Well, it’s 2011. Maybe it already started out kind of icky, or maybe I haven’t quite kickstarted my heart yet (thanks, Motley Crue!). It doesn’t really matter how yesterday was, because the fact of the matter is that we create our experiences. Each day, each hour, each minute offers a chance to change my thoughts and change my reality.

It’s time for me to get laser focused on how to help you. Whether you’ve just received an Autism diagnosis for your child or you’re at the end of your rope because you’ve tried everything an are still frustrated and overwhelmed, HELP IS ON THE WAY.

Look for changes at Spirit Of Autism, including a regular, informative newsletter, surveys on exactly WHAT YOU NEED FROM ME, and much more support in the way of programs, teleclasses, and videos. I am your advocate, and I can’t wait to learn from you as well!

Also stay tuned for more standardized emergency response training programs in the works, as I collaborate with some pretty cool people that want to help!

Family changes

In addition to all the wonderful things I am doing at home with my son, this year I am committed to going 100% Gluten and Casein free. Justin has also excitedly started a customized plan using Nutrition Response Testing and whole food supplements, and is soon to start the EnListen® Listening Training Program. I will share with you our progress and results as we go through these amazing opportunities to help Justin improve things such as:

  • attention, focus and concentration
  • self-confidence
  • cognition skills
  • reading and writing
  • comprehension and memory
  • athletic performance
  • speech clarity
  • organization
  • body function
  • digestion
  • nutritional deficiencies
  • stresses and imbalances in the body

As for my daughter, my goal last year was getting her as much sibling support as possible. However, between her brother’s needs and my business, she already has strong feelings about all the focus and attention our family puts on Autism. Our new goal (which has already started to manifest – YES!) is to get her together with like-minded, creative peers so she doesn’t feel so isolated and withdrawn. Thanks to a wonderful guardian angel I just met, she will be homeschooled with a small group of kids instead of all with me. She also just joined a D&D group, which should open some new opportunities for her to share her imagination!

As for my New Year’s goals… I vow to be more centered, focused, and step into my best self without limits. I am going to stop trying to be super woman and  start allowing help from others, breaks, even down time for myself. (WHAT?!?!) You see, the best gift I can offer myself, my children, and all of you is to shine my light as brightly as possible. To do so, I must be as happy and healthy as I can be.

What about you? What are you letting go of? What are you stepping into? I’d love to hear about it!

Parents: Who Supports Us?

“Nobody told me there’d be days like these

Nobody told me there’d be days like these

Strange days indeed”

John Lennon

So you’re the parent of a child with Autism, Sensory Processing Disorder, Pervasive Developmental Disorder, or learning disability. When was the last time you gave yourself a break? Acknowledged your courage and persistence? Applauded your patience, kindness, and compassion? Admired your own strength?

If you’re anything like me, I can easily gravitate to the space in my head that flits between judgment and criticism for my parenting mistakes and frustration and exhaustion from all the energy and extra steps required to raise a child with special needs. Especially for a single parent with no family nearby! Oh, I also reside in gratitude and wonder with the gift I have been given; the charge of creating a supportive, loving environment that will allow my children to thrive.

It is good to be grateful and to focus on the positive. I do myself a great disservice, though,  if I don’t name and honor the spectrum of feelings surrounding my situation. (spectrum, did you catch that?) :)

To quote an eBook I recently devoured, The Happy Child Guide: “As parents, many of us are faced with conditions of exhaustion, loneliness and stress. We are
usually the first to be blamed for our child’s faults, and seldom acknowledged for the good.”

I replay the many times I’ve disciplined my son when he was only trying to ease sensory issues within his body and I cringe. I think about all the times I lost my patience with his failure to follow directions when he truly didn’t understand what was being asked of him. Or the times I (sometimes still) am simply exhausted from trying to do it all and I yell. I yell.

We are doing the best we can. Parents, it is OK. Don’t put those scenes on repeat playback. Don’t cringe. Forgive yourself and move forward.

What about the guilt? Do you ever grieve? Do you ever wish the road wasn’t this rocky? Do you ever look at children behaving in a restaurant and suddenly find yourself beating down that little green monster, thinking, “why can’t I have that?” What about vacations? Flying? Going to the movies? Festivals? Do you ever feel deprived or robbed of experiences that at the moment seem impossible for your family? How about the frustration of all the IEP meetings and discussions with the schools?

Honor and release ALL your emotions

It’s OK. It doesn’t mean you love your child any less. It doesn’t mean

you are not grateful. It doesn’t mean you are selfish. It doesn’t even mean you wish things were different. We’re human. If we don’t allow these emotions to come to the surface and honor them, we cannot release them. They will fester.

I spend a great deal of time researching and talking about the right kinds of support for our children. Tools, resources, therapies… and I am glad to be able to bring you these things. But I forget perhaps the most important piece of the puzzle. If our bank is empty we having nothing left to give to them. We need support, too.

I would love to hear some of the things you do to honor, celebrate, and support yourself as a parent. And I would personally like to applaud you in your journey. Congratulations. Thank you for being you.