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?

Product Review Part I: Step Ahead of Autism

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…

It’s IEP Time… Put Our Dukes Down?

It can be hard not to go into an IEP meeting with an attitude of “me vs. them”, ready to defend your child. Especially if you’ve been pelted with behavioral labels, accused of not disciplining enough, or relentlessly badgered about why you are not medicating. And believe me, I’ve been called some really inappropriate names during some IEP meetings by Special Ed district representatives that could have cost them their jobs.

No parent should be a doormat, but I encourage you to try a shift in your attitude before your next meeting. This hasn’t been an easy journey for me, especially during the two-year diagnosis process that seemed to be more about what category my child fell in than what he needed to help him be more successful in the classroom.

However, when I started coming from a place of appreciation, partnership, and resourceful ideas the IEP process really transformed into a positive experience. I’m not saying there aren’t any challenges or issues, or that all the resources I feel should be in place are. There are still budget constraints and understaffed schools; there are still many misunderstandings about what he can help and what he does to try and ease a sensory experience. But we are much closer these days, especially when I come into the process with honesty, willingness, and an open mind.

Appreciation. Instead of balking about what I see wrong straight out of the gate, I always start with comments of celebration and sincere thanks for what the teachers and staff ARE providing.  Remember, their job isn’t easy, either!

Keep moving forward. I like to keep a solution-oriented tone in the meetings, regardless of any disappointments or misunderstandings I may have experienced in prior sessions. By focusing on what I feel NEEDS to happen instead of all the things we tried that didn’t work out so great, it keeps the whole team in a forward momentum. This doesn’t mean I ignore things that went wrong, but fixating on them will not lend anything to the outcome of the meeting. Remember, we are ultimately there to find and ask for tools that will help our children succeed.

Bring some tools of your own. I am always researching scheduling ideas, resources, and routines to help us at home. I like to come into IEP meetings with a list of things that are currently working well for us, adjusting each for the classroom if I can. I also openly talk about some of the challenges I still experience and ask for input. It’s been my experience that these simple actions can be disarming and set the stage for working together.

Keep talking about the goal. Whenever we get hung up on a certain behavior or issue and I feel things may be getting tense or heated, I sometimes break the moment with a statement like, “My goal for him is to teach him to ask for xxxx appropriately, or self-correct if he is able,” or “I’m aiming for a decrease in the need for small-group time this quarter.” Sometimes we just need a small reminder of why we are there.

Aim high. Every so often, the team will suggest a support be put in place before we have experienced it. I have actually asked for the least amount of support at times to see what my son was capable of. By assuming he will have trouble in a certain situation without actually letting him try is setting him up to aim low in the future. Sometimes they really surprise you!

Overall, it is very easy to take things personally and experience frustration in the IEP process. You know your child best. However, I have personally seen the magic that happens when I have shifted the focus to taking the higher road and keeping my side of the street clean. There’s a strange ripple effect in your world when you stop expecting everyone to be against you : )

DENIED! Why am I Doing the Happy Dance?

Six months ago I applied for SSI Disability to help me provide for my Autistic son. Meeting the income guidelines for this assistance, I jumped through all the required hoops of their dog and pony show. I supplied them with a 92-page history and timeline of all Justin’s diagnoses, school records, IEP copies, behavioral and developmental assessments, medication history (yes, I at one time investigated that route out of sheer desperation – a story for another day), and every behavior slip, suspension and punishment notice he’d ever received.

I saw their doctor. I followed up, week after week, inquiring about their decision. All the while, in my journey, I was learning about my son and Autism. I was not happy with the doctor visits, the medication attempt, the rigid recommendations, the books, the cookie-cutter approaches.

In this journey I came across a book by Dr. Robert Melillo called Disconnected Kids. Along with the centers he founded, this book offered a scientifically proven theory about a hemispheric imbalance in children with Autism, ADHD, Dyslexia, Tourette’s, and other disorders. I voraciously digested this information and began applying what I learned immediately. I tested and modified some of the sensory exercises and techniques. I expanded my research on the nutritional guidelines. I drew some new conclusions.

I began supplementing with EFT, teaching my son to tap and performing surrogate tapping when he could not. I also began graciously opening my heart and accepting the gifts of his beautiful mind. The docile nature of our beautiful Alaskan Malamute, Juno, has also had an extremely calming effect on him.

These things combined have changed our world. Oh, our journey is nowhere complete, as he still cannot tie his shoes or ride a bike; we still have days where a trip to the grocery store is a nightmare. It still takes an Act of Congress to get him ready in the morning on time for school. We are working on it, as I refine the techniques that have shown me hope and success. He is now able to smell and recognize scents; we can go to the movies and sit through an entire film; I don’t receive calls to pick him up from school early for being out of control… and he was denied for SSI.

According to my letter, “… the evidence does not show that these conditions are severe enough to be disabling. We have decided that Justin’s condition is not disabling under our rules.”

I’ve been denied, and I’m ecstatic! What mother would not want this kind of news?