Closing the Circle for Teens & Autism

Reaching beyond the afflicted (and their families)....

I share a common need with many parents affected by autism. We want to help others and create awareness in the hope we could somehow make an impact. It is a passion I never knew I had (or was going to have).

In my own quest for raising awareness, I participate in yearly fundraising walks (Autism Speaks), "diversity day" at my son's school, social networking sites like twitter and facebook, and personal blogging. I view my efforts as somewhat cathartic with hope that I am touching others in even the slightest of ways. What gnaws at me is the fact that our pleas, experiences, or lectures are only heard by those who have a personal interest in autism already. Beyond the autistic community, is anyone really listening? Are we making the impact that we hope to?

With these questions in mind, I search for alternative (even creative methods) to reach beyond the families who are already all to aware. It is not that easy. Most activists or listening participants are those people who already have a personal experience with autism. Most of society is only aware of what they need to be aware of. If there is no need (i.e. no personal stake in understanding autism spectrum disorders), most won't hear our messages. So how do we get around this? We don't, but we can try.

Teens are my most recent target. I really feel like they can make the most difference with our children. Not monetarily, but in relatedness and their future. Money can buy research, but for me I'm searching for my son's success. I don't diminish the need to find prevention, but that won't help my son. I need to try to give him the best possible environment in finding his way through this maze. Establishing a way to connect with the teens of today, and their impressionable minds, can help him when he is finally ready for high school...and it may help my extended family of sons and daughters currently in those years.

My plan is to close the circle in creating a comprehensive awareness of autism in teens...

• A little goes a long way: The first step I took was to write my personal story to the editor of my high school's newsletter. I thought it may be a way to reconnect with fellow classmates. I'll post the letter soon in a follow-up, but it made so much more of an impression than I ever would have imagined. The letter circulated among the staff and landed in the hands of a bright student in need of a project. She took on our cause and raised funds for the Doug Flutie organization (I am from Buffalo and this was appropriate). The walls of my high school were covered with autism awareness signs from personal donors. It may only be one high school, but the students are now aware. Imagine if every family afflicted wrote to their high school. I wonder what impact that would have.
• Long shot, but you never know: Miley Cyrus is performing at the Today Show's summer concert series tomorrow. If you are able, stop by and wear your tees, bring your signs and try to grab her attention and/or generate nationwide teen awareness. I just saw her promote the campaign to go green. Why do you think she is the spokesperson? Tweens and teens will pay attention to her lead. We need celebs like Miley that relate to this targeted population and can actually make a difference.

How do we know we have come full circle in teens?

...a teen believes learning about, seeking out and engaging autistic teens is not only trendy but an enjoyable opportunity to make a new friend(s).

Autism's House

Arts for Healing - Music Therapy/New Canaan, CT

Do you have a "house" you go to where your anxieties drift away?

Most of us do, though we may no realize it. Our "house" may involve a physical activity like running or swimming, a hobby like music or reading, or busy work like cleaning or organizing. It is a place to re-group and get away for a sanity check. The importance of having a daily outlet allows us balance and tolerance.

What if you didn't have a "house" or even know what kind of "house" you needed to calm your nerves and ease frustrations? Many children on the autism spectrum suffer from such a dilemma. Their communication difficulties are a contributing factor toward some of this undiscovered area. Uncharted territory is the main culprit. If a child doesn't have an opportunity to experience their "house", how can he/she know they will be calmed or comforted? With great effort, I discovered that my son has two definite houses where his anxieties are calmed and his mind open to receiving new information and/or experiences: Music and Swimming (water/swimming- 6 mos old).

Music is his soother "house" and swimming is his comfort "house. It is important to understand the distinctions so we accommodate correctly during his time of need. Eventually, I am hopeful he will be able to independently determine his need and provide the suitable "house" to escape to.

Understanding the concept of "houses", and the necessity for an autistic child's discovery of what their own house(s) may be, is monumental to his/her progression. They provide (1)an escape for a child to take control back of their emotions and (2)is a place where they can feel most comfortable. It is during moments where our children are in one of their "houses" that we can capitalize on. My son benefits when we introduce new experiences or teach during musical moments. Though music is primarily his soother, my son's state of mind is open to new things and we take these opportunistic times to do so. Pairing music with communication(speech), academics, or socialization is a fantastic tool we use for maximum progression. Taking my son to one of his "houses" before new experiences allows him to work on his terms, not ours. It provides a sense of control and limits anxiety.

We all have our coping tools that we use for ourselves so this concept shouldn't be that foreign to any of us. The difference is that we have been given the opportunity to discover what we need because we are equipped with the typical communication tools to ask for our interests. This is where autistic children suffer and need the help of parents, grandparents, teachers, and typical peers to help them create their own "house(s)" of comfort.

What is your "house"?

My houses: quiet and creativity

Teen Choice Awards & Autism Awareness

A few days ago I turned on (the TV t0) the Teen Choice Awards. Clueless as to who many of the stars were, I watched intently hoping to get caught up with the pulse of today's young (tween and teen) population. I am still a bit confused by the popularity of some of the presenters, but I couldn't deny them all my admiration for achieving so much, so young. They are a dedicated bunch.

As I watched the Jonas Brothers as presenters, Miley Cyrus as Miley Cyrus (ask a teen to explain), Zac Efron beat out by Rob Pattinson (no surprise there), Megan Fox as a female "hottie"(no idea who she is), and the show revolve around the cast of Twilight, I realized that these are the stars that need to promote awareness for autism. Their fan base are the people who need to be aware because they may have a peer in school with autism. Here's the thing, these young kids need to be "super" aware. They need to know how a person with autism feels or acts in terms of socializing and acceptance. What better way to get the attention of this population than to promote these messages through one of the Teen Choice idols. Any message delivered through a teen idol such as Nick Jonas (or any of the above mentioned) is sure to be received in full. Does anyone know the publicists of these ambitious stars?

I can't help but try. My son, and the autistic community he is a part of, is worth my effort. This is a tall order but if I don't try, I know that the awareness to this target audience will be lost for now. No matter what, I maintain such optimism for the "unreachable". I'm not sure why. I do know that if I don't ask, I won't know. And that is the question:

How do we (the autism community) snag one of these Teen Choice personalities to take on our cause?

We need connections and luck. For now, I twitter and cross my fingers....

"Epic" Hugging and Autism

Mom, I want a hug...

...my son extends his arms as far as they can reach, wraps himself around my neck and squeezes with as much strength as he can muster up to fulfill his need. The song "Hooked on a feeling" plays in my head while my mind and body live in the moment.

I don't think I need to explain what was the best thing that happened to me today. There was a time when I wasn't sure if I would hear my son call me mommy, much less have him ask for a hug. How surreal it is to receive such a request.

Hugs or the act of hugging have great emotional and medical benefits. They release endorphins that can aid in pain relief and boosting your immune system (Article Alley). Additionally, a hug can reduce tension and help a person's confidence and self-esteem. While in the grips of a hug, a sense of security warms you, love can be reaffirmed, appreciation generated, and breathing restored. I would venture to say that hugging can be a form of meditation by getting a person to step away from the anxieties of the minute, day, or life. It is for these reasons that I put so much importance on teaching my son the steps to giving a great hug.

Have you ever been taught to give a great hug? Most of us learn the action by receiving and experiencing the feeling. This is not the case for my son who is autistic. A great hug is a reciprocal motion (it involves both, receiving and giving). Sure, the hug can be one one-sided, but the benefits are diminished. It is with this thought that I spent the past year teaching my 6 year old son the "art" of hugging.

Every night before bedtime, I kiss my son goodnight and ask for a hug. He understood when I held or hugged him during trigger moments to soothe. We even have a song I made up called(what else) "HUGS". This wasn't enough. I needed him to know the feeling of a hug for reasons that really go beyond reasoning. Usually, we just want or need a hug. It is a physical attachment but equally (if not more) emotionally driven. He needed to become a participant in our hugs and reciprocate. This is a tall expectation for a person who is uncomfortable with the contact and touch of such an engaging action. I forged forward because I felt it is necessary for his emotional health and happiness. I didn't want him missing out on that "hooked on a feeling" kind of grip.

I will admit that teaching my son to hug has its benefits. I get to look forward to at least one hug a day (I am a hug hoarder so I usually "practice" many more times when I can). I knew I needed to provide my son with the exact sequence of steps, repetition, and routine for him to discover and learn the "art" of hugging (great). I began with a break down of a hug:

1.) Desire/Emotional - " I need a hug"

2.) Body/Arms placement - I used the same words - "I need arms" (asking for arms extended and would physically extend them myself at the beginning to show him what he needed to do). This is also a universal and non-verbal signal to another person during a hug request.

3.) Arms wrapped - I physically wrapped his arms around my neck or shoulders until he began doing this movement naturally and independently.

4.) Motion - I use the same words - "Squeeze!" I squeeze tightly asking and showing him my expectation.

5.) Duration - This step is hardest for my son. I try to stay in the hug grasp for as long as I can before feeling him pull away. It is important for a hug to be substantial in order to give and get the maximum emotional benefit.

6.) Routine - I teach this at the same time each day (at bedtime). It has become part of the routine and has helped establish an expectation. My son is reciprocating my hugs and, judging by today's request, generalizing into other moments too.

Learning that hugging is not merely a rote-motion, but is an E-motion was my goal. I think I achieved it. Learning that you (readers) may need a hug was enlightening and motivated this entry. From a past posting titled "will work for", I read this comment:

Will work for "epic hugs". People don't hug enough. I want to be hugged like you mean it. to feel loved for that moment

Epic Hugs - I loved the description because when done right, all hugs can be epic.

Fun Facts on hugs:

Types of hugs: Bear Hug, Pound Hug (a man hug) - wikipedia

National Hugging Day - January 21st

HUG Therapy

Letter known for sending hugs - "O"

Sending...O O O O

The "Happy Factor"

Is My Child Happy?

I've seen, heard and read it time and time again. For those of us with children on the spectrum, this question is such a concern because of the communication deficits that go along with ASD. Communicating with a non-verbal child or one with limited language skills is very different from that of their typical counterparts. As parents, we can not be certain of their thoughts and feelings. This leaves a question mark, wondering about the state and scale of happiness in that child (with autism).

The good news - With reading and hearing so many responses on this subject, it seems to me that society (or our own little society) knows what truly is important in life....Happiness. This is what we want for our children, no matter what the circumstances. Happiness equates to quality.
In my own journey through the sea of decision making for my son and his best interests, the most valued advice came from my mother. She told me to look at each turn, fork in the road, choice, and/or decision through the eyes of my son's happiness. Try to put aside my own needs and determine whether the therapy chosen, behavior sought, or information received would benefit my son's "happy quotient". If whatever I was mulling over would somehow make my son happier, then the benefits out weigh the negatives (which may be financial, hard work, scheduling, or even discomfort). In the end, my child can and is happy.

This is a bit easier said than done. We first have to find what works for our child. With all the inconsistencies in research and results, information gaps, and the onslaught of alternative options that feed our need to do whatever it takes in deciding what is best is mind boggling. Not to mention, the findings inconclusive. Next, try to find where you are in the Happy Factor by looking at the natural disposition of your child. This, too, can be difficult to assess when there are physical ailments and sensory overload weaseling their way in to confuse the matter. Our child's baseline is skewed and often results in temper tantrums, stimming, or retracting inward. It is important to remember that these actions are symptoms and are NOT part of our child's true nature.

So, I go back to the original question that aches at the hearts of many parents and wonder why I am so assured that my son is happy. I truly believe he is. My reliance on my instincts helps. I am a believer of "go with your gut". Getting in touch with my gut feeling (or instinct) during times of doubt has helped me have confidence in knowing that my son is happy. (1)I urge parents to trust your intuition in answering this, all too important, question. (2)Look at your child. My son exudes joy in most of his daily activities. That is what keeps me going. It is not without some hard work. We create an environment he feels most comfortable in (no matter where or what we are doing). His "happy quotient" filled.

We do have daily break downs, screeching, and plain frustration (for everyone). With each episode, an array of techniques that work for my son (singing, holding, rocking, escaping etc.) are used and handled with sensitivity. I know that each of our children are so different. What works for me may not work for another. I can only offer you (my readers) this:

Follow your innate, parental instincts to find your answer

If you feel you are uncertain, look to the areas of uncertainty and try to find solutions or adjustments that work for you child to fill up his/her "happy quotient".
Some areas to consider:
He/she is most happy when:
What satisfies him/her (make a list):
What triggers make him/her upset or unmanageable:
What methods ease his/her anxieties before, during and after triggers?
daily he/she enjoys:
Daily he/she needs:

It is more important to look at the parts rather than the whole. It is human nature to focus on the out of the ordinary (sometimes negative) parts. Be fair in your determination and make sure you see what is undeniably good and happy (positive) during daily moments in your child's life.
I read this week (I think it was a Pampers newsletter), it has been discovered(research, I guess) that very sensitive children, who have a tendency to cry over the slightest thing, also laugh the most. I think that means more happiness for us folks! Let us try to block those overly sensitive moments and focus on the laughter. You may find out your child is one of the happiest.

Need an equation?

Love+Respect+Care+Laughter+Understanding+Work+Technique+Patience+Advocacy=Happy Quotient

What makes you happy?
My happy list begins with: children, hugs, kisses, chocolate, ice cream, sunny days, twirls, tickling, bubbles, clean house, family fun, my daughter's eyes, my son's dimple, singing nursery songs, hair styled (only to name a few that has come to mind first)

Back to filling up my children's happy quotient...

Autism - Family Excerpt (Socialization)

"You don't give him enough credit"

Declared my mom, speaking about my protectiveness during this last family vacation and the rantings I had about summer school inadequacies. I'll admit to my increased awareness and facilitation during social opportunities, though it is NOT due to my lack of faith in my son. The vacation allowed for much observation and has strengthened my reserve.

I am certain that many of my friends think the same as my mother and my mom is the only one that feels comfortable enough to say it. It is hard to explain (to the "outside" world) how much social interaction is a learned tool. Most of us inherently understand and quickly adjust. We recognize non-verbal ques, understand slang language, and have developed the skill to put ourselves in someone elses shoes (at least theoretically). We comprehend what someone may be thinking or feeling. These things are not quite so easy for my son. I need to teach him the intricacies of communication, reactions, and defense tactics, and I need to teach in very specific ways. Below is an excerpt of my niece's birthday party while away on my family vacation:

As the party was in full swing, the kids ran to the swing set to play on the monkey bars. My son (proud to be part of the group)was swinging on the swings but this prevented the others from using the monkey bars:

Young family member to my son: "Stop swinging! Hey c'mon, STOP SWINGING (inflection louder), we want to use the monkey bars!"
Young party friends begin addressing my son: (they get on the band wagon and begin to yell my son's name) and "STOP SWINGING!"
Son: (in his thoughts) Oh, they are yelling my name. This is fun. I'll keep swinging. I like it when they cheer me on. He smiles (a bit devilish I admit) enjoying the attention.
Young family member: GET OFF NOW!

We interjected upon seeing the growing conflict and had our son get off the swing. This move was not without its issues. In tears, he stopped swinging, then ran to us because he couldn't understand what he did or why we came to get him. I never like to create any public displays that might end up making my son out to look different, especially to his peer group. I worry that it may be embarrassing to him and try hard not to take any chances that his self-esteem be compromised.

I was disturbed to see how little tolerance the other kids had. The time frame between the request and expectation of action from the request was almost immediate. It was an eye-opener for me. Kids are very straight forward and can be callus. (Typical) kids will be (typical) kids. They are still learning the virtues of patience, so the burden is on me to find and give my son what he needs to survive in such an environment: A.C.T - Acknowledge, Communicate, Talk.

Acknowldge with a rote, verbal or non verbal response - Processing takes longer for my son. He understands requests or replies, but it takes him a bit longer to actually process the information. In a society that reacts and expects immediate gratification, this is detrimental in my son's ability to keep the peace. Peer frustration occurs. Solution: Teach my son a nod, wave, or immediate response that will work for most (if not all) circumstances and allow him the time to actually process the information, yet provide acknowledgement.

Communicate back: "You want to go on the monkey bars?"

Technique/Talk - Use words as a defense tactic, like HOLD ON! WAIT! and some slang that other kids may use in almost mocking fashion, like "Let's see you do it!, I'll stop when you come close". I plan on observing the more common defense expressions used by children, then putting together a song and social stories as teaching tools. It would be impossible to cover every situation he may get in, but it may be generic enough to use in multiple situations.

Most of our spectrum children are taught early on to take the lead from their peers. That is one of the benefits of inclusion. My son has successfully mastered the art of laughing when others laugh and to go along with the crowd to blend in and become part of the group. Though I don't believe this is all together wrong, there is a danger. My son may not decipher between when there is a true joke to join in the laughter or if the laughter of his peer group may be one of mocking. I am concerned that he may actually laugh in spite of himself. So, once again, there is a double meaning in something most parents don't have to give a second thought to.

For now, off I go to discover ways to teach my son the expression of laughter versus the expression of something more sinister, like mocking....

Autism vs. "Twilight's" Edward/Rob Pattinson

Okay, I know what you all are thinking: Comparing autism to the new crazed "Twilight" book (and/or movie) series is quite a stretch. I admit to succumbing to this new obsession. With that said, I was humored by my 6 year old (autistic) son's seemingly innocent vanity and the need to run his fingers through his hair (which he believes is long and due for a haircut). With all the press on Rob Pattinson, I couldn't help but think of the new heartthrob, and this same signature move of his, that has taken over girls hearts everywhere. I had to chuckle.

If you have been following the publicity, there is a competition between the two male love interests in the book(Team Edward/vampire vs. Team Jacob/werewolf). Many readers (or audience members) will side with one or the other depending on their own personalities, needs, or desires. As I watch my son flicking his hair to the side, I asked myself who would win a competition between Team Rob (Pattinson) vs. Team Ryebread (a nickname and the team we name ourselves during our annual walk for autism). Of course, you all know my answer... No Competition -Team Ryebread wins by a landslide! Why, you ask? Aside from the fact that he is my son and I see only him when I imagine the cutest boy in the universe, he has traits that I really do believe would endear himself to the world. I'm not an expert on the superstar, so I don't know Mr. Pattinson or his character, but I can speak for my son. Team Ryebread's heart is pure, his nature-gentle, his character strong, willing and sensitive. He has a charisma about him and if he loves you, a trust is gained that will make you feel special. Beside all these things, he is handsome (I know this, but many people tell me too) with an adorable sense of humor. Sorry Rob, even with your gorgeous hair, my vote is for team Ryebread!

I go further with this somewhat ridiculous "Twilight" series comparison and begin seeing some consistencies between (if you can imagine) autism and the "Twilight" vampire family (the Cullen's). Hear me out:

Autism

Unique/Not typical

Introvert (or viewed as)

Often ostracized

Deliberate in actions

Consistent/ Routine

Dietary constraints/"vegetarians"

Beautiful in nature

Good hearted (can't not be) Good people

Heroic (click link, it is great)

Is a family affair (Does not just affect the individual)

The Cullen's ("Twilight's" Vampire Family)

Unique/Not Typical

Introverted (or viewed as)

Ostracized from peers

Deliberate and restrained

Routine in nature to avoid detection and self preservation(especially Edward)

Dietary constraints/"vegetarians"

Beautiful

Good people

Heroic (to the people that love them)

A family affair (if you get involved, you are affected)

This may describe my affinity for the storyline. My heart skips a beat every time I think or see my son (similar to Bella) and I have an empathy for such uniqueness and struggle. I decided to write about this in hopes that young people may come across this blog in the search engines while looking for more info about their favorite "Twilight" superstar or storyline.

My message is this: Next time you come across a person with unique traits or something that just seems a little off, refer back to the Cullen's and how you (as well as Bella) were somehow able to get passed any judgements to find their true value. Reach out to that person with sincerity.