Tag Archives: acceptance

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?

Product Review Part I: Step Ahead of Autism

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Click Image to Order from Amazon

I just finished reading Step Ahead of Autism by Anne Moore Burnett. I have to say this is one of the most inspiring and practical Autism books I have ever had the pleasure of diving into.

As a researcher by nature, most of the books in my library discuss the biology involved in sensory integration dysfunction, the nutritional and behavioral repercussions of certain food sensitivities, and the implied neuroscience behind certain brain function as it relates to Autism. Anne’s story is a refreshing and honest tale of her journey with her son Joey, who was diagnosed at the severe end of the Autism Spectrum at age two and went on to become a successful college student.

Most of my books require hours of focus, references, and frequent sanity breaks. Step Ahead of Autism was such a flowing and effortless read; parts of the author’s journey and emotional roller coaster mimicked my exact experiences and I relived some of those feelings. But the real magic in the book is the way it is broken down into ten practical steps with exercises, techniques and tips that can instantly be put into practice. Many of the ideas are of course pertaining to making the best choices for your child, but the real inspiration is the transformation we make within ourselves – shifting our intentions, beliefs, attitudes and reactions to the diagnosis and the choices we face each day.

That being said, there is so much amazing information in this book that I will be only discussing the highlights of the first five steps in this post – Part II will be posted next week.

I really resonated with the discussion in the beginning of the book of what happens to us as parents once our child receives an official diagnosis of Autism or a developmental disorder in general. Denial, anger, and confusion are expected, but the choice is ultimately ours to wallow in a pity party of “why me” or become an advocate. I love how she says, “You can turn the denial into determination, the anger into energy, and the ‘why me’ into ‘watch me’. I know. I did, and I will show you how to do the same.”

She further states it is time to leave the “Why does autism occur” to the researchers and to move forward. YES!

This book is more about the changes we must make in ourselves and the skills we need to develop rather than trying to change the behaviors in our child. Quite a fresh perspective!

In each step Anne shares a part of her story and then turns her experience into practical tips and exercises for us to practice immediately.

Step one is TRUST. We must learn to quiet the noise of our daily lives and really reflect and pay attention – we know our child best and we must trust and explore creative solutions and limitless possibilities. She says it best that we tend to “fall into a trap of reacting to life and coping with what happens instead of actively creating a life that’s right for us.” I know this in my heart but I need daily reminders! Especially with a To-Do list that on some days seems longer than Santa’s “nice” list!

Step two is OBSERVE. The author suggests creating a timeline of your child’s behaviors with dates that you can then take to doctor visits and eventually evaluations. This will serve as the framework and ease the intake process when specialists, therapists, and other providers are to be seen.

As she shares her experience of receiving her son’s diagnosis in this chapter, I relived the road that led me to my child’s, which was much later than age two. I remember distinctly the signs and red flags; yet everyone had a strong opinion about what was going on. Half of my family and friends said things like, “He’s just being a boy! He’s got a lot of energy! Oh, my brother was the same way – he just needed to bounce on the trampoline before dinner – no biggie!” The other half came right out and said, “I think something’s wrong with your kid.”

Neither reaction sat right with me: the first lot telling me there is nothing wrong while I was clearly struggling with day-to-day routines and public outings, and of course no parent wants to hear that there is “something wrong”. Yet receiving the diagnosis had such a finality to it, and it definitely hit me like a Mack truck just like the author shares in her experience.

One of the exercises in this section is to simply unplug from the electronic world and be in the now with your child. Focus and concentrate on everything they are saying and doing with you. I recommend that for everyone, not just your child!

Also included is a thorough prescreening checklist. I really wish I had this before my son was five!

Step three is ACCEPT. Grieving is necessary – it is natural to mourn your child’s diagnosis and eventually let it arm you with a sense of new confidence. Unfortunately, many parents are stuck in permanent grief, as if an Autism diagnosis is a life sentence. We must accept the challenge as an opportunity to realize and grow our capabilities as parents. By focusing on what’s right more than what’s wrong we can empower ourselves and inspire others, as the author has done with this book.

Step four is ASCERTAIN. I did not have the gift of early intervention, but that’s ok. My son experienced several misdiagnoses before we arrived at the true picture. My journey and desire to learn more about my child rather than go with the first explanation and suggested treatment made me who I am today.

This chapter does provide a strong argument for making early diagnosis and intervention the primary goals of every parent, pediatrician, educator, and caregiver. She also offers clarity on what you should look for in the assessments you may schedule for your child, and also some classroom concerns to gather when starting to develop a needs assessment.

Step five is ADAPT. This is a biggie. We may be called upon to make big changes for the sake of our child, as the author did when it came to relocating. I love how she discussed her resistance to change, but said, “Joey needed us to move him forward as quickly and as responsibly as we could, to take full ownership of his welfare.”

This is not a job for weenies, I KNOW we all know this! In my experience we, the parents of special needs children, are a lot stronger than we thought we were. The key is to adapt, which the dictionary defines as, “to put oneself in harmony with changed circumstances.” ‘Nuff said :)

I hope Part I of this review has sparked your interest about things you can do to ensure the best possible outcome for your child. Even though I live Law of Attraction and carry a positive attitude in my pocket (which I sometimes forget to take out when I’m overwhelmed!), Anne’s story has helped me go easier on myself and take a step back. I have a lot more power than I thought and I hope you know that you do, too!

Tune in next week for Part II…

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.

What’s So Familiar About Cheese?

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Image from dvdverdict.com

I’m going to take a short break this week from the scientific philosophies, the tips and tools, the family stories, and the therapy program discussions and simply share an amusing correlation I made about Autism and a beloved, lesser-known cartoon character. Please note that by no means am I undermining, making fun of, or minimizing anything about my child or any of the brilliant angels on the Autism Spectrum. This is just something I found entertaining and a wee bit insightful about perspective.

My children used to religiously watch Cartoon Network’s “Foster’s Home for Imaginary Friends.” This cute and creative show is about imaginary friends being left to fend for themselves after the children that created them outgrew them and the elderly woman that founded a home for them to be re-adopted one day.

Somewhat mid-season, a character was introduced named Cheese. Wikipedia describes him as “a simple, pale-yellow-colored friend who debuted in “Mac Daddy”. He appears to be somewhat madcap and dim-witted, often saying incoherent or non-sequitur phrases, and breaking into sudden bouts of screaming when frightened or when he doesn’t get his way. Cheese likes goldfish crackers, cereal, juice, chocolate milk (although he is lactose-intolerant), and so on..”

Here are some other things I noted about Cheese:

  • He is never actually mischievous, he just does things in the moment that please him
  • The other characters see him as annoying to be around
  • He is unable to understand anyone else’s viewpoint or perception
  • He tries to do things himself and gets frustrated when he can’t
  • He tries to fit in with the other friends but is very socially awkward
  • He is addicted to cereal and milk, though his body can’t tolerate them (gluten and casein!)
  • He is perceived as “slow” yet he is actually quite brilliant, especially in the episode where the Headmaster punched in a random code on the new alarm system and locked everyone out of the house. Cheese actually remembered the entire (ridiculously long) sequence by tone and could repeat it verbatim; however, he would only agree to help if they made a game out of it and EVERYONE played along.
  • He repeats phrases and gets “stuck” on one or two topics of choice
  • He is a “space invader”: he often crashes into Bloo while playing or follows him around within an inch or two of him
  • He has no regard for danger and needs to be watched carefully
  • He is prone to wandering, and even took a bus through town by himself because of an innocent, unexplained thought he was compelled to follow
  • He is very loud, but he can’t tell that it’s not a normal volume
  • Some typical sensory experiences that other kids would enjoy frighten or bother him

By now, I’m sure you’re starting to see where I’m going with this :)

Maybe some viewers initially see Cheese as “that annoying kid with behavior issues who lacks discipline from his creator” (sound familiar?). I see this character as the quintessential snapshot of a high-functioning Autistic child. In fact, he’s a lot like my son. A lot.

His recurring appearances sprinkled throughout the show illustrate a journey with the other characters that really hits home for me. It’s a journey that goes from avoidance and rejection to an eventual understanding of him.  Ultimately the characters move into compassion and acceptance of Cheese into their community… and even offer their friendship.

Whether that was the creator’s intention or not, that’s my takeaway! Bravo, Craig McCracken.

Here are a couple of short videos to enjoy if you’re not familiar with the character!

Tribute to Cheese

Cheese Alarm Code