Balance (Really?)

Is balance really possible? For most adults, finding balance is the journey between work and home, kids and self, or the discovery of true meaning in ones life. I believe the shift of balance changes daily. What is important one day, is put on the back burner the next. I suppose it is by design that we spread the weight of responsibilities and, with some effort, find balance.

Here's the thing, there is one area of my life that is never put on the back burner. For me, my autistic sons struggle to integrate with his peers, his academic potential, and what he can ultimately do in his life is foremost in my mind. As I clean my house, go grocery shopping, volunteer at school, even during my sleeping hours, the weight of trying to balance out my son's life is too important to make most other things matter.

What do I do to try to get some balance in this area of my life? I advocate (at least try), I question, I have play dates, and I worry if I am doing enough. Will I ever feel like I have done enough? The dreaded realization is occurring. As I talk with the school about my son's progress and the need to see a more defined measurement (with progress monitoring and graphing models), the teacher gingerly walks a line trying to instruct me to be proud of what he can do, not what he can't. The message was clear and was this, "your son is a gentle and kind person. Love him for those qualities. Your son's quality of life depends upon you coming to terms with his abilities. Measuring progress won't help him when he simply can't do the same things his peers can". I understand what her words of wisdom were suggesting. I appreciate that she is walking the rope with me and trying to direct me while I am feeling so lost. What do I do with this information? How do I find the balance for my child so that he can work up to his potential, but not expect him to do, be or learn something that is just too difficult for him? Where is the balance for my son?

So, I struggle with these questions today. As my eye twitches from the stress, I do not believe that my son needs to settle. That I need to settle. I will still expect accountability from the school in progress monitoring. Additionally, I can tell you this: What is in the best interest of my son is to realize his limited capabilities, but expect him to be able to adapt and overcome them. I believe there is a way to get him from A to Z. It may not be the same course as other parents take with their children, but there is a way.

For now, balance isn't really an option. How about you? Do you believe balance is possible?

Winter Break

Thank God winter break is close to over. It has not been the best run of my life. The stress of creating successful play dates through a morning of bowling, a "double play" (date) the next afternoon , and tunes blaring from the television (repeatedly), as the kids practice their moves through the Wii game, "Just Dance 2", was just the beginning. Wii was in high demand and constant refereeing created a huge amount of family disharmony. The bait and switch technique was deployed to no avail. No matter what plans were made, there always seemed to be a problem and "mom!" was squealed throughout the house.

"Let's go to the library and Friendly's for a vacation lunch," I suggested. That should help keep me sane and the kids happy, I thought. It did. Until each child received a different color balloon. Sure enough, my typical child was unhappy with her color selection. It wasn't a "girl" color. I was beginning to feel myself getting a bit crazed. Didn't we just go to Friendly's? These kids should be happier than ever. As a parent, most of us know the ingenious saying, "you get what you get, and you don't get upset," which was exactly what I told her. Not buying the philosophy completely, she decided that she was going to paint her balloon. I like to give my children creative freedom, so painting the balloon, it is. Have you ever painted a balloon with tempura paint?

As the kids painted, the balloon lost it "lift". The paint weighed it down and the helium couldn't do its job. Aside from the dilemma of the paint drying, my son (with PDD-NOS) believed he had washed his hands after the project. I was still trying to figure out the drying spot so that my whole house wouldn't get paint all over it and I see my son jumping and leaning on our couch pillow....red painted hand prints decorated the complete throw pillow. The next morning, I find the balloons on the ground only to notice that all the paint had chipped completely off and was, now lying on my hard wood and rugs.

After feeling guilty for my inappropriately yelling at my son for the pillow (as he didn't knowingly ruin my pillow and, in his mind, felt his hands were washed) and other moments this past week, I knew I was sure to be dropped from the running for mother of the year award. Then I read this posting from MOM- Not Otherwise Specified (click here to go to post). It provided me with a little validation. Here is an excerpt from the post:
"you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time".

That about sums it up.

Autism - Learning Style is Important

Autism - Learning Styles and Life/Educational Skills Attainment

Author:

Louise Page

 

Autism - Learning Styles and Life/Educational Skills Attainment

When ascertaining what may be the best ways to help your child with autism to learn various educational, social, behavioural and emotional (etc.) skills; gaining accurate knowledge of what may be your child’s learning style will greatly enhance and promote a higher success or achievement in your child’s learning of such skills.

Understanding their particular learning style/s is imperative too in respecting the unique individual that they are.

Imagine if someone was trying to teach you a skill in a language you didn’t understand and they expected you to get it? This would place an unnecessary stress on you in trying to understand what you were being asked to ‘get’; you would feel frustrated; possibly even feel inadequate or saddened that you can’t understand the method/s or message and misunderstood as an individual.

Also, the ‘deliverer’ of the skills ‘training’ may become frustrated or perhaps believe that the child may not be capable of being able to learn effectively, in other words the child may be perceived as being ‘low functioning’ when in fact they are not and haven’t been provided with the opportunity to learn a skill according to their particular learning style and needs. 

Yet, if the ‘deliverer’ of the skills training understood the particular learning style of the autistic child, they will then tailor the learning method of the skill to be acquired to suit that child, and thus give the greatest potential of a successful outcome.

Some individuals, for example, truly believe that pictorial methods (such as social stories for learning social skills) are the only way to go with autistic children. But some autistic children have difficulty in understanding a visual concept. Some people believe that the only way to deliver skills training is by utilizing words, when perhaps for that child a repertoire of pictures may produce the best results.

What are the predominant learning styles?

Physical (kinesthetic/tactile) – learning by touch, hands, body, movement etc.,

Aural (auditory) – learning with sounds and/or music (rhythm?),

Visual (spatial) – learning via pictures, symbols and spatial awareness,

Verbal (linguistic) – learning by the use of words, written and oral,

Social – learning via group efforts or with another,

Solitary (by self) – learning by doing things alone, by self, for self,

Logical - learning through reasoning, using systems, logic (a mathematical style)

So, depending on an individual’s, or child’s, learning style/s (which could be a combination of two or more), their receptiveness and abilities to process the information being provided in the skills ‘teaching’ or ‘training’ will depend on, e.g. the mode of the information delivery. Retention of the information will depend on many things, such as; quality of the information, appropriate skill level of the information, the teacher/deliverer of the info., the disposition of the child (e.g. health, intellectual abilities, present emotional state, environmental distractions etc.), etc..

Another dynamic which will impact on the autistic child’s learning of various skills, will be their innate temperament. Their temperament will also dictate how they will react to what they are being taught or how they interact with another; and have an effect on how they will respond to others and skill acquisition.

Their temperament will also possibly help determine how receptive they will be to learning a new skill. If, on the day of being offered a new skill, the autistic child is feeling upset by something or someone, they may not be very receptive to listening or ‘joining’ with the person trying to ‘teach’ them a new skill.

So when it comes to helping our autistic children to enjoy learning, (and achieve such successfully), about the world they live in; lessons at school or any other educational, social (etc.) situation, we need to understand how our autistic children ‘tick’, what helps them learn and what works for them.

There is no one-size-fits-all approach for autistic children. Each child is uniquely individual and many different dynamics inherent or acquired, regarding their being, will determine what are the best ways to respectfully help them to acquire or fine tune many life and educational skills and achieve such successfully.

Article Source: http://www.articlesbase.com/disabilities-articles/autism-learning-styles-and-lifeeducational-skills-attainment-1150688.html

About the Author

Louise Page
My career involves Professional Counselling (Diploma, A.I.P.C.), majored in Child Development and Effective Parenting, Youth and Career counselling. I am also professionally trained Autism Therapist , author, Integration Aide, Literacy Tutor, children\'s story writer and professional illustrator.
The Heart and Soul of Autism www.heartandsoulofautism.blogspot.com/

Amazed by Silly Bandz

Are you familiar with the Silly Bandz craze?

In our home, the obsession has diminished, but I have a feeling the fad will begin again after school starts up. Even though I think they are ridiculous, I am jealous of the person who thought up these things. What do I know?

I admit, it is hard to even imagine where the connection to Autism and Silly Bandz could possibly be. I assure you, I was just as confused until my son came walking in the door last year with a couple of rubber banded animals around his wrist. They were given to him by a little girl admirer from his class. It was really sweet. The thing is, my son is autistic and has a rigidity about textures. His clothes are always examined for any tags, threads, or scratchy feeling. The fact that he will adorn 20 rubber bands in multiple shapes and colors, travelling up his wrist and arm is short of miraculous!

I am perplexed by, not only his tolerance for the Silly Bandz around his wrist, but his extreme interest in buying more and more and more of them. I am learning that my son is acutely aware of what his typical peers are interested in. Additionally, it is this awareness that seems to be a motivator in trumping his natural behaviors. In this case, resistance to certain textures. He wants to be part of the group and do what everyone is doing. I'm thrilled that he can have such focus when he wants or needs to. Though this is not an actual research study, in which there are two groups of children receiving either a trial intervention method or a placebo, it confirms the benefit of mainstream classrooms and the effects of socializing with typical peers. At least for me it does.

Aside from the acknowledgment that he is trying to conform to the group, I will go one step further and venture a thought that the Silly Bandz are helping my son's sensory system. While the teachers limit the bracelets from the class because of distraction, for my son, the bracelets become an item to "play or fidgit" with during rug or work time. This provides the input he needs to concentrate. Who would have thought? Not me. I don't know much about pressure points, but I think the wrist is one area that can help calm a person. I wonder, could the Silly Bandz provide such a benefit?

I must applaud the Silly Bandz company for taking a random thought, manufacturing the product, and building a following of elementary children. Merchandising the product at the checkout lines are a complete thorn in every parents side, still I must thank them for giving my child an outlet to be like his typical peers. For me, you are as good as therapy.

Research on Autism

A new study found that some traits of autism (specifically eye movements) may be found in family members, suggesting a genetic link. Read more here:

http://www.msnbc.msn.com/id/38527136/ns/health-mental_health/

A Special Dentist for Special Kids

A Special Dentist for Special Kids

Welcome "the" Wii

Yippee Kai, Wii!

A couple of weeks ago, my mother came to visit during winter break. Upon "Grammy's" arrival, two wrapped gifts were given to each of the kids to open simultaneously. My son had no idea what was in store for him. As he ripped off the paper, he screeched with excitement:

"The wii!!!...Mom-look, the wii!!!"

A little history: After we came home from Christmas vacation where my son (with autism) played "the" wii, he was hooked. Not only was my son hooked on playing the game, but the entire family was enamored with watching him either play or cheer for others. It is one of the most amusing forms of entertainment. The excitement level he exudes for every player and the amusement he receives from watching the mii (in wii terms, the character you use to participate in all the games), go through triumphs-of passing giant cannon balls and trials-of being bumped off the tight rope and falling to its demise, is like no other experience. It may even sound a little depressing but I can assure you that my son's level of cheering and shear devotion to the mii player is infectious. The family was sucked into his level of happiness.

My son went back to school and shared the story of how he played "the" wii (a term my son invented). In adding "the" as the preface to wii , it is now an endearing term where visuals of my son rootin, tootin, screechin and preachin are attached. Naturally, I would have loved to give him such a gift, but "the" wii is much too luxurious of an item for us. We are on a buy what you need budget and "the" wii is definitely NOT in the budget. I proceeded to seek out sweepstakes in hopes of even the slightest possibility of winning "the" wii for my precious child. Little did I expect that what Grammy came through with is more than an extremely generous gift for us. It is the opportunity for my son to feel pride in his typical peer group.

Scheduling several play dates for my son has been a bit excruciating for me. Even though I know boys are different than girls in interests and nature of play, two hours of entertaining boys is a daunting task for typical boys. Add to that, one boy who will run away at the bat of an eye or highlight other unique behaviors (like screeching or stimming) and it can make me unravel. Their attention span lasts for about 5 minutes. By the time I set something up for the boys to play with, they are on to the next thing. Forget baking or doing projects like sweet, little girls. No way Jose! There has to be physical play, building, knocking down, and throwing involved. Then there was the little problem that my son and his friend never seemed to be playing the same thing. I was quickly wondering what these play dates were actually accomplishing.

I questioned my son's team of professionals, in hopes of learning or discovering something I was missing. I found out that I was missing video games in the repertoire of activities. I was instructed that boys interests revolve heavily around video games and that they often play separate. Knowing this tidbit of information, you can only imagine my excitement (and relief) when my mother gave us a video game! My prayers were answered. "The" wii will be my sons tool to use while working on his social weaknesses. It is perfect! During the next play date, the friend walks in the door and is greeted by my anxious son, announcing that he has "the" wii. The little boy says:

"oh, my mother doesn't let me play wii!"

Ugh!..with a smile.

Side note: The little boy did end up playing. It is still not easy but, with my son's whimsical wii attitude, I am still smiling.

***Wii tip: If you have kids who like to impersonate you (and use your mii), like my guy does, it might be good to attach a password. Currently, my son enjoys using his step grandfather's mii. He is bald, with glasses and it looks ridiculous. I have to admit, it is one of the joys of watching my son and "the" wii. By the way, my son also set up a mii and named him GOD. He likes to be GOD as well.

Thank you Grammy! Thank you, "the" wii!

Baby Einstein videos: educated my autistic son

Baby Einstein, I'll vow for you!

Don't we have greater problems to take care of in this world? Yes, our children are our most valued possessions, but destroying the reputation of a brand, like Baby Einstein, that (in fact) does not harm our little ones is crazy. Our tax dollars need to go towards keeping pedophiles off the street, terrorists out of our country, and executive honesty in corporations. PLEASE, ENOUGH ALREADY!

I have read other mommy blogs about this subject with great disappointment. I will not even give the links because that would only promote their theories and make me a hypocrite. The recent NY Times article infuriates me. I ask these mommy's and the legal system creating this hoopla: Don't you think that the parent, not companies, should harbor the responsibility of enforcing the recommendation of the the American Pediatric Association...that a child under 2 should not watch any television? You have the power parents! If you don't want your child to watch television, then don't turn it on.

In regards to the previous claims that the Baby Einstein videos is falsely promoting its videos as educational. Are you kidding me!? When you were young, did you (and I'm speaking to today's parents) know the sounds of Mozart, Beethoven, or Bach? Did you realize the makings of Van Gough or Monet? Did you know the sections of an orchestra? Oh, I forgot to mention...did you know any of this by the age of 3? It is proven that music and visualization work different areas of the brain. Introducing these to children at an early age creates interest for future endeavors.

Truthfully, I don't want my child to be an Einstein. What I do want is for him to be happy and have an appreciation of the arts. That is what the Baby Einstein videos create. Michael Clark, Julie Aigner-Clark- I'll vow for you and the precious videos you created. A mother with an autistic child, I received the Baby Bach video as a gift from a friend. At the time, I didn't know there were problems with my son. I just knew he was "sensitive" and demanded much of my time walking, bouncing, and singing. From the very first time I put the video on, my son received the needed feedback (or input) that many children with sensory integration problems seek. He was mesmerized. You ask for proof of the benefits. I'll give you a list relating to the entire family, not just my son:

• Comfortable: The music provided a comfort for him. Paired with the visual stimulation of puppets, movement, or lighting, his senses were revitalized. Almost immediately, during his time watching these videos, he stopped his fidgeting and his crying. (happiness ensued)
• Parent effectiveness: The Baby Einstein videos gave me 20 minutes of re-grouping and sanity maintenance. I was able to sit down and eat a meal or wash my hair. You can't imagine what a much needed pick-me-up that was.
• Interest and therapy: By now, you may be thinking: "she is not a hands on mother or cares about monitoring her child's entertainment" or "she is using the television as a babysitter". WRONG again! Ask any of my family or friends and you will understand the depth of my dedication. My son is autistic, I can't afford to be complacent. Therapists moved through my home throughout the day. I learned from them and worked with them. Then I advocated for my child. I spent (and still spend) hours researching to find the keys to help my baby. I educated myself on the benefits of alternative therapies like music therapy and the sensory system. What I found out is that the Baby Einstein videos provide a priceless service to us all...a type of therapy. I admit my claims are my own and not "research-based". My point, I am not a neglectful mother. I am a well educated, family first, forget-the-wash-and-the- dishes-so-I-can-play-or-draw-with-my-child mom. My claims are my own research, and THAT is good enough.
• Educational: You say, not educational? I beg to differ. My son (at the age of 6) is learning the drums. Some research suggests that drumming is beneficial to children on the spectrum because of their sensory difficulties. His interest in the percussion (what we call, the Baby Hippo video) helped lead us to lessons. For practicing purposes, the only music I have downloaded on my iphone is that of the Baby Einstein series and music from the drum teacher. Even my husband and I are tuned into the differences of Mozart, Beethoven, and Bach. At any time my son will hear a classical tune he learned from the Baby Einstein videos, he will stop everything he is doing to listen or seek out where the tune is playing from. That is true education.
• Visual: Pairing visualization with conceptual teaching enhances retention. Add the auditory sounds of these videos to convey a feeling or funny action and this is a home run! We all need to connect the dots this way. A child with autism needs this even more. Typically, an autistic child is a visual learner. Their communication efforts are harbored so it is with visualization techniques that we (parents, therapists and teachers) are able to provide a bridge for them to learn and communicate effectively and without frustration. In their techniques, Baby Einstein is opening up these little minds to a sea of wonderful imagination, music, art, sounds, poetry etc. Explain to me how this is not educating my child?
• Routine: We all need, kids thrive on it. Each Baby Einstein video is carefully structured so the child can set its own expectations. Knowing what comes next is comforting to a child. They are learning so much, so fast that they seek out routine. The Baby Einstein videos build upon the others so that with each new video, the child still feels secure and a a sense of familiarity.

That's my "2" cents!

Autism (Savor Each Syllable)

Upon returning to school this week, many comments about how much my son had grown made their way back home. I didn't think much of it until we tried on a pair of jeans that were WAY to small.

While getting ready for swimming, I told my son that he is growing like a weed. Understanding that my comment was somewhat of a metaphor (the meaning, not the word), he smiled and came up with his own metaphors on growing:

[son, smiling] "Mom, I'm not growing like a weed, I'm growing like a beanstalk!"
My husband and I looked at each other. In agreement, we said, "that is a good one."
[son, still smiling] "Dad, you are growing like a clock!"
Again, looking at one another, my husband and I declare, "yes, that is true, time is ticking away for Dad."
[son] "Sis, you are growing like a flower!"
We can't deny that our daughter gets even more beautiful every day and nod our head with a yes.
[son] "Mom, you are growing like a wreath!"
Confused, I look at my son and say, "Like what?"
[son] "Like a wreath, it keeps going around and around."
After thinking more deeply about this metaphor, I couldn't help but realize that I do feel like I spin my wheels, chase my tail or any other familiar phrase that signifies being in constant motion and going nowhere. That pretty much sums up the life of a mother. Our work is never truly finished.

Savor each syllable, 3

Sometimes, it is not in how it is said, but that it is said at all....

In trying to use the word impossible in as many ways or occurrences as my son can, he goes on a silly rant, exclaiming:

[son], "Mom, you (pointing to me) are IMPOSSIBLE! Dad is impossible. This impossible food is crazy. Dinner is ready for impossible." You get the point. The next 5 sentences all contained the word impossible.

The irony of using this word (impossible) is that we are in a community (the autistic community) who believe that nothing is (yes, you got it!), impossible!

As a parent of a child with delayed development, I am ultra-aware of what both my children say or do. My daughter came out with this precious comment this morning:

Scenario - After getting dressed for the day, two hangers were lying on the floor.

[daughter] "Look mom, I found two hookers!"

Autism (Savor Each Syllable, 2)

Savor Each Syllable, 2

Slightly apraxic (low muscle tone around the mouth) and with his two front teeth missing, my son (diagnosed as on the autism spectrum with PDD-NOS) makes an observation:

[son] "Mom. Sssssnakes sssslither in the rrriver."
Agreeing, I say, "yes, they do (with smiles)!"

I challenge you to numb your lips with ice (until you can hardly feel them), fold your upper lip over your front two teeth and repeat: "snakes slither in the river". Now you can appreciate the effort of this statement.

Savor Each Syllable #1

The New Year has arrived and I can't be happier. Why? For the most part, the holidays are over! I tried to be that little elf that bakes cookies, wraps presents, and hosts holiday festivities, all the while caroling to the tunes of the season. The truth is, it was too much. As fast as I tried to work, I still ran out of time. Christmas morning came, Santa brought his gifts and I was off making a turkey for dinner. Though my organization provided me some sanity, I still was too busy to even sit for a minute to play crazy 8's or Yahtzee with my kids. I ask myself, how did this happen? I thought I had all my ducks in a row so that I would be able to spend the morning with the kids and make many happy memories.

During 2010, I am going to learn from others. I tend to feel that effort is synonymous with outcome. Another words, you will get out what you put in to something.

For example: I baked dozens of cookies for therapists and teachers as my way of "showing" them my gratitude. The time involved was incredible, but I wanted them to understand my feelings. Again, my extreme effort would equate to an understanding of how indebted I am to them for helping my child, right? WRONG! I learned that writing a note (which I attached to all the homemade cookies) was what made the impact. A box of store bought chocolate would have sufficed as long as that very personal note was attached.

Lesson learned...buying from the store is okay - the effort was in the personal note, not so much in the time spent baking cookies. Another lesson, there is no need to reinvent the wheel. Did you happen to see the movie Julie and Julia? It was about a girl who began a daily blog about recipes she tried off of Julia Child's Cookbook. She (Julie, the character) actually tried a new recipe each day for a year. So I was thinking I would do something similar. Beginning today, each new post will be about the words I savor from my autistic son. As a baby and toddler, we never knew if he would ever be able to communicate and when he finally broke through, it is in these words that I savor each syllable.

Savor Each Syllable - January 3, 2010

Picking up the handheld mirror in the bathroom:

[son] "I see my eraflection, mom!"

"You mean your reeflection?", I say

[son] "yes, my reeflection" "

"What do you see?", I asked

[son]"My face."

I didn't even realize that my son knew the word, reflection, much less use it in a sentence correctly. I laughed at his answer, but thought it might be good to start off with, given the New Year. What do I see when I look at my reflection? What do you see when you look at yours?

Special Moments, Gratitude and Autism

As I headed to our monthly team meeting with my son's teachers and therapists, I didn't have much on the agenda. This year, the team's open communication and investment in my son's progress is a comforting feeling. I was more concerned about how my son will react (after the meeting) when I see him for the annual Thanksgiving turkey trot around the school perimeter. This event is simply created to help food pantries with their food supply. Each child who participates brings in 1 canned good to help. Little did I realize that the day was going to bring with it many surprises.

The team meeting went well. After, I waited for my son's class to gather outside, and saw the shine of a familiar dimple. My son was reserved (as he usually is upon seeing me at school) and didn't want me to make too much of it. In seeing the shine of his dimple, I knew he was a little excited for our "race". The gobble sounded and off I went to run with my precious little turkey. He is fast! In weaving in and out of children, I had a tough time keeping up with him. It was a bit brisk, but that just added to the silliness, as I could feel the cold air creep into the cavities of my lungs. Still, I forged forward, kept up pace, and kept reminding him that I was behind him. Did I mention that I was only one of 4 mothers taking part in the run? With all the other parents on the side-lines, I felt a bit foolish, but I was not going to let my guy down. When my child runs, I run with him. When my child laughs, I laugh with him. When my child loves, I love with him. When my child succeeds, I succeed with him and when my child falls, I will fall with him. Through my actions, I hope my children can hear my message. It was a great moment for both of us.

That's not all folks! I left the school, after the turkey trot. The afternoon provided me the opportunity to look at my e-mail. Many times, e-mail does not convey your true feelings or tone. These non-verbal ques are missed because we are not speaking directly to the person who wrote the e-mail.
I knew something special was up when I saw my son's special ed teacher in my inbox. I quickly opened the note and read (in the excitement it was meant to portray) that my son read his very first book independently. What is even more precious, is that the book happened to be called, Pam's Pals. My name is Pam and I am certain that my little "turkey" that day was enamored by that fact. Not to take anything away from him, but I felt he dedicated his efforts to me. Tears flowed. Such a proud moment.

I said it was a great day. He wasn't through with his greatness... After speaking to my son's paraprofessional for a couple of minutes, she told me this story:

"I have a story about a hand painted tree hung in a hallway of an elementary school to share with you. The children painted leaves to decorate the tree. The leaves were painted all pretty watercolors and looked like real autumn leaves. Every child was asked what they are thankful for and it was to be printed on the leaf that they painted with care. As the para was hanging the leaves in the hallway on the tree, she was reading the usual things that you expect a kindergartner to say... I am thankful for Mom...I am thankful for Dad... I am thankful for my family...etc. One was "I am Thankful for my I-POD", and I almost didn't want to hang it. But then, what appears is a beautiful autumn leaf, carefully painted in watercolor, and it said "I am thankful for Rainbows". That sweet inscription was from your son. You are truly blest."

During this season for giving thanks, "I am thankful for Rainbows". Each color of my rainbow includes: Red:my son, Orange:my daughter, Yellow:my husband, Blue:family, Green:teachers and therapists, Purple:friends.

Happy Thanksgiving! Gobble, Gobble

Common Sense is different for those with Autism

Society uses the term "common sense" to explain people’s natural and innate actions. Everyone is supposed to have at least a little common sense. It is a gray area to know exactly what common sense is, but it usually equates to good judgment or normality. If a person lacks this characteristic, jokes soon follow.
Common sense can be anything from wearing a coat when the weather is cold, looking at someone when they are speaking, or walking to move from one room to the next. After all, why would you do anything else? It just doesn't make common sense.

A child with autism spectrum disorder experiences, what most of us view as, common sense differently. Texture sensitivities often lead to clothing battles, especially after the weather turns cold. When faced with the choice, common sense for those with autism or "autism" sense will choose the one with the least amount of discomfort, many times preferring the cold to a coat. If you think about it, that does make common sense. When faced with a decision, my choice is based on a weight scale of the least amount of negatives attached to each choice.

Likewise, during a conversation, social challenges make the simple act of eye contact distracting to a person on the autism spectrum. Autism sense requires that individual to look away from the person for the ability to maintain engagement and hear what is said. In other instances, many children with autism have a constant desire for input or feedback to keep focused. Autism sense means taking every opportunity to get that feedback by jumping or running, as the mode of choice, when moving from room to room.

Autism sense is the natural and innate reaction of children on the spectrum with autism. On the surface, one may label it as a lack of common sense. In reality, understanding the reasons behind such behaviors can be the most common sense of all.

"Autiscally Accommodating" Halloween Costumes

Once again, Halloween is here. As a child, I remember the excitement I had in picking out a costume, wearing it to school and out, trick-or-treating. As an adult, the stress of coming up with a "good" costume and going to spooky parties contributed to my dislike for this tradition. It just wasn't me. After my children were born, these memories of my own childhood gave me a new found excitement for the holiday.

My son,born first, generated such excitement in seeing my little guy dressed up in such cuteness. The first year, he was a pea, second year - a greaser, third year - cowboy (no hat), fourth year - caveman, fifth year - Dracula, sixth year - red crayon. I bet you can't guess what the common denominator in all of these costumes is? Aside from the pea costume (as a baby and still unaware of his autism), these costumes have been well thought out, painfully prepared outfits, "autistically accommodating". Here, I thought I was over stressing out about Halloween because of my own road blocks with the holiday. Believe me, there is no greater pressure than that of trying to create the near impossible. But the near impossible is what occurs when my child's self esteem and feeling of acceptance is on the line.

Wondering what "autiscally accommodating" means? To begin with, there are the texture sensitivities my son endures. There cannot be any scratchy material, no tags, and no stiffness. Have you looked at what the stores offer? You got it...scratchy, tags, stiffness. That leaves out all store bought costumes. Next, we cannot choose a costume that has a mask, hat, or head garnish. Are you wondering what else there is? Yes, me too...every year! Finally, after much deliberation, we come up with a costume that satisfies our "prince", but we continue to be on pins and needles until the actual moment he will wear it. Why, you ask? Because my son is a creature of familiarity and routine. The 1 or 2 times, he will actually have to dress up in his costume is filled with anxiety (for all of us). As the date nears, I usually talk incessantly about the costume and even try to have a dress rehearsal (usually unsuccessful).

The day finally arrives and it is up in the air as to whether or not "the costume" will be worn. At this point, I'm pretty much done with this whole holiday and just want to put it behind me and begin next year's search. I put on my best cheerleading face and put forth my best methods of encouragement as the day unfolds. Amazingly enough, every year my son pulls through, rises to this challenge and enjoys himself. I've only lost another year off of my life but at this point, who is counting anymore?

Bring on the lifeguard!

Autism's Parts, Mothers Meet

As I hostess for a local restaurant, a family walks in with a set of triplets. I look at the mother ("Mom-A"). She looks back at me. We immediately recognize each other. We haven't met through business or mutual friends, we know each other through our sons. They both are on the spectrum for autism and went to the same preschool for early intervention.

At the first realization of our common thread, we weren't quite sure how (or if we even wanted) to acknowledge the reason. Too late to hide, we both broke the awkwardness with more silence than conversation. We didn't need words because our eyes spoke volumes. Our connection was something most other mothers will never feel. I could see the feeling of struggle, of worry, and emotional solitude pass through this mothers gaze.

While seating her family, we quickly caught up on each of our son's progress. As I passed out each menu, I bent down to say hello to this special child. With a bit of prompting, the little boy greeted me back. What a glorious sound to hear. Understanding the hard work behind the task I just witnessed, it brought me back to the time when my own son struggled with each vowel and consonant uttered. Though still in need of hiking up the hill farther, it was certain (to me) that he would reach the top. In some respects, he already has and is simply trudging up another hill.

After my shift was over, I exchanged information with "Mom-A". A week passes and I have another ironic encounter with "Mom-A". This time, I have my son with me and she is able to see his progress. Instantly, I see the joy she had the previous week, drain from her and become a feeling of solitude. My son is not as severely afflicted as "Mom-A's" son. My heart ached for her. I knew that feeling when I would be at a birthday party or school function with my son's class (most typical peers). It was the feeling of wishing my son could play or run or hop or act as the other kids and then hating myself for having such a selfish thought. This mother was comparing what my son could do to what her son couldn't. I knew it and I knew what she longed for, and I knew how feeling it would torture her as if she wasn't loving him enough for who he was. It is irrational to be so hard on ourselves but that feeling is easier than allowing ourselves off the "hook" during such times of inadequacies.

My next encounter happened while I was waiting for my daughter to finish a gymnastics class at the local YMCA. I was making casual conversation with an employee and talking about my son and the difficulties in advocating. Feeling compelled to join in, a mother ("Mom-B") sitting across from me apologized for the interruption but acknowledged her struggle with the school system as well. Her 7 year old son is on the spectrum for autism and pulled him from the system in order to be certain he would get the services he was desperately in need of. She praised my efforts and we look forward to our "mini" support time in the coming weeks.

After thinking about this conversation, I smiled at how driven "Mom-B" was to add to what I was talking about. It was exactly what I would have done. There are so many times where we can't join a topic of conversation because we haven't experienced the same things that other parents have. In this case, when "Mom-B" finally hears the connection of her experience with mine, she had to take the leap. I understand that need for validation and camaraderie.

The two encounters I had with mothers of autistic children are very different. I'm not sure why having such encounters left me with a good feeling but I venture to guess it has something to do with the feeling of togetherness and that the whole is only as good as the sum of its parts. A quote that can be deciphered a number of ways, but this is the way I think of it:

Autism (and all that,that means) can be dealt with if we lean on others who may be in the same circumstance. There is power in numbers and a sense control takes over when we (the parents) may feel like our control has been stripped away... Proof that control is still in our reach. We may just need each other to grasp it back.

VMA's, Taylor Swift, and Stripped Moments-Autism

Shocked, Humiliated, and Short-changed...

This is what Taylor Swift may have felt during last nights award ceremony at the 2009 Video Music Awards. I know I felt it along with her.

In continuing my efforts to learn about the interests of the current teen population, I was happy when the young female performer won. After Taylor Swift began to speak of dreaming of that very moment, her "moment" was so rudely interrupted by a person with a different view. I first became appalled , then saddened by the event.

What gives another person the right to judge someone? What gives another person the right to think they are above all others? What gives another person the right to publicly humiliate someone? What gives another person the right ?!!

I sat for the rest of the show upset and uneasy. I thought I should really get a grip on reality. After all, I don't know these people and I was in no way directly affected by the rejection. Then, Beyonce won and, very appropriately and eloquently, gave the floor back to Taylor Swift. It was a great gesture. Unfortunately, I think the moment had already been stripped away.

My mind was so unsettled. I realized that it is because I truly understood what Taylor Swift felt in that "moment". With even more intensity and realization, some of my son's (who is on the Autism Spectrum) moments are stripped away. The reasons may vary and can be just symptomatic of being autistic, yet others(in the future) will occur because of the lack of educational enlightenment. Regardless, it is not fair! I understand that we cannot change what we cannot control, but we can change and impact what we can control (education).

For most parents, there is an assumption early on (before birth) of what your children will accomplish. You assume your child will have a voice and you will hear them call you mommy or daddy. You assume your child will play by himself and with others. You assume that your child will complete tasks independently so you can cheer for them and be the "proud parent". These are moments for parents to enjoy. They are affirmations and "fruits of labor", rewarding parents for their dedication. Did you ever consider or can you even comprehend, that despite all your efforts, these moments could be stripped from your enjoyment pleasure? For parents with children on the autism spectrum, we are stripped of the "typical" developmental moments. Similar to Taylor Swift, we may not get that moment to shine and hear our child call out mommy. Our child is struggling to communicate. What may seem easy to most of us is actually a complicated series of processes and oral motor movements. Those of us lucky enough to experience that first speaking moment or the moment we are called mommy, are usually in a moment all by ourselves because it happened later for our child. Our friends have past that excitement. Though I will admit that my appreciation for such moments may be heightened, it still leaves us in a kind of group that has been "left behind".

This leads me to my autistic son's stripped moments. He is really why I was so upset after seeing VMA winner, Taylor Swift, publicly put down. She worked hard and didn't deserve that kind of treatment. It was like watching my own child up on the stage. Can you just imagine how her parents must have reacted? The theory is that if you work hard, you will be rewarded, accepted, and make people proud. The theory doesn't state that there might be a couple of bad "eggs" that will try to take your thunder away. Most of us do overcome these little nuances, but it doesn't make it right.

I wonder if there will be a Kanye West getting in the way of my son's, self-satisfying, moments? I already despise this imaginary person and worry because I'm not sure how many little nuances we can actually get past without it effecting my son's self-esteem and social placement in society, something that is so difficult for him to work through as it is. I am hoping that my son does not realize that some typical moments his peers enjoy, he has yet to experience. His ignorance, I am certain, is limited in time. Soon (if he hasn't already), he will notice in phys. ed. that his peers are able to play the games better. Soon, he will notice the frustrations of others or the strange looks as he talks incessantly about one particular area of interest. He only does this to engage that person. It is his way of socializing. Without peer education, the Kanye West's will capitalize on such a weaknesses. His moments of accomplishments may be stripped.

I can only hope that there will be a person who will allow my son to enjoy his moments of success, as Beyonce did last night. This will not happen without his peers understanding and reaching out to him. Beyonce understood what it felt like to receive a VMA for the first time. She wanted to give that "moment" to Taylor Swift. The typical teen may not even realize their own "moments". Will they know to support an autistic peer experience a moment? If fact, because most moments will have passed for the typical peer, the Kanye West's in the world may feel the need to publicly humiliate our children for their delay. We need a teen educational ambassador. Taylor Swift, now that you can empathize, we need you to take a stand and help us with our mission so that our children don't get their moments stolen from them too! Send me a tweet: http://www.twitter.com/pressdough .

A Parents Prayer-First Day of School

Dear Lord,

Today I lend my precious child out for the benefits of education, experience, and socialization. His anxiety is heightened along with mine. I ask you to watch over him and give him the confidence to embrace his new friends. I ask for your constant encouragement so he continues to exert his best efforts, especially during his most challenging moments. He has autism and those moments are so important to his progress. He needs that extra push and strength to endure, rise to the challenge, and overcome.

Please engulf him with our love so he will feel an ever present sense of security in knowing we are with him even when he can not see, hear, or touch us. Please grant him the self-esteem necessary to look past his own weaknesses (disabilities) and frustrations and realize what superb strength and worth he has.

Lastly, please give him special assistance during those endeavors he struggles with the most(you can input your child's own goals):

• Peer socialization
• Fine motor activities (writing, creative arts)
• Integration with sensory processing to help limit distractions
• Courage to lead and be his own person

Above all else, keep him protected in your arms. In your name, I pray - Amen.

Dining with Autism

September 28th is Family Day

CASA promotes dining together

An important part of my day is our family dinner. I will plan meals a day or more in advance (sometimes) for the sole purpose of a family meal. If you are a parent, I'm sure you have heard about the importance of dining together. I buy into the fact that sharing meals together creates family cohesiveness and opportunity for communication. I have no idea if our meals will prevent drug addiction or deliquent behavior during my children's teen years. I sincerely hope that I won't need to address these issues, but for now I'm content with my reasoning being completely personal and family oriented.

Having an autistic child with a very limited diet makes these dinners very challenging. My son is not on any specialty diets or anything like that. Our problem is that he only eats a handful of foods. My advance planning for each meal is primarily due to the fact that my two children allow little time for meal prep. I usually steal moments and stagger my efforts, throughout the day or days, so that it will all come together by dinner time each night.

Wondering what takes so long? No, I am not preparing a nine course, Italian or exotic feast. Usually it is just simple chicken dishes, casseroles and normal home cooking. Many parents with autistic children perform a juggling act to get, not 1 meal, but 2 on the table at the same time. The specific diet requirements can make meal preparation and timing very hectic. Add in the demands for bathroom assistance, sibling referreeing, boo boo's, messes that need cleaning, etc. It is amazing that most of the meal isn't burnt by the end. Meal prep is a high stress job in my household and worth the effort. I guess my reason is simple. My son can finally sit down to eat with us, with very little outbursts of emotion and necessary distraction. Meals weren't always this "easy".

As a baby and in a high chair, my son (who is autistic) would need quiet time to eat to get through his meal successfully. If there were any distractions, or people sitting at the table that were unusual, he would cry. Even conversation had to be kept to a minimum because it proved to be too overstimulating for him. As a toddler/preschooler, my son had a hard time sitting at the table at all. He couldn't sit still for more than a couple of minutes. I always fixed a plate for him, but more times than not, he would need to leave. Understanding his difficulties, we allowed his departure and hoped, with routine and time, he would begin to share in our family dining experience. Gradually, we introduced some favorite toys to bring to the table to provide him with self stimulating feedback. They kept him motivated to stay at the table longer, while satisfying his need for input. You may think such a distraction defeats the purpose of family dining, but when you are dealing with a child on the spectrum with autism, there are no rules. They need what they need and I provide my son with what I call "tools" to get through a typically normal event. In this case it is eating dinner at the table.

When I introduce anything to my son, I guess I have a very distinct method that has worked for him. I begin by establishing the routine, then the expectation with supports, and finally the action or behavior without supports (if possible). Let us fast forward to how our meals are now. My son expects family dinner daily. As I begin my meal preparation, he (relentlessly) begins his repetative questioning, "is it dinner time, mom?" He is a full participant in table setting and clean up. When I give him the go ahead, he runs through the house shouting, "DINNER TIME! DAD, DINNER TIME!"

Though he is allowed to be excused after his meal, my son confirms the importance of our family meals everyday as he runs through the house so unbelievably excited to eat with us. We have weaned the toys for input and enjoy amusing conversation as only a 3 and 6 year old can supply, as well as the necessary clinking of glasses for toasting.

Cheers to you too!

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).